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Check NEWS for latest month updates! July 16, 2008 - What a difference a year makes!! - This time last year, I have to admit I was descending into despondency. Jonny had been in hospital for almost two months following his heart surgery (8 months in total at that point), and there was no end in sight. Our little family was under a lot of strain - emotionally, physically, financially and spiritually. But along came the Jon-a-thon, a benefit that my pal Michelle conceived and that she, Jane and Dawn made happen - with a lot of help from a extraordinarily kind, generous, sweet, compassionate community. During the weeks prior to the Jon-a-thon, as the line-up, well-wishes and silent auction items started to pour in, we found ourselves giddy! We shared each new email about the event with the other parents on the cardiac ward - people who were going through the most dire prognoses for their children - and they high-fived us through the halls and vicariously experienced wonder and joy. The night itself was a revelation. We got to publicly thank our NICU nurses and NP's, we drank in the love, the brilliant talent, the caring. We saw friends who we had not seen in months. We got out of the hospital - TOGETHER! We laughed, and in the first moments of the event, as Sho Mo and the Monkey Bunch and the entire audience sang "Jonathaaaannn", we cried. Days later, Jonny, who had been languishing and weighed about 10 pounds, began to rally. Janis could not believe that it was due to anything but the surge of loving energy, hope and determination sent his way that night. I believe it too. I also now believe that god is in the love and kindness of ordinary people. In all of you. The funds raised have supported us in this year in ways we could never have imagined - from medical supplies, to medicines, to respite care, babysitting, clothing, and basic life costs as I have continued to be at home taking care of Jonny. We are also happy to have been able to donate a portion to the Sasha Bella Fund. We've also joined an NICU family care committee which meets monthly to brainstorm ways to improve upon the excellent care Jonny received in NICU. Today, Jonny is dancing. He waves his arms, intertwines his fingers and stomps the floor. He screams with joy, pushes his toy bike, talks to Eli's pokemon. He hugs us and kisses us, he lights up when he wakes up and sees Eli. Eli has blossomed. His level of anxiety has diminished, while a new responsibility for his baby brother has emerged. His imagination is still a wonder, and his sharp and ready mind is a constant source of delight for us all. And guess what? He's really good at baseball! Janis has started an exciting new chapter in her life and career - undertaking a learning curve that would have been mentally and physically impossible even months ago. She's damn good at it. We are so proud of her. I'm writing a column for the Star that means a lot to me, and starting to work on new ideas. While I'm still Joanthan's executive assistant, I'm looking forward to reemerging artistically. Although we've been frequent flyers this year at Sick Kids, and Jonny has a major surgery coming up this fall, we have finally had him at home longer than he was in hospital. He is our baby now. We are a family. Please take a moment to look at the Jon-a-thon photos on this website, and the new pics too. And please feel our deep gratitude and love, wherever you are today. Much love, Diane JULY 6th, 2008 - CABIN VACATION - We have just returned from almost a week up north at our magic cabin in the bush. It was a magnificent adventure. We saw moose prints, BEAR prints, deer prints. Eli found and named salamanders, frogs, toads and slugs. We played chess and archery and had long tromps in the woods and swims in beautiful lakes. Jonny did so well. It really is a new era! We are so grateful to have our first decent time away together as a family since before Jonny was born. Thank you to Daddy David for joining us on our last day up there and having such a fantastic time. Janis promises to post some pics of the cabin and of Jonny's new button today. Jonny is doing really well. He's verbalizing more, playing, sharing his toys with Eli, drinking more liquids. The new button is more comfortable for him. We're still skipping one bolus feed a day and replacing it with an oral feed and so far it's going well. Eli's new favourtie saying is "what in the heck of the world?!" And he told me that he saw himself in the mirror and noticed that he is kind of cute. I have to agree. p.s. I wrote this column about Oliver Schroer, a heart-stirring composer and musician who was facing down leukemia. It came out in the Saturday Star Living Section on July 5th. I just found out that he died on July 3rd. I was very moved by meeting this forceful, generous man. His music is available on the Star website. Up until the day he died he was working on new projects and helping the Star get his music to their readers. Please take the time to listen to it. It's beautiful. http://www.thestar.com/living/article/452374 JUNE 26TH, 2008 - JONNY'S ROOM - I forgot one important bit of news. Jonny is now sleeping in his own room!! He is finally out of our bedroom. Either Janis or I usually ends up spending part of the night with him when he wakes up in the night, but he is happy and content in his own space, with his own little bed (not a crib). JUNE 25TH, 2008 - GRADS, AND BUTTONS - Sorry we've been so out of touch! Janis has started her new job and it's an adjustment for her and our family so there hasn't been much time to write. The jury was out on the button but, after making many mistakes, we are pleased. No more taping a tube to his body, no more dangling tube and raw skin - the button is much gentler on him. The only drawback is that it's too big for him (it moves around a bit too much, and has been hanging out of his skin and catching on his shirt) so on Monday I will take Jonny back to Sick Kids to have it replaced with a smaller size button. The other big news is that we have begun to try and scale back on the G-tube feeds. The last few days, I've been skipping one G-tube bolus and replacing it with oral feeds - soup or creamy yogurt or ice cream that Jonny will swallow. Today he had chicken soup and then some of a bottle. By skipping the mid-day G-tube feed, and feeding him orally after nap (3:30ish), Jonny is hungry and more willing to swallow. He's done well, but the challenge is to find liquidy things that he will want to eat a lot of. We dream, of course, of no tube one day, so this is a step in the right direction. We will monitor his weight and keep this up for a couple of weeks, and then see what the next step will be. Today was Eli's last day of senior kindergarten. We are so proud of him. He's learned so much and matured greatly. He's had his brother home, finally, with all that entails - a huge adjustment. They adore each other and Eli is very protective of Jonathan. He'll often say to me, "Mama, can you watch Jonny for me??" I am going to get Janis to post some pics of Eli's graduation and of Jonny's button. She is so busy and I am also very proud of her. JUNE 10, 2008 - Button - Jonny got his new tube, the button, put in by Julia, the G-tube Nurse on Monday. He was very afraid of the procedure, so much so that he vomited. How could he know that it would be fast and not hurt much? Julia gave Janis and I a course on the new tube. We got home with him and felt fumbly - immediately making every mistake in the book. Today I feel like we'll get it - although there are things to really watch out for. The button is a bit too big for Jonny. He seems to be in between sizes. In order to not have to replace it, I (Diane) had to adjust it today. In the process, guess what? It came out. So I put it back in and reinflated it with water. The good news is that I could easily put it back in. And the skin around it already seems a bit less raw. Jonny seems a bit perturbed by the button. While it's fantastic not to have a big tube hanging down, it is odd to have a largish device sticking right out of his tummy. I hope he'll get used to it soon and things will stabilize for all of us. The jury is still out but we'll keep you posted. He also had three appointments today - speech and language, development, and OT. He has said the word "up". He's developing well, his eating is pretty status quo. JUNE 07, 2008 - Sasha Bella Walk, Birthdays and Buttons - Tomorrow morning is the Sasha Bella Walk for Sick Kids and in the evening is the Families In TRANSition Book Launch event. I know Jonny and Eli will really enjoy the walk especially since Sho Mo and the Monkey Bunch are performing at the BBQ. We thank everyone who sponsored and supported us. Together we raised $1226.10 and in total the walk so far has raised over $37,000! Perhaps we'll see you there. Geminis - Today we wish Ruth Marshall, Daddy David, Uncle Daniel and Alisa Palmer very Happy Birthdays. In addition Auntie Laura and Cousin Jordan will celebrate on the 12th (what's with the plethora of Geminis?). All are very special people to us and our children - and not one looks a day over 29! And one more piece of big news....Diane called the G-Tube nurse on Friday to discuss Jonathan's tube site and see if there was any date set to replace his current tube with what's call "the button". We don't mean to surprise you but the appointment was booked for 8:00 am Monday morning! She has to see him first and take a look at that site and if it's not too infected or raw, they'll go forward. If you didn't catch this installment of Diane's Toronto Star column "In the Thick of It" feel free to enjoy here. JUNE 04, 2008 - Apologies - Sorry, we've had technical difficulties that kept the website down for a few days. Thank you to those who sent notes of concern. All domains and pointers are now renewed and we're happy to be back up and running. The big news re: Jonny is that he's doing generally really well. He just has some unfortunate recent chest congestion that we're watching closely. The new g-tube site remains infected which just makes us look more forward to getting that "button" sometime in July. Next surgery still on schedule for November. He's still not talking but verbalizes more and more. On the parental front I'm pleased to announce a big change: As of June 17th I will be moving jobs to work for an amazing Foundation - The Stephen Lewis Foundation - working with absolutely incredible people in the Grandmothers To Grandmothers Campaign. I will miss all my good friends at CTYS - it's a great children's mental health centre with excelelnt and dedicated staff - but am very honoured to be joining the team at The Stephen Lewis Foundation and excited to open a new chapter in life. On another note we must thank Bruce MacNeil for taking some amazing pics of Jonny recently - check him out at our local coffee shop (Jet Fuel) where Diane and Jonny apparently hang out causing trouble while Eli is in school and I'm working... http://brucemacneil.com/straws/
MAY 25, 2008 - Remembering A Year Ago - Last year at this time, Jonathan was in big trouble. he'd had his first heart surgery on May 22nd and just couldn't seem to recover, eventually going into failure and needing a second surgery to permanently cut his pulmonary valve. We were scared and bewildered - watching what felt like "a train going off the rails". For the third time in his life we were afraid of him slipping away. It's unbelievable to think about it now. I'd never want to go back in time. Gratitude is all I have for his life now. For our life. Never would I imagine that he'd be swimming and running and enjoying life (esp with his brother) the way he is now. Next week, good friends Ruth & Rich have generously bought Diane and I a night in a hotel. It will be the first night away from both boys since Jonathan was born. I know we need some time away just the two of us, and we're really looking forward to it, but it's a bit inconceivable at this point. Thank God for Auntie Kelly and Uncle Daniel who can really handle these two boys and all their issues. I know they'll be in good hands so I'm going to try to relax and enjoy (calling in every two hours, of course). I also wanted to send out a bit of love and comfort to Heiko's parents and family who, I'm sure, are also going back in time this weekend - very hard memories, very painful anniversary of Heiko's diagnosis and first hospitalization. Our thoughts are with you. Here is Diane's article from the Toronto Star yesterday for those that missed it: In The Thick of It By Diane Flacks Patient turns medical misadventure into script for health-care providers and medical students MAY 22, 2008 - Anniversary of Heart Surgery - A year ago today we were preparing Jonathan for what we thought would be a routine open heart surgery (if there is such a thing). I think back on that time and am so grateful that Jonny got through that surgery, survived the heart failure, managed the second surgery, overcame the chylothorax and resisted all the infections and other problems. I am glad to be far away from it all. I wish love and strength to those who are in the midst of the hard times now, in particular I think of the families of baby David and baby Amy. And my thoughts definitely go to the family of little baby Amelia. Our sweet friend and neighbour in 4D. Love to all the nurses and doctors in CCCU and 4D who made life somewhat bearable during this time. I know you're out there still doing your heroic work day after day. MAY 16, 2008 - Walker - Jonathan has become better walker. He has more confidence on his feet and almost saunters sometimes. He loves playing hide & seek, chase me, smack mommy's tummy, fall back & tickle my tummy, and a game David invented with Eli called "Sweet and Peeyoo" (he holds up his one foot and then the other and laughs at the reaction). Despite the fact that he still only has two words ("mama" & "book") he is very good at communicating. He likes to puts all different kinds of food in his mouth and chew and then spit it all out. And he knows how to give wonderful, head snuggling hugs. He still has a killer two-stage smile that wins over many hearts (smile first, then crinkle up your eyes and smile wider - gets them every time). Our little baby is really coming along. MAY 13, 2008 - 18 month check-up - Jonny had his checkup and booster shots. The pediatrician would like us to increase the volume and speed of his boluses. From 100cc's over 20 minutes, to 200cc's over half an hour, and eventually faster. We think he can handle this. The ped was also a bit concerned about his weight - in three months it's basically the same, although he grew in length. We aren't as concerned because Jonny lost at least 500 grams in the hospital (when he had the rotavirus) and has gained it all back in two weeks. The focus is still speech and eating. Otherwise, he's doing well developmentally. His G-tube site is starting to heal a bit. We'll wait until it's better before moving to the button. Yesterday I (Diane) was outside with Eli and Jonny, and ran inside for a second to grab the diaper bag. Eli yelled at me, "Mama, don't let Jonny go on the road." A protective, wise older brother! MAY 11, 2008 - Lesley Parrott - A very powerful article by Diane this week in The Star: In The Thick of It By Diane Flacks Time helps, but the pain never ends Lesley Parrott didn't just survive the murder of her daughter; she embraced a truer life MAY 11, 2008 - Happy Mothers Day - To all the mothers, grandmothers, soon-to-be mothers, sisters, aunties and friends we know. To those that have children, may have children, have special-needs children, and/or love and care for other people's children - Happy Mothers Day. The world is a better place because of you. And to those who've lost children on this day, we send you strength until tomorrow. Good night and God Bless. P.S. Jonny has a ped appt tomorrow morning. Will give a medical report after. MAY 8, 2008 - Colds and tubes - Both Eli and Jonny have colds. Yesterday and today they were both home with me (Diane) making each other laugh. Despite the unpleasant discovery of icky kleenexes in the couch, it was very special. Jonny's tube site is still ugly and sore. We're doing warm saline soaks and baths. The nights have not improved, unfortunately. Jonny still screams and cries. Although now we wonder if the cold that has just appeared is contributing to it. And some of the "something" is making it's way out of his tummy again. I almost missed it these last few weeks. MAY 6, 2008 - Rough Nights Again - Poor Jonny. This new tube is clearly making life hard for him. He's much better during the day but he screams at night. The site is beyond ugly (lumpy, red, raw and bleeding). He seems to have cramps and pain at night that cause him to cry and scream out terribly, without stopping. Also, the tube itself really pours out. Like, if it opens for any reason, even for a short time to,say, give him a flush, his formula or meds soak the bed. It seems too much to me but D. says it's the new bigger tube. She and I are back to splitting up at night (one stays with Jonny and one goes to the spare room) because whoever has been with JJ the last nights get NO sleep. I don't know what to do. Is this normal adjustment to a larger sized tube or is something wrong? Anyone out there seen this? I'm defintely calling Julia, the G-tube nurse, tomorrow. May 5, 2008 - New Tube at IGT - Jonny is doing great. He's gained all his weight back, and is happy, resilient and sweet. Today we had to go to Sick Kids to get a bigger G-tube in preparation for having a "button" - which is a different type of G-tube. The benefits are that the button sits close to the skin, doesn't require changing at IGT and may help his tube site heal. The trip to IGT was traumatic for Jonny as usual. Especially the part where I (Diane) betray him by putting on the gown, hair net, and lead apron and then help to hold him down. But Dr. Temple inserted the new tube incredibly quickly and we were done. The old tube looked awful as it was discoloured by all that brown blood that Jonny was vomiting when he was so sick. Glad to be rid of that! APR 26, 2008 - Sasha, Heiko & Ian - I am happy to report no vomiting last night by Jonathan. Diarrhea still, yes, but no more vomiting. So that is movement in the right direction (so to speak). Diane's article about Sasha Bella and her family is in the Weekend Living section of the Toronto Star today. Click here to read. If you scroll down to our Apr 10 posting you can also see and/or support our commitment to the Sasha Bella Walk on June 8th. On a sad note, today is the birthday of Heiko, our dear little friend from Sick Kids ICU who passed away on Jan 3rd. This will be a tough day for his parents and family. Gabrielle, Don, Heidi, Christine, Lang...we are thinking of you and send love and strength. Today is also my brothers birthday. Happy Birthday Ian. We'll see you tomorrow at Lick's. APR 25, 2008 - Rough Night & Sabba's 70th Birthday - Jonny was up a lot last night with numerous bouts of diarrhea. He got really thirsty too and gulped water and then vomitted a bit (more laundry :)) but he is resting now, having tolerated several boluses and sips of water. Eli has been very protective of him, while still finding the pure absurdity of it, "Mama, can you move this vomitty baby off my chair?" We are watching Jonny very carefully and I'm trying to keep him hydrated but not overwhelmed. Today is also my Dad, "Sabba Cy's" 70th birthday. Sabba is an incredible grandad to all his grandsons, and we owe him a huge debt of gratitude and love. APR 24, 2008 - HOME - After handling two small boluses this morning, Jonny was deemed fit to discharge! Eli hung out with us all morning at Sick Kids and was great. We came home and Janis and Jonathan slept for two solid hours. Jonny is still very weak, not able to stand or walk yet, thin, and suffering from bad diarrhea. But he's home. We have some recovering to do, and need to be delicate. It feels amazing to have us all together in one home again. I am so grateful to our incredible support network once again! Also to CTYS, Janis' work, who've been kind and understanding. APR 23, 2008 - later, starting to turn around - After spending a long night with Jonny, Janis went to work today. I stayed with Jonny while my parents and sister and her kids hung with Eli (THANK YOU!). Jonathan went from very listless and vomiting this morning, to wanting to read and interact, and then getting some small, diluted boluses of feed by this evening. We hope he'll have a restful night and that he will be okay to continue his recovery at home tomorrow. APR 23, 2008 - Still on 7C - Jonathan is doing better today than yesterday but is still not ready to be discharged. They are not sure what he has but the clues point to Rotavirus or some other gastroenteritis. We'll know for sure when the stool samples come back from the lab. He has regained a bit of his personality today which is nice. He even smiled a (somewhat reluctant) smile at my peek-a-boo this morning. But he is sad and weak and is still vomiting and has diarrhea. Poor little guy. He can't leave until he can hold down fluids and get off the IV. We're hoping he'll be feeling better tomorrow and can come home. APR 21, 2008 - Back in Hospital - Jonny is in hospital tonight. He started vomiting on Sunday morning and couldn't stop. He and we were up all night Sunday night. He was so thirsty, he would gulp water and then vomit. By morning, his vomit was brown with dried blood, which, as you can imagine, is concerning. Janis took him to emerg at 9am and they are still there, waiting for a bed. He was given an IV for fluids and meds to stop the vomiting and some to help with the bleeding. They are not sure what he's got, so he's being given anti-biotics and tested for numerous things. When he arrived he was severely dehydrated. And his heart rate and breathing were too high (dehydration can cause that - we have to watch out for his heart defect). He's definitely better now (7:30pm) than he was this morning. We'll keep you posted. It's hard when he cries for water but he can't have any (because we don't want him throwing up anymore). Please send peaceful vibes to Janis. We had some unpleasant dejavu as I left to go home to Eli tonight, leaving her and Jon. Luckily, Heather, Netty, Kelly and Dan came by. APR 19, 2008 - Pedeatric Eating Disorder Specialist - We had a great meeting today with Frances from Centennial Health and Joanne, the Texan-born tiny toughy of a speech and feeding pathologist. She thinks Jonny is a great communicator. So good that he doesn't "need" to talk. She'd like us to make him need to talk more. For instance, if he makes a sound with a sign (as he does with book), acknowledge the sound, whatever it is, and give him what he wants because of the sound he makes, not the sign. She thinks he is developmentally excellent, very on track for 18 months, sweet, responsive, alert. Great news. For feeding she would like us to try foods that he has to work at getting around his mouth - not with "grit" or texture because he is cautious of texture - but sticky like cream cheese, creamy peanut or almond butter, nutella, cheez-wiz (!) or any other smooth sticky cheeses. She notes that he's cautious with swallowing small amounts of water. He also makes sounds in the back of his throat a lot. She recommended he have a swallow and feeding study done by a ear-nose-throat doctor to see if there is something physiologically going on back there. She would also like an audiology test. All that said, she was impressed with his love of crunching, his chewing and his amazing and intense interest in all foods. She believes that he will eventually swallow as he is doing everything up to that point. We hang hope on those words. Oh, we were talking about dissolvable solids and I (Diane) thought of cotton candy and she actually liked that idea for Jonny. What a diet he will have: Cheesies, cheez whiz and cotton candy...yoiks... APR 14, 2008 - Gen Surg Follow-Up- We had a follow-up appointment with Dr Fecteau this morning. She thought Jonny looked great, the omphalocele felt fine to her, she was satisfied with his g-tube feeds, and glad that we're working on oral feeds. He weighed 9.2 kilos by their scale - 20 pounds! The "something" is still coming out of Jonathan's tummy. Dr Fecteau cut some off and pronounced that there is still more in there and it will make its way out. We have another follow-up in 4 months and that's when we will discuss when Jonny's closure surgery will be - probably close to his second birthday. Dr Fecteau didn't like the look of Jonny's G-tube site. It's red and sore looking again, so we have to do more saline soaks. She also suggested that he's ready for a "button" which is a different type of G-tube that doesn't hang away from the body as much as his current tube. Apparently the maintenance of the button is easier for parents and if it comes out it doesn't mean a trip to IGT - it means an appt with a G-tube nurse or specialist. So, in about two weeks, Jonny will go to IGT to get a bigger form of his current tube (to prepare the site for the button). Then three weeks later, he can get the button! We have to go for a special course on the care of the button - something new to learn and adjust to, but we hope it will be better and safer for Jonny.
APR 12, 2008 - Janis' Award! - I am so proud of Janis. Each Year brilliant comedian and producer Maggie Cassella's We're Funny That Way Foundation presents the Salah Bachir Award for community service. It is awarded to a person who's dedicated themselves to helping lbgtt community. This year the recipient is Janis Purdy for all her innovative work for youth over the past twenty years!! The We're Funny That Way festival is always an incredible, not-to-be-missed event chuck full of hilarity, and proceeds from the festival help the foundation fund many non-profit organizations in our community. April 30th is the big fundraising gala with a fantastic international line-up of performers (including moi). Check out www.werefunnythatway.com for lots of info and tickets! Come and join us to celebrate Janis and the great work she does! Apr 10, 2008 - The Sasha Bella Walk - Diane, Eli, Jonathan and I are participating in the 2nd Annual Sasha Bella Walk this June 8th in Toronto's Cedarvale Park. If you read this website you know that we support the Sasha Bella Fund at Sick Kids. For me it's the best way to help Sick Kids - the hospital that was Jonathan's first home for 9 months and continues to be his second home - and to support the compassionate and skilled people who work there and took such good care of him. Even though Sasha and Jonathan have/had different fundamental issues - Jonathan's being a giant omphalocele and Sasha's being Alagille Syndrome - they also had things in common. Both Sasha and Jonathan had/have serious cardiac problems and both spent an awful lot of time in intensive care units in the hospital. We have become quite close to Jonathan Blumberg and Pamela Stein, Sasha's parents, and know that they are committed to the same Sick Kids causes that we care about - family-centred care, palliative care, education across the professions and improved quality of life for long-term patients and families in intensive care units. We know the money raised will be used well and we are proud and happy to participate. If any of you would like to participate with us in the Sasha Bella Walk please go to sashabella.com or sashabella.blogspot.com to learn more and register If, on the other hand, you would like to support Diane or I in our walk there is an easy way to donate on-line through our personal fundraising pages. Of course like any healthy and mature couple, we are competing to see who can raise more money so you'll note I'm listing my page first (hint, hint). Thanks for reading. Janis's page - http://my.e2rm.com/personalPage.aspx?SID=1758668 Diane's page - http://my.e2rm.com/personalPage.aspx?SID=1758571
APR 8, 2008 - The Jon-a-thon Fund - A quick thank you. As Diane's work opportunities wind up (slowly) and I am facing a full work load come June we're looking at how much time we can afford in terms of respite care and support and are very grateful to still have funding through the Jon-a-thon Fund. As Diane has said on numerous times, in her succinct and delicate way: "We'd be up sh#&s creek without that Fund". Thanks again to everyone who contributed. Also, a big congratulations to Drew and Jane B. who are the new parents of a beautiful baby girl named Sasha. We are very happy for you and can't wait to meet her. APR 5, 2008 - New pics- Check out the new pics on the photo page. We are soaking his G-tube site with saline 2-3 times a day to help it heal and it seems to be a bit better. Jonny is now getting his 100cc boluses in about 20 minutes! He is really full of beans and idiosyncracies. He loves his brother and he is putting EVERY kind of food in his mouth. His OT thinks he just has a pronounced gag reflex and that's why he won't swallow foods with texture. She's really impressed with his interest in food and has hopes for him. His nights are still not great. Up crying 4-5 times a night and a tossy-turny noisy sleeper. Better than with the GJ, though. He's making a lot of different vocal sounds, including a pig noise, and loves yelling MaMAA. As for him getting around, I've decided upon observation that he walks like a cross between an old man and a chorus girl. And yes, the "something" continues to slowly work it's way out - very painfully slowly - millimeter by millimeter. We are torn about whether to cut the edges as it emerges. Part of us wants to see how big it actually is in the end. MAR 28, 2008 - Update on the "Something" - The short story is all is okay. Dr. Fecteau examined him, cut some of it off and pronounced that it was a piece of his silo (that's from over a year ago!). She doesn't know how big or how deep it goes. She felt it was not a good idea to cut it out since his body is already in the process of ejecting it. She tends to take a conservative approach which we greatly appreciate. We're to soak it with salt daily and encourage the process but allow it to happen slowly. Gross, gross, gross. But at least he's okay and she's not too worried about him. I'm sure she's seen so much in her day that nothing really phases her. BTW - she has just returned from a leave of abscence and was really pleased to see that he's walking. We asked her about his next surgery and she is still thinking closer to his 2nd birthday. We'll have a longer exam with her April 16th. MAR 27, 2008 - Something Working It's Way Out - For months and months Jonathan has had a patch on his omphalocele that won't heal. Red, scabby. We treat it and the scab wears off and then comes back. No healing. But we've had the same problem with his G-tube site and thought perhaps he just has sensitive skin and that it would heal in time. This morning in the bath Jonny was pressing on this spot, as he often does. Then he took Diane's hand and put it on the spot. Diane noticed something white on it. At first she thought it was granulated skin or puss but on closer examination it looked....like something else....something coming through the skin. Something like netting or surgical gauze. She called me told me and when I got home from work the first thing I did was take him to bright lights. No question - it's not skin, it's something else. I got some tweezers and gave it a small yank. Not only did he scream but it really became clear that this thing is not small and goes deep. I really nearly barfed. I immediately began packing him up to go to emerg right then and there (this was about two hours ago). I didn't know what it was but there was a foreign object working its way out of my sons abdomen and I wanted it out NOW! After talking with Diane I realized Emerg might not be the way to go. We called our surgical NP Nicole and she confirmed that this was something for the surgeon to deal with and we could be at emerg all night and instead she would arrange that we could instead bring him first thing tomorrow (8:15 am) to see his regular surgeon (Annie Fecteau) who will deal with it immediately. I made a joke to tell the surgeon that it looked like the corner of a hospital ID card and we could only make out the letters eau, but the truth is, I am completely horrified that something has been kind of left in him, and I'm afraid to find out how big this is and how deep it actually goes. Tomorrow Diane will get up early and take him to clinic first thing. I'll take Eli to school and then race over to meet them. This poor kid! My god - next thing you know we'll see the outline of a pair of scissors on his next abdominal x-ray! MAR 24, 2008 - New Pics - Jonathan and Eli have had a busy, happy weekend with two fun holidays: Purim and Easter. After a Purim party Thursday night at synagogue we left for time away at the cabin with Auntie Kelly and Uncle Daniel. Both kids had a great time, especially at the farm dancing to guitar music and the ever popular Easter morning chocolate egg hunt. I will report that the chimney had bent right over with the snow load they have up north - it's got to be four feet high at least. Prime for tobagganing and snow-shoeing, but not great for roads and roofs. Jonathan is doing well these days. His stomach can now tolerate a formula bolus of 250cc per hour over half an hour which is tremendous. I wish he could take that volume by bottle but he still really needs the G-tube as his swallowing aversion is very pronounced. Check out the new pics of him "eating" on the photos page. He is still in line for feeding therapy, speech therapy and we're looking forward to having his regular physical therapist (OT) Amanda back next week who, I think, will be happy to see how well he's done with walking. He's getting steadier by the day. This evening he was chasing us down the hall with his arms out in front like a mummy and a look of the excitement of the hunt in his eyes. He remains the brightest and happiest baby I've ever known. MAR 20, 2008 - Toronto Star Articles - Today the Toronto Star featured an annual special section about Sick Kids Hospital. Sammy Archer and his parents are featured in an article about NICU raising money to create developmentally appropriate rooms, a cause that we support very much. HOSPITAL LIFE TheStar.com | SickKids | Premature babies thrive in cozier ICU There is also an article about dear Stephanie with many touching photos. If you click on the link below you can see the article which features a powerful slide show of images and voice over by Denise and Stephanie. HOSPITAL LIFE TheStar.com | SickKids | When home is the hospital
MAR 18, 2008 - Latest Article - A Link to Diane's column from Saturday in the Toronto Star about Lia Grimanis IN THE THICK OF IT Thestar.com Advocate for homeless knows what it's like MAR 17, 2008 – G-Tube Course - Happy St. Patricks day and Happy Anniversary to the Purdy parents (51 years March 16th!). This morning Nurse Julia at Sick Kids hosted a special G-Tube class for Jonathan caregivers. Nine of us attended. I’m really grateful to Julia for taking the time to give us such personalized service, for Auntie Kelly for organizing it and for everyone who took part. Julia gave us really clear and valuable information for the care of his current feeding tube: flushing advice, adaptors and catheters, meds by tube and mouth, blockages, care of the tube site, how to avoid accidents, and what to do if it gets pulled out, etc, etc. She also gave us a bit of a sneak peak into the world of “buttons” or “mickeys” (the smaller tubes held closer to his body). Basically, it’s a step wise process – from size 10 to size 12 to a button to nothing. That’s the trajectory we’re aiming for. I was especially grateful for the discussion about how to help Jonathan’s tube site. If you’ve seen it you know that Jonny has always had inflamed and red skin near his g-tube site. It’s concerned us from the beginning. We’ve tried everything and it goes from bad to worse. Since the new size 10 tube was inserted in February it’s gotten really red, infected and crusty looking. It’s painful to the touch or when he rolls onto it. When we described it to Julia she was concerned as well. She told us many ideas for treatment and then agreed to see him this afternoon for an immediate consult. Diane is taking him at 1:30 PM and I hope we can really solve this problem once and for all. I have to admit the whole class I was dreaming about the day, one day in the future, when he doesn’t need this tube at all. Imagine what freedom and happiness that will bring! [Update Next Day: Julia treated the tube site, removed some granulation tissue and gave instructions for three saline soaks a day for five minutes each for the next three to four days. In addition she gave us special cream to put around - but not on - the site. It's already beginning to look a bit better.] MAR 14, 2008 - Today in the national Globe & Mail Newspaper. Lives Lived section. HEIKO ALEXANDER EARNSHAW WILLMS MAR 10, 2008 - Jonathan is walking (assisted) and laughing his country-boy laugh and generally enjoying life these days. He had his first hair cut thanks to Auntie Netty. I know, but it had to be done. He's got kind of thin and patchy hair but some areas (around the ears and at the front) were getting positively unruly. He's very cute. We're still working hard on the feeding and speech. We have a new worker from Centennial Development who is going to meet him March 16th. She's a specialist in eating disorders so I hope she can help. Auntie Kelly and Uncle Daniel have taken him into their pool a few times now and he enjoys that also. As I've said before about Jonathan, he's a good sport, always game for new experiences and adventures. In the mean time I'd like to share an article about Aidan, a little O boy born in Chicago last year. His mother Sarah is a friend I met on my MOO (mothers of omphalocele) list - she is doing a great job. MAR 1, 2008 - Snow Storms and Sunshine - It's my hope, as I write this on the first day of March - with four more cm of snow on the ground from yesterdays storm - that spring might come eventually to this part of the world. This week has also been quite a wind storm: Monday the tube came out and we had an emergency visit to Sick Kids at night, the IGT tube replacement appointment and NICU brainstorm meeting happened Tuesday, our first adult date in ages was on Wed night at George Restaurant thanks to a wonderful friend (haven't enjoyed myself that much in ages) and then Thursday night poor Diane came down with a brutal flu or food poisoning. She had severe abdominal pain and vomited all night and the next day. Ugh. On Friday I stayed home from work to take care of her and the little ones. Now it's Saturday and all seems to be finally returning to normal (hopefully). Jonny's new tube is working well, he and Eli are in good sprits today, Diane is feeling better (although her back muscles are in spasm - yoiks) and the sun is shining again. Oh, and Jonathan now says, Book (Ungook), Mama (Ama) and Eli (Eeeeyah) and is beginning to take his first steps. I hope wherever you are the sun is shining too. Here is the link to Diane's latest column (she got a full page in the Star today with a nice big pic): IN THE THICK OF IT TheStar.com | living | A multi-year gestation FEB 26, 2008 - Succesful IGT visit - Janis and Jonny got home late from emerg last night with a jury-rigged foley catheter/G-tube. First, Denise met them in the atrium and got the foley catheter functioning!! Yay Denise, mom of Jonny's soul sister, Stephanie. Then, the emerg doc was great, and they didn't have to stay there too long. Jonny made it through the night well. This morning we were scheduled to attend a family-centred care brainstorming meeting at NICU, and we did, with Jonny in tow. Very encouraging stuff. Kudos to Jonathan Blumberg, Sasha Bella's dad, for organizing it, and Dr. Jonathan Hellman for gathering the NICU people. A meeting of the Jonathans. Jonny and I ducked out to IGT to get his new tube. Jonny is such a frequent flyer that the staff at IGT knows and adores him. They are so kind to him. He got his new tube around 2:30 this afternoon. It was very fast, although he was extremely upset. He is fully aware now of what is happening. But he got through it well and we are home and happy. We're reminded how cautious we need to be with Jonathan, but also that things are so much better now than they have been. And again, how much Sick Kids has become our family. FEB 25, 2008 - G-tube Out - We've had so much exciting progress and new horizons with Jonathan, that it's easy to forget that he is not simply a "regular" baby. Tonight somehow his G-tube was pulled out. I (Diane) arrived home and we managed to insert a foley cathater into the hole in his tummy in order to try and salvage the tract into his stomach. The skin is a bit of a mess, bloody and sore. Janis is with Jonny in emerg now (8pm) to try and see what they can do until we can get him into IGT (hopefully tomorrow) to have his G-tube replaced. Janis called to say that poor Jonny started crying the minute he saw a nurse. He is in amazing spirits though. And is so so incredibly beautiful. We'll keep you posted about how everything goes. At these moments I remember how grateful I am for this website. FEB 20, 2008 - Cabin Trip - This past weekend our little family headed to our cabin in the woods. It has no hydro or water so we haven't been able to stay overnight since Jonny has been born (we needed electricity for his feeding pump). Well, this Saturday we did it. Because Jonathan is only on his feeding pump for shorter boluses now, the battery stayed charged the whole night. Also, Jonathan is now getting his 100 cc bolus in half an hour! This would have been unthinkable a month ago. We are so proud of him. Still working on the oral feeds. Not a ton of progress there yet. But he is interested in the taste of everthing, unlike big brother Eli. There was a power outage this weekend while we were at a neighbour's and Eli said that God made the power go out so that we could save the polar bears. (The concepts of Global Warming and Heavenly Ominipotence all in one sentence). p.s. Thank you all for your lovely messages to six-year-old Stephanie. She adored them. FEB 19, 2008 - Diane's column from Saturday's Toronto Star in case you missed it....In the Thick of It: Miraculous Recovery Inspires Fund http://www.thestar.com/article/302937 FEB 14, 2008 - Valentines Day and Stephanie's Birthday - Some of you may know or have heard us speak about Eli's friend, and Jonathan's soulmate, Stephanie. Stephanie was born with a giant O in 2002 and is turning 6 years old today on Valentines Day. After a very difficult year in hospital Stephie finally got out in January and was home. Then on Sunday her j tube came out and she had to be re-admitted. This is very hard on her family and especially on Stephie, having to once again spend another birthday in hospital. So, I was hoping we could rally our energy and love and send as many supportive Happy Birthday Messages to Stephanie as possible today. She may not be able to have a birthday party with friends at home but at least we can let her know how many people from all over the world are thinking of her and wishing her well on her special day. Thanks for your help with this and for spreading the word. Carepages is www.carepages.com and Her carepage name is: StephiesPage2006. http://www.thestar.com/article/298508 P.S. Sending our best wishes out to Saskatoon to little David with a giant O who is having quite a struggle. We are all wishing for him to come through healthy and well.
