Owen’s tongue surgery was scheduled for April 2, 2018. I swear everyday leading up to that day went so quick. As the days flew by and surgery got closer we needed to make a decision about Owen’s baptism. Our plan was to have him baptized after he was healed and recovered from surgery. We wanted to have a huge celebration for him. However, as the days went by, and the reality of his surgery was hitting us we realized we really didn’t want to wait. I really wanted to have him baptized before his surgery. I at least wanted him to have that. We are Catholic and I had turned to prayer and faith a lot during those weeks leading up to surgery. Although, I would say I was still angry with God at this point in our story, I still wanted Owen to have that sacrament. It was important to myself and our family. The hard part was trying to get a shotgun baptism together during holy week. The whole week was booked up with doctors appointments for Owen and I had no idea how I would organize something so fast. Lucky for me, I have some pretty amazing people in my life. My sister in law Molly, along with members of our church organized everything, and Owen was able to be baptized five days before his surgery. We actually went straight to the church after one of his doctors appointments. We were exhausted and only a few people were there but none of that mattered. What mattered was that he was baptized. Would I have liked everyone to be there? Of course. My younger brother is Owen’s godfather and he lived in Pittsburgh so he missed it. Most of my family was missing and all of Mike’s family was missing. If I had to do it all over again I would make the same decision. Faith is a strange thing sometimes. I don’t know why having him baptized helped me feel slightly more at ease but it did. I was absolutely still a nervous wreck, but I was thankful that we were able to have Owen baptized and blessed right before he was going to take on such a huge surgery at just 7 weeks old. I knew that I would be clinging to my prayers more than ever five days later.
Before we knew it it was Easter Sunday and the next day we would be taking Owen to CHOP. I remember enjoying Easter but being very anxious the entire time. Even though I researched as much as I possibly could I still didn’t feel prepared. Sure, our bags were packed and I was aware what the surgery entailed, but I didn’t know how I was going to handle it all emotionally. I am not a super emotional person but like I said my kids are my Achilles heel. I remember getting home from celebrating Easter at my parents and going over all the lists we had made for the next day. We had to make sure Owen had nothing to eat or drink after a certain point. We knew that alone, was going to make the morning of surgery stressful, because our big guy is an eater. BWS causes Owen’s metabolism to be in overdrive. At this point in time he was eating every three hours, anywhere from 8-12 ounces each sitting. He was never full. When we would feed him in the middle of the night we could hear the milk going into his belly. After going through all the lists and having all of the bags ready for the morning, we put the boys to bed. I climbed into bed next to Mike and tried to drift off to sleep. He knows me like the back of his hand and he knew my mind was racing a mile a minute. He tried to ease my tension and held me tight and told me everything was going to be okay. I just laid there silently until eventually I drifted off to sleep. No sooner did my eyes close that I heard the alarm on my phone blaring. Surgery day had arrived.
We got all of the bags together and got everything into the car. We buckled the boys in their car seats and headed on our way. I cant even remember who we dropped Michael off with that day. It was either with family or one of my good friends. Its funny the things you cant remember, because something else so much bigger than that detail, is about to happen to your family. The car ride on the way to CHOP was a quiet one. I remember saying a lot of prayers on the way down.
When we got there we checked in and waited in the surgery waiting room. They finally called Owen’s name and we headed back to the pre-procedure area. By this point Owen was so cranky. Or should I say HANGRY! Let me tell you, that is a legit thing. I can say that, because I get hangry. Your literally angry because you are so hungry. That was how Owen was. Unless we took turns holding him and bouncing him he would just scream and scream. I felt horrible. Here was our 7 week old child screaming because he was starving and there was nothing we could do for him. I know that Owen won’t remember anything from that day or the two weeks following, but I swear that day I thought differently. The way that he was looking at me stabbed me right in the heart. He was looking at me like he was begging me to help him. I felt if he could talk in that moment he would have asked me why I was torturing him. Up to that point I had kept myself together pretty well but I was starting to unravel. Dr. Taylor finally came in and spoke with us. He told us that once they had him in the operating room they would get an IV in and do everything they needed to do to make him comfortable. He explained that Owen would be intubated through his nose since they would be working on his tongue. He said that post surgery his tongue might look even larger because of swelling. He asked if we had any questions. At that moment I didn’t have any, but I felt my head scrambling to find one just so they didn’t have to take Owen yet. Thank God! I thought of one! I asked him how long the procedure would take. He told us it would take about two hours and that he would come and update us as soon as he could. I wanted so badly to have a list worth of questions to ask to stall and keep my baby with me. I didn’t want them to take him but it was time. They had me put Owen down in the stretcher and put both side rails up. He looked super confused. Mike and I stepped away from the stretcher and they started to wheel him out of the room. Owen’s face flashed with panic and he started wailing at the top of his lungs. It was in that moment that I lost it. I burst into tears and as much as I wanted to keep my eyes locked on him and not turn away I had to. I turned my back on him and just listened to his cries get farther and farther away. I wanted so bad to run and grab him and change my mind but I knew that he needed this. Dr. Taylor was right, this was going to be so much harder on us than him.
I was a mess in the waiting room. I couldn’t stop watching the clock. I was thinking of everything. How did he do with them putting an IV in? How did his intubation go? Did he desat at all during the procedure? All of my medical and on the job knowledge came flooding into my head. I knew from my own career that just because we delivered a patient back to their families in a good state, doesn’t mean that there might not have been close calls during the procedure. My mind kept racing. After only about an hour or so Dr. Taylor brought us into a separate room. He told us that Owen did great and that they were finishing up. He said that they took over two inches from his tongue. I couldn’t believe he had that much extra to take! He said he was very happy with the outcome and that once they had Owen situated and settled in the NICU we could go and see him. My husband had a look of relief on his face and he gave me a huge hug. I think he was disappointed that I didn’t seem more at ease. I was thankful, don’t get me wrong. I was so glad the surgery was a success and that everything went well. I just knew that our son was going to look rough when we finally got to see him.
After what seemed like forever we went to the NICU and finally got to see him. I think that was the first time I saw my husband look uncomfortable. He could barely even look at Owen. That was what I was dreading. When I saw Owen all I wanted to do was hold him, but I couldn’t. All I could do was look at him and gently touch his arm to let him know that we were there. He looked awful. He was intubated and on a morphine drip to keep him comfortable. They said he would be kept that way for at least a day, then they would wean some of the morphine back. Tears just kept streaming down my face. What did we do to him?! Our adorable happy child that never had a care in the world was laying there with tubes coming out of his face looking completely lifeless. In that moment, I started to feel regret. I second guessed every logical reason there was for choosing to have him go through the surgery. Mike knew that I was unraveling. He gave me a hug and asked if I wanted to get some air. As much as I didn’t want to leave Owen I knew that Mike and I needed to catch our breaths…