Teddy was stable and it was amazing. The next few weeks were focused on keeping him stable and continuing to find all the underlying medical anomalies and confirm diagnoses. What this meant for us was that just like every new parent with a newborn, we were able to start developing a routine, just one that involved countless doctors, nurses, and therapists. We would wake up early and get to the NICU for rounds and then stay as long as we could by his bedside, doing what cares we were allowed, pumping every few hours, and then leave when they kicked us out at night. At night we would call multiple times for updates, get a few hours sleep, and start the whole process over again. The stronger he got, the more the nurses would allow us to do, and it was a wonderful feeling to be able to take care of our baby. While we were both scared we would hurt him or do something wrong, we were both also standing right next to the nurses forcing ourselves into the equation. I think some of the nurses weren’t quite sure what to do with us at first, but our “advanced maternal age” experiences and type A personalities just couldn’t sit back and watch.
A few weeks after his birth, we got the great news that Teddy was getting a private room! This meant no more loud (and sometimes scary) NICU bays to stay in. It also meant we could spend even more time with him, because they couldn’t kick us out as much! We held him as much as we could and celebrated all the milestones. We changed diapers and dressings and gave him sponge baths (which he hated!). When he finally got to wear clothes, I searched high and low for all the preemie clothes I could find, even though they were still way too big. We monitored vitals and (possibly) learned how to hack the monitors to silence unnecessary alarms and annoying continuous beeps. We learned how to do breathing treatments and change out feeding tubes. How to give medicine and set up his feeding pump. I pumped breast milk every few hours, so he could benefit from it, and we fortified it with a high calorie formula so he would start to gain weight. We learned how to manage and change his suction tubes. We learned CPR and how to identify distress. We watched, listened, asked questions, and learned. We participated in as much as we could and made sure he knew we were always there.
Teddy’s lungs continued to get stronger and his oxygen needs slowly decreased. He was so alert and was taking everything in. There also started to be a competition over who got to be Teddy’s “girlfriend” between the nurses and therapist. And while I think he definitely loved them all, he would have considered his OT MIchelle his first girlfriend! (Sorry Melanie and Nicole!) Even at a few weeks old, when she would walk by the room and say “Hi, boyfriend,” he would immediately look in her direction. It was the cutest thing and we were so lucky to have such an amazing nursing and therapy team. They not only took care of Teddy and made sure he thrived, but they also took care of us. They were our therapists, our shoulders to cry on, on cheerleaders, and teachers. I truly believe we would not be the parents we are today, without the team at our local hospital. While our Boston nurses and therapists were amazing, by the time we got to them we were mostly “pros” at this special needs parenting thing (which they definitely didn’t know what to do with! hahah), but our local NICU team were the ones that gave us the confidence and support to believe that we COULD do it and that we were MEANT to do it. Even when we said we couldn’t do it, their confidence in us never wavered, which forced us to be confident in ourselves. We are so grateful to them and always will be.
By the time he turned 1 month old, Teddy was blowing everyone away with how well he was doing. His oxygen needs were getting lower and lower, which was helping him to finally start gaining some weight. He weighed in at 3lbs 10 oz and had grown an inch! We had started to get a better sense of all that was going on in his tiny little body. His genetic testing was negative, so they officially diagnosed him with VaCTERL Association. I will do a separate post to go into further detail about this diagnosis, but ultimately each letter stands for a different birth anomaly and if a child has 3 or more of the letters, with no underlying genetic cause, then they are diagnosed as VACTERL. When writing a child’s diagnosis, you capitalize each letter that they are diagnosed with. So, for Teddy, he is diagnosed with all letters except “A” (anal atresia), which we write as lower case. He has multiple issues with his spine (V) including scoliosis, hemivertebrae, and Caudal Regression Syndrome. He was diagnosed with congenital heart defects (C), including multiple holes as well as other issues. Teddy had tracheoesophageal fistula/esophageal atresia (TE), which meant his esophagus wasn’t connected and the lower portion was connected to his airway. He was diagnosed with a renal atresia (R), which meant he was born with only one kidney. Lastly, he had anomalies with his limbs (L), including a club foot and asymmetric growth.
There was a ton of information thrown at us. It felt like the diagnosis list never stopped growing. Everytime we would think “that has to be all,” they would come in to discuss something else. The doctors told us that for Teddy, thankfully, none of these diagnoses were life threatening and could either be lived with or surgically repaired. That was amazing news!!! But the heartache and fear began when the discussions on surgical needs and quality of life began. This can be the hardest part of the special needs parenting journey for a lot of parents to overcome, the discussion of what the future will potentially be and the realization that all of your dreams for your child will not come true. I think as parents we all start imagining this beautiful life when we first find out we are pregnant/adopting a baby or can see the future in real life before a surprise diagnosis is given or an accident happens. We begin imagining all the things they will do or the places we’ll go. I know I felt that way as soon as we found out we were adopting our daughter, who was not suspected of having any medical challenges. I dreamed of her taking dance classes, taking her to the playground, and of the type of sister she would be to Teddy. But with Teddy, I honestly can’t remember ever having those thoughts or dreams. Maybe because our pregnancy was so difficult from the start, that I just never let my mind go there. I just stayed focused on getting through the pregnancy one day at a time. Then we thought he may not even survive birth, so we just never really had time to imagine those beautiful things. Thinking back on it now, I am so glad that we never did, because when those hard conversations started to come about what things could mean for Teddy’s future, as scary and confusing as it was, I never truly was heartbroken for him, because I had never imagined his future. Instead, I was able to begin imagining exactly what his future would be rather than what his future wasn’t going to be. Teddy got to write his own story from scratch, and we were most certainly along for the bumpy ride.