FEB 6, 2008 - Progress - Jonathan is now getting 100cc's of formula in 40 minutes! He is managing these bolus feeds really well, despite having a lousy cold. We're all recovering from it, and grateful that it hit after the G-tube was in. Jonny has learned the ASL sign for "book" from our wonderful respite worker, Heather. He does the sign when he wants to read and he actually said "ook" the other day! His crawling is fast and he stands unassisted for a few seconds before he reaches for something. He took two tiny steps without holding on to anything the other day, but that hasn't been repeated. He is getting wonderfully demanding - he will shove our hands out the way if he wants to go somewhere, and he yells in his own baby way when we're doing something he's not into - like a diaper change. p.s. Eli took Jonathan to "show and share" today. It was fantastic. He told everyone that Jonathan is stronger than him (Jonny has this game where he "pushes" Eli across the room), and that Jonathan is Eli's favourite person. Eli also said that when Jonathan is crying, Eli comes to his rescue, and distracts him and makes him laugh so he feels better. He also told the class how old Jonathan was and then pointed to me (Diane) and said, "and this person is fort-" Stop! stop! I interrupted to no avail. FEB 1, 2008 - Anniversary - One year ago today Jonathan had his spontaneous bowel perforation and in a matter of moments we came closer to losing him than we ever have before or since. It's a day that I will never forget. Everything that held me stable in this world was flipped upside down and shaken like a snow globe. I have spent many moments here and there today reflecting back and saying quiet thank yous to god or the universe or Jonathans guardian angels or whoever or whatever saved his life that day. How he ever came out of that O.R. - with his bowel intact no less - we will never know. But I have thought deeply and with gratitude about each and every medical professional who helped him, especially his nurses in NICU, his NPs, his RTs, his anesthesiologist and of course, his surgeons. I was going to send everyone flowers on Jonathan's birthday but I think we might need to send something out to honour this day - his "perf" day - because it is the day every year that we can really appreciate him being here with us in this world. JAN 31, 2008 - 100CC/HR - Sorry it's taken so long to update this site. We were having some trouble connecting, but I think I accidentally fixed it. Jonny has had an unbelievable week. He's progressed on his bolus feeds to 100cc's of Peptamen Jr an hour. This is twice what he got by GJ tube. He gets 4 boluses a day - one of which is in the early morning and one at bedtime, so he is off the pump in the day much more! And none too soon. He is getting more mobile - he's acting like he has been liberated from that GJ tube. Our next step is to decrease the time it takes to get the 100cc's into him from an hour to half an hour - more like eating a real meal. We are also to try and increase his oral feeds. This will be a challenge, but we'll take it slow. He's tolerating everything remakably AND both he and Eli (and now Janis) have a killer cold. Despite his cold, Jonny has managed to keep all his feeds in his tummy! We bet that Jonathan will be the first one of us to do a one-handed push-up. Jonny is still being fed at night - something we'd like to see end. We really need to get some sleep. However, this week, we don't know if Jonny's sleep is so disrupted (I was up 5 times last night before midnight) because of tummy issues or the bad cold. Jonathan also had his developmental follow-up through NICU and they were amazed at his improvement. He left the hospital in August at only 5.5 kilos (he now weighs 8.8), couldn't sit up, had no muscle tone, vomitted, collapsed lung etc. Now he practically walked into the appointment. He's still small, but mighty. He really has only had 5 months of developmental time. We are so grateful for our support workers, loving family and friends, docs, NP pals, dietician, nurses, and OT. p.s. Eli was quite feverish this week, and at one point we had him and Jonny in a wagon dragging them both home from a walk. Eli opened his eyes a slit and looked up at Jonathan and said very seriously, "Baby. I love you." JAN 23, 2008 - Home so soon! - Jonathan is home and sleeping this morning. Can you believe it? There was a chronic shortage of beds on the unit - so sad, so many really sick kids - so they had to clear out everyone they could. They figured he was doing well and since we live so close we could be there quickly (which is strange since an aspiration can happen in seconds). But I guess they were in a crunch and assessing that he'd be fine. And the good news is, he is. He had his first night on full feeds last night and despite a lot of gas and flailing about, he's done beautifully. We are all happy to have him home so soon, especially Eli. He's amazing. We'll spend today watching him carefully and learning the new feeding routine. We will remain on our regular feeding routine for a few days, if all goes well. Then, we'll be consulting with our ped and dietician to figure out how to get him to bolus feeds. It will require alot of thought and work, which we are more than happy to do at home instead of in the hospital. JAN 21, 2008 - G-Tube - At 10am this morning, Jonny's GJ tube was pulled back to a G tube. If anyone thinks that babies don't remember pain, they should think again. The minute Jonny saw an IGT nurse in their distinct hair-net, he started crying, clearly afraid, and clinging to my arm. The procedure, luckily, was fast. We got up to 5B. Jonny was put into the constant care room. It's a lot like NICU, with 4 kids to a room - loud, bright. There is nowhere for a parent to sleep - there is just a rocking chair by the bed - which is where Janis will sleep tonight. By 2-ish, a resident came by and things started rolling. Jonny got an IV. Again, he knew exactly what was happening and was very upset, but he pulled through so well. His feeds were started at 15cc's/hour, and the IV provided the rest of the fluids. We were told originally that he would stay at that volume overnight, but Dr. Wales came by and spoke to Janis. They decided that since he seemed to be doing so well on 15, that they'd try and go up on the volume by 10cc's every four hours. Jonny had been getting 52 cc's an hour by GJ at home, so that is what they're aiming for. If he handles this tonight, by morning he should be at his full volume. Tonight is crucial. It may be a challenge, because he's lying down, so his digestion isn't benefitting from gravity or activity. But he's happy and playing and so far seems to be doing very well. We are crossing our fingers! JAN 18, 2008 - Cardiology Follow-Up - Jonathan had his follow-up echo cardiogram and ECG today. He was given chloral hydrate to sedate him for the echo, as he had to remain still for 45 minutes. It was unnerving to see him sleep so still, and act a bit drunk when he woke up. The good news is that his echo looked great, his heart function looks very good, and his cardiologist doesn't feel the need to see him for another year. We also got our IGT appointment confirmed for Monday, for Jonny's G-tube. We don't know how long he will have to stay in hospital. We have hopes that it will make a big difference for him for his mobility, sleep, and eating. Admittedly, I am anxious about going back in. We break the news to Eli tonightl. Jan 18, 2008 - Amelia's Angel - From May to August 2007, when we were on the Sick Kids Cardiac Ward (4D) we had a friend next door named Amelia. Amelia was born with DiGeorge Syndrome, a rare genetic disorder that usually includes heart problems. Amelia and Jonathan shared this and other issues, like dysmotility, reflux, GJ tubes and feeding issues. Amelia was three months older than Jonathan and had spent most of her young life in hospital. Her family is from near Ottawa so her mom was often separated from family and friends (including her husband, parents and older daughter) but she rarely complained (unlike me). Really, a nicer family you could not find. I shared a lot of laughs with mom and developed a deep affection for Amelia (nickname: The Princess) who was the sweetest, strongest, most patient little girl on 4D. Last Friday I got to visit Amelia as she was back at Sick Kids for two procedures. She seemed tired and quiet that evening, but she was surprisingly longer, more physical (showing off her ballerina legs) and more grown up than the last time I'd seen her. Her eyes were bright and "crinkly" and she was clearly very connected to Mom, "talking" in their own way as moms and babies do. Amelia was due for a heart catheter insertion on Tuesday. Apparently the procedure went well. But on Wednesday little Amelia went into cardiac arrest. Yesterday I got this e-mail from Amy: "Just a short letter to tell you our sweet Amelia passed away yesterday. She did well in the cath lab and then the next morning yesterday she arrested and then she arrested 2 other times throughout the day and then the third we let her go..... I am lost and miss her more than words can say...." This was completely unexpected and still remains a shock. As I understand it, the doctors are also at a loss. Diane and I were stunned and very upset to get this news and can't express properly our sorrow and sadness for her family. They have been through so much and this just seems too much to endure. The ways of the world are a mystery to me. There is a facebook group in memory of Amelia and supporting the family. Please consider sending a supportive word. I know that posts are welcome and appreciated by the family.The name of the group is Amelia's Angel.
Jan 13, 2008 - Crawl, sit-up, and finish - Jonny is crawling. Even we didn't think he'd be able to do it. It's sort of a scooty-crawl, but it works! We are switching to a new formula in hopes that we can get more time off his feeding pump, because now we have to follow him around with his tube and backpack. Bit hazardous. He also can finally get himself to a seated position by himself - he used to just be "turtled" on his back once he was lying down. Now, he turns over onto his STOMACH, and pushes himself to sitting! And the latest today is that, as with Eli, we've been using ASL sign-language for a few words, like "more" and "finish". Today he looked at us while we were feeding him and did a perfect "finish" sign! His spirit is mighty and funny and he grabs and flings things just like any other one year old. Other news is that on Friday he has a follow-up echo-cardiogram to see how his heart function is. Then on Monday the 21st, unless we're bumped, he goes into hospital to have his GJ tube pulled back to a G-tube. His pediatrician talked to the surgeon who will be overseeing it and asked that we do whatever is necessary to spend as little time as possible in the hospital. Amen. Heiko's funeral last Tuesday was devastating and beautiful. Please send your gentle vibes to his family. JAN 5, 2008 - In The Thick Of It - Diane has a new column in The Toronto Star. It started today and will run every two weeks on Saturdays in the Life Section. The first article features Jonathan. Congratulations Diane! IN THE THICK OF IT - Giving up not an option, so laugh - Jan 05, 2008 Diane Flacks This column inaugurates a regular feature by Diane Flacks, running every two weeks, paying tribute to the courage of ordinary people caught in the throes of extraordinary challenges JAN 4, 2008 - Thinking of Heiko - I want to send out my condolences again to Don and Gabrielle and the many, many people who loved Heiko. We are thinking of you everyday. As my mother said, "There's no words to express the pain his family must be feeling - children are not supposed to go before their parents .........." Heiko's funeral will be on Tuesday at Trinity-St. Pauls Church on Bloor street. JAN 3, 2008 - Goodbye Heiko - We have the terrible and sad news that dear, sweet Heiko passed away early this morning surrounded by his loving family. Heaven has another beautiful angel, much too soon. He was 4 years old. My thoughts and prayers are with his family. This is what I posted on their carepage. It was all I could think of to say (words don't come easily at a time like this): Don, Gabrielle, Lang, Heidi, Christine and all of beautiful Heiko's family; This is unfathomable and inconceivable. We send you our love and profound sympathy. We can't imagine your grief and pain right now. We are so sorry. You are the most amazing family. If there is anything at all you need, anything we can do...... For those of you who have been following his family's journey, notes of sympathy can be posted on his carepage (www.carepages.com name: HeikosPage). I'm sure they are appreciated at this time. JAN 2, 2008 - A Truly New Year - We are back from our cabin. It was magical! Janis, Eli, Jonny and I stayed overnight in the hotel in Bancroft (we needed hydro for Jonny's pump), while Netty and Parker stayed in our cabin at night. We all got together to snowshoe, toboggan, eat and play in the day. It was so quiet. Jonny had a wonderful time and Eli grew in independence and displayed a genuine love of nature - something we've longed for. We had some tube issues with Jonny, a reminder that any variable can become a problem. Janis said she always has one foot out the door headed to emerg. But thankfully, all is well. p.s. Guess who can pull himself to standing?? Please send your prayers and hopes to Heiko and his family, who is back in hospital. DEC 26, 2007 - Merry Christmas and New Website - Belated Merry Christmas and welcome to Jonathan's new website. Thank you to Hillary Carlip for making it happen. As you can tell Hillary re-designed the Jon-a-thon site so that we could use it for our regular site. This one is easier to read and navigate and without all the behind-the-scenes head-aches that the web wizard gave us. Explore and enjoy and please give feedback (oh, I know that the feedback still links to the old site if you press home - Hillary will fix that when she gets home from holiday - but we can still read the postings). Thanks and may your New Year be filled with happiness and good luck. Speaking of which, we are about to leave for another trip up north to walk in the snow and breathe clean air. Wish us well. We'll let you know if we survive when we get home. DEC 21, 2007 - Sound and Motion - Sorry we haven't posted for a bit. Things are good. Jonny continues to take steps (literally) with his cruising. He is loving to walk by holding our hands. It is so cute. And he's making more consonant sounds, as well as this bizarre glottal noise like Inuit throat singing. I swear. This afternoon, I heard him say "Ma ma" (although not in context). DEC 12, 2007 - G-Tube Date I just got the call about the date for Jonny's G-tube. January 21st at 8:30 am, with the proviso that we can be bumped at any time. They said to expect a stay of "3-5" days, but "Jonathan will determine how long he needs to stay in hospital." I personally (Diane) am feeling excited - forward motion, potential positive steps for Jonny. But I am also apprehensive and a bit light-headed. Will the G-tube work? Will it cause Jonny more problems? How will this family cope with another hospitalization - Eli especially. Janis just got back to work - how will she/we manage? Fingers crossed for all of it. (By the way, Janis' program, CTYS, received the 2007 Toronto Human Rights Award on Monday. Jonny, Eli and I were there to cheer Janis and her team on. Eli met the Mayor, who "has white hair.") DEC 12, 2007 - Found Our Fund Janis here. Diane and I have been taking turns sleeping in the spare room so that one of us can get some better sleep for the day ahead. I really wish Jonathan could have less pain or discomfort in the night. Sometimes he is up 10 or 12 times and the lack of sleep can't be good for him (I know it's not good for us). I'm hopeful that when we switch him to the G-tube (as opposed to the GJ that he has now) he will do better. Yesterday, Jonathan had a bit of a pump issue happen. This is how Diane described it to a friend: "Yesterday Jonathan¹s feeding pump stopped working. And no matter what I tried, I couldn¹t fix it. My heart was pounding and I was sweating imagining how quickly I¹d have to get to Sick Kids before he dehydrated; who in the world would I talk to about a new pump (they¹re $5000.00 and would it be covered?); would I have to wait and who would pick up Eli from school; but mostly how desperate it feels to have your child's life dependent on the vagaries of a mechanical device. Then, I tried a new feed bottle for the pump, and PHEW, it worked. And we moved on and had a great day". I've been thinking of investing in a new pump anyway, a smaller, lighter one that would work better for him. With the Jon-a-thon funds we could afford it. Thanks again to everyone who has supported us in that way. Yesterday I was musing over the cost of his formula - it's $33 per can and he goes through a can every few days. Then there's his meds and the high cost of respite and nursing care. I often wonder - how do others do it? How do those without the good fortune, good insurance and support we've had make it through with a special needs child? I really don't know. Speaking of the Jon-a-thon, I want to share that we've found a way to use some of the proceeds to support Sick Kids. The Sasha Bella Fund - After much research and exploration and talking with people at the Sick Kids Foundation, We have found the Fund that I think addresses the same goals and priorities that Diane and I have for helping to affect change at Sick Kids. It's called the Sasha Bella Fund (including the Sasha Bella Award for Family Centred Care at Sick Kids). It's named after a beautiful little girl named Sasha Bella Stein-Blumberg. Her parents set up the Fund after she passed away in June 2006. They do great work, particularly in encouraging family-centred care in the intensive units of Sick Kids (we're gently encouraging the expansion of their programs into the NICU), encouraging famiy centred practise on the general units, advancing palliative care and support for parents and promoting interprofessional education. It's a fund and a cause we are proud to support and we encourage everyone to take a closer look: http://sashabella.com/ DEC 10, 2007 - Bwab bwab Jonny is nothing if not perceptive. The last few days, with some encouragement from us, advice from our OT, and a fantastic book called "It Takes Two To Talk", Jonathan has started using his first consonants. Specifically, we've been hearing alot of "BAAHbwab bwab bahb." Eli thinks it's hilarious. Jonny's also standing with more assurance, and trying very hard to crawl and cruise. The nights are still rough - harder on us adults than Jonny, thankfully. He's up with pain, but it's not as bad as it has been. Janis has gotten through her first week of work incredibly well. I MCed a large event, my first since before Jonny was born; and Eli and Janis were in the audience. We are amazed at how life progresses. We feel like we have angels on our shoulders. DEC 6, 2007 - Angels I (Janis) am feeling a little emotional right now (stunned, gobsmacked) because we have just received a gift out of the blue, a financial gift, that we weren’t expecting at all and has blown us away. Just as the respite fund was ending. Thank you doesn't seem enough. Honestly, the kindness of people this year to Jonathan, and our family, has been beyond what I’ve ever known, or could have imagined. I’ve learned that there are a lot of really good people out there. Thoughtful, generous, kind, compassionate people who actively reach out to others (even if they don’t know them) to offer help in hard times. People who share what they have without asking for anything in return. People who love and care for a brave little baby boy they’ve never even met. When he gets older we will teach Jonathan (and Eli) what we have experienced this year, the beautiful and the hard. We will teach them that goodness, kindness and love are everywhere. For every painful time, there is hope. It can be a hard world and a tough world and there’s no question there is suffering and unfairness, but, we will tell them, don’t succumb to cynicism, don’t lose faith, because the secret is that angels abound. Look at what people have done for you and for us with open hearts. And as you grow up, you can do the same. P.S. - thank you to everyone who came and made Hannukah so lovely for the kids this week. What a great time. DEC 5, 2007 - Happy Hannukkah Tonight we celebrate miracles - little ones and ordinary ones too. Like our Jonny, and Stephanie, Sammy, Heiko, Marco, Angelo, Shelby, Julian, Amelia, Julia and all our friends from this past year. Janis started work on Monday and so far so good. She joked that after a year away, she feels a hundred years older. I think it's a bit like being the wolf child, who escapes the cave and comes into the light. Everything is loud and bright. We have been so isolated. But Janis is amazing, and her workplace has been very compassionate. It's a big adjustment. I am also starting to get back to what it is that I do, so we're really grateful for our nurses and respite workers. We feel secure with them, and Jonny loves them. He's still gaining weight; getting more of that fine auburn hair; cutting two more teeth; and lately he's becoming much more curious and strong. He likes to try and stand, he demands to be shown things, he's been switching the light on and off. We've been trying something new at night - we turn off his feeds for a number of hours. It helps him sleep for longer stretches, up to 3 or 4 hours at a time. We are up in between to turn the feeding pump back on, but it somehow is helping us all. The problem, though, is then he's off less in the day. So his eating of solid foods has not increased as he's not as hungry. It's a fine balance. Janis' concerns right now are around his language. He is still not making consonant sounds, much less any words. He communicates very well non-verbally, but we can definitely feel the lag there. He also is frustrated that he can't sit up by himself. Without those abdominal muscles in front, he gets stuck on his back and it bothers him. Eli is doing great at school, and is being a wonderful big brother. He's so unique as he navigates being 5. Every single day I can clearly remember where we were at this time last year - my mother making latkes for the nurses in NICU. Our family starting to understand "long haul". Our care team coming to the rescue. All of our community sustaining us with food and kindness. We would not be here without you. NOV 26, 2007 - Heart Update The other day a friend said to me (Janis), "You never mention his heart. Is that because it's fixed now?" Well, yes and no. Jonathan will always be a cardiac baby/boy because his heart will never be "normal" like ours and he will always have some vulnerabilities. He still has an overriding aorta but it's better now since surgery. The right side of his heart is still thicker than the left but they expect this to reduce over time now that it doesn't have to work so hard to pump the blood (the surgery released the tight pressures of the pulmonary stenosis). In addition he has a small ASD (a hole between the atria) and, most concerning to me, a pulmonary valve that had to be cut permanently open (so it doesn't function as a valve). So, it's not totally rosey. But on the other hand, as I understand it (and hope and pray), there's no reason not to expect, with careful monitoring and attention, that this heart will do well for him long into the future. There will come a day when he will need more surgery. As his body grows his heart may need help adjusting. But cardiovacular technology is improving quickly all the time so who can predict the future. Diane here: Our big issue at the moment is that he is scheduled to have his GJ pulled back to a G-tube in January. This means a hospital stay but I refuse to think about that part right now. Until then, our goal is to try and get him to take more volume of food into his stomach (to help stretch it in anticipation of being filled) and to try and convince him to take in liquids. Jonny's nights are still rough, but better than they had been. He's so happy in the daytime and he really enjoys standing (with assistance). Janis returns to work on Monday for the first time. We are filled with anticipation. It will be a big change for all of us. We'll keep you posted. NOV 22, 2007 - Speech and Language Therapy Jonny went to a Pedeatrician appt on Monday and he is generally doing well except for his continued pain at night. The doctor offered a few ideas but also admitted that there is not much to do given he is an O baby on continuous feeds. We're going to experiment with a few ideas and hope they work. First and foremost for Jonathan's comfort but also I (Janis) am going back to work in a couple of weeks and won't be able to function if I'm up ten times every night. Otherwise, Jonathan is working hard to catch up developmentally, and Dr. Campbell would like to see more progress in his eating, drinking, mobility and especially what he called a "language delay". He is a very quiet boy generally and is not saying the beginner words or sounds expected of this age. I just think he's letting Eli do all the talking but the doctor recommended we put him on the list at the Toronto Pre-school Speech and Language Centre. He said it's nothing to worry too much about, that developmental and language delays should be expected in a boy who's had a start to life like Jonathan. But with early interventions perhaps we can help him catch up faster. I see him working so hard everyday, as a mom, I'm somewhat ambivalent about adding more to his (and our) plate, but I guess it's probably the best thing to do.
