Jay had his aortic switch surgery at 6 days old. It was a Monday morning, and I remember every very uncomfortable minute of the day. It was absolutely the longest day of my life. I hadn't slept in a week and I had to hand over my 6 day old newborn again for him to be re-intubated and a bone saw taken to his sternum. Multiple members of the surgery team walked us through Jay's surgery the previous Thursday and Friday. Over the weekend we were so ready for Monday to come. We were fixated on surgery, going through the details a million times. Finally, it was here, and suddenly, all my other "bad" Monday mornings were nothing in comparison to this one.
Kyle and I were up most of the night, holding Jay as much as we could, just enjoying the peace and quiet for once. He was stable, he was hooked up to very little, and he was so peaceful. Kyle and I were up for the day around 5:30 because the surgeon was supposed to come in before his surgery at 7. Jay had to have a quick wipe down with chlorahexadine wipes one last time before going to the OR. After that we just wrapped him up in a blanket and held him until they had to take him away. We had a little music box that we placed in his isolette that we were using to help him sleep. We were sitting there holding him when You'll Be In My Heart from Tarzan started playing. Luckily this box played only the classical versions with no words. I was already emotional for very obvious reasons but I'll never be able to listen to that song again. I just wanted to freeze time and remember how he looked and how sweet he was just in case the worst happened. I have sent patients to the OR before for multiple surgeries and procedures and I've been the patient myself. But there was something about sleep deprivation, a fresh batch of post-partum hormones, and knowing a bone saw was going to forever mark my little baby's chest that had me suddenly very aware of my fears. I couldn't stop thinking about worst case scenarios, all of the potential complications, and I couldn't wait to ask what the chances were that he would end up on ECMO. I needed to know. I've seen many people come out of the OR hooked up to a million tubes and lines. I've seen babies come out of the OR in the same shape that Jay would come out in. But I knew my husband, Kyle, had no idea, and he didn't want to know, so I needed to be prepared for everything for the both of us. I will say, reading other mom's blogs, knowing another baby who had this surgery, reading their stories and seeing their photos helped a lot. I will include one of Jay immediately post-op in this post but please, be warned, it isn't easy to see. He hardly looked like my baby.
We did consent with the nurse practitioners and the surgeon came to see us while they were prepping Jay getting him sedated and IVs started. We walked as far to the OR with him as they would let us, and said goodbye to him in the hallway with his nurses. It was absolutely heartbreaking watching Kyle just break down and cry with worry. His surgeon came to see us shortly after we said our goodbyes. We were assured that the chances of ECMO were there but slim. They walked us through the procedure and asked if we had questions. They went through the statistics and mortality rates, which, after you already handed your infant over, is hard to listen to. They were small, we were obviously aware this was a possibility, but hearing it again when he was already back there was terrifying. We had to sit in the PICU waiting room all day. We were told a nurse would come update us every couple of hours, they also had a really great app for our phones that OR staff was able to text us updates from. It was actually very assuring knowing roughly how long to expect before the next update based on what had already been done. Getting him prepped, all his lines in, intubated, sternum opened, and on bypass alone took close to two hours. I forced myself to eat because I knew I would end up more nauseous than I already was if I didn't eat. My milk was in and pumping to bank him breast milk was the only motherly thing I felt like I could do for him which gave me some more motivation for eating and drinking.
I tried so hard to sleep to pass time but of course there was no way I could. Luckily one of my sweet best friends is a PICU nurse there and she worked that day. She came and kept us company over her lunch break. This all took place during COVID. We were luckily in a time of COVID that both parents could be at the hospital at the same time- during some of COVID only one parent was allowed in. It was actually a relief to not have to share that experience with family. I feed off other people's energy, and more worry and anxiety in the waiting room with us would've made me worse. I also was relieved to always be able to process any news or updates alone, and not have to share what little holding time we did have.
We were asked if we wanted to participate in a research study over the weekend. While we were in the waiting room a research nurse came to go over all the details to ask if we wanted to participate and sign consent. I'm a geek and love reading research; if this is something we could do to help other kids in the future, I'm all for it. This surgery is known to have a complication known as Junctional Ectopic Tachycardia (JET). This research study was to determine which medication was more effective between two. He was chosen to get the study drug, which meant that he would get a certain amount of doses of the study drug and if it didn't resolve the problem, he would get the standard hospital treatment protocol.
His surgeon came to get us after surgery and told us the surgery went well, they ran into an odd situation that imaging didn't prepare them for but overall they were able to handle it. They told us they were working on getting him off bypass and closing and he should be in his room within an hour. 2 hours passed and we hadn't been called back. I needed to pump which was in his room, and I was so concerned something was wrong since we hadn't heard anything. We waited until nearly 3 hours before having his nurse called to ask if we could come back. She agreed that we could, but only because I'm a nurse she later told us. The hospital we were at is a teaching hospital and he was having some blood pressure issues; there was an orienting nurse and residents that were helping and senior staff were explaining processes and protocols to. It can be extremely scary and overwhelming to parents to listen to but none of it was new information to me, and I was comforted by the details.
Blood pressure control after this surgery is very important to not put too much stress on the sutures. His blood pressure was not great. They would have to give him meds to lower his pressure, but then it would lower his heart rate as well and they would have to give him fluids to bring it up. He did end up developing JET. The study drug did its job and he didn't need any additional treatment for JET after that. His poor nurse was so busy all night. I felt so awful because once he was more stable and I fell asleep I absolutely crashed. I woke up in a ton of pain from labor and delivery. Apparently I had a ton of adrenaline protecting me that was no longer there. I felt like a terrible mom for sleeping so hard and so long when there were quite a few people in and out of our room all night taking care of our sweet baby and I slept. Not that I could have done anything to help him, but I would have loved to.
