We spent a week at Children's Hospital in Boston. Fortunately Samuel was stable and appeared to be doing well considering his heart was sick. The doctors had suspected that his heart problems stemmed from something genetic but it would be a few weeks before we had the results. After no alarms the entire week at Children's the doctors felt comfortable transporting Samuel to Fletcher Allen so that we could be closer to home.
Samuel was taken by ambulance from Boston to Northern Vermont...probably the second hardest moment of my life. I can't explain what it's like to have a baby that you know is going to be sick and then you spend every minute of his first week with him...because you love him and because your scared he might not survive and then the EMT's come to pick him up for a 4 and 1/2 hour drive that you don't get to be with him. I remember I told them to take care of my baby and that I would be right behind them. I cried almost the entire ride....I called my sister Lynn who had to make the same trip (in the opposite direction) just a couple of months earlier with her newborn (only her little peanut was airlifted) and I couldn't even talk to her but she knew how I felt in that moment and I just needed her to tell me it was ok to cry the entire way!
We made it to Fletcher Allen where he was admitted to the NICU and for the first time in a week I wasn't allowed to spend the night with my baby. There is no room at the hospital and so I went to the Ronald McDonald House down the street. I was pretty devastated but as I look back that was probably the first night I slept any amount of time since Samuel was born. Anyone who has slept in a hospital knows that you don't sleep. There are so many machines, alarms, nurses, doctors, and of course feedings and changings!
After a couple of days in Burlington I started to recognize some of the other parents. They were also staying at the Ronald McDonald house. Finally we started chatting and sharing our stories. These people helped me stay strong and get through some rough times! Cindy and her mom Judy were there for Cindy's twins, Caitlyn and Rachel, born at 29 weeks. They were born the day after Samuel! I spent every moment I had with my little Samuel. I bathed him, changed him, fed him, read to him (I was reading a book called The Brothers Bulger about some mafia people!) I haven't finished that book...actually haven't touched it since we left the hospital. It was a great book but some things just trigger certain memories that I have put in a certain file and don't want to look into for a while. That book is one of them.
My days became a blur and I didn't really know what day it was one day till the next. What I did know was how much Sammie weighed, what he took in for the day, how much output he had for the day, what his temperature was, what his blood pressure level was, what his heart rate was, what his O2 level was, who his doctors and nurses were, what medications he was taking, what medications they were thinking about trying, what his bilirubin level was, what was for lunch in the cafeteria, when Steve and Darby were going to come for their next visit, you know all those things that I had never thought about before.
I arrived bright and early one morning and when I rounded Sammie's incubator I noticed a tube in his nose. Right before I could panic the nurse said "it's only and NG tube". A what??? A Nasogastric tube, inserted into the nose, past the throat and down into his tummy. But why? During the night hours they had decided that his heart was too weak to eat all he should be eating by mouth. Eating for a baby is much like a work out. The "typical" child can easily suck down a bottle in about 10 minutes. My poor little peanut was taking about 30 minutes and still not finishing his meal. This was a lot of pressure on his tiny, already stressed out heart. So the tube was put in to help him gain weight without working him to hard. They also started putting a nasal cannula on him when he was eating because they thought his O2 level was going down some while he ate.
That's when the feeding team started visiting. Learning to eat is a huge process for some little babies! Suck, swallow, breath..suck, swallow, breath....K Shannon, now you breath. Every time I fed Sammie I would watch closely to make sure that he would suck, swallow, then breath. Some babies forget to breath and they have to be taught how to do so. Sammie didn't have a "huge" problem with this but problem enough that we payed close attention every time we fed him.
During all of this we still didn't know why his heart was so sick. He seemed to be plugging along and he was stable but there were no answers. I don't think the doctors thought he would make it very long and every one that came to visit thought he looked sick...for some reason I thought he looked fine. I mean all the babies in the NICU are so small and frail looking. I hadn't been staring at any "healthy" kids! Finally one night a group of doctors came into the NICU and I could see them whispering and looking in my direction. I thought "there is news of some sort". We had briefly discussed what goes into getting a child on the transplant list and I thought for sure that they were going to tell me that they wanted to start that process. So I sort a prepared myself for that conversation.
One of the docs came over and asked where Steve was (my husband at the time). I said he was home and he would be back on Friday. I think it was Wednesday... she said she had received the genetic testing results from the amnio done in Boston and wanted to discuss them, but she thought she should wait till Friday when Steve would be there. I said absolutely not...if you have new information then I want it now. So the Geneticist, the Resident, and the Intern brought down the one of the Ronald McDonald rooms on the pediatric floor to tell me what was wrong with my baby. Dr. Burke said "he has 1p36 Deletion Syndrome"....I was like ok, uh what the hell is that? She proceeded to tell me what she knew about it and had some information with her that she had printed off the Internet. She went into some of the medical issues that 1p36 caused and his heart issues were secondary to the syndrome.....wait, wait, wait ok so his heart problems are because of the syndrome..so some information is missing and so what's the prognosis? Is he going to live? I didn't care about the rest of the stuff she was telling me. I just wanted her to tell me that my little Sammie was going to live. The Geneticist told me that she couldn't tell me if he was going to live or not. He was weak and sick. She told me the Cardiologist was still really concerned about his heart.
Then I asked who else has this? Can I meet another family and see what they're going through? Can you contact someone? She said that Samuel was her only patient. There was no one else. WOW...at this point I'm just flooded with emotions and just crying, in a small room, with people I don't know. I knew my husband wasn't home because he had to go to Darby's chorus concert so I called my sister Lynn. I told her everything the doctor told me...there was no cure, no way to fix this problem. My little baby was going to be sick forever. Of course my perspective has since changed but in that moment that's what I thought.
Once there was a diagnosis there was really no need to stay at the hospital anymore. So they started planning his discharge. Making sure we could get all of his compounds and other medications at a local drug store. Here in Plattsburgh there is only one pharmacy that makes compounds. Setting up an appointment with his pediatrician, who hadn't even met him, as soon as we got back to Plattsburgh, setting up appointments for a VNA and early intervention..mind you I had no idea what either of those things were. All I knew was there were going to be a lot of people coming to my house. Samuel was sent home with an NG tube so they taught Steve and I how to replace that because they can slide out easily. I remember them telling us we could take him to the ER and just let them know we needed them to replace it if we were not comfortable doing it ourselves. If you miss and put the tube into the baby's lungs instead of his belly and send all that liquid straight to his lungs that becomes a major medical problem. Somehow though we managed. I would hold Samuel down and cry with him as Steve slowly inserted the tube through his nose, down his throat, into his belly.
It was all overwhelming but then we finally walked through our back door and relief set in for me. I hadn't been home in over a month. It was quiet..it was sort of unfamiliar. But I was happy to be there.