NOV 21, 2007 - Birthday Party We had a big birthday bash for Jonathan on Sunday Nov 18th and it was just wonderful. Loads of people came by to give hugs, love and good wishes to the little miracle boy, who remained happy and delightful throughout the day. Ali made incredibly delicious food (thank you again), Netty, Heather, Jane and Roselle helped set up and clean up, Eli was a fun and considerate little host, and Diane and I got to just bathe in the glow of good family, good friends and a tough year over. At one point it kind of got a bit chaotic (if you were there between 3:00 and 5:00 you know what I mean) but in a way that, for me, just was so wonderful. The whole house was full of kids and babies and parents and friends and noise. For one who has felt socially disconnected this past year being stuck in the hospital, it was real life and it was just beautiful. Thank you to everyone who came and made the day so special. BTW - I have to mention that there were two very special guests at the party. Heiko, who've I've written about here, is home now and his mom and aunties braved germs and stress and brought him to our house for Jonny's big day. It was so good to see him outside of the hospital I nearly started to cry. In addition, our NICU room mate Sammy also made the trek with his parents from Brooklyn (no, not New York, somewhere near Oshawa, I think). One day soon, I want to see Miss Stephanie climbing the stairs of our front porch. NOV 14, 2007 - THE BIG DAY!!!!! It feels almost anti-climactic....but here we are. One year later. This was the day one year ago that the wonderful Mr. Jonathan, JJ, Jonny, Jon-Boy, Cutie-Head, Toe-Toe, Noochie, Superheroe Baby Diaper entered this world at Mount Sinai Hospital and was rushed within an hour over to Sick Kids. This day one year ago started it all. I can't believe he made it. I can't believe WE made it. To celebrate and thank everyone who gave support and friendship and love, we are hosting an open drop-in this Sunday Nov 18th after 12:00 noon. All welcome. Drinks, food and the man of the hour will be there. RSVP at shmactor@sympatico.ca if you need the address. Oh, and to mark this day I have posted a few pics. Two of him at his birth (warning quite graphic) and two from this week. I find the remarkable transformation just amazing. NOV. 10, 2007 - Best Birthday This Saturday was my (xx) birthday. It was hands-down one of the best. Much of my family were here and Janis made a delicious lunch. And I had my two boys and Janis all in our home together. This year will be so much happier all around than last. And I hope, as filled with miracles. We are so grateful to all of you for helping to get us to this far. Jonny's birthday is in a few days and Janis is reliving every moment. Please remember about the drop-in on the 18th! NOV 9, 2007 - Memories and Letters As we get closer to Jonathan's birthday, memories from this long year become incredibly vivid. We remember the times he "circled the drain" in the words of a nurse. We also remember him flat on his back in the silo, and batting his toys during rounds and drawing all the doctors to him with his happy loving smile. Here is a letter Janis wrote to Jonathan last night when she couldn't sleep (sleep is still a precious and rare commodity in our house). We share it with you because you are also precious to us. Thank you for hanging in this year: November
9, 2007 - An Open letter to Jonathan Love, NOV. 5, 2007 - New tube Jonny did well all weekend. Janis took him to IGT this afternoon to replace his tube. From all accounts it was a long and brutal ordeal. But the new tube is in and he's asleep after a big dinner of yogurt and apple sauce. NOV. 3, 2007 - Tube Misshap Tonight we are watching our Jonny very closely. Jonny's tube got pulled out a bit today - the coiled part (or "pig tail") came out of his stomach and I (Diane) pushed it back in. The pig tail was dripping formula a bit when it came out, and so was a part of the tube that is external. So, with Dan and Kelly's guidance, we literally covered the external leak with plumber's tape - hopefully ensuring that the formula that goes through his tube actually gets into his body. I worry that the pig tail is probably leaking a bit into his stomach, so we dropped the volume of his feeds in case it is- since we're not sure how much his tummy can handle. We have to watch and see how he is. If he vomits repeatedly, or if he's not peeing (not getting enough fluid) then we'll take him to emerg. But we do not want to rush to emerg just to be told to go home until IGT comes in on Monday to fix the tube. So we're waiting and watching. We feel sick, but Jonny's spirits are brilliant. He's playing, happy, eating yogurt and baby food. It's a reminder of how close to "real life" we are; and also how very far. NOV 2, 2007 - No More Bandage! It's two weeks until Jonathan's
first birthday (you're all coming to the party on November 18th,
right?? See the Oct. 19th post for info) and for the first time
in his life, Jonny's tummy does not have a dressing on it. His omphalocele
is completely covered in skin that he grew by himself!! It's lumpy,
scarred skin, but, baby, it is skin! The new anti-reflux med, prevacid, seems to maybe be making a bit
of a difference. Jonny had a better tummy night last night, although
this cold is keeping him and all of us, awake. The other news is
that we are now slowly moving toward a regular formula; and Mister
Chubs weighs almost 7 kilos! OCT 26, 2007 - Nursing Shortage You'll notice we are posting less frequently now that we have been home two months and things are calming down. It's a great development. Life is more normal and crises are less frequent so there's less "news", I'm happy to report. Jonathan has had his med change (from omeprazole to prevacid) but it's really too early to say whether it is helping with the vomiting and reflux. I (Janis) am really crossing my fingers on this one, as he deserves some relief - especially at night. Last night he was up so many times, I stopped counting at nine. But thank goodness he did not have one of his throwing-up fits. His omphalocele is still open on the very top but looking great and requiring smaller and smaller bandages. The skin around the wound is looking less pink and raw and more like real skin. And in the development area, his O.T. is thrilled with his recent ability to sort of turn over and support himself a bit with his hands. She thinks he'd doing great so we ride on her enthusiasm, and look forward to the day he can crawl or shuffle or (imagine!) walk by himself. The main difficulty we're dealing with right now is the homecare nursing shortage (which you may have read about in The Toronto Star last week). Our wonderful nurse Yvette has had her hours with Jonathan cut from 16 to 8 because she has another assignment. We're getting a new nurse next week apparently, named Julie, but that still won't cover all our hours so we may need a third person. This is concerning for two reasons: 1) we don't like having so many people come and go in our children's lives, and 2) I am scheduled to be back at work in about a month and we need that coverage (at least 20 hours per week) to make it work. Jonathan is such a generally happy little baby and can appear almost perfectly normal (especially if he is dressed and "unplugged"). Some people have asked why he needs a nurse. Other than the obvious (his feeding tube, meds, dressing changes, heart and lung monitoring) the thing about Jonathan is that when he does turn down, he can get very sick very quickly. Though he is well most of the time - thank God - we always need someone with him (or close by) who knows his issues and can react quickly and confidently if he starts to get sick. I'm glad to say we haven't had to rush him to emerg in a while but the memory is still quite fresh. For the forseeable future, if we are to get any break away, he needs nursing care. Our only challenge now is to find and keep good nurses. We'll let you know how it goes. OCT. 22, 2007 - Pediatrician Visit We met with Jonny's pediatrician. Jonathan has put on more weight and his head circumfrence is off the charts - meaning big brain growth! We're going to try a new anti-reflux med to see if it will help with the rough nights and vomitting. Dr. Campbell was really impressed with Jonathan's size and vigour, and agreed with the G-tube plan. We really need to work on oral feeds until then. We also will soon try and get Jonathan on a regular formula and off pregestimil totally. That will be nice, even symbolically. OCT. 19, 2007 - JONNY'S BIG DAY - MARK YOUR CALENDARS, BLACKBERRIES, TRIOS, CAVE-WALLS! Many times in this long journey, we've
imagined celebrating Jonny's first birthday. There was a dark point
when we thought we might be marking it at Sick Kids. But no, we're
all home together, and, despite his medical challenges, he is doing
so well! We invite all of you to a drop-in to let us thank you for
your support, and to celebrate Jonny's first year of life. He made
it!! And so did we!! This invite extends to you, too - NICU, 4D,
CCU folks, and all of you who read this blog. You have all been
our life-line and we want to thank you with food and drink and hugs
(anti-septic of course). OCT. 18, 2007 - Rough Night Poor Jonny had a rough one last night. Up at least every hour, crying in pain. Then up much of the early morning until he vomitted mucusy fluid, screaming in panic all the while. During the day he was a bit fussy - and we realized he's getting another tooth. But we've stopped increasing the volume in his GJ until he settles. He was not vomitting at all for a while there, so this is upsetting. We think it might be: a) the new volume of feeds, b) teething, c) he's ore active, so when he throws his little self into new positions, his tummy goes "waaaaaht?". Wish us luck tonight. Oh by the way, the whole house is full of fans and dehumdifiers and holes in walls - drying out the water damage. Yoiks. OCT. 16, 2007 - Doctor Fecteau Well, Jonny and I (Janis) saw Dr. Fecteau at Sick Kids yesterday. She's his General Surgeon and responsible for the care and management of his omphalocele and feeding. The first thing to report is that she seemed really, really pleased to see him. She commented many times on his good colour and size and the way he was sitting up and smiling. She had a Fellow with her and she tried to convey the size and scope of his "O" before, but in the end I think only those of us who have seen it (when he was first born, through those first months, and then in the silo) can appreciate how dramatic the change has been. She has scheduled him in for January to have his GJ pulled back to a G-tube which is good news. I'm very pleased to hear this and I believe he will do just fine. It may involve up to a week as in inpatient so we must plan ahead for Eli's care. She wants us to keep working on getting food and liquids into his mouth (and stomach) until then. In addition she indicated that, as his O is not interfering with his ability to move, she would like to hold off on the first closure surgery, perhaps until he is two or even older. She described the surgery to me in detail and then said, in her Quebecois accent, "so you can see, it is not a walk in the park". She feels that we should not rush anything to ensure that when it is done, it is a success. I couldn't agree more. In the mean time we will just keep taking care of his O and make sure he never gets hit or falls hard on his tummy. I am so proud of him for all the progress he is making despite his challenges! He is such a special little boy. OCT 15, 2007 - Flood Just a quick post to say that our weekend up north was glorious. Just being there was an enormous milestone for our family. Very moving. Our dear friend up there, Jane, hosted us like kings and queens (in big boots). Kelly and Dan were amazing with the boys and enjoyed the fall colours and natural air. Jonny was fascinated by everything (especially the animals on Keith and Deb's farm). Eli played and played with Jane's friend Norman (11), loved up the kittens in the barn at Keiths, helped me make a fire, and rediscovered our little cabin. When we got back last night at 10:30 pm we were greeted by a gaping hole in our kitchen ceiling. What a ride! The plumber has been here an hour now and can't figure out where the water came from. But we have to rush off to Sick Kids asap! Check out the photos. Love, Diane OCT 12, 2007 - Cabin This weekend we are going up to our little
cabin in the woods up north for the first time since July 2006.
We don't even know if it's still standing! We need hydro for Jonathan's
feeding pump (the cabin has no hydro or water), so we're going to
stay in a hotel and with friends at night, and visit the cabin in
the day. When Janis originally suggested this idea, I was not game
at all. After the tube incident, I was terrified something could
happen. Since the end of Janis' pregnancy, we've rarely left downtown
Toronto - either because Jonny was in hospital, or because we wanted
to be close to Sick Kids. But then we started looking at our old
pictures of Eli and we realized how much of his life has been spent
going on adventures with us. He's been stuck here in the city all
year, and we as a family have not had much contact with nature.
This trip is a huge deal, but I believe Jonathan is well enough
now to handle this and I believe it's time. (We'll let you know
how it goes!) p.s. here is the song that marvelous Kristen and SplashNBoots made for Eli!!! PLEASE NOTE: Eli is adamant that only people who know that he has a secret superhero identity (Power Eli) should know about this song, so unless he tells you about it first, pretend you don't know. Meanwhile-- enjoy! Go to this address and then click where it says "click here to start download". Thank you, Timetje for the link! http://www.mediafire.com/?dezsb4hsyht OCT 8, 2007 - Superhero CD Jonathan's cold is slowly getting better.
We got him in a Jolly Jumper, in which he's beginning to delicately
bounce. He's also really into yelling like a baby dinosaur. Tomorrow
is a big day because it marks the end of the breastmilk that we've
had stored in a freezer for all these months. Janis deserves a superhero
medal!! Speaking of superheroes, back in July, my friend Kristen
said that she wanted to do something special for Eli's birthday.
Kristen is a mom of 2 1/2 year old twins and a newborn baby girl,
so "special" to me would mean waking up. She asked me
to write her a few unique things about Eli. Well, I sent her a four
page email. This weekend, Kristen dropped off a CD. On it was a
song, incorporating much of my long missive, written just for Eli,
entitled "Eli the superhero!" A fabulous kids band, called
Splash N Boots (http://www.splashnboots.com/) collaborated with
Kristen and created this gorgeous song. Kristen and I told Eli that
Spiderman was a part of it, and Eli decided that the man's voice
on the CD is Spiderman's, but only when he is Peter Parker. Janis
and I listened to the CD with and tears in our eyes. Eli was surprised/delighted/mystified/proud.
Tonight, I feel that the Purdy-Flacks family is the luckiest family
on earth because we have friends like Kristen and all of you. OCT 3, 2007 - Frog Legs Jonathan is doing really well despite the cold, rattling breathing and (less) frequent coughs. Generally his spirits and smiles are grand. He seems a bit worn out to me today, however, a bit low energy, so we are just taking it easy and not pushing him. When his O.T. Amanda came by he was sleepy so we opted for another nap instead of his strength exercises. That said, we continue everyday to try to find ways to get him to grow stronger and get food into his mouth. My mothers intuition tells me that he's going to get increasingly more frustrated if he can't find a way to self-propel. He's almost 11 months old and, left to his own devices, he is kind of stuck on his back. He can't roll onto his tummy, or get onto his knees or get himself into the sitting position without help. And if he's in a sitting position and falls sideways he's stuck and will cry, I think, out of anger and frustration more than anything. So, that is what we want to help him with. Growing his core and legs stronger, gettting him out of the frog leg position, and helping him find ways to control his own movements. I think tomorrow we will buy him a jolly jumper. BTW - Nurse Yvette now comes for four hours per day four days a week and is amazing. You can tell she has lots of experience with special needs infants and Jonny loves her. She's also bonding very well with little "E-L-I" (as she calls him). There is a big appt coming up on Oct 15th with Jonathan's General Surgeon Dr. Fecteau - we will find out then what plans she has for his feeding tube and next surgery. OCT. 2, 2007 - School Blues We are very relieved that it seems that the fortification is working, and Jonny is gaining his weight back. Unfortunately, he has picked up yet another cold from Eli (first month back at school blues). Janis has it too. They both have a cough, which we are closely monitoring with our nurse, and stuffy nose. We are not getting much sleep, but Jonny is really in great spirits. (I'm a bit snippy, but that should be expected). SEPT. 28, 2007 - Weight loss, Eating, and new movement Just a quick
note to say that since Jonny started back on breastmilk and pregestimil
he's tolerated it, but he's lost a hunk of weight. We are on it.
Both our pediatrician's dietician, and Joan, our tenacious NICU
dietician, have agreed that he needs to be fortified with more calories.
Joan sent us a number of recipes to try, and some ideas for next
steps. We still feel as if our NICU family are holding our hands.
No one could know Jonathan's peculiar needs better than them. "Let's
fatten him up for winter" is Joan's motto, and I believe we
will do it. SEPT. 25, 2007 - Oral Aversion my eye I (Diane) just wanted to post a quick note to say that Jonny is continuing to improve at home. He has now eatens spoonfuls of: sweet potatoes, pablum, cream cheese, vanilla ice-cream, mashed-potatoes, and a bit of chocolate cake. These are small bites, but he is definitely interested, swallowing, and asking for a little more. It's really thrilling. We have to work on his ability to handle liquids in his mouth. We are working on his sitting, and on his frog legs, and getting him to bear weight on his legs. His nights are still rough, but his breathing is so much better. He's been off monogen and back on breastmilk/pregestimil for over a week now and seems to be tolerating it. He has also been off his contiunous feeding pump for 5 hours a day, about 3-4 hours in a stretch unplugged and tube-less! We are amazed by his progress, needless to say. And truly appreciating the help of his nurse Yvette, his care workers Heather, and Aunty Kelly (and Uncle Daniel), and his OT Amanda, who are very diligent about his overall care including his physiotherapy, medications, GJ tube and omphalocele care and his feeding plan. On another note, it's my mother, Lily Flacks birthday tomorrow. She's been such a source of support and joy for her grandsons this past year, we wanted to wish her a big Happy Birthday Safta from all. P.S. Little Stephanie has come through her 12th surgery well. It was on Monday so she's recovering now. But she's earned her new Barbie Jeep, that's for sure! Anyone who would like to can find out more and post a supportive note on her carepage. I just know it would be greatly appreciated. Once again, it's carepages.com and her page name is stephiespage2006. SEPT. 20, 2007 - Thanks I just wanted to say thank you for all of your wonderful comments and emails. Jonny is doing great. He even took a few mouthfuls of sweet potatoes today. (As any other baby might, he spit most of it out). I've posted a few new photos of Mr. Chubbs. Tomorrow is Yom Kippur - some cynics may say it's another Jewish gut-up food-fest, but this year Eli told us (with great, expansive, miming actions) the story of Jonah and the big fish, and how we learn to say sorry and to help make things better for others on Yom Kippur. If you have a moment, please send your strength to Stephanie, who is five years old and is suddenly scheduled for her 12th surgery on Monday. We are all holding your hands, Denise and Stephanie. SEPT 18, 2007 - Friends in Sick Kids Poor Jonathan did have a rough go in IGT - a lot of crying from both pain and fear - but once it was over he was okay again (a bit tired and sore, of course, but spirits back up). The IGT team did a great job and were very quick and professional. While we were sitting in the waiting room, Cynthia, one of our favourite nurses from NICU came bursting in to say hi. It was great. She swung Jonny up out of his stroller, exclaimed at his size and beauty, and got him laughing with kisses. It was lovely to see her and to see Jonathan through her eyes - how much healthier he is than the last time she saw him. In the outside world Jonathan is beautiful too, but he's small, pale, and has tubes, scars and bandages. In Sick Kids people - especially people who know his history and conditions - go ga-ga over his size and health! During our visit today we must have seen about 10 people who know Jonny including nurses Carolyn, Kelly, Allison, and Janna, NP Carol, Dieticians Laura and Joan, and Heidi (Heiko's aunt). All of them were really enthusiastic about Jonny - "Look who's gotten all chubby!". I admit, I couldn't help showing off a bit ("look at his head control", "did you see how long he can sit up for?", "watch how he can blow kisses!"). I never thought I'd say this but visiting Sick Kids today was really fun. Thanks to everyone who took a moment out of their busy day for a visit. Heiko - Special thanks to Heidi who made time to grab a coffee and really update me on the latest re: Heiko's progress. He continues to amaze the doctors as his brain fungal infection is actually reducing, and the leukemia remains in remission, but lately he's been battling a bad cold/flu which is wiping him out and could be dangerous if it gets into his lungs. He also needs to build up his physical strength. Please if you have a moment to spare, send a prayer or a good wish for Heiko - for his cold to go away, his infection to reduce completely and for his strength and energy to return full force. SEPT 18, 2007, 1PM - GJ replaced Poor Jonathan, the minute he saw IGT he started to scream. The procedure was fast and they took him in pretty quickly. As it turns out, the tube was not in his stomach, it was still in his intestines. So, another crisis over - Janis and I the worse for wear, and Jonny smiling, blowing kisses, grabbing noses and loving life. This has again driven home, though, how fragile our situation can become, so suddenly. We are now doubly determined, since his chylothorax has been cleared, to get him to try to take more in orally and use his stomach - working toward getting rid of a tube, G or GJ one day all together! At the moment we can only imagine that, but we have to do what we can to make it happen. p.s. Although I know that this truly was an accident (the tube had been jammed in his car seat, there was no way I could know that etc), as a mom, when something like this happens, you just want to bang yourself in the head, and puke. SEPT 18, 2007 - Back to Emerg Jonathan's GJ tube pulled out (not all the way but out about 7 inches) as Diane was taking him out of his car seat at 5:00 pm last night. It was caught on something and she felt that sickening yank as she lifted him up. Oh no, not again! We got him out okay, took one look and then immediately put him back in, loaded up the diaper bag and Diane headed off to Sick Kids emergency for what we knew would be a long night. They did an x-ray at emerg and found that there was still tube inside and it not coiled. The radiologist thought it was far enough in that they should keep using it rather than taking it out and putting him onto an IV fluid overnight. They tested him with pedialyte and it went well so they turned his milk back on and sent Diane home at about 1:00 am. IGT are the only people who can fix G tube problems and they don't work at night so it was better to be sent home even for a few hours to sleep a bit rather than spend the whole night in emergency (emerg is such a crazy place). It's now morning and we are going back in for an IGT appt at 11:00 am where they will either put the old tube back in or put in a new one. The part of this story that makes me a bit crazy is this: based on the amount of tube that is out, I am convinced that the end of the tube must be in his stomach. That would mean his stomach has been handling the feeds without problem all night (in fact he's been peeing and had a nice big poop this morning). That would mean this is the fourth time that the tube has either coiled back into his stomach or been pulled back and each time his stomach has handled the volume without problem (one time the coil wasn't identified for three days so he'd been handling it for all that time!). To me this would mean that his stomach works. So, why aren't we using it? Bypassing the stomach and having a GJ comes with increased risk of intucception and stomach shrinkage and possible atrophy. I really wish that today, since they're in there anyway, they could pull it back and make it a G tube. But his General Surgeon doesn't want to make any changes yet, since he's growing and thriving on the GJ. Fair enough, I get it, but as a mom I worry.We let his healthy eating impulse diminuish because of lack of use and now it doesn't really exist. I don't want to do anything to cause problems with a healthy stomach if we can avoid that. He's got a stomach that by all indicators now works - why don't we let him use it? SEPT 16, 2007 - Happy Birthday Janis Today is Janis' XX birthday
(like I'm gonna tell you). This evening, while Aunty Kelly and Uncle
Daniel hung out with Eli, Jonny, and cousin Jordan, Janis and I
stole away for a long birthday walk in our neighbourhood (with our
cellphones). Janis mused that she is definitely feeling her age.
I agreed that this year has taken it out of us both (my joke is
that during the time Jonathan was in hospital Janis and I aged in
dog years, so we are now actually 71). I also was able to take the
moment to really thank Janis for bringing Jonathan into the world.
What a delightful, smily, engaged, alert, communicative, joyful
little angel boy he is. Despite everything, or maybe because of
it, he is a marvel. SEPT 15, 2007 - Sweet Little Honey Bunny Every year at Rosh Hashana, the Flacks family, among other rituals, eat apples dipped in honey. The tradition is about celebrating the season's harvest and remembering the sweet times of life. A suggestion from Eli has expanded the tradition to include wishes. As the honey is passed around, each person dips their apple slice and says a wish before biting. Last year our wishes were heavily weighted toward baby "raspberry". I was pregnant with a baby who we knew had a giant omphalocele and a four part heart defect. We were nervous that the baby would come early and be born premature with compromised lung development. I was afraid of undiagnosed associated issues. complications and infections. I worried he'd have a painful life. I was afraid he'd have long term serious disabilities. I was afraid we'd never get to bring him home from the hospital. On the other side of the coin, I also managed to hold a healthy dose of denial. Some days I truly had myself convinced that despite the odds, he'd be home from hospital in a matter of weeks, all healthy and repaired (I clearly had no idea what we were in for). But mostly there was worry. So last year many of the Rosh Hashana wishes had a common theme: "My wish is that next year we will all be here again with one more little one, healthy at our side." Well, there we were last Thursday, a year later, and I couldn't believe it. We were all sitting around the table , all relatively healthy and with TWO more little additions: our baby, now named Jonathan, ten months old, and Diane's sister Laura's new baby boy, Joel Walter, who was born this past spring. It was one of those nights where you pull back a bit unconsciously and see the scene from a distance. There was Jonathan, alive, cute, sitting on my lap blowing bubbles and kisses and enjoying his first high holidays with the family. We were all together and Eli was singing his new Hebrew songs at the top of his lungs. I may be in denial again, and I know challenges lie ahead, but I truly believe that we've made it through the worst. Life is good and it really is a miracle. SEPT 12, 2007 - Rosh Hashana Happy Jewish New Year - Or as I (Diane) like to say "Happy Jew Near". And as Eli says, "I wish your year will be good and sweet." We haven't been able to write personal thank you's to everyone, so for today we wanted to post a quote by Robert Louis Stevenson about kindness to let you all know how deeply your thoughts and wishes have impacted us this past long year, "It is the history of our kindnesses that alone makes this world tolerable. If it were not for that, for the effect of kind words, kind looks, kind letters...I should be inclined to think our life a practical jest in the worst possible spirit..." Now, that ending may be a bit dark, but there have been dark times this year, and our wonderful community has lighted our way. Shana Tova. SEPT 11, 2007 - To the Doctor Jonathan had a really bad night last night again, waking every half hour or so, screaming and crying so today Diane took him to our pedeatrician, Dr. Doug Campbell, to try to get to the bottom of it. We knew it could be related to the cold, obviously, but things like that are more worrisome when you have a child with a heart problem. Dr. Campbell is one of the best in the city - he also works at the Sick Kids NICU - and we are lucky to have him. He noted that Jonathan was clearly uncomfortable and not himself and tested for an ear infection but that was negative. He was concerned about Jonathan's increased work of breathing and loud grunting. He wanted to send him to Sick Kids emerg to see if they could get a chest x-ray immediately but in the end they tested his SAT levels - which were fine - and decided the x-ray could wait until Friday (when we have an appt with cardiology anyway). He is eager to see the results of the xray. He said Jonathan could be in distress because of the difficult breathing at night. In addition, he said, at night fluid collects in the throat and behind the eyes and feels very uncomfortable. On another note, our thoughts are on this date and all related to it including the obvious; but also the less well known - that it is the birthday of three of our favourite people - Jane, Katie and Brookie. Happy Birthday Girls. Also many thanks to Nancy Rallis, Angelo's mom, for her encouraging and helpful e-mail. SEPT 9, 2007 - Colds and Hand Washing This is taken from Diane's e-mail
to some family today. I thought it gave a good update as to where
things are at (and let me be kind of lazy about posting since I'm
just dying to get into that bed...you'll read why in her post). Hello
All; Little Jonny was up all night with a cold. All of you who've
nursed babies overnight when they are sick remember that babies
can't breath through their mouths, so they panic when they get a
stuffed up nose. Poor Jonny -- he'd wake up, panic, scream, arch
his back, push out a fart, scream, try and suck his soo-soo, scream,
be soothed by us, scream... Unfortunately for a baby who has been
out of hospital less than 4 weeks, and with his conditions, a cold
is concerning. His right lung is still partially collapsed, his
stomach doesn't tolerate mucus in it and leads to painful awful
retching, and a bad virus can effect the tube in his intestine in
a way that I am simply not going to write about because it is not
going to happen. Janis and I know we'll all get through this small
set-back no problem. But it reminds us of the importance of protecting
Jonny from infection. Back in NICU, I had stomach flu, colds, pink-eye.
Eli had countless colds, but we never passed anything on to Jonny.
The controlled atmosphere of constant hand-washing, and hand sanitizing
saved the day. So, Eli, Janis and I are going to be vigilant in
reminding ourselves, and anyone who's in contact with Jonny and
Eli together, to please use the many hand-sanitizers in our house,
frequently. (Eli, especially is on a mission, so beware). If we
can avoid infections, and protect both boys - why not do it? At the Jewish holidays, please kindly ask your pals to do the same.
Of course, this morning, Jonny is smiling and amazing! Thank you
all for your continued support, cooperation, care and love of our
family, Diane
I (Janis) haven't posted for a while because, believe it or not, life is so busy I can barely keep up. Having Jonathan home is absolutely wonderful and I am truly loving it but, whew, it's a lot of work. And the nights have been a bit brutal lately. We're still not yet at a place where we feel good venturing too far from Sick Kids and at this point Jonathan has to be with either one of us all the time. But we hope for that to change soon. We are slowly but surely getting help in place. Heather is a wonderful MSW student who is experienced with special needs children. She is caring for Jonathan 12 hours per week and it's going just great. Both Jonathan and Eli love her to bits. We've also got some family help in the form of Kelly & Daniel, Jonathan's Aunt & Uncle, giving us support and help on the weekends. Of course family and friends are also showering the boys with love and kindness and helping when then can. But starting tomorrow, a real professional nurse is coming in during the weekdays. I'm a bit nervous because a) we requested a nurse for early mornings and/or evenings and they said, we've got one from 10 am - 1 pm, take it or leave it (there's a nursing shortage on right now apparently) So, it's really not ideal timing for us. And b) a nurse may be one too many people around for my comfort. I love people and then I also enjoy rejuvenating by being alone and/or having time alone with my family. So, having a nurse in my house four hours a day, four days a week, even when you really need the help, well, it may be a bit tough. Then again, I may love her and beg her to stay longer. I'll let you know how it goes.
Yesterday was Eli's first day at his
new school for SK. He did so well and we're really happy and hopeful.
Later, Jonny saw his pediatrician, who was "delighted"
with his progress. He's put on 3/4 of a kilogram in two weeks! He
now weighs 6.2 kg. The pediatrician thinks Jonny's screaming is
about gas pains (he noted abdominal distention from gas) and/or
night terrors. He's not as worried about the head sweats and thinks
Jonny's lungs sound clear. He said Jonathan is too active and happy
to be having heart or lung issues right now. The doc did have a
concern that Jonathan's GJ site looks red and oozy. We got a prescription
for topical antibiotic. ?The nutrition plan now is to increase his
feed volume over the next two weeks to allow him 6 hours off the
GJ tube a day; and to get him feeding more orally. Jonny is really
displaying interest in putting food in his mouth, so we're going
for it. We have a cardiology appointment next week, and hopefully
then we can start feeding him foods with fat - like breastmilk (instead
of monogen), as well as anything he wants to put in his mouth. Finally,
Jonny had to have two vaccination shots in his legs - which totally
gave me (Diane) post-traumatic octreotide flashbacks (when he had
to get it by a shot in his leg three times per day!) We're very
proud of our two brave lovely boys. SEPT 3, 2007 - Thank You Thank you for all your advice about the head sweats and night screams. The possibilities suggested range from nightmares and teething to cardiac defect issues and ear infections. So, we are going to document it more closely and then speak with his pediatrician tomorrow and his cardiologist the following week. I'll let you know what they say. But I love this network because I have read every single idea and piece of advice and it's just so helpful. Good news about Angelo. He's had his closure surgery and it went well and he's home already! What a kid (I guess it helps his mom is a nurse). How exciting that he will finally have a flat tummy like his two brothers. As for Jonny, please see the new photos. I put them up because I want to show how much weight he has gained over these three weeks at home. He's now over 6 kgs! I can't wait until September 15th - that is the magic day that his chylorthorax treatment ends. After that day, if all is well, we can feed him breastmilk and regular formula by GJ tube and just about anything he will take by mouth (which I know is not much now but at least we can get back to trying). Speaking of changes, tomorrow Eli begins SK at the Downtown Jewish Day School. What a big boy!
Jonathan has been throwing up and retching less at night which is a very good thing, but he's been doing this screaming thing lately which is really unnerving. From a sound sleep he will groan a bit and then, before we are fully awake, he will let out a full scream like a horror movie, with wild eyes and arms flailing. He'll scream once, sometimes twice, sometimes three times, while we scramble with hearts pounding to find him in the dark and figure out what's wrong. Then, most of the time, it will pass as quickly as it came. And we're left scratching our heads with wide over-tired eyes. Until it happens again. I am really confused. I've never seen him be like this with gas pain. Is it night terrors (I've read that surgical babies often have night terrors) or is it GI pain or is it something else? That and the head sweating (soaking the sheets) have us kind of stumped. AUG. 30, 2007 - Big Boy We're home almost three weeks now, and
tomorrow is the first day of September. We can't believe Eli will
be starting school next week! Our big boy. And we will miss him
so much - and more so, he will miss Jonathan. He was upset about
going to his beloved soccer camp, and other fun family engagements,
because "Jonathan won't see me all day". I (Diane) am
determined to do whatever we can to give these boys, and this family
the time it needs to be settled, together, happy. ?Some Milestones
for Jonny: He is now 5.98 kg's! The other Big Boy. For a baby who
was stuck at 4.62 kg's for three months, this is amazing. He's gained
over 700 grams in three weeks since he's been home! And he is having
full-on bubble-blowing raspberry conversations with Eli and us.
When he drops a toy, he literally yells in your face. It's fantastic!
He's also progressing well at sitting upright unaided. For a kid
who spent nine months on his back, in pain, or sedated; and who
also has no abdominal muscles (not unlike me) to be able to sit
up and balance is huge. Oral feeding is still slow. We can't wait
until the chylothorax is officially clear and we can give him fatty
foods, and breast milk again (from our deep freezer - thank you,
Vic and Harv). We also had a brief scare with his tube yesterday,
which, thankfully, we managed to unblock without having to go back
to hospital. AUG 29 - On The Other Side We are thinking every day of Stephanie and Heiko and their families who are still in hospital fighting devastating infections (among other things). They are both beating the odds but dealing with far too much. Now we are on the other side, at home, reading posts but distanced from the hospital life and feeling somehow helpless. Thank you to those who follow and post support messages on Stephanies carepage. I (Janis) know how much those messages can lift you up during difficult times. I don't know how many of you are also following Heiko as well, but if you are, you will know that as of today there was news of new lesions that are very concerning. We send prayers and love to his family. And now Angelo, who is another O baby friend of ours (not really a baby anymore since he is almost two). Angelo is going in on Thursday for his closure surgery, which will be a big deal, so we are thinking of him and his family as well. The last surgery for Angelo did not go well. I am wishing for no complications this time. I hope all goes well and he has a good recovery and is back home as soon as possible. May this be Angelo's last surgery for a very long time (maybe ever?).
Just a quick update to say that, despite his sobering follow-up appointment on Friday, Jonathan has decided that he would like to try and sit up (with help for balance), to grab his foot and put it in his mouth, and to make raspberries at me (Diane). He has also started to squeel with glee. Medically, we are holding steady with Jonathan's feeds, still dealing with head-sweats and retching (especially when he has to poop), not the greatest sleeps, and we're trying to get his itchiness under control. Janis and I are learning from our mistakes regarding his care (it really could be a full-time job). Many parents say that once they're home from hospital they suddenly "get it" that their child is really theirs. We're melding together as a family again. Janis, me, and our two boys.
Today
Diane was rushed on her way to take Eli to her parents and set out
the monogen in a glass bowl on the counter but forgot to put in
the boiled water. I came down and added the amount of water we usually
use and stirred it up and portioned it into the small containers
to be used in his GJ pump for the next 12 hours (a twice-daily ritual).
Turned out she had set out enough for 700 ml of water and I had
only added 525 ml. So, Jonathan spent many hours today on a highly
fortified formula. As a result of our mistake - we believe - his
abdomen distended, he was very gassy (gas is more painful for him
than the average baby) and he threw up twice. In the end he is alright
- we turned him "off" for a longer break and just dumped
the whole supply and started again - but I mention this because
it's an example of us being new to this. Mistakes happen: g-tubes
get yanked, feeds can get miscalculated, meds are forgotten or mixed
up, supplies run out, formula spills, lines get blocked, attachments
don't fit, brothers scare and squeeze too hard. It's nothing new
to parents used to this but we are still getting used to taking
care of a special child at home. The good news is that despite his
imperfect and klutzy family, Jonathan seems to be thriving. Yesterday
at the doctors he weighed 5.5 kg which is over 12 pounds. This morning
Eli announced that Jonathan had gotten "chubby" overnight.
AUG.
19, 2007 - Eli's 5th birthday!
AUG
9, 2007 - What They Think is Happening Later.
