Teddy survived not only his first major surgery at 16 hours old, but also his first night. At that moment we felt like we won the lottery. For a week we had been told to prepare for a funeral, but there he was fighting and proving them all wrong. As soon as we would celebrate a massive milestone, the next wave of bad news would hit. It truly was a rollercoaster of emotion and information that was making us dizzy and confused. We never could seem to fully catch our breath those first few days and weeks. When Teddy was born, it was clear that he had birth defects just by sight, but when they started running tests and doing assessments it became more apparent with each passing day how many and how significant they were.
In those first few moments after Teddy’s birth, the doctors quickly assessed that Teddy would need a breathing tube to survive. With this assessment, they noticed that Teddy’s esophagus and airway looked different and realized that he had something called Tracheoesophageal Fistula and Esophageal Atresia. What this meant was that Teddy’s esophagus had not formed correctly during development and his mouth was not connected to his stomach. Essentially, the top portion of his esophagus was a pouch that ended in his upper throat and the bottom portion of his esophagus and connected to his airway instead. This meant that he was not able to eat by mouth and that when he breathed air would go into his stomach or stomach acids could reflux back into his airway. If he did not receive immediate surgery to correct the fistula and receive a feeding tube, he would not survive.
Imagine after a week of hearing your child would likely not survive birth or the first few days, in a haze of magnesium, stress, and fear, being told all of these technical medical terms. Being told that your 2lb 15oz baby needed major thoracic surgery urgently that would cause him great pain and a difficult recovery, that he may not even survive. Being told the decision was up to you, while still being told he likely would not survive, even if he did somehow survive the surgery. Having some doctors pushing to do the surgery and other doctors urging us to think about what time we had left with him. Our heads were spinning. It wasn’t until that Resident sat down with us one-on-one and honestly told us she thought he COULD and WOULD survive, that we could finally see straight. She was the only person that gave us her honest opinion, rather than the “likelihood” or “on paper” explanations. And while I know 100% that Teddy would have shown us shortly after that conversation that he was going to survive and the doctors were wrong, her honest and clear conversation allowed us to make that huge decision quicker and with more certainty than if we had waited. We made the choice and spent as much time as we could next to his bedside, telling him how much we loved him and how much of a fighter he was. That he would survive this and that we would get through it together. Watching him be wheeled away into surgery was excruciating and something we would become all too familiar with in the coming months. We went into that first surgery with fear that is impossible to describe, but also with a relief and hope, knowing it would allow him to survive.
And Teddy did survive! He went into surgery fighting and to the best of my memory it went fairly smoothly. We are so incredibly grateful for the neonatal surgeon, whose incredible skill was able to save our tiny baby’s life. Once the decision was made for surgery, the surgeon was exceptionally confident, maybe even a little cocky, that the surgery would be successful. And while he gave us all the risks, he never once faltered from his belief he would be able to do it without an issue. And while a surgeon’s cockiness often can create issues with relationships between parents and hospital staff, in that moment we were so thankful for his sureness and self-purporated steady hands. He did in fact save Teddy’s life and for that we fully give him permission to tighten that self-confidence belt a little bit tighter. We will never forget him and will forever be grateful.
While the doctors may have been wrong about Teddy’s chance at survival, one thing they did have right was that the surgery would cause great pain and a very difficult recovery for Teddy’s tiny little already struggling body. Those first few days after surgery were constant ups and downs of big medical milestones and massive scary setbacks. The doctors and nurses walked on eggshells and you could tell we were all holding our breaths. We focused on every sound of his heartbeat coming through the monitors. Every alarm caused us to panic, even if they were just because the sensors had fallen off his tiny body. We weren’t allowed to hold him and could only lightly touch him with gentle consistent pressure, as his skin was very sensitive and it would cause distress if stroked. We tried to participate in his cares, like changing his diaper or cleaning his face, as much as we were allowed, so we could feel like we were taking care of our baby, rather than just being onlookers. We spent as much time by his side as we could. Those NICU doctors and nurses were absolutely amazing and kept our sweet boy alive. They could see just how much he wanted to be there, how hard he was fighting, and how strong he was, and they all immediately fell in love with him and became an integral part of his story. What amazed everyone was just how alert he was, through it all. His eyes were wide open so much of the time. More than many newborns, especially more than preemies who were fighting for their lives. You could tell how amazed he was with the world around him and wanting to take in everything he could. He would look you square in the eyes when you were talking. He was showing us he was there, he was present, and he was going to fight!
