Day 4: Surgery Day | Arterial Switch Operation and Coarctation Repair | Leyton’s TGA Heart Story

Surgery Day | Unexpected complications and a massive bleed

I have to admit, this was the hardest part of Leyton’s heart story for me to write. I’m still grappling with everything that happened during and after Leyton’s surgery. As much as I want to share his story, it’s been a hard one to unpack. The events of the day gave way to a roller coaster of emotions, leaving us shell shocked and numb by the end.

I flashback to that day all the time. In my moments of reflection I’m often left feeling full of gratitude. I’m thankful that he survived. I’m appreciative of the wonderful care he received and for the support of our families. However, that perspective took time. If you’re a heart parent and struggling, I hope this post sheds some light on the slew of emotions we traveled through while working toward that place of gratitude. I found comfort reading stories of other heart families, especially when they opened up about the hard times as well as the victories. Whenever I share heart updates or milestones on social media, I try to keep that balance in mind.

While we were in the hospital it seemed like there was an insurmountable mountain ahead of us. I couldn’t fathom how Leyton, or we, would get through it. Let alone make it home to anything that remotely resembled “normal” life with a newborn. Shockingly, it happened faster than I could’ve imagined. These babies are incredible. Nurses and doctors are incredible. Modern medicine is incredible. I wish my past self could’ve gotten even a glimpse of our life today to reassure me in those dark moments.

In my last post I shared how difficult the night before surgery was, but we started the day with him peacefully sleeping in my arms. The anesthesiologist arrived at our room promptly at 8am to talk us through the steps of his surgery. Our nurse, Nichole, (one of our favorites!) quietly prepped his isolette for transport. I held him until the very last moment and then we wheeled him to the operating room.

The team escorted us to the double doors where we had to say goodbye. I dreaded that moment for months leading up to surgery, terrified I wouldn’t be able to walk away without him! I pictured myself causing a scene and chasing after him sobbing, but in the end it was calm and swift. We kissed him goodbye, told him how strong and amazing he was, and Nichole walked us back to his room to collect our things.

There was a small chance we’d move to a different room post-op, so we had to completely pack up as if we were leaving just in case. Risk of infection was an enormous post-op concern, so they sterilized the room whether he moved or not. However, that meant we couldn’t wait in his room during surgery like we hoped. The privacy and familiarity of the space felt comforting, but we packed up and left anyway.

We stopped by the family waiting room, a large space with open tables and clusters of chairs. There were a few other families already seated when we arrived, and the tension in the room was palpable. Everyone in the room shared the same agony and uncertainty that consumed us in the moment. It was too much for us, so we left.

We wheeled all our stuff to the downstairs cafeteria and grabbed coffee and breakfast. I expected my appetite would be nonexistent. I thought I wouldn’t be able to stomach food, but Jordan and I served ourselves a massive breakfast anyway. We found a secluded table outside and sat down to eat. I don’t know if it was all the pumping or the stress or what, but we scarfed down our entire meal!

We talked a little bit, but there were long moments of silence. We were cycling through the same thoughts, and no words could comfort us. After a few hours we decided to head back upstairs to wait for an update. I’ve seen some hospitals offer text messages or a screen to monitor your child’s status. At the time CHLA didn’t offer anything of the sort, so we just waited around for a phone call.

Leyton’s surgeon, Dr. Starnes, had a reputation for working quickly. All the nurses told us to expect him out of surgery in just 3-4 hours. As we were getting ready to head back upstairs, we received the call that he was out of surgery! We sprinted up to the waiting room to speak with him.

I’ll never forget the confident smile plastered across his face as he opened the door. He told us everything went great and they were able to do the arterial switch and coarctation repair. There was a lot of swelling so they left his chest open in order to avoid putting pressure or additional strain on his heart right away. We were prepared for the possibility, so we weren’t overly worried when he told us. It was a euphoric feeling to hear the surgery was over and that we’d be reunited with him so soon. We hugged Dr. Starnes and took a blurry selfie, tears still fresh in our eyes.

We were flying high with relief and called family and friends to tell them the biggest hurdle was over. Soon our parents arrived and we sat in a circle hugging, crying, and laughing.

Several hours went by, but honestly I had no concept of time until I looked up and noticed one of the fellows I recognized from rounds. My heart dropped when I registered her concerned look as she approached us. It was so unexpected, but I knew that look. It was the same expression that flashed on the perinatologist’s face when he first found Leyton’s CHD.