Update after rounds. Diane here. Jonathan's abdominal x-ray looks
fine and his chest x-ray is clearer than yesterday. The theory is
that some of the vomiting last night and today is from mucus that
has been mobilized in his lungs. He coughs it up, can't spit it
out, so he swallows it and then his tummy rebels. Also, maybe he
might be having intermittent episodes of intucception - a painful
telescoping of the bowels common with GJ tubes, that is resolving
itself. The mucus is coming because his lungs are getting better.
By expanding and reinflating, mucus is released. So, Jonny may have
coughs and spitting up for a week or so, and a lingering cough for
a few months until all the fluid and mucus is gone. But he does
not have to be here until then. Our NP said, that they can't send
him home with lung congestion and poor oxygenation. But once he
can spend 24 hours off oxygen with SATs in the low nineties he can
go. This will probably happen as more fluid and mucus is expelled
(both through lasix and through 3 times a day physio and coughing).
We have not asked for, nor have we been given another timeline for
discharge. I'd prefer not to have this family be disappointed again.
AUG.
7, 2007 - 10pm - Update AUG
6, 2007 - Collapse and/or fluid? Aug
2, 2007 - Rollercoaster Update: Jonny is still throwing up each day. A lot more mucus than I'd think possible given he has no food in his tummy. They think it's related to his slow motility and not being able to process even his gastric juices well. It hurts him each time - I can tell it burns - so I'm going to meet with his NP Linda today to see if he needs his motility and/or antacid meds increased. AUGUST
2, 2007 - Closer to Discharge JULY
31, 2007 - Smiles - 9:30 PM p.s. Diane and I have finally posted our speeches from the Jon-a-thon night, and some pics. We are working on posting the slide-show. JULY
31, 2007 - Eating & Development JULY
29, 2007 - Going Home Soon? As for Jonathan well, despite some constipation, stomach cramps, chest pain, sweats and diarrhea, Jonathan is doing relatively well. They are working on slowly getting him gaining weight and on the new formula and off the TPN. He's up to 4.8 kg (about 10.5 lbs), 12 on his formula and down to 15 on his TPN. Given Jonathan's past, they are taking this new transition cautiously which we support. At the same time, the chest tube seems very uncomfortable, and the PICC line keeps twisting and occluding so we are anxious to be done with both. I promised the nurses I would bring in champagne the day the chest tube comes out. It's all up to Jonny now, carrying on bravely, and his little body handling what is being thrown at him. I can't help getting ahead of myself and dreaming of finally being out of the hospital and having Jonathan at home. I (Janis) even made a list of things I will and won't miss… Things I won't miss about hospital life: 1) my poor little baby being sick enough that he needs to be in hospital, 2) the heartbreaking sound of children and babies crying in the night, 3) the Codes Blue (arrest) and 50 (trauma) that happen way too much here, 4) Jonathan and I both being woken up all throughout the night by alarms, beeping pumps, nurse check-ins, meds, etc, and therefore being tired all the time, 5) always being away from one or the other of my children, 6) Diane and I being like shift workers who pass at the gate, 7) being isolated from the world, 8) the unpredictable, tumultuous life that affects the whole family, especially little Eli, and finally 9) the expensive, lousy food. Things I will miss about hospital life: 1) The parent and children friends we've made here, 2) wonderful nurses, doctors, RTs and NPs who love and understand Jonny in a way no others can, 3) having the instant support of the above - day or night - when Jonathan is suddenly not well, 4) having a pharmacy just down the hall (also day or night), 5) the atrium waterfall that Jonathan loves and could watch for hours, 6) the skilled and top notch minds that we can get access to when Jonathan is being complex and we don't know what's wrong. That's about all. BTW - Thank you for the gentle nudges about photos. We have put some new ones up on the photos page and two on The Jon-a-thon page. We will have more of The Jon-a-thon night very soon. July
25, 2007, 10pm - J-Crew Report We were alerted to this new formula by our dedicated NICU NP and dietician. Monogen is very new, and has the same kind of low fat as the previous formula, portagen, but it also can be fortified to help with weight gain. The drawback that was mentioned to us is that it is not yet covered, and since Jonny would have to be on it for at least 6 weeks at home, we'd have to pay approximately 700-800 dollars for it. BUT, we have a community behind us! Right after hearing about monogen, Michelle, Jane and Dawn (the J-Crew) came to the hospital to talk Jon-a-thon with us. (Sick Kids will never be the same. That J-Crew rocks so intensely.) The J-Crew gave us the total raised at the Jon-a-thon so far. Get ready. Wanna take a guess? No, I'll tell you: $47,775!!! Unbelievable! Absolutely amazing - we can't even really comprehend such generosity and kindness. It's overwhelming. I've said this before, but I really forget that the Jon-a-thon was about raising funds. It had so many other incredible effects on us and all the people here at Sick Kids around us. Not only will this help our family immeasurably, but Janis and I spent some of the day today talking about how to best use the portion we want to donate to Sick Kids. What is the best legacy of the Jon-a-thon? It is a really exciting conversation. What a community we have. We are so proud! What kindness and caring. Imagine how Jonny will feel when we tell him about all of this! I know Janis would say that she doesn't think it's a coincidence that Jonny is starting to heal right after the love wave that was the Jon-a-thon night. Our eternal thanks, love, and respect to all of you. JULY
25, 2007 - Light at the end of the Tunnel JULY
23, 2007 - Cautiously Optimistic JULY
22, 2007 - Positive Steps p.s. As we were leaving the hospital, Eli said in a sing-songy voice, "It's sad-sad that Jonathan is in the hospital and I can't see him in the middle of the night." I said that it was sad, but that Jonny truly seems to be getting better. I said that when he's home this time, he won't be going back to the hospital except for short check-ups or short times. Eli said, "That's what you think." I asked why he said that. He said, "Well, last time you said it would be a short time. And it wasn't. So, we'll see about that." 5 going on 50. JULY
20, 2007 - Weight Gain Courage July
19, 2007, 10pm - Slumberman On a Jon-a-thon note, I, like Janis am still moved deeply, and still chuckling like hell. Today I thought about how Bruce McCulloch said that he thinks the whole bible is true, there is just one part that isn't: that God exists, and I did a spit-take. I have to admit that before the event, I think I was getting depressed (was I covering well?). I was lethargic, distracted, feeling hopeless. Since the Jon-a-thon, I'm not all "polly-polly bright-side", as Jane would say, but I feel like my spine has been strengthened. I feel rejuvenated for the struggle. And Jonny laughed today, like you wouldn't believe, at some sound effects I was doing with Eli. I tip my hat to Colin Mochrie, Kathy Greenwood, and Teresa Pavlinek, for their brilliant sound-effects improv at the Jon-a-thon, for the inspiration! Thank you all! JULY
19, 2007 - Back Down to Earth JULY
17, 2007 - The Jon-a-thon JULY
14, 2007 - Eight Month Birthday JULY
12, 2007 - Stable but not well Many of you have asked so I wanted to say that little Heiko is still fighting the good fight. I am just so impressed by his strength and resilience and by the love and devotion of his family. Every time I hear stories about him I imagine Eli and Heiko would get along very well. I hope you can continue to think of him and wish him well. Every day right now is big. Also, I am so amazed by the wonderful phenomena that is The Jon-a-thon. Apparently it is almost sold out (perhaps it is sold out now). I go to the site and read the comments all the time, especially when I am feeling tired. I really wish Jonny could be there in person for it, but that looks very unlikely now. I think, though, that he will feel the energy of the night and make a sudden and miraculous turn around on Tuesday that will leave all the doctors and nurses scratching their heads! JULY
11 - Prayers for a Little Friend July
5, 2007 - Liver ultrasound p.s. On a personal note, I (Diane) apologize for not telling anyone, I've been so out of it, but Moose TV, the TV series that I acted in last summer, started airing tonight on Showcase. (It will air Thursdays at 9:30 for the next few months www.showcase.ca). It was last July, when we were almost finished the shoot, that Janis had her 18 week ultrasound, and Jonathan's omphalocele and TOF were discovered. That's when we began this journey and this website. It truly seems like a lifetime ago. JULY
4, 2007 - Surgery Consult So, the plan for now is to wait until next week. If the drainage keeps trending down, then we stay the course. If it goes up, or just doesn't change at all, we may try and book a surgery date (which we'd have to wait in queue for). Bottom line: long haul. JULY
3, 2007 - Drainage Up Again "Hope is the thing with feathers/ that perches in the soul/ and sings the tune without the words/ and never stops . . . at all" -- Emily Dickinson. June
30, 2007 - 11pm - Drainage Down The other issue at the moment is his weight. He has lost weight again. He weighs less now than he did when he was discharged from NICU at the end of April. He's about 10 pounds (of pure delight and courage). We hope we can crack this soon. But mostly - we're keeping everything crossed that this low drainage is real. June
28, 2007 - Still Draining The Jon-a-thon is a lifeline right now. The sense of awe, of hope, of pride in our community - the gratitude. These are not feelings that we'd normally feel in this situation. And to be so moved and overwhelmed by them in the midst of all this is a tremendous and startling gift. Not to mention what it will mean to Jonathan, now and in the future - when we tell it as a big part of his story, when he's old enough to be told. Just imagine! Anyway, I'm sitting here at home, with my mind reeling, unable to sleep, and I turned to the Jon-a-thon, for the third of fourth time today, and then had to take a moment to thank Michelle (what vision, Mich!), Jane and Dawn, and everyone who's been a part of this beautiful evening so far. June
27, 2007 - New Pics Janis got very little sleep again last night. Jonny wasn't bad - but there is not much way around the constant interruptions - the high-pitched beeping of the TPN pumps, his nurse needing to give him IV meds, and just the constant din of the hospital - announcements on the intercom, stat calls, people coming in to assess him (while he's sleeping?). Janis is the toughest person I know. June
26, 2007 - Day one of "the works" p.s.
We have a definition of chylothorax on the medical terms page. JUNE
25 - 11pm - "Throw the book at him" So, he's off feeds again and on TPN, he's getting steroids, and octreotide (now through an IV instead of painful needles). He's going to IGT tomorrow morning to finally get a PICC line put in so that they can give him a higher, more nutritive dose of TPN, and so he won't have to get poked for IV's or blood daily. Jonathan's cardiac NP, Kathleen, said she is crossing her fingers for Jonny that this will work. We've seen unbelievable things happen here with these resilient little fighters. JUNE
25, 2007 - 11:30 am - Resignation JUNE
25, 2007 - 3 am - Beyond a Rollercoaster The implications of this are distressing. This means that as we were celebrating the drainage going down and that octreotide working - it may never have been working at all. He may still have significant drainage. I guess we'll know truer figures tomorrow. The surgical meeting is in the morning. We are absolutely feeling sick that they will now probably recommend surgery. We'll check in later. In the meantime, I'm wishing sleep and recovery rest to Janis and Jonathan for the rest of the morning. P.S. - Just this past evening I overheard Eli whispering a song under his breath to himself on the way home from the hospital, "When is Jonathan coming home lala". I told Eli that Jonny's heart was much better, and they need to fix one small thing inside him and then he'll come home. "What thing?" (You can get away with nothing with Eli). I told him it was a cut that needed to heal. "How'd he get cut inside?" I explain it was an accident during surgery and it's the only thing that still needs to heal, and it is healing and he will be home soon. But I may have spoken too soon. June
22, 2007 - 5am Jonny teaches us resilience and spirit every long day. But in the middle of the night, there's room for Curious George and furious questions. JUNE
21, 2007 - Blockages & Drainage The other news today is that it seems Jonny's drainage from his chylo-thorax has plateaued at a too-high rate of about 75cc's a day. It needs to go down to 10cc's. The 4D cardiologist, Dr. Dipshan, told us today that Jonathan will be "presented" at the cardiology meeting on Monday. This means surgery will be discussed. To repair the "nick" of the lymph duct that occured in his first surgery. The lymph ligation would mean that Jonathan would have to endure another surgery where his chest and sternum is opened up. Another intubation, another catheterization, more morphine, swelling, longer stay in hospital, more weight loss - the whole thing. I told them they can open my chest up first, dammit. We're all hoping that a new higher dose of octreotide in the next 6 days will work. There has got to be another way. June
19, 2007 - Turning the Octreo-tide JUNE
17, 2007 - Dreaming The drama this morning was that his GJ tube blocked. Nothing could go in. They tried many things to clear it and just before they were thinking they had to take Jonny back down to IGT, it cleared with the help of a little gingerale. Phew. I just need to thank those of you who helped Janis get through this week. Your physical, moral, gastronomic, cyber, and spiritual support was at full throttle and I appreciate it. Okay, and one more thing, one of my absolute favourite smarty actors on (wait for it...) the L-Word, got her castmates to sign some wonderful items for the Jon-a-thon auction. When I look at the line-up and that auction list, I think I must be dreaming. The kindness, generosity and love that Jonathan's journey and this event has unleashed is astounding. p.s. Did I mention it's the L-Word??!! http://www.thejonathon.com/ JUNE
15, 2007 - New Tube The other drama today was that Jonathan's GJ tube pulled out. He had to be taken down to IGT (Image Guided Therapy) to have it replaced. Fortuitously, Dr. Fecteau was there and they had a good discussion about when to try and see if Jonathan's stomach is in the right place to try a G tube instead of the GJ. The short answer is "later." It wasn't pleasant but Jonny got through it all in his brave, strong way. Eli and my folks left for Toronto this morning. I am so grateful my parents were able to make this happen. Eli seemed to blossom even more in this rarified atmosphere, with no hospital stress. He is just beyond a darling, kind, fascinating fellow. Janis gets to see him tonight, and she'll get to go home for a few hours tonight too. p.s. BIG congrats to our pals Lisa and Ajike on the adoption of their new baby boy, Ezekiel. JUNE
13, 2007, 11PM, from Janis Diane here - Doing this show is the most surreal thing I've ever done - and I've done some doozies. I'm glad for Eli to have this Ottawa adventure, for our family to choose to take a step forward into life, for the response we've already got to the future possibilities for the show. However, I would like to be two places at once now. Tonight. Also a shout-out to our uber-devoted NP's from NICU, who always come help their Jonny at the right moments. They're like our fairy God-NP's, who know and love our tough little boy. JUNE
13, 2007 - Still Distressed Eli is with me in Ottawa and climbed on statues on Parliament Hill today. Jane mentioned that there is now a guest book on the Jon-a-thon website on which anyone can post comments - so, Maggie, you've been asking for that for a while and now, and thanks to Hillary C. (check out the inspired http://www.freshyarn.com/) - we got it. Also Janis asked me to post some more pics, so they are in the photo section. JUNE 11, 2007 - Chest Tube One of Jonathan's chest tubes had to be removed yesterday because it started to come out. If air gets in to the tube it can cause pneumo-thorax which is extremely painful and can cause lung collapse, so the cardiology resident on duty decided that since that tube wasn't draining very much, he would remove it. He had to re-suture the remaining tube in (which is still draining a significant amount) to ensure that the lymph can still drain out. Janis said when that first tube was pulled out of Jonathan's chest cavity, it was about 10 inches long. No wonder he is uncomfortable! He's being weaned from his morphine, and again had a very tough night last night. Janis again was up from probably 2am. She's trying to sleep a bit now with Jonathan. By today, Jonny should be up to a decent amount of feeds on the low-fat formula, portagen. He's getting steroids and I don't know yet if there has been any reduction in drainage. But I am happy to report that I got a smile from little Jonny yesterday before I left for Ottawa. The first one in three weeks. JUNE 9, 2007 - Still Draining I (Diane) was glad to spend last night with Jonathan in the hospital and he actually had a few more small stretches of sleep - so maybe the pain is getting under control. It's beginning to get clearer that the morphine withdrawal is part of the problem, but also his chest tubes are painful, as are all the iv pokes and meds, and Jonny needs more pain-control and help just to sleep. The NP's are working on a cocktail of drugs to help get through this. (I did joke that Jonny's on the Anna Nicole sleep med, chloral hydrate, but there aren't many who find that funny yet). His heart echo-cardiogram looked better, and he is only on a small amount of supplemental oxygen. Unfortunately, it looks like this long week of TPN has not succeeded in healing his damaged lymph nodes. They are still really draining a lot. So, they will soon take him off the TPN (thank Whoever), put him back on feeds and try steroids for another week, to attempt to heal the lymph. This chylo-thorax will be keeping him on 4D for a while yet. I leave to go to Ottawa tomorrow for a week (bringing along Eli and my folks) to do my solo show, Bear With Me, at the National Arts Centre as part of the Magnetic North Theatre Festival. This is the first acting job I've accepted in 6 months. It's been planned for a long time. (We had been assured by our cardiologist-who-shall-remain-nameless that Jonathan would have been home 2 weeks ago.) I still can't believe I won't be at Sick Kids every day to advocate for Jonathan and to struggle through all of this with Janis. Throughout our times of separation from Eli in the last six months, Janis and I always tell him that although we miss him, we have him in our heads and in our hearts, because we're always thinking of him and feeling love for him. This is what I'll also say during this week of separation from my brave Janis and Jonny: head and heart, my loves. P.S.: Happy Birthday to David, Ruth, Daniel, Alisa, Laura & Jordan. JUNE 6, 2007 - Stable Janis got barely any sleep last night as Jonathan was really agitated all night. Today he has been like that on and off but better than yesterday. I hope my boy and girl have a more peaceful night until this damn morphine can be weaned. It may a long while. The rest is status quo for Jonny. We're hoping the drainage from his lymph starts to slow down soon, and his breathing improves. Mostly, we're hoping for some pain-free awake time. JUNE 5, 2007 - 4D Cardiac Unit Early this morning, Jonathan was moved out of CCU and up to the 4th floor, the cardiac area. For most of the day, he was in a constant observation room - much like NICU. Tonight, he will be transferred to his own private room on 4D. Janis just packed her suitcase and left for the hospital to stay overnight with Jonny there for the first time. Now begins the next phase of Jonathan's and our journey. Janis and I have been such a team through all this, and now we need to do things separately. She said that she feels comfort knowing both our boys are taken care of by one of us. Just as I was sitting here missing her, she called and reminded me that we never thought Jonathan would get through the silo time, and he did. We all did. I'm sending her all the peaceful energy that I can scrape from the prickly corners of my soul. I hope she and Jonathan both manage to get some sleep tonight. The plus side of 4D is that we can have visitors and Eli can be there. One of our former NICU friends said that a day felt like a week up in the private room. She did manage to order in Chinese food, though... Jonathan was "neuro-y" today, as a CCU nurse called it. Meaning, he was in morphine withdrawal - neurological pain. He could not settle for hours, crying, pulling at his ears and his tubes. Some of his favourite NICU people popped by, and with four sets of hands on him, he dozed off. The 4D nurse gave him some benadryl, thinking he might be itchy from the morphine, and that did help. We met his NP who patiently talked us through the new environment of 4D. Jonathan's main issues are still this chylo-thorax, the morphine withdrawal, making sure his lungs can handle this new blood flow and that the fluid is under control, and his nutrition/weight loss. (He's very skinny). The NP warned us that this healing is all about time. Please send your love to Janis, to Jonathan and to Eli: the bravest people I know. p.s. Janis asked me to post the link to my Globe article from today and I hope I do it right: http://www.theglobeandmail.com/servlet/story/RTGAM.20070605.wxlflacks05/BNStory/lifeMain JUNE 4, 2007 - UNBELIEVABLE FRIENDS, AN UNBELIEVABLE EVENT, A NEW GOAL Back in November when Jonathan was born we didn't know if he'd make it. After doctors did their first full assessment of his conditions, we were told he'd be in the NICU for a minimum of six months. We couldn't bear the thought and set a goal to get him out in three. He was well on his way to reaching that goal when the horrible bowel perforation happened on February 1st. After that, a doctor told us he might still be in hospital on his first birthday. Others predicted September. But we set a goal of June. We just felt he must be home to experience summer. By April he was doing so well that we got really brazen and set a goal to leave NICU in time to bring Jonathan from home to Nurse Kelly's Humanitarian Award Celebration (in May). On April 30th, two weeks before the ceremony, Jonathan was discharged from the NICU forever! After three beautiful weeks at home Jonathan had to be re-admitted to Sick Kids for his heart surgery on May 22nd. That surgery experience, as you know, became more complicated and frightening than anyone predicted. We expected a couple of days in the CCU and then a week up in the 4D cardiac wing and then home. Two weeks later he is still in the critical care unit at Sick Kids. We have been told it may take another six weeks for him to be healthy and strong enough to come home again. We have been feeling tired and were starting to lose faith. That's when some wonderful people lifted our spirits and gave us reason to set another goal. Three brilliant, devoted, tenacious, extraordinary, visionary, hilarious, highly-attractive, lovely, kind, overwhelmingly generous, and did-we-say-so-smart pals of ours: Michelle Martin, Jane Ford and Dawn Whitwell have, in secret, spent months working and planning a night of celebration and fundraising for Jonathan. They have done it on their own initiative and kept us out of the loop. But today, they unveiled a website and an evening that looks so fantastic we can barely stand it. We are so overwhelmed and touched, and we can't keep it to ourselves. Please go to the website www.thejonathon.com and admire the line-up, the talent, the poster, the silent auction items, and all the incredible work of these good friends. All the information and links can also be found on the new button, "The Jon-a-thon", on this website. We just wanted to say thank you to Michelle, Dawn, Jane and everyone involved in this event. Thank you for loving and supporting Jonathan. Thank you for ensuring he will have the best care possible when he comes home. And thank you for filling us with hope and for renewing our fighting spirit. Our new goal is that Jonathan will come home from hospital in time to make it to the Jon-a-thon - a celebration/fundraiser for HIM and the Sick Kids NICU, on Monday July 16th at Diane's theatrical home, the Tarragon Theatre.
Jonathan has been taken off feeds again and put on TPN. This is a course of treatment for his chylo-thorax, which is not responding to the new formula (his chest tubes are still draining a lot of fluid). He will have to remain on TPN for at least a week, and then they will reassess. Once again, it's becoming clear to us that Jonathan will be in hospital for - at the very least - two more weeks (and that is independent of the fluid in his lungs or his heart or his morphine). Tomorrow, he will probably have to get a PICC line put into his body again to support all this IV nutrition. I (Diane) was able to hold him for the first time in almost two weeks today. He was uncomfortable at first but did settle. He's sleeping most of the time these days. Trying to heal. We really couldn't handle all this without the support all of you have given us. You'll see just one example if you read my Globe blog from Saturday. http://www.theglobeandmail.com/blogs/themotherlode Even though siblings aren't allowed into the CCU, today Jonathan's nurses let Eli come and stand at the doorway to Jonathan's room and blow him a kiss. Eli finally got to see Jonathan, whose nurses covered up his chest tubes and scars. Eli wanted to know why Jonny had tubes in his nose again (the low-flow oxygen nasal prongs) and I explained that it was air to help his heart heal, and Eli said, "but air goes into the lungs, not the heart." Smarty-boots. JUNE 2, 2007 - Better I (Janis) think I can say that Jonathan seems a bit better today. It's been such a rollercoaster. And as one of his gen surg fellows, David said, "As quickly as these little ones go sour, they can get sweet again too." So, I'm hoping Jonny is getting sweet. There are hurdles to overcome: the continued pain and discomfort of recovery, his fluid retention (especially in his lungs), what will be a slow and difficult withdrawal from morphine, his infections, and the chylo-thorax which may keep him in hospital much longer than we'd hoped. (While the lymph is not working, those chest tubes have to stay in and he can't go home with chest tubes). But his heart seems much better and he is stable and calmer today than yesterday. So, I thank god for small mercies and hope for continued recovery. JUNE 2, 2007 - New Links On the links page you will find two new additions. One is a link of an animated beating heart that helps show how the heart works so you can easily visualize Jonathan's problems (particularly the hole between the ventricles and the narrow pulmonary artery and valve). Thank you Katie for sending that. Also, there is a link to a Fox news video about a little girl named Brianna who was born with an omphalocele. Her mom, Kim is on a yahoo group I'm on. It's short but interesting. You can see the whole story on the Links page or by copying this address: http://www.myfoxdetroit.com/myfox/pages/ContentDetail?contentId=3346543 JUNE 1, 2007 - Day 10 in the CCCU Today
Janis and I had "long haul" flashbacks. He was only supposed
to be in the CCU for a couple of days and here we are ten days later
with no certain end in sight. Jonathan was in a lot of pain today.
He woke crying, panicked, his eyes pleading. As a parent, it was
a terrible day. [Janis here: Because he was intubated his voice
sounds very squeaky and raw. We have been told that it's because
of swelling around the vocal chords. I would really like to hear
his normal voice again so I can be reassured.] In rounds the theories
for Jonathan's pain and crying range from morphine withdrawal, GI
issues, his neck IV line (that was pulling out), his sutures, muscle
pain, fluid retention (see chylothorax below), even hunger/thirst.
The neck line was removed this afternoon, and his morphine is being
held steady for now. He's also being given something - clonidine
- to help with withdrawal, and sedation to help him sleep. This
evening he woke up and was uncomfortable, but not panicked, and
got back to sleep relatively easily with his dose of tylenol, some
sedation, and his soother. We are hoping and praying he will have
a good night and be feeling better tomorrow. MAY
31, 2007 - Improvement Jonny is moving slowly, but in the
right direction. He's been taken off C-PAP and is doing well with
supplemental oxygen (nose prongs). His colour is better and his
catheter has also been removed. His feeds have moved up to 13 and
they're adding lipids (fats) which is good because he's lost weight
through this ordeal and you all know he didn't have much to lose
in the first place. His little legs look just tiny and his back
is all "woody" from fluid retention. He is still in pain
and not yet really awake (he remains on the same levels of morphine
& tylenol) and his condition is hard to bear, but he's moved
from critical to stable and he looks better. So, the darkness and
great fear have receeded somewhat. His nurse said he looks like a different
baby from yesterday morning and I agreed. I'm cautiously optimistic.
What I'd really like for Jonny now is for him to get off oxygen
totally, be able to breathe on his own and to have him be more awake
and comfortable. I hope tomorrow brings good news again. Images
from the last week are seared in my mind. Thank you for your support,
prayers and good wishes.
Jonathan
has had to be put back on pressure support ventilation (C-PAP).
Not a tube, but an imposing face mask. They've increased his morphine
and upped the lasex infusion. He is very grey and uncomfortable.
He's working hard to breathe and looks rough. His pressures are
up again, SAT's low, and breathing fast. Our Gen Surgeon, Dr. Annie
Fecteau came by today to look in on "her patient". To
make sure the feeds go slow and his GI tract is looked after. I
loved that. Another advocate for Jonny. They explained everything
to her and to us. They believe that his right ventricle needs to
recover and be less stiff, and relax. The ventilation is there to
help with that. They may also give a transfusion today (later: they
did). They believe the next few days are key. It is difficult (understatement)
to see him looking like he's deteriorating again. We hope the next
twelve hours or so will show some improvement. MAY 29, 2007 - The Drop Zone Jonathan
has been weaned off the ventilator - good news - and is now on the
oxygen box; a plastic box put around his head and hooked up to an
oxygen tank. So, he is breathing by himself but getting extra support
from the environment. It's a bit strange looking. I took a picture
last week so I'll post it (see photos page). Next steps are to get
him out of the box, off the morphine and begin feeds again. As for
his heart pressures (CVPs) they aren't that much lower than pre-surgery,
but we're told it may take a few days to really know how he's doing.
The doctor has indicated to us that Jonathan's stay will be longer
than expected. There are days when I feel like we've been sucked
back into an unpleasant alternate reality. Back in the hospital,
on the rollercoaster, worried, taking it day by day, not knowing
when the end will come. (Diane here:) Jonathan's RT today said that
it's like a rollercoaster, and I said we'd already been on one but
that this one has extreme swings. He said this ride is like the
Drop Zone. Exactly. Janis again: Related to this is the fact that
the CCU and NICU are in many ways very similar so it feels surreal
at times - familiar but also quite different. Similar layout but
all new faces, for example. There is more space in the CCU rooms
and therefore we have a bit more privacy. The waiting area is bigger
and has places to lie down if you need which I think would be really
great for NICU (all those poor new moms who just need a nap!) There
are no Nurse Practicioners in the CCU which is a major shame, as
you all know how important NPs have been for us. But the biggest
difference is the children. NICU is newborns and babies. The CCU
has newborns, babies, children and all the way up to teenagers.
Hearing the older ones cry is really hard. The CCU doesn't allow
any siblings or visitors either. Fortunately, Jonathan's friends
from the NICU and Gen Surg come down to check on him, say hello,
and give us a boost. I look forward to Jonathan being more awake
so he can see them too. Mostly I look forward to him doing better
so he can move upstairs and Eli can come and visit. Actually, mostly,
I want Jonny healthy and home so we can all be together again. Diane
here: Eli told us that Jonathan is staying in the hospital longer
because they have new tools. He said the nurses there love him.
Eli himself needs that embrace and care, as does Jonny - and we
know how much all of you are providing it. Here, hands-on, and from
all over with the love you send us. MAY 29, 2007 - 8:00 am Janis
stayed overnight at hospital and I returned home late to be with
Eli this morning. She just called in to say he's doing okay but
his CVP is back up, and they were unable to wean him off the vent
last night. We haven't been updated on the plan today or what this
means, so will attempt to post from the hospital later. MAY 28, 2007 - Second Surgery Jonathan
made it through the surgery and the valve was cut open and patched.
The procedure itself went according to plan, the pulmonary valve
will not work as a valve anymore - but also not an obstruction,
which is what was causing him to deteriorate (they think). Some
of the pressures his (centtral venus pressure - CVP) are down to
the level that they want. However, Jonathan has had a huge hit and
this evening he is in rough shape. It will be a long night. He has
huge challenges to overcome. We know this time it will be a long
haul. Thank you for all your gentle vibes sent his way. MAY 27, 2007 - Second Surgery Tomorrow Jonathan's got better colour and is slightly less puffy this afternoon. He was looking really awful yesterday and into last night (both Diane and I admit we were very frightened yesterday by his dramatic downturn). But he is basically being managed now with the ventilator, IVs, pain medication, sedation, etc. And he's been put on three antibiotics because he had a fever and they are worried about infection. So, this can't go on. He's not well and the more they investigate, the more they seem to circle back in on the pulmonary valve as the root of the problem. They are very concerned about his condition and pulled forward the consult to today. A Cardiac Fellow came to us this afternoon and said they have decided he must go back into the operating room as soon as possible. The second heart surgery has been set for tomorrow (Monday) at 1:00 PM.
Janis
mentioned she's discovered a few things about herself lately. When
she's really under duress she craves chocolate and finds spending
money therapeutically distracting. As a result I have blocked amazon
and e-bay after 10pm. And no more Canadian Tire. Also, her body
has now added hives to the Alopecia stress reaction she is already
experiencing. So in the not too distant future, if all things continue
as is, Janis figures she'll be fat, bald and broke. Oh, and I have
a sty in my eye, heart palpitations and have developed a new fondness
for cheezies before bed. We make a snazzy couple. MAY 27, 2007 - Stop The Train As a parent, last night Jonathan's
condition felt like a train going off the rails. Jonathan's blood
pressure was low so the resident began regulating it with the drug
dopamine. In order to constantly monitor his bp the resident put
in an arterial IV line. To do that, he put Jonathan on that awful
muscle paralyzer, pavilon, as well as fentanyl (on top of the morphine
he is already on). He was given dopamine to bring his bp up, then
weaned off it because the bp got too high. And then put back on
because it went too low again. They also noticed a fever and took
cultures in case all these interventions have given him an infection.