As I have mentioned in a previous post, I am typically able to keep my emotions locked down. I truly don’t cry often, but when the floodgates do open, I have a full meltdown. So, for me, I am the type of person that stays focused on the mission at hand and tries not to get weighed down by emotions. My focus was on making sure Teddy knew I was there with him, being just as strong as he was, making sure we all got through this together. For Teddy’s entire first 6 months in the hospital, I can think of only 5 times that I truly lost it. I may have been teary eyed, but truly losing it was rare. Two of those times were in the first week of Teddy’s life. Shortly after Teddy’s surgery, I had been forced back to my hospital room to rest and Jason was with Teddy. Jason called me in a panic and said Teddy was struggling to breath and the NICU team had surrounded him and told Jason he had to go to the waiting room. I jumped out of bed in a panic and rushed as fast as I could between the two hospitals to get to the NICU. When I walked in and saw Jason, I immediately started balling and saying I should have been there. I was terrified that Teddy wouldn’t survive and I wasn’t there. I sat in the waiting room wearing a hospital gown, in a full meltdown until the doctors came out and told us they were able to stabilize him. It was the first of many scares, but Teddy never stopped fighting and showing the doctors what he was made of.
For the first 3 days, while I tried to go to the NICU as often as I could, I was still being held on bed rest because my blood pressure was still high. At one point the doctor told me that she would lock me in my room if I did not stop and rest. I looked her straight in the eyes and asked her if she had tested Jason’s blood pressure. I am sure it was as high as mine was. What did they expect my blood pressure to be, when I all I had heard from the moment of conception was bad news. She had lived the last week with us too, so she knew the amount of stress we were under. She eventually agreed to put me on medication and release me from the hospital on day 4, with strict orders to rest and come in regularly to have my blood pressure tested. While excited as I was to be free to be at Teddy’s bedside, it also meant I was no longer close by and could not visit in the middle of the night. While we could visit and call as much as we wanted, we were not allowed to spend the night in the NICU, which meant I would now be 20-30 mins away from him. What if something happened and I could not get back in time? That first drive home from the hospital on my own, was the second time I completely lost it and had a full on 10-minute meltdown in my car sitting in my driveway for the first time since his birth.
As he stabilized though, new diagnoses emerged each day that needed immediate attention. Some they knew the cause of, some that were side effects, and others that they could not figure out, but scrambled to find the right treatments for. The immediate most pressing one was his significantly increasing level of jaundice. At birth, Teddy’s skin was a dark red/blue/yellow color. Blood test showed that he had very high levels of bilirubin and indicated he had both physiological and pathological jaundice, which meant his liver was not fully functioning and was unable to process the bilirubin out of his red blood cells. While this is not an uncommon issue, especially in preemies, Teddy’s levels were a cause for concern because the bilirubin can cause brain damage. Once stable, they immediately put him under phototherapy (blue light) treatment and began him on medication. As scary as that was, I have to admit, he looked adorable in his little sunglasses. Unfortunately, the phototherapy was not working as quickly as they hoped, so eventually they ended up having to do his first of many blood transfusions to help get it under control. Thankfully, the transfusion helped, and his bilirubin began to reduce.
After the first few scary days, everyone was able to take a few deep breaths. Our amazing parents, who had been there since we were admitted to the hospital and helping us so much (we could not have done it without them), were able to spend time with him as well. The days started to have more good than bad, and we all started to feel like we had been blessed and to breathe a little easier. The fear was still there, but as each day passed you could see the light brighten in everyone’s faces as they got to see and be with Teddy. We got to be parents and they got to be grandparents. It was an amazing thing to feel and experience, even if it was from a bedside, instead of being able to hold and snuggle him.
Around day 3, the talk of Trisomy-13 stopped. After his birth they were able to do a blood test and the results finally came back negative. This provided a huge relief, but it also meant we didn’t know why he had these birth defects and each day and test seemed to find a new one. In all honesty, it took years to identify all of his medical differences and we still occasionally learn a new thing that wasn’t diagnosed before. I will do separate posts to discuss each of his unique medical diagnoses, but there will also be a few things that we do not discuss. These are things that are private to him and we will give him the opportunity to discuss those things when he is older, if he so chooses. Yes, we are making the decision to discuss his life, to provide education on rare conditions, but we do also want to protect his privacy regarding things that are not immediately seen or observed when meeting him in person. So, we will do our best to educate and explain, but we also encourage you to do research and share, because the more these rarer diagnoses are discussed the more future parents who face these challenges will be informed.
At the end of the first 5 days, we felt ready enough to share with the world that Teddy had made his grand entrance. We kept it short and simple in a Facebook post but wanted to shout from the rooftops that Teddy beat the odds!!! He proved everyone wrong and continued to show he was ready to take the world by storm!