She went on to explain that as soon as Leyton returned to his room they noticed blood draining into his chest tubes. There was such a massive amount of blood so quickly, they were having trouble controlling it. They weren’t sure where or how it began.

We tried to wrap our heads around what she was saying. I attempted to hold it together through my tears so I could focus on her words. Jordan asked if it was life threatening. She nodded yes. They were doing everything they could to stop him from bleeding out, but nothing was working.

She felt she owed us an explanation for the long delay, and explained how critical the next 15 minutes were. If they weren’t able to stop the bleed they were going to take him back to the OR for emergency surgery.

She left and our family sat there, speechless. Never in my life have I felt a deeper or more visceral desperation than in the few hours that followed. I sobbed, prayed, pleaded, begged, and squeezed my fists so hard my hands lost circulation. At one point Jordan and I stepped out into the hallway and held each other, our eyes fixed on the double doors waiting for the doctor to return. It felt like I was watching the events play out to somebody else on screen. I was distraught thinking back on our boisterous celebration just minutes prior. How was I so oblivious that my baby was fighting for his life just down the hall?

The fellow came back and told us they weren’t able to stop the bleed. They were rushing him to the OR. Dr. Starnes already began another surgery by that point, but they pulled him out to operate on Leyton. More sobbing. More agony. Time crawled. It was torture.

A long while later, another doctor we hadn’t met before came out to talk to us. His disposition was completely opposite of the fellow’s. He oozed confidence and reassurance. He told us they located and stopped the bleed and overall surgery was a huge success. They were monitoring Leyton and keeping him stable, but that he was doing beautifully despite the complications. We would be able to see him in the next hour or so, but suggested we go downstairs to get some fresh air and take a moment to regroup first. (Clearly referring to me, as I was borderline hysterical by that point!)

We all took a deep breath, but it wasn’t even a sliver of the relief we felt hours earlier. It was after 5pm by then, and I was so engorged from going hours without pumping. My whole family crammed into the mother’s room with me while I pumped. Then we followed the doctor’s advice and went downstairs to eat. Although, this time I had indeed lost my appetite and couldn’t even take a bite.

Eventually we got the call that we could go see him. It was nearly 8pm by the time we were reunited, almost 12 hours since we handed him over. To keep the room sterile only Jordan and I could enter, but our family peeked in through the window (pre-COVID, clearly). They warned us that Leyton was incredibly swollen and reminded us that his chest was open so we would be prepared when we saw him. I looked up countless photos of post-op TGA babies during my pregnancy. I had a pretty good sense of what he would look like, but nothing eases the pain of seeing your own child like that.

We were adamant that we wouldn’t leave his side from that moment on, but the nurses urged us to spend a couple hours with him and then go home for the night. They explained that the hours after surgery were touch and go and they would be working on him throughout the night. The lights would remain on and people would be in and out of the room constantly.

She reminded us that we had to take care of ourselves in order to be the best caretakers for him. As much as I hated that it meant leaving him, I knew she was right. 

I programmed the direct phone number for the CTICU into my phone and called his nurse constantly for updates. I woke up every three hours to pump anyway, so I was able to get rest in between once I heard he was stable.

We returned the next morning and the swelling had already started to go down a bit. I remember thinking how good he looked (which amazes me now as I look back at the photos). Somehow, it didn’t take long to get comfortable seeing his chest open. Even though the bandage was clear and you could literally see his heart beating in his chest, I never felt squeamish.

Every nurse and respiratory therapist that came into our room in the days that followed, commented on his bleed. After it was clear he was ok and stable, they were a little more honest in their reflection of those few hours. Rather than downplaying it to comfort us, they candidly explained how intense it had been . All the nurses painted a similar scene of controlled pandemonium that made me well up just imagining.

It was an all hands on deck situation and virtually everyone on the floor dropped what they were doing to rush in and help. They replaced Leyton’s total body blood volume TWICE in a very short time. Whenever anyone read over his report they were shocked by the amount of blood products he received. Nurses (who weren’t even assigned to him) came by every single day to check on their “little rockstar”. *cue more tears from mama*

As heart parents, we quickly learned that recovery isn’t linear. The days brought setbacks one minute and leaps and bounds the next. It was emotionally and physically exhausting, and can’t be fully understood unless you lived it. I’ll condense the next few weeks of Leyton’s recovery in a few more posts, hoping to be all caught up by his first birthday on August 11th! He’s still our little rockstar and I’m in awe of all he overcame every day.