Fluid from his chest tubes appeared cloudy so they did an xray and
suspect drainage from the lymph nodes - which is related to fat
intake. So, they stopped his breast milk and put him on a formula
called portagen - which somehow neutralizes the fat issue. When
we found that out, I suggested that before they put him on any formula
they consult with his General Surgery team. Janis had already recommended
a consult yesterday. His gen surg team really knows him and have
managed his omphalocele and gut issues for his while life. In the
meantime, he is now NPO. He's still on the vent and morphine and
his catheter is back in. This morning I sent our NICU nurse Kelly
an e-mail and I called NP Judy who gave us some good information/interpretation.
She also said she'd let his gen surgeon Arnaud know what has happened.
This
morning Janis and I were very distressed to see that Jonathan's
condition was markedly worse than yesterday. He was uncomfortable,
often crying, his SAT's were low, his breathing was too fast, and
his pressures too high. He was very puffy and grey. It was really
bad and frightening. So this afternoon he had to be re-intubated.
He is back on morphine again which is also a step backwards, but
we are grateful, as he was really uncomfortable and in pain and
struggling to breathe. The last thing we'd hoped to see was that
breathing tube, but there really was no choice. At least now he's
more stable. Something has to be done about this valve. We have
got to get him out of there - because to us at this point the cure
seems worse than the disease. There will be a big meeting of the
cardiology people on Monday. They'll then determine what to do.
Our poor little warrior. Can nothing be easy or straight forward
for him? MAY 25, 2007 - Heart Pressures Here's what we've finally gotten clear. At present, the doctors feel that he is struggling due to his heart pressures being too high because that pulmonary valve is too tight. (The surgeon left the valve as it was because he thought it was borderline and it might stretch). They are going to keep trying to bring down Jonathan's swelling, they're upping his feeds, and they're watching him this weekend in CCU. Then Sunday they will do an echo-cardiogram to measure the valve. They will look at the echo and all his numbers on Monday and decide if/when, and how they will go back in to do another open-heart surgical procedure to widen the valve. This is crushing news to us. Jonathan is, to put it bluntly, a wreck. And to think he'll have this week of recovery and then get wrecked again in O.R... Today I was so embarrassed because I could do nothing to stop my tears in CCU - I was so sad and angry that poor Jonathan is in this situation, after all he's endured - and that it might be prolonged. Eli keeps asking how many more days Jonathan has left in hospital and why siblings are not allowed in CCU. We are hoping and praying that the numbers and measurements will improve by Monday. Any assistance in that area (hoping, praying, chanting, wishing...) is appreciated. We really need a miracle this time.
Jonathan began releasing urine last night.
That was a great relief. Poor Jonny is really swollen, clearly not
comfortable and is struggling to come awake but his blood pressures
are moving in the right direction so they are going to give him
a bit more time to stabilize before doing anything invasive. Everyone
is watching him and his numbers very closely (they are taking blood
every two hours). They started his feeds again today at 2:00 pm
which I'm glad for (he has always done better on feeds). Hopefully
he will continue to improve and no major interventions will be necessary.
He is such an inspiration. So many of his friends from the NICU
continue to come by to check on him and wish him well. He will probably
have to be in the ICU for a few more days but we can't say anything
for sure right now. I guess we must take things day by day (or even
hour by hour). Thanks for your thoughts and prayers. Will post more
later.
I
am going to be very brief here because I'm tired and need to eat
before getting back to the hospital but I thought I'd relay the
latest, which is unfortunately not good news. Jonny has not been
urinating - despite diarhetics and transfusions. He is not getting
rid of fluids. As a result he is getting very puffy but more importantly,
it causes the doctors to question whether there is sufficient blood
flow to the kidneys and if not why. So, they did an echocardiogram
and found two other things: 1) a small blood clot (not in a vein
or artery) behind his right atrium and 2) that the pulmonary valve
is potentially narrower than they thought. They are watching him
very closely now and have told us he will not be graduated to 4D
tomorrow. They've warned us that if things get worse he may have
to go back into surgery. On the other hand, some of this may resolve
itself with time. Our NICU NP's told us that sometimes the organs
"take a hit" as a result of being on the heart-lung machine
for open heart surgery. So, we need to watch and wait. As the doctor
said, "Time is knowledge". So, all energy please towards
things getting better. We hope to report a better scenario tomorrow. MAY 23, 2007 Morning - Post Op Recovery Jonathan
is still in the Sick Kids CCCU (Cardiac Critical Care Unit) one
side of the PICU (Pedeatric Intensive Care Unit). He is now on nasal
prongs for a bit of supplemental oxygen, his sats are good, his
breathing tube and catheter have been removed and so has his drainage
NG. His heart rate is also good and, though he's had some bleeding
and chest cavity drainage, the nurse tells us it's normal. He was
topped up with a blood transfusion and had electrolytes and glucose
added as well. Around 11:00 pm they moved him off the stretcher
into a more comfortable bed and lay him on his side and he slept
for quite a few hours. At around 4:00 am he was showing pain/discomfort
so they gave him a half dose of ativan to top up his morphine but
that caused his blood pressure to lower. They don't want to give
him tylenol (his liver numbers are still high from the TPN and tylenol
is hard on the liver) but maybe codeine can be used in the future.
Today, if he continues to recover on schedule they will begin feeding
slowly and he may get moved up to the cardiac unit by tomorrow.
New pics have been added to the photos page. Warning, two are a
bit tough to look at. It's sad to see our poor little Jonny back
in the hospital in such tough condition. But he is doing well and
the doctors are optimistic that he'll be good to go home within
two weeks and be fully recovered within a few months. What a little
fighter our wonderful Jonathan is! MAY 22, 2007 - Heart Surgery After about 5 hours, Jonathan made
it through his open heart surgical repair for his TOF. The surgeon
felt that it went well (he spoke to us very briefly). There is still
a narrow valve between his ventrical and pulmonary artery, although
it's in the "acceptable" range. In his bed in the Critical
Care Unit, Jonathan is very full of every tube one could imagine
and then some. As I write this, he is starting to wake from anesthesia
and is thrashing a bit in discomfort. He will be extubated from
his breathing tube tonight, so that will make him much more comfortable.
Despite all that, he looks like himself. We are very relieved. We
know we have to take time in increments of hours at the moment.
Thank you all for your love, calls, emails, and prayers (secular
and otherwise). We know Jonathan is feeling it. And a special thank
you again, Janie C for this morning, and to Doris, Kelly and Dan
and David. We are so grateful. Many of our NICU family came to see us and pave the way for us in
CCU: NP's Carol and Judy, Nurse Kelly and Cindy, dietician Laura,
and Lyndsay (Jonathan's RT). Arnaud, his general surgeon, walked
him into the OR this morning after Janis had to leave him, like
a friend and protector. We feel so lucky to have these kind, devoted
people looking out for Jonny.
Tomorrow
(Tuesday) morning at 4:00 am we turn off Jonathan's milk and then
pack up and get him to the hospital by 6:00 am. Unless he is bumped
by an emergency (which I really hope not) he will go into the operating
room at either 7:30 am or sometime around 2:00 PM. I don't need
to ask for your prayers, chants, thoughts, good wishes, etc. I know
you're with him in thought and spirit. We'll post a report on our
little fighter as soon as there is news. Eli said a special goodnight
to Jonathan, and was chokeup up at Jonathan having to go back for
"seven days?". He kept asking again and again how long
Jonathan would be in hospital and why was he going to Sick Kids
when he is not a sick kid anymore. MAY 18, 2007 - New Pics Jonny is doing great these days although
he still doesn't seem to be gaining weight. He looks good to me
so I can't believe it. Our friends Wendy and Carol came in last
weekend from Halifax to visit and took some amazing pics so you
can see for yourself. On Monday we had the surgery pre-op day (see
below) and then on Wed we were back at the hospital for The Sick
Kids Humanitarian Awards Ceremony. Nine awards were given out to
nine very exceptional people (doctors, nurses, students, researchers).
It was both moving and inspiring. Diane did a great job at the introduction,
Jonny was a good boy throughout the ceremony (including going on
stage to help present the award) and Kelly made a wonderful acceptance
speech. It was also beautiful to see Lauren (6) and her Mom, and
Angelo (2) and his parents. They were both taken care of by Kelly
in the NICU as well. There are not that many omphalocele babies
born each year and the giant O's are even rarer so I feel a special
link between us "O" parents. On a last note I wanted to
publicly congratulate Robin - a member of Jonathan's care team -
who just got the news that she's been accepted to McMaster Medical
School. It's great news for her and great news for health care in
Ontario.
We spent the day back at
HSC today. Boy, was it weird walking through those doors! Looking
up at his 3rd Floor window gave us chills. It's surreal that we
are out after so long. Some days it all feels like a dream. Anyway,
thanks to Jane F. for driving me (Janis) and JJ in so early this
morning. Jonathan had blood tests and x-rays on the main floor to
begin and then we went up to the 4th floor Cardiac Unit for an ECG
where we also had consults with the cardiac fellow, cardiac surgeon,
anaesthetist, dietician, two researchers and lots of waiting in
between. In the afternon we had a power point tutorial about how
to prepare for surgery and what to expect. His surgery will be on
Tuesday May 22nd and we must be there at 6:00 am. He may go in in
the morning or the afternoon and the procedure can take from 4 -
7 hours. After the operation he is taken straight to the CCU (critical
care unit) and when he is well enough to breathe on his own he will
be extubated (remember that?) and brought back to the 4th floor
- first in a "stepdown" room and then eventually to a
private room where we can have visitors. We could be there for up
to two weeks (but hopefully less). Listening to the Fellow go on
about the risks of this surgery (strokes, heart blocks, bleeding,
nerve damage, death) made my head literally pound. Talking about
the procedure details (chest tubes, sternum wire, heart-lung machines)
made me feel nauseaus. The thought of seeing poor Jonathan all physically
wrecked again made me feel sad. Especially since he's been doing
so well lately (check out the new photos). But we have no choice
here: He must get his heart fixed. TOF is dangerous and even if
there wasn't the risk of a dreaded "Tet spell", TOF babies
work too hard - spend too much energy - just existing. He must get
bigger and better and stronger. So, we'll all do like the Queen
- "stay calm and carry on" - and treasure this week with
our precious, miraculous little fighter.
We had our first week all together
and it was wonderful. The weather is warm and sunny and Jonathan
is really fitting in to our life and adjusting remarkably well.
We even went to the Forsythia Festival in the local park all together
this weekend (portable pump over our shoulder or slung on the stroller).
It's been lovely showing him off to neighbours and friends. He is
small for his age, and still a bit yellow, and I see people look
twice sometimes at his feeding tube and princely tummy, but he's
still got those flirtatious smiles that charm everyone. His care
is a big job, and luckily Janis and I have each other, and our helper
Eli. But we are also going to apply for some nursing assistance.
But in general Jonny is just doing great. What a miracle.
Well,
we've been out of hospital 3 days and so far it is wonderful! We
took Jonathan for his first stroll outside and he was amazed! And
despite his challenging schedule, all our fumbling with meds, spilling
milk, fortifying wrong amounts, putting attachments on upside down,
etc, etc, Jonathan seems to be thriving. And our family is thrilled
to be all together. Eli is being a great helper and is very happy
his "cutie-pie noochie" is here. Yesterday we all gave
JJ his first sponge bath in our (germy) bathroom. He hated it, of
course, but it was great. Sleep? Not so much, but who cares! (see
some new pics on the photo page). APRIL 30, 2007 - HOME!!!!!! Amid
tears, huge amounts of emotions, 36,000 ml of frozen breastmilk,
gratitude beyond belief, and some chocolate cake, we packed our
car with 6 months of gear and our baby boy, and left The Sick Kids
NICU this afternoon for the last time. As I write this, Jonathan
is fast asleep on our bed, as is Janis, beside him, for the first
time. We thank the incomparable NICU team - there are no words for
our appreciation, unending respect, and adoration. Janis asked me
to extend an invite to our loyal, devoted, tremendous, generous
family and friends to meet Jonathan in the next few weeks. Just
come on by the house. Other than taking Eli to and from school and
other small errands we plan on staying close to home for the next
liitle while. We'll give you the Silkwood scrubdown and anti-bacterial
full-body dip, and then come meet the miraculous fella!!! I'm off
to pick up darling Eli and let him welcome his baby brother, finally,
home. April 27, 2007 - Stephanie Fundraiser Many of you have heard us
speak of Eli's friend Stephanie. Stephanie is five years old and
she was born with the same diagnosis as Jonathan (giant omphalocele
and TOF). Stephanie and her mom have been incredible inspirations
and supports for us from even before Jonathan was born and especially
during our time here in hospital. I'd like to promote a fundraiser
that is being organized for Stephanie in Montreal - where her family
is from. It's a Pilates themed fundraiser to help her get the medical
assistance she needs (probably in the U.S.). The event is on Sat
June 16th at 9:00 PM at Tennis 13. So, tell your friends in Montreal.
Or anyone can contact Core Basics Pilates Studio and donate through
a contact there. For more information about the event and to learn
more about Stephanie's story here is a link. http://www.corebasics.com/pilatesmatathonhtm.htm
So, we're running around like
chickens these days getting everything done for his departure from
the big institution Monday. We're cleaning the house and car, setting
up his car seat, room and sleep area; we're buying medical supplies,
arranging his community nursing care, and learning more about his
GJ tube; we're buying goodbye gifts and we're getting tutorials
in giving him his meds, working his pump, dispensing his fortified
EBM, doing his dressing changes and generally just getting used
to taking over more of Jonathan's care. On Friday if all goes well
he'll lose his PICC line! That will be huge! Such freedom. He'll
almost be like a normal little baby. Friday and Saturday night we're
doing "care by parent". For two full days and nights you
stay in a somewhat private room in the NICU taking primary responsibility
for your childs care (with all the professionals near at hand).
My friend Stacey called this the "torture chamber" because
you end up getting just a few hours of sleep each night and then
have to take your child home in a state of sleep-deprivation and
high anxiety. We're thinking at this point we'll both stay over
Friday while Eli has an overnight with his beloved Saba and Safta
and then maybe shift off on Sat depending on who is is rougher shape.
It's 4:30 am and I've been woken
by another nightmare about Jonathan. These nightmares have haunted
me (Janis) since the first week of his life. I wonder if they'll
stop when he gets home. I hope so because I really need my sleep.
If not, at least soon I'll be able to ease my mind by going over
to his crib and seeing that he's alright. What I have done in the
past is, depending on the time, either go in early to see him or
call into the unit to get a report from his night nurse. I just
did that and found out he's been asleep since 11:00 pm last night.
What a good boy! Then I had a little chat with the nurse about some
of his issues going home. We've had great nursing care over the
past while. In fact, we've generally been very lucky with Jonathan's
care team. As happy as I will be to get Jonathan out of the NICU
and home where he belongs, I will really miss some people we've
gotten to know in that world. Totally stellar professionals who
also happen to be great human beings. Unique and funny characters.
People I'd be honoured to call friends. After all this is over,
after Jonathan's heart surgery, and his closure surgeries, when
all his parts are in (somewhat) the right place and he's eating
and thriving and, God willing, most of his health problems are in
the past, I think I am going to take him on dates to Sick Kids every
year on his birthday to eat in the cafeteria and just be reminded
how lucky we are he is alive. Okay, it's 5:15 am now and the sun
is rising. Time to start the day.
Jonathan is at full feeds.
His TPN has been turned off! And none too soon as his pallor is
definitely a perplexing shade of yellow. He's doing good. Really
good. We have been given a...(wait for it)...discharge date. On
April 30th, if all goes well, we will be coming to the NICU with
a box of kleenex and a bottle of champagne -- and leaving with our
son!
Thank
you for all the gentle noodging. We finally put some new photos
on the photo page, including some without the NG tube. Jonny was
a bit gassy and irritable this morning, but slept much of the afternoon
and is now at 20cc/hr continuous feeds in his GJ tube. Full feeds
will be 30cc's. Keep sending good vibes to make it there! APRIL 19, 2007 - Disaster Averted Around
here we hate the midnight phone call. Jonathan's doctor called late
last night to say that accidentally, two of his lines were switched.
For two hours, instead of getting .5cc/hr of Heparin (a blood thinner
and clot-buster for his PICC line) and 18cc/hr of TPN; he got 18cc/hr
of Heparin and .5cc/hr of TPN. His night nurse, Kathy, spotted it
and acted quickly, thank god, so it would appear all is okay. The
docs did all sorts of blood tests and preventative measures (poor
Jonny) and have assured us that he is totally fine. Kathy cuddled
him last night and he slept from about midnight to 6:00 this morning.
It just reminded us that we are in post traumatic stress - we both
leapt up when the phone rang, panic rising, expecting the worst,
and have more grey hair today. (Which just means more hair dye). APRIL 18, 2007 - Could it be possible?.... Jonathan
is more comfortable the past few days. In Carol's words, he's "awesome".
His feeds are now up to 12cc and the surgeons have ordered it to
be increased Q6 (up 1cc every 6 hours). The GJ tube seems to be
working, and the pain in the vicinity of his tube is much better.
His omphalocele seems to have reduced again even since last week
which would be great. It's like a small mound (a "whack a mole"
as Judy says). Arnaud said it was "beautiful" and has
encouraged Dr. Fecteau to come look at it on Friday. Things are
going so well that - dare I say it - talk is beginning to circulate
about a "transition" for Jonathan. NP Carol has said that
no decision will be made in any direction until Monday. If all continues
this well, there might be some exciting news in the world of Little
Mr. Jonathan Purdy-Flacks. So keep those prayers (secular and otherwise)
coming. APRIL 15, 2007 - Five Month Birthday Yesterday Jonathan turned
5 months old. These milestones are often hard, because it's been
a long haul and because we remember what Eli was doing and experiencing
at that age. At five months Eli had been on an airplane, had gone
swimming with us in a pool and loved "dancing" to music.
He was also able to sit up on his own (on camera - while I was shooting
the film version of SIBS with Richard G). But yesterday was really
special for Jonathan because they took his NG tube out! We got to
see his full face for the first time in his life without a tube
down his nose, or tape on his cheeks. He didn't have a tube sitting
in his throat for the first time. He looks like a new guy! Our care
team is still there after 5 months - both for Jonathan and for Eli.
Plus, our incredible network of family, friends and friends-of-friends
have kept us fed, laughing, comforted. Some pals even got us massages
- pre-paid so we had to accept!! Man, that was gooooood. Jonathan
is still uncomfortable - whether it's the feeds, the GJ tube site,
or just plain gas is hard to know right now. So we're crossing our
fingers. Please also send all your positive thoughts to our dear
buddy Steph up on floor 6.
Jonathan
is doing much better. He's now on 2cc per hour continous EBM through
his GJ tube. They are keeping it slow because he has had some pain/discomfort
through the day but is doing much better than the last post. In
between his uncomfortable times he plays and smiles his old charming
smile. I'm cautiously optimistic. We are now waiting for the NG
tube to be removed, feeds to be increased and for him to be in no
pain at all. On a different note: Check out the current issue of
Todays Parent for a funny article by Diane about Mother Judging. APRIL 11, 2007 - GJ Tube Done Jonathan's GJ tube was successfully
placed this morning. The fact that he got it today is testament
to the French Connection and the heroic and hunky noodging of Jonathan's
Surgical Fellow, Arnaud, as well as backroom deals by the rest of
the team. The procedure was apparently "complicated" but
they managed to get the tube in place. Unfortunately, he returned
from IGT in a lot of acute pain. I have to admit that we were not
prepared for that. We took him down to IGT in the elevator and there
he was, his little sweet head in his great big crib. He was looking
around so curious and sweet. He loved the elevator and smiled at
all the IGT nurses. We kissed him, and told him we'd be waiting
after the procedure. Then, he comes up in so much pain. Part of
me (Diane) feels we betrayed him. At the moment, his pain is being
managed with drugs (first tylenol, then fentanyl and now morphine).
Janis just called to say he is sleeping now after the morphine.
Apparently tomorrow he should be much much better. APRIL 10, 2007 - GJ Tube Tomorrow Just
found out he's going in tomorrow morning, Wednesday April 11th,
at 8:00 am for the surgical placement of his GJ tube. Wish him luck,
cross your fingers, hope for the best and all goes well. We are
pleased it's moving forward but a bit anxious. If there are no complications
(please, please) this could be a real turning point in Jonathan's
life! APRIL 9, 2007 - A Difficult Place for a Baby I
wish there was a room within the NICU that was exclusively for older,
full term babies. For babies that are noise sensitive, awake longer,
who know night from day and have greater parental and developmental
needs. I sometimes think Jonathan will have damage from spending
his first six months in the chaotic and intense NICU where so much
touch is invasive and/or painful. Though his pain tolerance is quite
high, he's very touch sensitive and cries when he's touched without
warning and when his diaper is changed. Yesterday he was sleeping
in my arms and a hair fell onto his forehead. Since both my hands
were under him I gently blew it off. The feeling of my breath surprised
him and he startled awake. His eyes opened wide with fear and he
began crying inconsolably. He was scared. It broke my heart. APRIL 8, 2007 - Thinking about Discharge Jonathan can be held
upright and moved around and is sleeping better at night. His omphalocele
is much smaller with only his liver and part of his stomach in it.
We are still having difficulty with his feeds - he was sick yesterday
again and was frozen at 5cc - but I have hope for improvement in
that area. Things have been going well enough that I actually allowed
myself to ask nurse Kelly about a possible, potential, maybe timeline
for Jonathan leaving here. I'm getting my hopes up again. So it
was a surprise yesterday when we ran into two little friends - one
after the other - who had been discharged from Sick Kids weeks ago.
In both cases I was really happy to see them but distressed that
they had been readmitted to hospital. Talking to their parents reinforced
that being discharged with a sick child can be stressful. And it
isn't the end of the road. As desperate as I am to get Jonathan
out of the hospital, the thought of taking care of a special needs
child at home is a little daunting. We are dependant on the nurses
and doctors and the instant care of the NICU. It might prove to
be really challenging (and maybe a bit scary) on the outside. But
I know we aren't alone. We're lucky we have dedicated friends and
family to help us. It might just be okay. In my imagination it's
wonderful. I don't know. I guess I'm going to find out. APRIL 5, 2007 - Better Day
Happy to report Jonathan had a better day today. Nothing blowing,
blocking, backing up, barfing, exploding or perfing. So that's a
good day in the NICU. Nurses Serena and Janet were our combo in
room # 11. They both love Jonathan and are very funny and I (Janis)
spent most of the morning laughing. As for Jonathan, after his O
dressing change this morning (which Theresa declared beautiful),
there were no more invasions. We had him swinging in the swing,
riding in the stroller and sleeping in our arms. He got to watch
baby Einstein videos and look out the window at the snow falling
(yes, that's right, snow in April!) and flirt with lots of nurses.
His feeds are back up to 4 cc and so far no gagging or barfing or
other signs of intolerance so that's good (cross your fingers).
His surgeon Dr. Fecteau reviewed the mapping test results and said
she thinks the pylorus is still too high to make a G tube a possibility
so it looks like the GJ tube (gastro-jujunel) is the way we will
be going. There are more risks with a GJ compared to a G so I'm
not thrilled. But whatever helps him feed and helps him get him
out of here faster is the way we will go..... Will know for certain
what they decide next week. On the home front, I picked up Eli from
Nursery School today and we went home and started work on Jonathan's
"Tummy Time Table" (TTT). It was really nice to have time
just the two of us while Diane was with Jonathan. Eli is great help
with the drill and hammer and enjoys "selling" me screwdrivers
at $6 (hand slaps) a pop. The TTT is an idea for helping Jonathan
develop his neck and arm muscles and to help his frog hips to rotate
inward as they should be doing now. We'll see if it's crazy or not. APRIL 4, 2007 - PICC Line, IVs and Mapping Tests Today was a very
hard day for Jonathan, and not any of it had to do with his medical
conditions. His PICC line, the internal IV line (central venous
catheter) that he's had in since November, suddenly stopped working
around 10:00 am this morning. His TPN flows into his body through
the PICC (he's only still on 3 cc's an hour of breastmilk). So,
he had to be worked over to find a vein to get an IV into, so he
could be fed. They had to try three different veins before one stayed.
Then, he needed X-rays to make sure the PICC line, which goes into
his vena cava near his heart, had not migrated to a dangerous position.
It hadn't. After the x-ray he became clammy, nauseaus and seemed
very uncomfortable. Serena helped him by pulling out air and aspirate
through his NG. His NP Jennifer suspected the PICC line might be
blocked so she tried to unblock it using a "clot busting"
agent (TPA). That took almost an hour of him being held down but
in the end didn't work. Then, at around 4:30, we got word that they
were ready for him downstairs in IGT (Image Guided Therapy). He
had to go downstairs to IGT to get the PICC looked into and also
for his "mapping" ultrasound (to find out where his organs
are and if it's feasible to get a G or GJ tube in). To prep for
IGT, his PICC dressing had to be removed. Imagine a baby's whole
arm covered in very sticky bandages and you have to remove all of
them, and the skin underneath is red and raw. Once his arm was undressed,
they put a topical freezing agent on it -- that just happened to
react with his skin causing hives and bumps! The PICC site was exposed
to the air, which is not good, and the nurses were desperately restraining
his arm and trying to figure out what to cover it with. In the process,
the new IV that they had just put into his scalp fell out! So the
tape on his skull had to be removed (ouch) and a new IV put in.
He was beside himself at this point and who wouldn't be. His NP
ordered that he be given tylenol, which in a final intolerable act,
had to be given rectally so it could take effect more quickly. Poor
Jonathan. There was no safe space for him today. His hands, head
and feet were poked for IV's, his arm was red, raw and sore, and
then the medication that should bring relief was given to him that
way. APRIL 2, 2007 - Passover and Feeds Today is the first night of
Passover. It's a holiday about liberation from oppression, celebrating
Spring, remembering times of trial, appreciating life's blessings.
We wish everyone Hag Sameach. I (Diane) wish Jonathan could be here
to celebrate with us. I wish our family could all be together. Although
I'm sure Jonathan would not have a ton of patience for the looonnng
Hebrew-reading part. Anyway, a quick update: I'm sad to report that
it seems Jonathan is not handling the feeds through his NG tube.
We are very disappointed as he seemed to be doing really well over
the weekend. Although his stomach and bowel work and are healed,
the way his anatomy has settled means that the feeds have to travel
against gravity to get out of his stomach. So most of the milk pools
there and then makes him sick and has to be aspirated out. At 4:00
am this morning the nurse aspirated 26cc. So, he's back to 1cc an
hour continuous while they decide what to do. Our NP Carol, who
I've nicknamed Sunny, and our surgeons are talking and looking for
new plans and new ways to move forward. We'll consult with them
tomorrow and report later. MARCH 30, 2007 - Morphine Gone Jonathan is doing really well.
Diane had him sitting straight up today - on his tushy, upright,
looking around, for the first time in his life. He's always been
on an angle, never straight up and down because of pressure from
his omphalocele and then the silo. So today was another first. I
think it freaked him out, and of course, his neck can't yet sustain
that head but it was still amazing. At 5:00 PM he was weaned off
his morphine completely. Finally gone! I hope he doesn't have any
issues tonight but I'm glad he's finally, totally off. He is also
now up to 4 cc an hour of continuous EBM and seems to be doing fine.
Full feeds is somewhere around 23 so we still have a ways to go
but this is a good start. The oral feeds are another story. First
of all, he has never really had much of a chance to learn how to
feed through his mouth so it's going to take time. Secondly, he's
got terrible acid reflux - in part because of his stomach position
and in part because the NG tube keeps the sphincter between the
oesophagus and the stomach always a bit open (I'd so love to be
rid of that tube). In the meantime, Diane and I will do everything
we can - trying the bottle 3x a day, being patient yet persistent
- and keep hoping for progress. In other news Sick Kids did a Radiothon
and a host with Easy Rock 97.3 FM came into the NICU yesterday and
met our Jonny. Later that day we heard that his story was mentioned
on air. I guess Jonathan made an impact (when does he not?). We
were also really touched to read the mention of Jonathan and our
family in Jane Ford's article in Xtra this week. I'm feeling very
grateful today. For friends and family and the incredible staff
at Sick Kids. For everyone who loves Jonathan and is cheering him
on. For every day we have with him that is a good day. MARCH 28, 2007 - Feeding Again A
contrast study was done yesterday by the GI radiologist nicknamed
"the cowboy". The contrast made it all the way through
Jonathan's GI tract! There are no strictures or leaks or obstructions
around the site of the perforation. They were able to determine
what is inside his abdomen and what is still out. The only thing
that they think is outside is his liver and the uppermost part of
his stomach. This is amazing because it means most of his stomach,
his spleen and all of his bowel has made it's way in during the
very difficult silo time. An unforeseen fringe benefit. Remarkable.
The difficult news is that food still has to fight against gravity
to make it's way out of his stomach, but it can be done. He was
started on feeds last night - the first time in about nine weeks
since he's had milk in his stomach - and is now up to 2cc's an hour.
He has a long way to go, but so far so good. Today he had his first
stroller ride since January. He fell into a deep sleep. He is so
much more himself these days that it makes us realize how not himself
he was. He was literally in suspended animation. Welcome back, you
handsome marvel, you. MARCH 26, 2007 - VAC-less Jonathan's
surgeon and wound specialist came by this morning before we got
there and decided that the omphalocele looked so good, so much smaller,
with so much new granulation skin growth that there is no need for
the VAC dressing! We're back to the dressing he had before the perforation.
Today he absolutely loved being held upright, cuddled, we even put
him in his bouncy chair. He was talking to us, cooing and chatting!
Everyone was marvelling! Yes, his neck muscles are weak so his big
gorgeous Charlie-Brown head is floppy, but Janis and I will figure
out how to help him with that. It's hard to believe he really is
free of that silo. He has to have a contrast test to see how/when
they can feed him. That is big and very crucial, so we are crossing
all our appendages. On another NICU rollercoaster upswing note:
Janis and I nominated our core nurse Kelly for the prestigious Sick
Kids Humanitarian Award back in January. Today we found out that
she won!! She was all teary and I actually did the Running Man (hip-hop
dance) in our NICU room. The Awards ceremony is May 16th. We decided
that we all have to get matching outfits, and we're getting Kelly
a tiara and a sash that says, "I won the humanitarian award,
so screw you." Here is our goal: to bring Jonathan to the ceremony
at Sick Kids from home, not from his room in the NICU. MARCH 25, 2007 - The silo came off! As
Eli would say, "Yaaaaaahhhooooo". But naturally, Jonathan
does things in the most dramatic, unpredictable way. We were doing
the dressing change. I (Diane) was unwrapping the old gauze around
the silo, and suddenly saw that the bottom end of the silo was no
longer attached! Thank goodness nurse Kelly was on. Under her breath
(which would be loud for most people) she said, "We're in trouble."
(None of us knew what we'd see once that silo was actually off).
Kelly paged the on-call surgeons and NP Kim. As you may remember,
Jonathan's surgeon doesn't return from vacation until tomorrow,
and they had booked an OR slot for her to take the silo off either
tomorrow or Tuesday in a controlled, sterile environment. Well,
as usual, our Jonny had other plans! Kelly undressed the rest of
the silo. All the sutures except for a few at the top had completely
let go. The few sutures that were left seemed to be deeply embedded
in his skin. (This is why an OR had been booked and an anesthetist
consulted.) But, there we were: silo hanging precariously, and his
abdominal contents exposed to the air for the first time in 71/2
weeks. I began to breathe again when we all realized that the omphalocele
contents were gelled together well and would hold. The team moved
into action mode. With Janis and I holding Jonathan's arms, with
Kelly and the other nurses (Jill and Gill) assisting, and Kim holding
his legs and calling for more sedation, the two surgeons, Sharifa
and Mohammed, slowly, gently cut the remaining sutures away. Although
there was much tugging and blood, Jonathan tolerated it astoundingly!
He cried and writhed a bit, but really stayed remarkably still.
He was so strong and brave. Janis and I didn't even faint or barf,
although Janis said that she couldn't feel her legs from her knees
down. When it was off, we all marvelled that the contents were indeed
covered with a skin-like shell, and even some new granulation tissue!
AND it is so much smaller than his omphalocele was before. The surgeons
tried, but were unable to put the VAC dressing on successfully.
So we just dressed it as we had before the perforation. Tomorrow,
his surgeon will decide if they will put on the VAC dressing or
back to his old type of dressing. MARCH 22, 2007 - Disenchantment Jonathan
was kind of miserable today. He was crying and scratching his eyes
and seemed frustrated. I don't know what it is beyond, oh, I don't
know, being stuck on your back for 7 weeks and going through withdrawal
from morphine. I told him that he can never, ever do any drugs because
I am not going through this again. Okay, maybe he can smoke pot.
You don't get withdrawal from pot, just fat. MARCH 20, 2007 - Goodbye Joshua Poor baby Joshua passed away this
morning. It was a shock to all. We knew he'd been sick for many
days (he took a downturn on March 11) but expected he would recover
as he'd been quite strong when he arrived. This morning at around
6:00 am he passed away from massive heart failure. When we arrived
his family and extended family were in the parent care room. His
mom requested for us to come in. We hugged her and held Joshua.
It was so hard to believe he wasn't just sleeping. We gave our tears
and words and what little comfort we could to his parents and wonderful
older brother Nicolas. I was truly at a loss. What can you say at
such a time? There we were sitting in a room with all his extended
family and we didn't know any of them - but we did know Joshua and
he was a beautiful little fighter. We had been side by side with
Joshua and his family day after day for two months. That is the
strange thing about the NICU or any intense and restricted environment.
After the crisis with Jonathan passed and I realized how close we'd
come to losing him, it occurred to me that the people who knew Jonathan
even more than most of our family or friends were his core staff
at the NICU and some of our parent friends there. It's a kind of
intimacy and compassion between strangers. We're going to miss Joshua
and we're so sorry for his whole family. MARCH 17, 2007 - Daydreaming These days Jonathan is in a bit of
a holding pattern. Basically he's doing well. Despite the fact that
he is still stuck on his back, is being kept awake at night with
noise, and hasn't had any food in his stomach for about 8 weeks
(!). I (Janis) wonder how can it possibly be good for a new baby's
GI system to not be used. But our surgeon insists we wait a little
longer before feeding, until the contrast test shows that he has
good motility and digestion. We're also waiting longer (10 more
days) to take the silo off. We were told six weeks but that date
has passed and we are now being told it will be taken off when our
surgeon returns from holiday March 27th. Yes, that's right, her
holiday. Of course, I am impatient. I am often in a state of impatience
here. I have very little inner peace these days. NICU "turtle
steps" are tough. Diane here - I could not get him to sleep
until midnight tonight. He was beside himself, couldn't cope, overtired,
but it's so loud and bright and insane in there. You or I would
go postal. MARCH 14, 2007 - Four Month Birthday Today Jonathan is 4 months
old. I can't believe it. It's 5:00 am here and after a restless
night I (Janis) am heading back into the hospital. Yesterday was
a kind of crazy day. So much going on, lots of visitors, lots of
activity in the room, etc. At one point we got a message there was
a clown waiting at the front desk for us. (Diane here. They literally
said, "Should we send in the clown?" No thanks, JP-F's
asleep.) It was surreal. We had a visit from a family of another
O baby who is now 17 months and doing really well which was nice.
We also said a quick goodbye to Sammy who has gone home with his
parents (!) and I'm sure is doing well there already. In the afternoon
the surgeons came by and ordered another contrast study for Jonathan
for today. The last study made him really sick for 14 hours so I
don't like it - but I know they need this to understand his anatomy
and capacity for feeding. All last night I had dreams of him crying
and calling for me. I thought it was my anxiety connected to the
study but I just called in and it turns out he had been crying.
There's been some new admissions who are critically ill and apparently
the room was in choas last night and poor Jonathan was awake and
crying for two hours. Brenda is a very good nurse but she couldn't
get to him because she was busy with the other babies. So he was
alone and upset. I would've gone in if I'd known but she said they
weren't letting any parents in. That is the environment of an ICU.
And that is why it is the worst possible place for our four-month-old
baby who is sensitive to noise and stress and alert to his environment.
He is asleep now but I am going in to ensure that when he wakes
up I will be there to comfort and play with him. He needs to get
out of the NICU. He is too old. And I can't get him out. March 14, 9:30PM - Contrast Study Results Diane here. They did
the study and the good news is that the lower three-quarters of
his stomach has dropped into his abdomen. The upper portion unfortunately
remains in the silo, so food still has to fight gravity to make
it to his intestines. But this is an improvement and something no
one would have predicted. When he is more mobile, there is further
study they can do and other options, so we wait for more news in
the next few weeks. Well, that is what we pray for, if we were to
pray. Jonathan slept most of the day - recovering from last night.
Speaking of sleep, the other day, we strolled the wagon out of NICU
and Eli got to be his happy energetic self, and also play with Jonathan.
At one point Jonathan fell asleep and Eli started stomping his feet
near Jonathan's head. Eli explained, "I want to wake him up
because I want to make him smile again." Brothers bonding,
in the most trying of circumstances. MARCH 11, 2007 - Out in the Hall We've been out in Jonathan's
PCD ("The Red Rocket") every day since Thursday and it's
been great. This morning we brought Eli to the hospital and the
four of us were able to sit and visit together outside the unit
in a way that is not possible inside. A rare bit of privacy and
family time. Jonathan had a tough morning because his IV blew again
and they had trouble finding a viable new vein (don't even ask).
So we got him away from his bed and cheered him up with the rolling
motion and the new sights. Eli was able to be his four-year-old
self out in the hall - i.e. he would visit a bit and then run around
and then return again talking all the while in his loud voice. In
the unit we're often hushing him or telling him not to touch this
or that. It's not much fun so he usually doesn't stay that long.
He was also able to reach down into the wagon to touch Jonathan's
feet and head and talk to him about his magic camera that makes
sharks friendly. Diane enjoyed a coffee while we sat there (no drinks
or food in the NICU). I was able to use my cell phone to call up
to Denise and Stephanie to get them to wave to us from their window
(which was fun). Then sweet Nicholas, the older brother of one of
our neighbour babies, came by to see if Eli wanted to watch a Scooby
Doo DVD on his portable player. So the two of them sat side by side
on a bench watching their video while Diane and I played with Jonathan
in his wagon. It was a really lovely time, being all together, comfortable
in a quiet space. We don't have that in our life right now and it
was good. Then Jonathan's monitor started beeping and I had to go
pump and so we headed back into room 11. MARCH 8, 2007 - Introducing the JP-F PCD The Jonathan Purdy-Flacks
Personal Carrying Device (JP-F PCD) has arrived! (Please see the
new pics). In the first few days and weeks that Jonathan was in
the silo, we were agonizing over many things related to his comfort
and development: how to get him back into his familiar crib (use
an orthotic traction bed); how to find a way for us to hold him
(construct an ingenious brace); and finally how to stroll him out
of that stifling bedspace in NICU so he could see something more
than the ceiling tiles over his crib. About four weeks ago, Kim,
our NP, had this great idea to make a carrying device that would
incorporate the silo. She did some sketches on scrap paper. Janis
got inspired. She took the idea to James, who is an architect, and
he drafted a design. Then Janis took James' drawings to Gerry, our
contractor. Gerry came through this morning (gratis I may add) and
the JP-F PCD was born. Janis spent hours scouring Canadian Tires
and Toys R US to find the perfect wagon, with smooth rubber wheels,
and the right size to fit the device into. Her tenacity in the face
of sugical lack of enthusiasm for the idea, various delays, and
beaurocatic hemming and hawing was nothing short of heroic. MARCH 6, 2007 - CMV Update and VAC Dressing Course So far there are no symptoms from the CMV infection. We're still waiting on results from the eye test they did this morning but I think if they'd found anything we'd know by now. The LFTs are down again so it seems that the CMV (not the TPN) caused the LFTs to rise. It's a big relief on a few points: asymptomatic CMV (phew), lower LFTs (which means the liver is doing better) and no real signs of liver deterioration (which means he seems to be tolerating the long use of TPN). In other news we took a VAC course. VAC (another acronym!) stands for Vacuum Assisted Closure. It's what they want to do with his wound once the silo comes off. So, we attended a course taught by Theresa Allen in the NICU yesterday and today for all interested staff (and us). It was fascinating. A little machine that vacuum seals the wound and provides continuous suction of drainage. VAC dressings are supposed to help wounds heal faster so the hope is that once his silo comes off (perhaps in two more weeks) we can switch to the VAC dressing and we won't have to wait another three months for skin to grow. This kind of dressing only has to be changed twice a week and the best part is that it's very secure so he can be mobile. Upright, turning, being held, touring the hallways again - my god, it will be so great! One last piece of good news...we weighed him today for the first time in 2.5 weeks and he's gained almost a pound. At the age of 16 weeks he now weighs 4.4 kg or 9.7 lbs. He's still small for his age, I know (and he may be for years) but I'm very pleased he's moving in the right direction. You keep it up, Jonny!
Every day longer in the silo is
a day closer to Jonathan having more mobility and to figuring out
how to feed him. It sometimes feels excruciating and exhausting.
He is so sweet and gentle and happy and soulful it can break your
heart.
It seems like the NPs around NICU like nothing better than a challenge. The case in point? After almost four difficult weeks we were told we can't hold him or move him for at least another two weeks (see post below). We had already been asking the OT to create some sort of brace/support for the silo but yesterday after the surgery meeting NP Judy put the squeeze on Suzanne who made something this morning (a modified a neck brace).Then she began formulating a convincing argument - that when Jonathan is frustrated and upset he squirms, kicks and writhes and that in fact might be more risky to the silo base than lying quietly supported in our arms. Of course, the transition from bed to arms is the tricky part so we thought about it and figured a way that three people, working in tandem, could make it as smooth as possible. At 2:00 PM the case was presented to Dr. Fecteau. To her credit she was open: she viewed the brace, allowed us to move him and then observed him being placed in my arms and settling there with the brace and cushions. I held my breath while she considered, trying not to let my hope and emotions show too much. Finally, in her very reserved, surgical way she said (imagine a Quebecois accent), "Yes, Okay, it looks good. Make sure you are very careful. Only the moms can hold him and only once a day before dressing change. If it goes alright for three days we can evaluate more". And then she turned and walked away, leaving me to hold little Jonathan in my arms for over half an hour! He was calm and looking around and at one point looked up at me with an expression on his face that could only be interpreted as, "What has taken you so long?". Then he fell asleep. It was beautiful. Check out the photos on the photos page.
Well, it was
not the news we hoped for. But the good news is that Jonathan's
vitals are strong, his spirits are astonishing, he is the cutest
baby in the NICU. His silo is still on after almost 4 weeks. The
fibrinous shell is growing around his organs and they are gelling
together (less free floating). This will bode well for when the
silo comes off. The bad news is that it appears his stomach is literally
standing on its head and there is no way to initiate feeds for the
next while, and even then it may be an NJ tube (nasal/jejunum tube)
in one nostril and a NG tube (to empty his stomach and make sure
he doesn't reflux) in the other nostril because they can't get a
G tube in him yet. I could scream at the thought. They're hoping for about two
more weeks in the silo - two more weeks we can't pick him up. That
is the best case scenario though, so we must find a way to make
time pass really fast, like maybe Superman could circle the earth
really quickly or something.
Jonathan's had three big stools since the contrast test Friday so we hope that is the dye moving through his system. That would mean we're looking at dismotility (slow motility) rather than a blockage or adhesion or a stomach that's not working. And that would be good news. But we don't know and can't get any answers until Monday when his surgeon is in. We are very frustrated these days with the "system". The only person that seems to be able to guide his care with feeds or the silo is his surgeon. No one from neonatology, not even anyone else from the surgical team can step up and make a decision or plan without her approval - which wouldn't be a problem if she was around but we are finding it difficult to get at her. She was away the week before last and then last week was quite unavailable. We feel a bit like his care is being worked around her busy schedule which is a bad feeling. No one wants their child in NICU a day longer than necessary. There are a lot of good, caring, excellent people here, but it really is a difficult place you want out of as soon as possible. Jonathan's care plan is excruciatingly slow as it is (we just found out that he has been in the NICU longer than any other baby on the unit). I can't stand the thought of it being lengthened even one extra day because of staff shedules. A day in the NICU is like a week. A week is like a month. Jonathan belongs home with us.
Poor Jonny's not having it easy these days. Friday morning (yesterday) at 10:15 NP Carol administered the contrast fluid. Then they took x-rays about every two hours throughout the day to track it as it moved through his system. Unfortunately, it doesn't seem to be moving past his stomach. I could tell he seemed nauseaus yesterday but I thought, of course, he hasn't had anything in his stomach for almost 4 weeks and now the first thing is this dye - it would make anyone sick. Diane and I offered what comfort we could. He had a long day of tests and xrays. We were concerned last night that at the 12 hour mark things were still sitting there. He seemed to sleep okay and we hoped for movement in the night but this morning Kelly said he looked very uncomfortable so she unclamped the NG and a lot of it came back out. What does this mean? Could be the morphine or maybe the lack of food has just slowed his motility. Could mean the gravity of the silo is working against us. Could mean things aren't healed as well as we'd hoped. Could mean there's something going on with his stomach. We'll have to wait and see. In the mean time, despite all his challenges, he continues to charm everyone. Nurses comes to his bedside just to coo at him and get one of his famous smiles (with tongue sticking out and wriggling head). FEBRUARY 22, 2007 - The Number Three Three weeks since the perforation. Jonathan is over three months old. And now, they are hoping the silo can last three more weeks. So much has happened in the last three weeks that it feels like a lifetime. We can see now, as the drugs are being weaned, how the physical immobility is effecting Jonathan - his arms and legs need a lot of help to do things that healthy three-months-olds can do. And yet, Jonathan's smiles are so beautiful. His gaze so focused, searching, clear. The inability to hold him, and feeling how much he needs and wants that touch and comfort, is making me (Diane) feel insane. So much so, that sometimes, honestly, I want out of there. (Exploding toilets and monitors don't help - neither does having to watch him getting poked for new IV's.) But we must keep strong and keep moving forward with purpose and energy, for him. Speaking of, Janis has been chasing the GI contrast study down like a terrier. Apparently, tomorrow Jonathan may have it done. It's not going to be pleasant but it's important as it can tell us a lot about how his stomach/bowel are doing post surgery (please cross your fingers). Jonathan's IV in his hand "blew" (nice lingo, again) and so Kelly tried to get one in his other hand. That didn't work, so he has one on the side of his head now. This is not bad, because we can still stroke his head and forehead, and now his left arm is free to get some physical stimulation going to his arm muscles. Eli is an amazing soul. Today he told me that he doesn't "do" Shaggy's voice (from Scooby Doo) but that the voice is there and it comes to him. "I absolutely understand what you mean, Eli," I said to him. And I thought, "I've kind of built a career on that...but you could still be a scientist who only acts occasionally, couldn't you?" FEBRUARY 21, 2007 - 100 days in NICU That's 14 weeks. Jonathan continues to be an angel under unendurable conditions. He is stuck on his back under the silo and has been for almost 3 weeks. He can't be held or moved or even change position. He is being weaned off the heavy medications (fentanyl, medazalam, morphine) and having some withdrawal symptoms. He has pain from the bowel surgery and the silo base (where it is sutured to his abdominal wall). He has his dressing changed everyday and I'm sure he is hungry and bored and frustrated but through it all he remains so sweet, patient and understanding. And forgiving. They have taken the IV out of his head and placed it instead in his hand. The good part of that is we can now stroke his head. The bad part is they're restraining his left arm to keep the IV secure (so that they don't have to poke him again to find another viable vein). I am afraid he will lose what little strength and mobility he has in his arm as a result so I remove the restraint whenever I am there (much to the consternation of the nurses, I'm sure, but I just don't care). We are waiting for the surgeon to get back to us about the "contrast" or "follow through" test. This test will tell us if his bowel is healed and if his parts are all working. If all is well - and we think so as he's had some stools - we can start feeds again. But it will involve moving him and some doctors are nervous about the silo being compromised during the procedure. Nobody wants that (in fact, Kelly is trying to get this silo to last 6 weeks instead of the usual 3) but I do want to get him off the TPN and back on breastmilk. Diane here - 100 days and we are in a more precarious position than ever but Jonathan is smiling. And so is Eli. Bless them. They know something we don't. FEBRUARY 18, 2007 - Message from another Mom I got some inspiration from a wonderful mom the other day. We were connected through Nurse Kelly. Her son was also born with an O and is now about a year and a half old. I'd like to quote some of her message here: "What I've come to realize is that those blessed with ill babies have to be strong and really are strong. It's a gift we get when they come to us. I remember people telling me how strong I am, and you know what, looking in my son's eyes gave me that strength. When I saw your pictures of Jonathan the same look and feelings came to me. Your baby is so beautiful and when you see him, you know that you need to fight. You have to and so he will too. Soon the horror show will be over and you won't believe that you went through it. I hope J. is restful and that skin grows quickly. You see, I pray for the simple things now: skin growth and the ability to swallow. Before him I prayed for a new BMW. The simple things, one step at a time". It's so true, just looking into Jonathan's eyes gives us the strength to keep fighting. I wish he knew how many people are rooting for him. If he knew how many wonderful people out in the world are sending him love and waiting to meet him, I think it would give him strength. Maybe he already knows because he sure is unbelievably strong. Just take a look at the new pictures added today and you'll see his spirit....(as per usual you may have to refresh each page to get the latest). FEBRUARY 15, 2007 - From the beautiful to the RIDICULOUS Today we got to move Jonathan from his small cramped baby-warmer bed back to a crib! We've been hoping for this for a while. But today Kim made it her mission. They got us one with an overhead traction bar to tie his silo-bag to. The process of moving him was quite a production. His two NP's, Carol and Kim, came to help and witness this milestone. Carol slipped the string that tied his silo to the bedwarmer off, and held it tight. Kim moved his two IV poles of meds, and I got to HOLD him as his new bed was moved in. As soon as I (Diane) held him, he calmed and started looking around. I couldn't help it. The feeling of holding him in my arms after these two terrible weeks made tears stream down my face. I missed him so much. Honestly, I never wanted to put him down. Once we put him in his big crib, he really seemed happier. He moved his head around freely, looking at his toys. His mobile was still taped to an IV pole, and as soon as I turned it on, he was smiling, cooing, enjoying his pad and his friends! Here's the ridiculous part: About half an hour later, I was standing by his mobile, watching him, when I smelled rubber burning. I called the nurse, "Something's burning. Something's wrong." As soon as she came over, loud POP POP CRACKLE CRACK sounds started coming from his heart monitor (beside the bed) and red lights began flashing on and off. I thought, how the hell would I safely pick Jonathan up and run with him should the monitor burst into flames?? Untie his silo? Slip it off the pole? But wait, he's still hooked to his IV and to the monitors! So I unplugged his IV poles, pushed them and then his crib into the centre of the room away from the monitor. Hannah paged the support team. They came, assessed, and started moving. They took down all the pictures we'd tacked to the walls, his meds etc. Three-months-worth of NICU life was plopped onto the crib. They rolled him into room 2 on the south side of the unit. He was squeezed into the Air Canada special - a spot between two other babies in a crowded 6-baby room. Fortunately, he only had to stay there a few hours while the engineering/tech guys removed the mointor and checked everything else. By the beginning of the night shift, he was back to his old spot in room 11. Now, just to say, Jonathan slept through the whole thing. A nurse, Allison, tried to placate me a bit in room 2, by helping to tape all his pictures to his crib. She seemed to need them to be aligned just so. I said, "Are you a Virgo?" Sure enough. Yup. So she taped his world into a temporary perfect balance for us. That's us right now: a temporary perfect balance. p.s. Janis here - the capper to this story is that Diane went to the NICU washroom after all this, all red-faced and full of adrenaline and when she flushed the toilet, it overflowed. FEBRUARY 14, 2007 - Valentines Day Today is Valentines Day, Eli's "favourite holiday". He exchanged many Valentines at school and then came to the hospital this afternoon to help celebrate his friend Stephanie's 5th birthday which is also on Valentines Day. She had a party in the 5th Floor rec room that was lovely. It is lousy that she had to spend her birthday in the hospital but the nurses and staff did a very good job of making it special for her (face painting, games, cartoonist) and she was as radiant and sweet as always. Stephanie and Eli have a nice connection. He sang and "did the actions" for a Valentine's song for her. Eli and Diane also went to Marnie's Lounge, a place on the 4th floor for kids to hang out. The social worker, Jane, engaged Eli in "medical play" with a baby doll that he called Jonathan. Eli was astounding. He taped an NG tube precisely to it's nose, fixed a cotton ball to its belly (like an 'O'), and put pieces of tape all over to "keep away germs". Wow. Jonathan remains in a kind of healing mode from the bowel surgery. He is on TPN and many, many meds for pain, sedation and anxiety. He sleeps a lot but can be quite engaging when he is awake. Despite all the meds, he seems at times to be in pain or frustrated but we're not exactly sure what is bothering him or how. I really wish he could speak to us and explain. Talk of starting feeds (breastmilk) has begun but nothing will move forward until his surgeon is back next week and they do a contrast test to make sure the performation site is fully healed. A child life specialist named Karyn Positano (coincidentally the daughter of my old boss from YouthLink) brought us down a lot of good development toys yesterday including a mirror that he really likes. We've tape recorded us, Eli, Saba and Safta telling or reading stories and we play them for him and, of course, he has his music. If anyone out there has the new Charlotte's Web soundtrack - the one with the Sarah MacLaughlan single about everyday miracles - we'd really love to play it for him. The other thing we're working on is making him a personal carrying device. James has created some amazing drafts of a kind of small portable bed with a built-in arch that could be used to support the silo. I'm talking with someone who might be able to construct it while NPs Kim and Carol have been running it past medical engineering. Our hope is it could used to help Jonathan get off that warming bed, travel around a bit and have different things to look at during this period of time that he is stuck on his back with the silo suspension. FEBRUARY 11, 2007 - Missin' the Train Yesterday I overheard nurse Kelly having a one-way conversation with Jonathan while she gave him his meds. "Hey there, old man. How'si in ye hawse? You no so good, no, neh? Nearly got on the train last week, didn't cha? You had your ticket bought, eh? Had yer ticket bought and nearly going for a ride on St. Peter's train, say bye, bye, eh?" As inappropriate as that sounds, it actually made me smile because she wouldn't talk to him like that if he was still in danger. But he's on the mend now and we're quite relieved. We still don't know how we're going to work around this enormous silo, and how we can move forward with him stuck on his back in one position without being able to be moved, picked up or held - it just breaks my heart - but I am hopeful that he will recover and heal quickly. He's still on tons of pain meds and spends most days sleeping and/or stoned but his fentanyl is coming down slowly, he's just got the oxygen prongs in his nose and his edema is much better. He does wake up and, though he often writhes, he sometimes just stares at us/his toys and smiles. The night nurse reported he was actually giggling (I suspect it's the medication). But at least he seems somewhat comfortable. And he looks like Jonathan again. He has his physicality back (is that even a word?) and now we're just waiting for his meds to be reduced and his personality to return. Last night I had a real mother dream. I woke up and Jonathan was at the bottom of the bed on his stomach. I said, "Hey there, what are you doing here!?". He smiled and began crawling up the bed towards me. I said, "C'mon up then" and reached for him and pulled him towards me and up onto my chest where he was suddenly a newborn again, curled in and sleeping naked and content. Sigh.... FEBRUARY 9, 2007 - EXTUBATED Today, eight days after the awful perforation, Jonathan is off the breathing tube! He has nasal prongs for extra O2, but no more ventilator. It took all day, and we were (impatiently) waiting and bothering everyone about it. Once that tube was out, he seemed to be literally dancing on his back (all sedated and everything). He was kicking his swollen legs and pumping his IV-ed arms. He was making sounds with his raspy (sore) voice. And, he looks like much more like himself, without his nose all closed shut and squished by the tape around the vent tube. We are so relieved. He HATED that tube. It made him miserable. Having it out has lifted his spirits, and thus, ours. He has an IV in his head again. Which is not pleasant, but was necessary, as the one in his foot had "blown". Lovely phrases in NICU. And now, we must be patient and incredible vigilant for the stability of his silo. We are just crossing everything. This morning, Eli said that he thought maybe our world is actually a dream, that somebody is dreaming. "And Mama, let me tell you something, the dream never ends." In light of all this, that seemed incredibly profound. Mind you, the next thing out of his mouth was a knock-knock joke about poo.... FEBRUARY 8, 2007 - A week has passed Today they started the process of slowly weaning Jonathan off the breathing tube. They have to slowly lower his most heavy-duty sedation (Fentynol) so that he can breathe on his own. They have to watch closely to make sure he doesn't get agitated, so that he doesn't move too much and damage the silo. He seems more peaceful today. We hope that it goes well overnight. Janis said she suddenly realized today was Thursday and she couldn't believe a week had passed. She said she wants to get as far away from last Thursday as possible. I agree. The farther away we get from that day the better. Just one other note. Eli is amazing. He is adjusting to all this with grace and kindness. Every day he tells us to give Jonathan a kiss for him. And we give him kisses back. He's the light and joy of our lives. FEBRUARY 6, 2007 - All-Team Meeting Did the team meeting this afternoon and it went well. Guess what? They have never had a case like this before. It's their first ever case of a three-month old O baby having a spontaneous bowel performation. Never even had an O baby perforate before. They seem almost as stunned by this as we are. They are still exploring (e.g. waiting for a pathology report) but they don't know why it happened and said they don't think they ever will. All we know is that, although it's good that Jonathan survived the perforation, and did well in surgery, and seems to be recovering well post-op, we are suddenly in a whole new territory many steps back from where we were (if not right back at the beginning). There is nothing to say but that it's very sad Meeting Review: The team basically said that we will probably be here for, and I can barely write this, 6 months more. They can't reduce his organs surgically or otherwise. It's going to be about "turtle steps" as Annie Fecteau says. The best case scenario is that the silo holds for the next 3 weeks or so. Fibrous tissue should grow under the silo. After that, the silo can be removed, or it can be allowed to deteriorate. If the fibrous "shell" hasn't grown around the organs before the silo starts to give way, they'll have to surgically put another one on. After this "shell" grows, it will be very delicate and we'll have to start at the beginning again with "paint & wait". They said that after there is some skin (like Jonathan had recently grown) they can consider things like skin flaps to speed the process up. In the short term, they are waiting for his swelling to go down in order to assess how his organs really look in there. And feeds can't be started until the swelling has gone down enough to do a "contrast study" to make sure there are no leaks where the perforation was repaired. In the meantime, he is still sedated, and the breathing tube will remain in until he is more conscious and indicating that he can manage breathing on his own. We will hopefully hear from cardiology soon. It seems highly unlikely that his heart surgery can happen at 6 months, as planned. So there is some semblance of a plan in all the uncertainty. Jonathan looks better today. He is opening his eyes and more conscious. I'm happy to be able to talk to him. Although him becoming aware of this new situation is disconcerting. This morning he was opening his eyes a bit and he kept focusing on the huge new silo coming out of his abdomen and would stare at it as if to say, "what the hell is that?" The more he tried to focus on it, the more his eyes crossed. Eventually his nurse couldn't stand it anymore and covered his eyes with a small strip of cloth to make him stop. FEBRUARY 5, 2007 - Recovery Today is Grandma Purdy's 78th birthday. She arrived in TO around 3:30 PM yesterday from Victoria and took a bus straight from the airport to the hospital to see Jonathan (which unfortunately was a bit sad given how he was when she last saw him). After a visit and dinner she caught a train home to Oakville and took a cab from the train station home. She called me full of energy to say she'd arrived safely. I really hope Jonathan has inherited some of those good, strong Hill genes. As for Jonathan, he has been weaned off the pavilon and his right lung has partially reinflated. That is very good news. He is still really swollen, even his head is very puffy. He had a head ultrasound and all looks good in his brain, so that's also good news. We tried to turn his head because of the pooling on one side, but he was really uncomfortable looking right (because of the lung, maybe?), and showed signs of pain, crying but no sound coming out (the breathing tube is through the vocal chords). Heartbreaking. But then, he settled quickly. God bless morphine. We have a big team meeting tomorrow with the surgeons and doctors and NP's. Looking forward to having some of our many questions answered and getting some sense of the new directions in Jonathans care. FEBRUARY 4, 2007 - Post-Op Stabilizing Jonathan remains sedated, intubated, ventilated, on muscles relaxants (pavilon), an anti-anxiety drug (medazepam) and two pain medications (morphine and fentanyl). He sort of looks like he's in a coma. He's back on the small warming bed, exposed so they can see his chest, lying open-limbed, puffy and swollen. He is resting as comfortably as he can. Visually he is a bit shocking. His eyes are swollen shut and tearing. He has intubation tubes in his nose along with an NG tube still draining. A black CO2 probe leaves red circles all over his skin. He has an IV in every limb, the big, wet, gauzy silo sac coming out of his abdomen, yellow plastic ear covers (he is sound sensitive) and a catheter draining into a measuring bag. His mouth sucks involuntarily and is often frothy (we wipe it regularly and put vaseline on his dry lips). Last night we finally got to sleep around midnight and at 3:30 am were woken by a phone call from the hospital. The night doctor was concerned he had fluid in his lungs and had done a fluid tap. Further x-rays and an ultrasound this morning indicated that his right lung had collapsed. This is a risk that comes from being on muscle relaxants and a ventilator. They have told us that a gradual weaning of the muscle relaxants, tilting of his body left, and some mechanical pumping will re-inflate his lung. Let's hope so. The story of this brave strong little boy is unbelievable. I would like nothing more than to pick him up, hold him close to my heart and comfort him with hugs and kisses. Instead I lean against the side of his bed, gently touch the top of his head with my finger tips and whisper into the air, "You're going to get through this my little man. You're going to get through this and be alright." He must. FEBRUARY 2, 2007 - EMERGENCY! Near Death Experience - Yesterday, Thursday Feb 1st, I was holding Jonathan. He still had his oxygen and his low sats but he was calm and smiling at me a lot. He suddenly started to scream and his sats crashed into the 50's, his heart rate went into the 200's. His core nurse, Kelly, kept trying to up the oxygen levels, but nothing worked. She immediately mobilized everyone: Respiratory Therapists, surgery, x-ray, nurses, NP, doctors. They had to intubate Jonathan so he could breathe. It took a number of tries during which his heart rate dropped to around 50, and he had to be "bagged". Kim, our NP finally got the tube in. I have no doubt that Kelly's quick decisions and actions; along with those of Kim and the whole team saved Jonathan's life. By then Janis had arrived. Jonathan was on a ventilator but in great distress and very unstable. We got the omphalocele x-rayed. Jonathan's surgeon, Dr. Annie Fecteau, came back in moments to say that the x-ray showed that Jonathan's bowel had perforated and he would have to go into surgery immediately. We were told possible outcomes: his bowel may be too damaged for him to survive, or he may end up with a colostomy, or with only a small piece of bowel removed. If he made it through the surgery, his omphalocele would be opened and replaced with a plastic silo. Janis and I waited. Three and a half hours later, his surgeon came out to tell us he made it through. The bowel did not have to be removed, just repaired. Thank God. His bowel also looked healthy so Jonathan did not ever have NEC. What happened was "a spontaneous perforation" which is, ironically the dangerous outcome that NEC can cause. We cannot understand this. All we know is we nearly lost him yesterday. And now we don't know what to think about the future. We are both still in a bit of a state of shock and are just grateful he made it. Janis describes this feeling like when you watch a loved-one in a car accident where there were fatalities. When you find out they survived, you are so relieved. But then you find out they are in critical condition and the future is uncertain. What now? How will we go forward? Right now the objective is for him to recover. They are managing his pain delicately. He's still sedated, and he is also on a major muscle relaxant that keeps him as still as possible. The ventilator breathes for him so he is not in distress. He can't be handled for the next while. We spent all night at the hospital last night and all day today. We pat his hand and let him know we're here and he's going to get through this. The part of all this that has been referred to as "a disaster" in all this is that they had to take away the omphalocle covering (the skin he spent three months growing). His organs are now being held together outside of his body in a synthetic sac called a silo. Unfortunately the organs are the liver, spleen, part of stomach and some bowel. They are too big to be put back in his body. There is no room. A silo usually last 2-3 weeks, but Jonathan's organs will not go in in two to three weeks. Skin must grow again and cover them. We don't know how long that will take, and what will need to be done to maintain Jonathan's stability in that time. Jonathan is three months old and has been an alert, smart, smily little person, who, although he was stuck in NICU, loved being held, cuddled, soothed. It seems unthinkable that this has happened. The team is regrouping and after he's more stable, will talk with us about a plan. All sorts of nurse and doctors and NP's who have gotten to know Jonathan in the last three months have come by to offer condolences, cry with us and say how terribly sad this is. Dr. Jonathan Hellman came by the surgical waiting room to offer comfort during surgery. Kim and Kelly have revealed how truly attached they are to Jonathan and how unbelievably dedicated they are to his care. Judy, our NP today described it as a "massive setback". She explained to the Doctor on call, "He's never even been on a breathing tube in his life." Please send your love and thoughts to Jonathan. JANUARY 31, 2007 - Long Haul Yesterday we felt like we were in free fall. The Surgeon was afraid that Jonathan's abdominal x-rays might be indicating that his NEC had caused his bowel to perforate. Since his bowel is inside his omphalocele, this would be very grave for Jonathan. So they did another x-ray on his omphalocele without his dressing, to get a clearer look. Then we had to wait a few hours for the results, which, thank God, were negative. What is difficult about the treatment for NEC (bowel rest - no food, just TPN) is the fact that Jonathan is hungry. His tummy is empty and he doesn't like it. He has to stay NPO until Monday. As Janis says, it's hard to be holding your child, who has feeding issues, and he is crying and rooting giving all the signals that he actually wants to eat and you can't feed him. He also will have to have his dressing changed daily, so they can get daily x-rays of his O without anything covering it. It's going to be a long week, so please send kind thoughts to Jonny. This morning we took the G-tube course - which was very interesting - while Jonathan got his ultrasound mapping test done to see if a g-tube is feasible for him. Unfortunately, the results indicated that it is not. Simply put, his liver is too close to his stomach and his stomach is not deep enough into the abdomen. So, we can't get the g-tube put in right now. They'll look again in a few weeks to see if any organs have shifted (which occurs in O babies). In the meanwhile, Jonathan will have to continue on the yucky NG tube, and getting out of NICU is, again, a bit farther away. His Sats were still low last night, so when we arrived this morning, he was on oxygen. This is the first time he has had to be on oxygen since the day he was born, and honestly, seeing him with the nasal prongs shocked me. Since this morning, they weaned him off of the oxygen a bit. Maybe by tonight, he will be okay to breathe all on his own. His echo cardiogram indicated that there has been minimal change in his heart so the low sats are not a result of his Tetralogy of Fallot. It might be because he is fighting this infection. By the way, I requested of our NP that if she ever throws a new doozy of a condition at us (like "Necrotizing Enterocolitis"); and if it appears to her like I might go home and look it up on the internet, she is to bonk me repeatedly in the head with a flashlight. If you have googled it, you will know what I mean... One final note: Lately every time we leave Eli - whether it's dropping him at school or at family; even if we've never said that we're on our way to the hospital, he always says to me, "Mama, wait! I have something for you to give to Jonathan," and then he gives us a big kiss with a raspberry, and a hug for Jonathan. He also told me that we should share his baby oil with Jonathan to make Jonathan's skin nice and soft. And he said he thinks Jonathan is the cutest one in our family. JANUARY 29, 2007 - NEC Jonathan has been diagnosed with Necrotizing Enterocolitis, a gastrointestinal disease that involves infection and inflammation. In severe cases NEC, as it is known, can cause destruction of the bowel (intestine) or part of the bowel. Needless to say, this is serious. It may not as bad as a bowel obstruction (which would require surgery) but it could be worse. Diane is not permitted to do any cartwheels. For the next seven days he will be on three different antibiotics to treat this. His bowel must be rested. He can have no milk or formula so he remains on TPN. In addition he seems to have developed a skin rash in reaction to either one of the meds or the blood transfusion (!). He had to have an IV line put through a vein in his head for the transfusion since his PICC line in his arm is being used for the TPN and antibiotics. It's very awful looking to me. The mapping procedure that he was supposed to have this morning (to see if a g-tube is feasible) has been postponed but Diane and I are still going for the g-tube course on Wed. What else can I say....I cannot believe what our brave little Jonathan has had to put up with. At least he seems in less pain today and has been sleeping well. May all this be over soon.... JANUARY 28, 2007 - Transfusion Jonathan is going to be transfused. They think his Sats are low because he is anemic, and the transfusion usually helps. The surgeons are starting to put clues together, and based on a careful review of his abdominal X-rays, today they now believe that he does not have an obstruction, but he has an infection in the bowel. His main surgeon will review the X-rays tomorrow and maybe order more, and try and confirm this diagnosis. In the meantime, he's been put back on anti-biotics and will remain off food, and on IV TPN (possibly for a week). If he does have an infection, and not an obstruction, I (Diane) will do a cartwheel. It will not be pretty. But I will do it. Because an infection is treatable. JANUARY 28, 2007 - Down again Yesterday Jonathan continued to have trouble sleeping. He kept waking up in pain, and looking uncomfortable all morning. Then, he had bilious aspirate (bile coming up out of his NG tube) again, just like two days ago. About 100 cc's came out of his tube. People were amazed at the amount, and at how brave he was - normally, a baby would be vomitting and crying. He confused everyone. They thought is was just gas, and felt guilty that he had been suffering with all this bile backing up into his stomach, possibly due to an obstruction. (To remind: bile belongs in the intestine not the stomach, so it usually indicates a bowel problem, and they don't like to see more than 10cc's of any aspirate in his stomach.) Once the bile all came out, he was finally able to sleep, and seemed to feel much better. The prevalent theory now is that since he is stooling, he must have a partial or intermittent obstruction. He's back off his feeds and on TPN. On Monday he will possibly have a GI contrast study to locate and analyse any obstruction, and come up with a strategy of what to do. He is very pale again. His blood oxygen saturation level (which has always hovered in the low 90-high 80%) was in the 70's much of the day. This is concerning. The doctors are considering giving him another blood transfusion today. He will have an echo cardiogram on Monday, and hopefully his cardiologist, Doctor Jaeggi, will suggest some treatment. I (Diane) did his dressing change yesterday, for which he was given morphine. The bleeding area is scabbed over, and there were two new bleeds, but nothing like it was two days ago. Phew. Needless to say, Janis and I are reeling a bit. But at this moment, we just want him to have relief from the pain and come back to his sweet old self. JANUARY 26, 2007 - Sleeping It's 12:00 noon and I'm happy to report that Jonathan has been sleeping all morning - a nice deep sleep - and is back on full feeds (fortified to 3600). It's dressing change day today and we usually do it in the morning but we'll let him sleep as long as he needs and then do it when he wakes up. I am so relieved to see him sleeping nicely and looking pink and peaceful. 8:30PM - Jonathan's blood cultures came back, and he does not seem to have an infection, so they are stopping his anti-biotics. The current theory is that there was a temporary obstruction in his bowel as a result of his organs shifting in and out of the O. But no one can be sure. The dressing change was challenging today. He started to bleed in one spot and we were unable to stop it using pressure, so the surgeons were called in and put a special dressing on it to stop the bleeding. We have to change his dressing again tomorrow (instead of leaving it for three days) to make sure everything is alright. The rest of the O looked great, though. The French surgeon Arnaud said it was "beautiful". He gained weight last night, and he seems to be tolerating his feeds so far. Now we are watching to make sure the pooping is on track. The hernia is still reduceable, so that's good too. Oh, and he seems to have a slightly swollen foot and leg, for no reason, just to make all of my roots gray (Diane). Janis here with one last thought before bed: I was just saying to a friend that I really can't wait until he's well enough to get out of hospital. I've decided we're going to have a royal procession along Carlton Street the day he comes home. JANUARY 25, 2007 - Recovery? Jonathan is better. He's not on feeds yet, is still NPO and is in "recovery mode", i.e. sleeping a lot. He has some pain when he has gas or needs to stool but it's better and the tylenol helps. They don't know what was wrong. Nothing has come back positive so far. Dr. Fecteau (our surgeon) and Dr. Hellman (neonatologist) seem to think he had some minor infection in his bowel (although it didn't seem minor to us). NP Carol seems to think that a part of the bowel got obstructed and then corrected itself. The good news is that the vomiting bile has stopped and he's pooping and is not in distress. The surgeons, who are in charge of feeds, will reassess him this night and hopefully he'll be well enough that they will put in the order to restart feeds (breastmilk) tomorrow. And hopefully he'll do okay and be back to his old self. In other news it looks like Jonathan will be getting a g-tube. He has a big procedure booked for Monday morning called a "mapping" which will determine where his organs are exactly located and if a g-tube is feasible (it's like a contrast test). We are taking a g-tube course next Wed and will share more then about what we learn. Dr. Fecteau has also said she can fix the hernia when she does the g-tube surgery. BTW - the Infant & Child CPR course tonight at Mt. Sinai went well. I'd recommend it for anyone. Now it's time for pumping and then some much needed sleep....goodnight and take care. JANUARY 24, 2007 - Down That is the way I feel right now. Jonathan is really sick again and I don't understand why and I feel impotent to help him. He started having green bile come up his NG tube this morning. A lot of it. He's been unhappy and uncomfortable, as I've written, every day for the last few days. Today he was clearly in pain. Spent most of our energy between interventions trying to get him to sleep and the poor guy could only nod off for 10 - 15 minutes before waking up crying. He can get tylenol and a little bit of sucrose for the procedures but not much else. We've had to go down the whole road again: urine catheter, blood tests, x-rays, blood cultures, antibiotics, etc, etc. He's totally off feeds and back to TPN. I thought, naively I guess, that we'd graduated and moved beyond TPN so I don't like seeing that yellow bag hanging from his IV pole again. NP Carol said they suspect either a bowel obstruction, a bowel infection, or a kink in his intestine that might correct itself (common with O babies as the organs move in and out of the body). I try not to let it get to me but we'd been feeling so optimistic lately, making discharge plans and really imagining him home. He'd been doing well. I'd managed to wrap my head around him getting a g-tube in large part because that would help get him home. We signed up for an infant CPR course tomorrow night, and next week we're attending a g-tube information session for parents. We'd even got a new crib set up in the office and made plans to get a change table. Now, well, who knows. The thing I have learned is that everything can change very quickly with our little boy - for better or worse. I'm heading back tonight and hope there is some good news. Will report more tomorrow. What a roller coaster. I have so much more respect and admiration for the moms I know who've been through this before. I really had no idea how tough it would be at times. Diane here - We had Eli at the hospital today for the first time in a few weeks. I wish it wasn't such a difficult day. Eli was stellar. We went to the top floor and saw how all the people and cars look like dolls. He was allowed to touch Jonathan's feet, and he said how cute Jonathan's legs were, which they are - little Janis soccer legs. There is no other way to say it, this is rough. Poor little Jonathan. But he did improve from morning to afternoon. Hopefully he will have a restful night. JANUARY 22, 2007 - New Plans Jonathan had to have a blood transfusion today. His haemoglobin was too low, and the neo-natologist, Dr. Jonathan Hellman (or "Uncle Jonathan") said he looked like Casper. We were happy to have it done as it lifts his spirits. Also, he does have a hernia around his testicles. They are very swollen looking. NP Carol "popped" them back up right in front of me (Diane) and I felt the room spin and had to grip the edge of the crib. Then they descended again. It will require surgical correction. The hope is it can wait until he's already under anesthetic for his heart surgery, but it may have to happen sooner if he becomes uncomfortable. There is also risk of bowel dropping in there and "strangulating". Oy. (translation: "enough"). Good news is that Jonathan gained an average of 30 grams a day during the last week! Yay! And he was less gassy today, so maybe he's getting used to the fortification. The plan for the next few weeks is to either fortify some more or to increase his EBM volume so that they can wean him off of his IV lipids without him losing weight. The goal is to eventually get him off the IV and the need for a PICC line altogether. They will also keep working on his feeding - oral and bolus (although we don't think bolus feeding will be tried again this week).The issue of replacing his NG tube with a G tube has been raised, but probably is not imminent. We hope he has a good restful night and that the transfusion brings our sweet, alert, smily guy out more and more. JANUARY 21, 2007 - DAY 68 Jonathan went through discomfort this morning but was generally okay this afternoon and evening. He slept well and seems to be recognizing our familiar voices and faces. Had lovely visits today from "Auntie" Netty and Saba & Safta (who took beautiful new pictures that are on the photos page). His testicles were enlarged today and the surgeon said he may have a hernia. It can happen from the pressure of the omphalocele or maybe his organs moving into the abdominal cavity. I don't know if we should be concerned or not. We'll find out more tomorrow and hope it's okay. Poor guy certainly doesn't need anything else going on. Tomorrow is Monday so it's the beginning of a new week which means Jonathan's regular team is back and they'll begin the week by reassessing his care plan. We look forward to Mondays and also kind of dread them. Unless we're wrong we imagine issues for this week will be: weight gain, bolus feeds, picc line and ng tube. We're facing the reality that Jonathan may need a g-tube to go home (see medical terms). JANUARY 20, 2007 - Two Steps Forward, One Step Back Well, yesterday was one of the most intense days we've had in the NICU. To make a long story short, surgery put Jonathan NPO (no milk, just IV fluids) after the midnight vomiting which we'd been promised wouldn't happen. The next morning, when I arrived at 8am, he seemed hungry, for possibly the first time in his life. Since he wasn't getting any milk, the nurse suggested we try breastfeeding. Well, he took to it and everyone (including me) got very excited. Our nurse called in the OT and the lactaction consultant and the NPs and we were all set up for 12:30 and let's just say it didn't go well, and then it didn't go well again at 3:00. He seems to have "aversion to flow". Which means that there's nothing wrong physiologically (he can suck, swallow and feed) but he reacts with fear to too much fluid in his throat so he pulls off the breast or bottle. That on top of the bad reflux he gets from the NG tube. At 5:00 pm they put him back on the NG tube feeds, slow hour-and-a-half bolus. Then he vomited at 4am and again today at noon. This afternoon, the surgeons stopped the bolus, and put him back on continuous feeds. Back where we started, but he's stable. Diane here. I'll just say Janis went through a roller-coaster yesterday. Any mom who's breastfed could try to imagine what it was like. Regarding the bolus "plan": our NP explained to us that some vomitting and discomfort doesn't mean he's "failed" bolus. They will give him a rest (fine by us) and then try again in a little while. The agenda for next week will likely be to focus on weight gain. They will also try to get rid of his PICC line (the semi-permanent IV line in his arm). If they can do that, he will have a few less tubes, and less chances for blood infections. And he will be one step closer to being able to get out of the NICU. JANUARY 19, 2007 - Not a good night We got a call early this morning from Jonathan's overnight core nurse, Serena. She wanted to let us know that he did not "tolerate his feeds" overnight. He was really uncomfortable and gassy from about 10pm on, and then threw up a very large volume of food around 12:30am, tinged yellow (from the progestimil?). After which he settled and has been sleeping (since about 2am). So they took him totally off his breast milk, and put him on IV glucose feed. Sigh. Janis has headed off to the hospital to try and get some idea of what this means and the next steps, and I'll follow after I drop Eli off at school. This is a disappointment. He seemed to be handling things. And, as usual with our boy, since he waited a few days to have a reaction, we're not sure what it is that he's not handling. At least he's resting comfortably now. JANUARY 18, 2007 - Big Week for Feeds This week and next week are really big for Jonathan in terms of feeding and weight issues. On Monday he was put on slow bolus feeds. On Tuesday they fortified to 3300 (and did his dressing change). On Wednesday they increased the bolus to what they call Q2 (one hour feeds, one hour off). Through it all he has done great. Some gas, reflux, discomfort and vomiting but no major intolerance (thank god). People are quite amazed at what he has been able to handle. I am very proud of him but just hope we aren't pushing him too hard. Carol, his main NP, has said she'll let him rest for a few days over the weekend and then take more steps forward Monday. This is all in line with the plan I wrote about in the Jan 6th update. Have I mentioned that Jonathan is in a cardiac room? Even though he also has an omphalocele, because he has TOF, he is with three other babies with heart issues. Right now two "neighbours" are twins. They each have a healthy twin at home. It's not uncommon to have multiple birth babies in the NICU. In every room (of four babies) there is always the one baby who is the most sick or the most needing medical attention at any given time. As you know, there were the two in a row around Xmas that didn't make it which was very heart-breaking (the one with an enlarged heart and the little one that was only 450 grams). Now there is a little guy who has been in NICU for eight months (!) He's got a lot of issues going on and the doctors seem to be struggling. They discuss his care at bedside a lot (i.e. debate, argue - it's hard not to notice even when you are trying to be careful and mind your own business). There are surgeons around a lot so he obvously needs some type of surgery. I really hope he pulls through and gets better soon. He doesn't deserve this. JANUARY 16, 2007 - Our Brave Boy Guess who's not only tolerating the slow bolus feeds but the fortification to 3300 as well (at the same time)? That's right, Jonathan "Stinky Pants" Purdy-Flacks. Guess who's got a clean omphalocele that is growing skin faster than any other O baby Theresa Allen has seen? That's right, same guy. Guess who got his picc line changed and his O dressing done within two hours this morning and didn't raise any fuss at all? (Okay, he was on morphine, adds Diane) But he's still our hero, Johnny, such a brave boy. It's 10:30 pm now and I just said goodbye to him at the hospital and he was sleeping and it was hard to leave because I just wanted to crawl into his bed beside him (or bring him home and tuck him into bed here). But at least he's with Serena (his second core) who is wonderful and will probably dress him up in a sleeper when he wakes. With all his tubes and wires and IVs he doesn't usually wear clothes but Serena likes to "play" with him a bit when he's up for it. It's sweet and it helps us sleep knowing he's with her tonight. We'll see what she'll have him wearing tomorrow morning. JANUARY 15, 2007 - We Are Very Tired Lots of conferencing and debate about Jonathan today. They were supposed to start bolus feeds today (please see medical terms if you're not sure what bolus means). Some felt it wasn't a good idea because he's on antibiotics and may have an infection. So Kim, the NP, suggested a compromise of "slow bolus" or a more conservative bolus. 40cc over an hour and a half with half hour breaks in between. So far he seems to be doing okay but we're keeping a close eye on him. He hasn't thrown up, but he seemed uncomfortable and "refluxy" the last time I left him. If anything goes wrong - if he gets tachypneic or has bad reflux or gas pains - they have promised they will return him to continous feeds tonight. At least we now know that his stomach can handle a larger volume of fluid which is great news in the big picture (towards getting him on the bottle and/or feeding more like a normal baby). His biggest problem these days is that he is still not gaining weight (!) Over the last week he has gone up and down but in the end gained only 10 grams. Ughh. He's just not getting bigger and they don't know what to do other than fortify again which they plan on doing tomorrow. He is now on 3000 (combo EBM and pregestimil) and tomorrow they take him up to 3300. Which means this bolus will probably end tomorrow anyway as they will be unlikely to do both at the same time. We've been doing the dressing changes every single day for a week now since the bad smell and the group B strep they found last week. The exciting news is that Diane has done what she said she'd never be able to do - she has taken the lead on the dressing changes two days in a row. And she's done great! (Diane here - I did put one of the dressing pieces on upside down, but Janis caught it). We're both pushing our limits to show how we can care for Jonathan ourselves. Tomorrow Theresa Allen comes back to see the results of the dailies and I'm hoping for four things: I hope she likes what she sees in terms of the skin granulation; I hope she doesn't go at it as rough as she did last week (the debriding of the old skin); I hope she'll keep letting us put flamazine on to sterilize the O; and I hope we can go back to doing the dressing change only once every two or three days. This afternoon Eli asked Diane where I was and she told him I was at the hospital. "She's always at the hospital", he said. "Why are you always there?" "Mommy is with Jonathan, helping him get better, so that he can come home to us." replied Diane. "When will he come home?" Asked Eli, "When he's four?" Diane said he'd be home in a few months. "When he comes home he's going to sleep with me in my bed," said Eli. "No, honey, he has to sleep in a crib, like you did." "Then he will sleep close to me because I love him". JANUARY 14, 2007 - Happy Birthday Jonathan Today Jonathan is two months old. Happy birthday our sweet love (can't wait to celebrate one day at home). He's been generally good since the last post but unfortunately over the last 24 hours we've been going through another "what is wrong" roller coaster. He's thrown up a bit, been pale, sleeping all day long and quite listless and no one is sure what is going on. They did a blood count and found his hemoglobin has gone up so he is probably not anaemic; but his "bands" (immature blood cells) are also up and that can indicate infection. He's had no fever but they are doing a "septic workup" this morning - urine and blood tests - and they're putting him on antibiotics and hopefully by later today we'll know more. We're crossing everything that he doesn't develop more clinical signs of infection or sickness (fever, vomiting, etc). He's supposed to start "bolus" feeds Monday (tomorrow). So, we are going in now and hope today he'll be more himself: alert, interested, making his lovely faces, and kicking me (Diane) when I change him and giving me a very angry "that's my diaper" look. JANUARY 10, 2007 - Philosophical Great day today. He's showing no clinical signs of infection so they're holding off on any antibiotics until they know more. His colour came back so they're not doing the blood transfusion. His dressing change went well today and we were relieved to find it looked good after yesterdays scrubbing from Theresa (necessary but quite brutal). But the coup de grace was that at around 6:00 PM he took his bottle for the first time in days and days and actually sucked back a whole 5ccs. So he can do the suck-swallow-breathe thing. We saw it. He did it. Well done, Jonathan! Well done, ever patient Diane! To end on a philosophical note, yesterday Leslee came by (mother of a daughter born with an omphalocele 6 years ago). She gave us a card that read, "Joanthan's special beginning will remind you what is really important in life: health, love and family". Today our nurse, who was new to Jonathan, said after the dressing change, "I truly believe that babies who have to survive these difficult starts are destined for great things in life". Amen! JANUARY 9, 2007 - UTI? Jonathan had a helluva morning today. He had to have a renal (kidney) and a bladder ultrasound, which is very difficult with an omphalocele, and then immediately after, a dressing change where they scrubbed off some of the old skin. Very uncomfortable and difficult long morning. The good news is the O is really growing new skin at a remarkable rate; Jonathan has so far tolerated his fortified feeds (!); and there is no kidney issue. The newest challenging news is that the bladder ultrasound showed debris which could mean the urinary tract infection has not been cleared up, which means more tests and probably more antibiotics; his dressing regime needs to be changed back to the flamazine and back to once-a-day instead of once every three days in order to clear up the weird Strep B infection; and Jonathan is a bit anaemic and may need another blood transfusion in the next few days. Janis and I took him for a short stroll today which he loved. He smiled a bit and he makes lovely, funny old-man faces. He had a nice nap today too, first time he rested well during the day in a long time - tip of the hat to Maureen! Oh, and check out the new chubby-face pics in the photos section (No, not of me, of Jonathan!). Oh, and we took Eli skating on the weekend and he was incredible. JANUARY 8, 2007 - Fortification, Ultrasound and Puss At 1:30 Pm today they began the new fortification of Jonathan's milk (or EBM, expressed breast milk, as it's known in the NICU circles) in order to add more protein to his diet and help him to gain weight. I just got home and as of now (7:30 PM) it's been up to 3000 for 6 hours and he hasn't had any vomiting. He's been pale and reflux-y all afternoon (poor little monkey) so I'm nervous but have fingers crossed that he can make it through the night without any major negative reaction. We will be checking in all night and will go back if needed. Tomorrow morning they are giving him a renal ultrasound (RU), which is not very comfortable, and have called in the ostomy expert (Theresa Allen) to look at his omphalocele during the dressing change. The RU is related to when he was diagnosed with the urinary tract infection (remember that?). It can tell us whether there is any danger to his kidneys from having had the infection. The omphalocele issue is the following: at the last dressing there was puss on top of the wound. The nurse took a swab and it came back positive for a type of Strep B bacteria (Streptococcusblahblahblah. Our nurse Kelly said, "The word is so long, I don't even try to pronounce it"). It's rare so they sent the results to the Infectious Disease Unit to get their perspective. But they also want Theresa to have a look and tell us whether we should be concerned or change the dressing or what. So, tomorrow is a big morning.....will let you know how it goes. JANUARY 6, 2007 - January's Plan of Care All Jonathan's medical team members have now consulted and developed a plan of care for January. It's in three stages: Step 1) Fortification (again) - The plan is to begin fortification this Monday, adding Pregestimil formula, a partially digested high-protein, high-calorie mix to his 19cc hourly breast milk. I am very nervous about this as fortification in the past has sent him into terrible vomiting and worse (then they freeze his feeds and we move three steps back). But I am also eager for him to gain weight so I will hope and pray it works this time. They will watch him closely and if he does well on the fortification for 4 - 5 days they will begin the next step. Step 2) Bolus Feeds - Right now Jonathan is on slow continuous feeds which means he gets a small amount of breastmilk continuously through his NG tube. His stomach always has something in it and he's never hungry. With Bolus feeds they hold back the continuous feeds for a period of time and then give larger amounts through his NG. This way we will begin to learn how much, what volume, his tummy can process at a time. They start this slowly (say twice a day) and see how he does and move him up gradually. Ideally he would feed every 3 hours like how a healthy baby feeds. Step 3) If his bolus feeds are going well, at some determined point - perhaps after a week - they will begin intermittent oral bolus feeds with a bottle. Eventually, the dream/goal is to get rid of that horrible NG tube altogether and have Jonathan managing his feeds orally. This is a very tall order for a little one who's stomach is misshapen, has most of his intestines in an omphalocele and who's been on an NG tube for the first two months of his life. But I have hope and determination and desperately want him home so I will do whatever it takes from my end. The question is, what can he do? He will be our lead in all this. Go Jonathan, go! Let's show them what you're made of! JANUARY 4, 2007 - DAY 53 Jonathan is doing generally really well these
days. He's stable and his heart rate, respiratory rate and oxygen
levels are all good. He is awake more, his eyes are bright and he's
engaging in more purposeful eye contact. He turns to sound and he
is a little more physically coordinated (especially his neck and
arms). He is a lovely, sweet, thoughtful little baby. ??We have
now been in Sick Kids for over 7 weeks now. That's 53 days. Almost
two months. There are days I feel enough is enough - that our little
guy is already too old for the NICU. It's a very intense place where
newborns come and go everyday, and we are definitely tired of the
daily realities of hospital life. But he continues to need intensive
care and to hit some important milestones. For example, he's not
gaining weight to the satisfaction of the medical team. He's gained
an average of 12 grams per day which isn't terrible but isn't the
20 - 30 they want and need for him to be ready for surgery or to
move up to the next level. The dietician and team are consulting
on the next step care in this area. The bottle is also not going
perfectly. He started off well but his interest has dropped right
off. The OT was brought in today and will be working with him for
the next little while to try to re-introduce the bottle. She's also
working with us on what we call his "baby yoga". Diane
and I did his dressing again yesterday morning and it went much
better than the last one. We weren't under pressure from the nurse
or surgeons and started when Jonathan was calm and ready. It's much
easier when he's not kicking and flailing. The omphalocele itself
is looking remarkable. You can't believe how the skin is growing.
It's developed from a kind of gelatinous membrane to a green-gray
covering, to black scale layers (like thick burnt paper) to patches
of very thin, veinous skin, to what looks like real pink skin (which
is the last stage). The skin grows up from his tummy at the base
of the omphalocele and down from a few patches on top. It's a slow
process - the skin grows only a few millimeters per day - but it's
fascinating and makes you wonder at the ability of the human body
to regenerate. On another note, we are very glad to have our familiar
nurses, doctors and NP's on again. Around 120 nurses work in the
NICU at Sick Kids and we had a different or new nurse practically
every shift over the holidays. Each one brings their own personality,
nursing style and assumptions to the table and you as the parent
have to work around them. It's tiring on top of everything else
(especially when you don't feel comfortable with them). But on the
upside, we've met a few lovely new nurses who may care for Jonathan
more regularly. Diane has also been doing some spot-on impersonations
that crack me up and help ease the tension…On a final note,
we've bought Jonathan a new radio for music stimulation (which he
really seems to like) and a bouncy chair so he can sit more upright
and enjoy different views. We've also taken him for a longer ride
in the stroller through the level 3 hallways. More fun for us than
him as he slept through most of it but I think he enjoyed the new
views and the feeling of movement. I'll tell you, it was hard not
to make a break for it and run right off the unit to the front door. DECEMBER 30, 2006 - First Stroll Jonathan is stable today and
I think we saw some more little smiles. His feeds are now almost
maxed out for his weight (19 cc's an hour, continuous). The goal
is to work toward feeding by mouth, larger amounts at once. Currently,
he is having trouble figuring out the suck/swallow/breath thing.
And we are taking it very very slowly. Today one of Jonathan's nurses
suggested that we could get him in a stroller and wheel him to the
end of the NICU room and back (about 15 feet). So, Janis pushed
a stroller, I pushed the IV pole with all Jonathan's feeds, and
Eli helped. What a great big brother. We turned around at the end
of the room and came back - about ten times. It was a glimpse of
"normal" and it was exhilirating and difficult all at
once. DECEMBER 28, 2006 - Stomach Drop! An x-ray has confirmed that Jonathan's stomach is shifting south. It used to be at the top of his omphalocele but has dropped down to now be partially in his abdomen. This is a huge development! It means a) his abdomen is getting bigger and able to accomodate some organs, b) the base of the "O" is widening and, c) his stomach is now in a better position for tolerating food and reducing acid reflux. His feeds are up to 18cc per hour and he continues to gain weight: 3200 grams last night which is over 7 pounds. Can you believe it? I am "power pumping" to get keep up with him. Yesterday I was at the pumping machine every 2-3 hours around the clock which is something I'm sure they do at Abu Ghraib. We are conscientiously giving him two bottles a day (very tiny amounts - about a tablespoon per bottle) and what we call his daily "baby yoga", the physical therapy exercises that help him move out of the tense "retraction pose" that he is in so much from being in NICU. He generally pulls in tight on himself, defensively, and he hates being unwrapped. It can take about 20 minutes to relax him enough to even begin and then another 20 - 30 to get him to, say, raise his arms above his head. But it is magic when he is finally lying there, relaxed, unwrapped and in an "open" position (even if it only lasts a few minutes). My goal for January is to get him to move more comfortably (more like a normal baby) and to take oral feeds regularly. BTW - We've had a new neighbour in the spot next to us since the day after Christmas: a little one weighing 400-something grams. I have never seen such a tiny baby in my life. Also, there are new pics from Xmas on the photo page if you haven't seen them yet (gentle reminder to refresh your pages often). DECEMBER 25, 2006 - Merry Christmas A Christmas gift from Jonathan: I believe this weekend he has had three of his best days since being born! He's been calm, pink, alert and gaining weight. And he seems to have done well going off his Lasix (heart meds). I'm so proud of him. I have enjoyed being with him all day: doing his exercises with him, holding him and sitting with him while he sleeps or looks around. He is my miracle and my inspiration. He was also wide awake for Grandma, Grandpa and Uncle Ian who all came by the hospital today to celebrate Christmas with us.In other news, we've had our ups and downs here today. Diane, unfortunately, has been very sick since this morning. She left the NICU because she felt unwell and made it to the parking garage before throwing up. Eli said all excited, "Mama was at Sick Kids and she was sick!" She's been at her parents most of the day so we've been separated and will likely be tomorrow as well. In very sad news, the little baby in the bed next to Jonathan did not make it through the day today and was taken off life supports late afternoon. The space is empty now and my heart aches for her parents who will always have this terrible association with Christmas. There is nothing you can say.On the up side: Santa and his elves came by this morning and gave presents to Jonathan and Eli who was very excited by it all. I was full of complex emotions seeing Eli with Santa in the hospital and made the big green elf take two pictures - one where I wasn't crying. Our little friend Stephanie got to go home today (just for the day) after 12 weeks - which is very exciting. I've been thinking about her hoping it went well. Nurse Kelly gave Jonathan a soft new blanket and a grow chart for Christmas and they spent some lovely bonding time together in their favourite "upright" position looking out the window. Finally, Uncle Daniel and Aunt Kelly made a wonderful Christmas dinner for the whole family that I raced to for just a short time. Thanks guys. Next year, we'll all be there, I promise. DECEMBER 23, 2006 - Day 40 First Day of Winter - I can't believe we are so close to Christmas. Everything seems so surreal or distant these days. This morning the police came by with presents for the babies in NICU and on Monday Santa will be making the rounds of the hospital. There are four little ones in our room right now. Two prems (one boy born at 29 weeks with a heart condition and another born at 24 weeks with multiple challenges) and a newborn girl across from us who also has Tetralogy of Fallot on top of other issues we don't know. She is very sick and there has been a lot of activity, stress and doctors around her bed lately. I'm worried about her and really feel sorry for her parents. But you never know, these little ones can make amazing recovery. All the others are intibated (on oxygen) and two are in isoletes, so Jonathan is the only one that can be heard crying or making any noise. At night it can be strangely quiet. Today Jonathan did very well and slept a lot. We did his dressing change after three days and his omphalocele is looking good (the skin is growing well). He has not gained weight but is holding at his recent weight of 3030 ("Birdy Purdy 3030"). So far he's managing the milk well at 17cc per hour. By tonight or tomorrow morning we will be able to tell whether going off his heart medication was a wise decision. Will post more then. Hope everyone is doing well and enjoying the start of the holidays. DECEMBER 22, 2006 - Little Victories Today Jonathan had a session with the Occupational Therapist, Sandy. He has a lot of things that we need to work on with him, because he mostly is on his back, and because the stress of being touched in order to be poked, measured, stuck with needles etc makes him tense his little body. She showed us how to support his omphalocele to make him feel secure; to massage his limbs from his body out; to help him relax so that he can stretch his arms and hands. By the end he was so relaxed that he did something we have never seen him do before: he played. We showed him the giraffe that was a gift from Netty and he batted at it and looked at it like any newborn. Plus I gave him 5cc's from a bottle. Bliss. The cardiologists have decided to try and wean him off of his heart medication - so we'll see how his breathing is on the weekend. His feeds continue to go well. Merry Christmas. DECEMBER 20, 2006 - The Rollercoaster of NICU Well, the big news today was that they discovered that Jonathan has a urinary tract infection - so he did have an infection after all - which may have been the cause of all his troubles. It will take another day to discover exactly which bacteria is present and how to treat it. Then, they will also have to find out what caused this infection (was it kidney stones caused by the lasix? reflux? something else?). Anyway, we are very relieved to have some answer.The great news is that he is at full feeds again, has surpassed his birth weight (!!) and today, for the very first time, was given 5cc's of breastmilk orally through a bottle! Now, 5cc is about 5 millimeters so it's a very tiny amount but he loved it and was able to swallow it (which is amazing when you think that he has never swallowed anything in his life yet). Insert my small, embarrassing victory dance here. He will get 5cc's a day for a while, if he stays stable. Hopefully this will help him to not develop an eating aversion. Also, his O dressing looked good this morning and Janis did a great job of changing it (under the supervision of Theresa). He was much more alert today, and loves making "O" faces with his lips (He is an "O" baby after all - sorry).Janis and I continue to learn about life in the NICU. Newborns that are in critical care can get very sick, very quickly. It's frightening. But then they can stabilize very quickly. As a result, parents swing to extremes. You can get very dark and depressed and scared - or, when things go well, you can swing to this crazy euphoria - like when someone laughs too long, with watery darting eyes, and you look at them like, "ooh, that was a bit much." We know we are not that fit for the real world at the moment, and that's fine for now. DECEMBER 19 - Night time report Tonight Jonathan is continuing to improve. They actually got negative results from all the cultures so far. That means no infection that they can spot. Surgery believes what happened was due to intolerance of fortification. But neo-natal does not. Regardless, they won't fortify his feeds for now. They will try to get him to gain weight and grow by increasing his total fluid intake (TFI), upping the amount of breastmilk he gets in his NG tube each hour. This might cause cardiac distress, as more fluid can translate to more "water in the lungs". If this happens, they will increase the amount of his daily lasix, to help get rid of the excess water. Tomorrow will tell more. He's also getting his new dressing changed tomorrow. We cross our fingers it's not too dry and everything looks okay with his O. I can't believe all he's been through in the last few days. He loves looking at his mobile and the lights in the Sick Kids atrium. We love him so much. DECEMBER 19, 2006 - Morning Report This morning Jonathan was looking better. He has better colour (I guess he needed that blood) and is calmer and more alert. Apparently he slept well from around 3:00 am until this morning when he had an echo-cardiogram. Final blood culture says no infection. Initial results from the lumbar puncture also look good. So really, I believe we can say at this point, he didn't have an infection. What was happening? Don't know. Don't have results from the echo yet. But when you look at him he looks better. His feeds are on and up to 7cc. And his omphalocele dressing doesn't need to be changed today. Theresa has said it can wait until tomorrow morning - the first time we've let it go 48 hours. On Monday everyone agreed the "wound" (as they call the O) is looking good and skin is granulating well. So, that's what I know now. Diane will give a fuller report later after the doctors do rounds. Today Grandma will be in to see him for her Tuesday visit. One of her last before she leaves for Victoria. DECEMBER 18, 2006 - Interventions Jonathan was still not well today. He was "not himself", uncomfortable, crying more than usual and had episodes of losing colour. But no one has been able to determine or tell us what exactly is wrong. I really wanted him back on feeds this morning as promised (he's been NPO since Friday night) but we had to wait for surgery to approve which couldn't happen until late in the day. The good news is that he is now back on at 5cc an hour to go up 2cc every 8 hours. Diane and I figured that over the last two days he's had both his meds increased, 2 doses of Tylenol, 1 dose of morphine, two omphalocele dressing changes, his picc line dressing changed, his NG tube replaced, blood taken for blood levels and a blood culture test, abdominal x-rays, chest x-rays, 2 catheters for urine samples, and 3 courses of antibiotics. And then at 4:00 PM today, just before they were about to begin feeds, the doctor in charge ordered a lumbar puncture (see medical terms) and a blood transfusion. I was against the lumbar puncture because I felt I just hadn't seen enough evidence that an infection was present to justify it. I actually had to leave because I couldn't stop it from happening and couldn't stand by and watch it either. Boy, did I feel helpless. I think he is so strong and I feel so bad at what he has to endure and my inability to protect him. What so many of these little ones at Sick Kids have to endure. Each night of Hannukah we've been lighting candles and saying wishes (Eli started this lovely tradition last year). We always light an extra candle for Jonathan, Eli's friend Stephanie (who is up on the 5th floor) and all the children at Sick Kids. Tonight I wished for him an uneventful night, a good, deep sleep and a much better day tomorrow. DECEMBER 17, 2006 - Still NPO It's Day 34 and we're still in the NICU. Jonathan seems better today but he's still NPO (no feeds - which I hate) and it looks like they won't start again until Monday. He did start TPN this morning which is better than nothing. The bilious aspirates can mean his digestive system is moving things in the wrong direction (as his NP says, "green should never be in the stomach"). I have noticed that he is very gassy and having more spits ups and acid reflux than usual. One of the doctors thought he saw "free air" in his bowel on the x-ray. That would have been bad as it would indicate an "acute inflammatory condition of the bowel". Thank God, the radiologist saw none of it. But they don't really know why he got sick. We are waiting on some test results now (a blood culture) that will confirm if he has an infection or not. I really can't stand it when he's not doing well (the worrying is the worst). I think I've aged about 10 years in this last month or so. But thanks to all the wonderful people who've brought food to the house, I am managing to cope by eating my feelings. Seriously, thanks, we really appreciate the food as there is little to no time to do any normal household things. December 16, 2006 - Vomiting and Bilious Aspirates Well, "success" is a quixotic word in NICU. After seemingly tolerating his feeds well for 3 days, Jonathan started the day on the 15th by losing weight. This is concerning as he's still not at his birthweight. The priority for his cardiac surgery; for the eventual progression on his omphalocele into his body; and for the journey toward him being able to eventually not have to eat through a tube, all relies on his ability to thrive. But the exciting news was that Janis did his dressing change. After watching new nurses have difficulty with it, she realized that we really are the only consistent ones, the ones who've been watching like hawks. So I wrote up a painstakingly step-by-step plan - both for us and new nurses- and Janis took it on - unwrapping, cleaning, redressing his omphalocele! I supported the O, and Serena P. coached and held Jonathan's legs. We did it in about 30 minutes. I am so proud of Janis' resolve, ability to plan and focus, her courage, and her dedication to her child. Not to mention - how strong her stomach is. After the dressing, Jonathan seemed to have a good day. And we felt more empowered in his care.Then last night, just before shift change around 7pm, he threw up his feeds. The doctor on rounds gave him some tylenol and it seemed to settle him. (Oh, he also yanked out his own NG tube last night. That almost made me faint. And they had to replace it, poor guy.) Doris and Dan and Kelly were there with me, shifting in and out of the bedside. The doc thought Jonathan might simply have a mild tummy upset.At 2:00 a.m., our phone rang, and it was NICU reporting that he threw up more, and had "bilious aspirate" (the stomach contents contained bile, not a good sign). They did an abdominal X-ray, took blood cultures to check for infections, started him on antibiotics, stopped his feeds, and put him on IV fluids.This morning, his core nurse, Kelly, told us that she thinks it is not feeding intolerance or an obstruction, but likely some sort of infection because his white blood cell count is up. We won't know if it is an infection for 24 to 48 hours. He's resting comfortably on IV fluids, and sleeping this morning, with Janis and Doris at his bedside. We'll keep you posted. DECEMBER 14, 2006 - Success It is now 24 hours later and Jonathan has had no adverse reaction to the recent fortification. I stayed with him until late last night and held him and other than signs of discomfort and some aspirate he did just great. And today he is sleeping well. We are so happy. And we are relieved to know that he can actually process fats and proteins through his tummy (small intestine actually). How much we don't know yet but he has the capacity! They had been giving him lipids (fats) through his picc line directly into his blood stream but now he can process them through his digestive system. The second reason this is good news is that he can now gain weight hopefully. Fortified breastmilk means you can increase the caloric content without increasing the TFI (total fluid intake). On 15cc per hour of breastmilk our little Jonny was just not gaining weight. He was born at 2790 grams (6lbs 2 oz). Before we had our set back last week he had made it up to 2760 (his largest to date). But then he lost weight. Today, four weeks after birth, he sits at 2730. The next milestone will be him passing his birth weight. Compare that with our Eli who gained a pound a week in his first weeks of life! Poor Jonny has not had an easy go of it but he's making slow and steady progress. We are grateful to Jonathan's dietician, Laura. Speaking of his team, today we were told we have four core nurses confirmed: Kelly, Sue, Regina and Sarina. That's good to know. They are all excellent. One more fun thing - Eli came to visit Jonathan today at the hospital and he saw an amazing train set, met a giant Rudolph Reindeer and joked with LooLoo the clown. From his view the hospital is a pretty fabulous place. DECEMBER 13, 2006 - Feeding There are wonderful new photos on the photo page taken Monday. Nice wide eyes and thoughtful face ("If I distract her I can I can pull this NG tube out once and for all"). As you can see, he is small and needs to get more meat on his bones. He's had a good few days so they are moving forward again with fortifying his feeds. Started at 2:00 PM today. Fortification gives him more calories and will help him gain weight. That is, if he can tolerate it. His liver, stomach, small intestine and bowel are all in the omphalocele, a tight spot and gravitationally challenged (his stomach, for example, is on the top of the O). Anyway, let's all cross our fingers we don't have any of what happened last week. They are going up slower (to 3000 rather than 3300). We'll know for sure that he's tolerating well if we see no adverse symptoms in the next 12 hours and if, by tomorrow afternoon, he is having good healthy stools (yellow and seedy for those of you who want visual details - and aren't eating as you read this). DECEMBER 12, 2006 - Day 28 Yesterday was our anniversary (11 years!). With all that's been going on I completely forgot. Diane remembered and gave me a beautiful card. I am making amends today with flowers. Jonathan gave us a lovely anniversary present - a day of calm and alert awake time (big eyes open), regular deep sleeps and a really uneventful dressing change. What a boy! Today we'll see what the surgeons and neonatologists have in store for him. DECEMBER 9, 2006 - Day 25 I'm glad to report that Jonathan had a good day today. He's slept a lot (which he's needed), tolerated his feeds well (up to 14cc) and his omphalocele looked good after the new dressing. He also enjoyed some nice bonding time with Grandpa, who held him for the first time this morning, and Ruth who noted that he has sweet tiny feet and funny looking toes (his middle toes do overlap a bit). Diane just got back from the hospital now (10:00 PM) and said that our Johnny is resting well, and back on the upswing. That made me very pleased. He has had some dramatic and scary bumps recently but he has also given us some miracles and I can't lose sight of that. The first miracle was that for a baby with his conditions, he has never needed supplemental oxygen. Quite unheard of. The second miracle was that he made it to 15cc or full feeds relatively seemlessly. Yes, he's gone backwards a bit recently, and we know that there will be more "rough patches" to come, but with time, support and careful management (and a few more miracles) I know he will get where he needs to be. I'm off to go pump now (every 4 hours I'm pumping like a milk cow) and then I hope to get a good night's sleep tonight. DECEMBER 8, 2006 - On the Upswing Day 24 - Today was a more stable day for Jonathan. He is down on his breastmilk feeds - to 12cc/hour from 15cc/hour - and sleeping much better. Hopefully they will allow his stomach to rest and recover over the weekend. A new nurse came on the scene yesterday, Theresa Allen, an ostomy expert (she works on skin growth). She devised a new dressing for Jonathan. The previous dressing, basically coating the omphalocele with flamazine and moist gauze, has done a good job of keeping the O moist, and helping skin to granulate since birth. Now, they need it to be slightly less wet, to help the skin grow faster (I pretend I understand. I don't). The benefit of this dressing is that it's possible that it will only have to be changed once a day, instead of twice. This would be wonderful for Jonathan, as it is not a comfortable procedure.If you haven't seen Jonathan lately, he is very cute. He has fuzzy sweet hair, piercing dark eyes, and is so tolerant, it's remarkable. He puts up with so much, and rarely cries. So when he does, we pay attention. He's got very strong legs that kick and push when we try and change his dressing. I think he has Janis' soccer legs! Good, because this NICU thing is a marathon. He makes sweet sucking and pouty faces. Nurse Kelly calls him "birdy purdy" because he's so little and has an impish perfectly formed face and head. We'll get some new pics on the website soon. DECEMBER 7, 2006 - Stable Again? It's 10:30 PM and after another long and hectic day, Jonathan seems to be stable, more comfortable and able to sleep better. No obstructions showed on the final test results. His feeds have been resumed but he is still quite fragile in the digestion and motility areas and he is retaining too much fluid and gas. He is down to 10cc (the team had another false start today) and will remain there overnight. God willing, he'll have an uneventful night and they can reassess tomorrow. Lots of things went on today, lots of decisions, consults, explorations and new directions (O dressing might totally change as of tomorrow). I'm very tired and feeling a bit worn out. Diane woke up this morning with a throat and eye infection (actually pink eye in both eyes) so she's barred from NICU for a while and I'm on my own. Which is not good as she is much better at dealing with the dozens of different medical personnel that we must interact with each day (not all interactions being pleasant). She said she feels like a loser, but Victoria told her that if she had pink eye, a cold sore and a zit on her nose THEN she'd be a loser :) Today I had a lovely visit from my midwife Joyce who gave me great advice about taking life one step at a time. I thought to myself, one day as Jonathan plays in the park in the sunshine with his older brother and we sit on a bench watching them (because we are too old and tired to keep up) this whole NICU experience will be a distant memory. DECEMBER 6, 2006 - The Next Day Jonathan was rested overnight (as much as they let him in NICU - I swear they are always at him with one thing or another!) and this morning the surgeons consulted. They were not convinced the vomiting had to do with a feeding intolerance, and they were concerned about the "bilious return" in his suction tube and so they ordered an Upper G.I. test to be done on him today. They were afraid that perhaps he had abdominal blockages. That would be really, really serious. We were on pins and needles all day. Also, they couldn't resume feeds or figure out a next-step plan of care until they knew about the blockages. At this point - 7:30 PM - we have finally been told that preliminary test results showed no evidence of obstructions. Sigh.....and take a deep breath. If he remains stable, which I really hope he will, my big question is feeds. His (slight) weight gain had already trailed off this week and now he's losing weight which he really can't afford. After three weeks he has still not reached his birth weight (6.2 lbs). We'll report back as soon as we know what's next. In the mean time, thanks for all your prayers, hopes, chants and good wishes. DECEMBER 5, 2006 - Bad Day I feel like we've lost our NICU naivete, and I didn't even realize that we were naive. We have gone from "stable" to "crisis" in one day. They began fortification at 1:00 in the afternoon (3300 up from 2800), and it seemed to be going okay. Then he had an O dressing change at 3:00ish, then he had his PICC line dressing changed, then the nurse gave him his meds through his NG tube, and flushed the line with quite a bit of water - after which he suddenly started screaming and crying in pain (around 5:30ish). And when a heart baby cries, their blood oxygen level can drop and they can get tachypneic. Then he started throwing up, everything. He did it about 6 or 7 times over a two hour period. Each time he threw up, he turned white, ghostly, almost grey - and his fingers were cold. It was very scary. Then they had to stick his heel to get blood to make sure he wasn't septic (suffering from an infection). Finally they did a chest and abdominal Xray to find out if his NG tube was placed correctly and how his stomach looked. Turned out his stomach and part of his intestine was distended (filled with gas and/or fluid). So the nurse had to replace his NG tube - never a nice procedure - with a thicker one that drained the gas and mucus and partially digested milk. It really came gushing out at first. His stomach is still being suctioned to get everything out. The blood work showed no infection, so that's good news but he seems to have had an intolerance to the fortified breastmilk (or the high level of fortification) . It's now 11:00 pm and Janis is still at the hospital waiting for him to be stable and get to sleep. They have stopped all feeds, are leaving him with nothing in his stomach all night - with only sustaining IV- and they will reassess in the morning. We knew he might hit his limits but I think they went up too far, too fast and he has had to pay a terrible price. Poor Jonathan. We may have to go backwards now. We are all quite exhausted but will post more when we have news. DECEMBER 4, 2006 - Day 21 Janis was an amazing advocate for Jonathan today. Janis' big long-term concern is that he not lose the instinct to take in food orally. For this reason, we've been dipping a soother in breastmilk, and letting him take it. There has been no negative reaction - so he is tolerating that little bit of milk orally. The dietician, Laura, said that Janis could start doing what they call "non nutrative sucking" with him tonight! That means, letting him learn to breastfeed but not actually take in any milk orally - just get used to the idea of sucking. So maybe this is a first step.On other feeds news, he's been stable at 15cc's of breastmilk continuous, through his NG tube for four days. They were going to leave him there for another few days. Then the surgeons decided that they would fortify his breastmilk, and take him off the IV- lipids totally. They are going to start that tomorrow. We have our fingers crossed that he'll tolerate the fortified breastmilk (more concentrated nutrients, more calories, more growth) and not have any negative reactions: respiratory problems, gas, or trouble with his tummy or bowels. If he does have a negative reaction, we go back to the breastmilk.The goal in all this is to have him grow, and thrive. BTOB!On another note, yesterday I noticed that our favourite nurse resembles Hot Lips Hoolanan. And I overheard a long, and I mean LONG conversation between three nurses about manicures, pedicures, and facials. I learned a lot. DECEMBER 1, 2006 - Day 18 Today is a cold, wet, whipping windy day here in Toronto. Not inviting to go outside. Fortunately we spend most of our time staring out the NICU window, separated from the weather, barely remembering what day it is.Things are stable with Jonathan today and that is good news. His resp rate is down and the tachypnea is better. It seems to happen regularly after dressing changes and other difficult procedures which is why we try to be there to hold him afterwards and give what comfort we can. It's hard to see him have to endure that every day twice a day. They had to change his picc line dressing twice yesterday - again a painful procedure - which is too much in my mind. Feeds are staying stable at 15 and everyone is pleased with his progress in that area. His general surgeon even cracked a smile (!). We are now in a holding pattern until the end of the weekend at least. We're okay with that as we also want to give him a break. I hope no more changes means no more problems. The next goal is to get his caloric intake up - he has to gain weight and get bigger - but hopefully he can have a bit of peace for a few days.Yesterday I had to deal with E.I. to get my sickness benefits extended. Had a real robot at the beginning who kept just repeating that I wasn't eligible. Wouldn't hear my circumstances or read my medical letters. We were just arguing back and forth. Finally I asked to speak with someone else. I was braced for a fight but when I told my story to the woman I got transfered to (an older sympathetic woman with more seniority) the first thing she said was, "Aww, honey, I'm so sorry about your baby". Well, didn't that just melt me into a puddle of tears in the middle of the busy downtown E.I. office. It's clear I am not ready to be functioning in the outside world... :)On another note, we are slowly building up a small care team for Jonathan. One of the major difficulties with having a baby in NICU - aside from the obvious medical crisis - is that we are separated from him more than we'd like. We have Eli at home who also needs to be taken care of so even though we are in hospital most days and evenings we just can't be here enough. If Jonathan was home with us he would be in my/our arms interacting or sleeping most of the time. He has already had so much intrusive or painful touch in his short life. We don't want him to become touch-averse. For every painful touch we want to make sure he is getting lots of loving and tender touches. Also, he needs stimulation. He is awake longer and becoming more aware of his environment and he needs nice faces to look into and to interact with. The nurses are truly wonderful at NICU but they are working very hard and caring for more than our baby. Luckily we have grandparents and a few others who have agreed to help us as we try to give Jonathan as much loving/developmental care as possible while he remains in hospital. NOVEMBER 28, 2006 - Day 15 Lasix - Quick note to just say that the teams all agreed to try Jonathan on daily doses of Lasix to clear any fluid from his lungs and make breathing easier. Also, they are going to restart increasing his feeds. That's good news. Cardiology came by, though, to say that the respiratory issue is a heart one, and may mean heart surgery has to come at 3 months instead of six. So the priority from their point of view is Jonathan growing and gaining weight. Three steps forward. One back....Diane NOVEMBER 27, 2006 - Day 14 Frustration - It was a frustrating day in NICU. Jonathan's respiration had appeared to Janis and I to have dropped, down to 30's and 40's sometimes (which is well within the normal range of 20-60) although still spiking up as high as 110 sometimes which is very concerning. To see him lower was wonderful. But they were still concerned with the frequent spikes so they froze his feeds, and have decided to give him a regular diarhetic to clear his lungs. We were concerned that one team has one idea (cardiology) and surgery has another and the neo-natologists have another and so do the nurses, and we are truly the only consistent people in there (shifts change, doctors leave etc). So, we have to consult tomorrow and try and get to the bottom of their strategy and see how decisions are made. Sometimes someone will just casually say, "oh and he's on blahblahplax for his motility". Huh? He's pooping, what's up? Who's decision? Please send us your patience as we navigate this new world, and then advocate like hell for the best thing for our baby, for Jonathan.Truthfully, he is coping REALLY well for a baby with his issues. Up to 11cc's of breastmilk every hour already. For him, he could hold at 15cc's for a while - that would be considered full dose of milk, and he wouldn't have to be on any artificial feeding. So, we feel like he's such a BTOB already. Janis and I are thinking of getting t-shirts made that say "Beware...RIP (Really Involved Parent)". Hey, if anyone could get a deal, and a brilliant marketing strategy with a kick-back going to Sick Kids, maybe we could support our time here heehee. NOVEMBER 26, 2006 - Day 13 Well, like they said, a few steps forward and one step back. Soon after his feeds were increased, Jonathan began really struggling with his breathing. They call it tachypnea (or "he's been tachypneic") which means an increase in the rate (and effort) of respiration. It's a bit frightening as a parent to see your newborn this way, like having an asthma attack. It's either his heart or an intolerance to the feeds or both. So, we're back on Lasix - a kind of diuretic - four doses over 2 days ending last night. They will re-evaluate today (probably with an x-ray of his lungs). If that works then we know it's the heart and he may need to be on consistent medication. If it doesn't work then they may need to back off on the increase feeds (he is now up to 10cc per hour). He is on Renitidine (an anti-reflux drug) combined with (as of yesterday) Maxaran to assist with motility. Yesterday during the dressing one of the general surgeons came and cut off what remained of the umbilical cord. He said the granulation of the skin over the omphalocele is looking very good.Jonathan still sleeps a lot but he opens his eyes more and is much more alert and looking around when he is awake. We set up a mobile to give him something to look at if we aren't there (thanks James). The omphalocele causes him obvious discomfort (his spine is literally pulled up by the pressure) and he does cry at times during dressing changes or other interventions, but overall he is a very calm and brave little baby. He is my hero these days. NOVEMBER 24, 2006 - Day 10 Jonathan did really well today. He is such a fighter! His (breastmilk NG) feeds have been going so well that they've decided to up his intake 1cc every 12 hours (as opposed to every 24 hrs). That means he will be at 7 tomorrow. We need to get to 17 before they will even consider bosil feeding, so we have a way to go, but I am happy we are moving in the right direction. His omphalocele is granulating too slowly for my liking but looking good according to all the surgery and neo-natal team reports. Diane and I are assisting with each afternoon dressing. Today he was so brave during his dressing change. He has moved out of his warming bed (which was basically a step up from an isolete) into a kind of crib because they are confident in his ability to self regulate his own temperature. Although he has to work very hard to breathe - it's a bit like running a marathon all the time - he is resting well (especially, I like to think, when the nurses lift him into our arms). At times his respiratory rate gets up too high and he can have minor "tet spells" which are concerning but he has only had to have medication for his heart (Lasix) twice since birth. I am so proud of him! I think all the prayers and good wishes and positive energy people are sending his way must be working. P.S. Kelly Roddy has agreed to be our first core nurse (we're not sure who will be our second). That is great news. NOVEMBER 22, 2006 - DAY 8 Message from Diane This is Jonathan's second week in Sick Kids NICU. He is indeed beautiful and we are in love. We are trying to keep our heads above water and enjoy every small blessing as it comes. I wouldn't wish this on anyone - the NICU part - but it is amazing what you can adapt to. The time without him is the most difficult, but we know he's truly in the best place for his conditions. They told us that it would be five steps forward, one step back and it's true. Although we're finding it difficult to find the time and energy to even shower (trust me, I'm hoping Jonathan's sense of smell is still developing..) much less return phone calls, we can't tell you how much we appreciate your email wishes. There's a computer at the hospital that we can check every now and then. Even if we can't reply, we cherish the messages you've sent to us, Eli, or Jonathan. Much Love, Diane NOVEMBER
19, 2006 - DAY 5 Eight Things I've learned: 1. The Mt Sinai high Risk OB and neo-natal teams are amazing. Dr. Ryan, Dr. Maxwell and all the many people who took care of Jonathan during the pregnancy, brought him into this world and stabilized him afterwards are unbelievably skilled professionals.2. Labour contractions really hurt and a c-section is one of the most surreal things I've ever been through - especially the part where you're lying in the Christ pose, unable to move, with lots of people and frenetic activity going on all around (and inside) you.3. Meeting Jonathan and falling in love with him has been the most beautiful, heart-aching journey. He is gorgeous and fragile and yet really strong. He is fighting every day and enduring too much for any little one, while also making us smile and proud (and beating the odds already). You go BTOB!4. Being away from Eli so much is hard on our hearts but we are so very proud of him and the way he is handling all the recent disruption and change. He is a wonderful and loving big brother.5. Post-partum hormones, combined with sleep deprivation combined with having a baby in NICU can make you crazy. My apologies to everyone past, present and future.6. The cardiac and general surgery teams at Sick Kids are attentive, brilliant and world class. But never play poker with a surgeon - you will lose.7. Sick Kids NICU nurses should be paid the salary of top sports figures. I have found them to be skilled, tireless and so dedicated to our little angels.8. The love and support from family and friends over the last week has literally made Diane and I weep. Thank you all so much. Though we may be out of touch (some days we are struggling just to stay above water) we are thinking of you and are very appreciative (and very happy not to have to cook :). NOVEMBER
15, 2006 - Week 37 - OUR BABY IS HERE!
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