Tetralogy of Fallot: A Personal Journey Pt.3

I’m not going to lie…I’ve been avoiding writing about this for about 6 months. This has undeniably been the most difficult time I’ve ever had in my life. I have been writing the blog post updates in my head and then letting the words just float away, never to write them down. Why? I’m not exactly sure. Maybe it’s all been too difficult to sit with and process. I will start with this week and then jump back to September for a full update.

Today is a great day. My baby boy came home from the hospital over a month ago after having his “full repair” open heart surgery for Tetralogy of Fallot. He slept in my arms today, smiled ear-to-ear, filled his diaper a healthy few times, and otherwise acted like a perfectly normal 4 month old without a care in the world. In my brain, there is a heavy dose of emotional dust still lingering from the last two months, but I have learned to savor the many blessings of our new reality.

Last September I had a fetal heart echo on my birthday. I had made myself so sick and nervous over this that I refused to have anyone celebrate my birthday. It actually ended up being the best birthday gift ever, because we were told that our baby, even though he had TOF, was on the good spectrum of this disease and his pulmonary artery was growing really well. We were also told that he would probably be able to come home with us after he was born instead of going to Children’s Hospital for a shunt. It felt like our prayers were starting to be answered and everything was going to be just fine.

A NEW CHAPTER BEGINS

Scott took this selfie right before joining me in the OR for our C-Section.

In October, we went to the hospital on the 27th to be induced. 28 hours of labor later, they decided to do a C-section because of my failure to progress. Our baby boy, Cadel (pronounced Kuh-Dell), was born in all his beautiful baby glory on October 28th at 10:54am. When Scott and I heard his crying scream for the first time, it was a flood of emotion. I think I felt every gooey good feeling in the world all at once, and we both just started to cry. I only got to see him very briefly before going to recovery, and Cadel was sent directly to the NICU for a heart echo. Following my hour in recovery, I became extremely sick and couldn’t sit, stand or talk without throwing up. TMI. I only share that because looking back on the situation, it’s pretty funny. I was having serious conversations with cardiologists, nurses and doctors about our son while actively vomiting in front of them as they talked to me. It was probably like trying to have a conversation with the girl from The Exorcist. Long story short, I started to feel better after getting my blood sugar back up and was able to go and hold our baby for the first time that night. It was the most amazing feeling. He was such a cute perfect little man and the idea that he was sick was so confusing because he looked so normal and so healthy. We stayed in the NICU until his PDA closed off and we knew he’d be stable. A PDA is a natural shunt that supplies oxygen to the blood stream during pregnancy, as a fetus doesn’t use their own lungs. TOF babies are typically a-symptomatic when they are born because this natural shunt is still in place. As it naturally shuts itself off, it becomes apparent what condition he’s actually in. We were so lucky because our little man was healthy enough to come home with us instead of having an operation. His blood oxygen saturation levels were hovering in the low 90s.

At home It became clear that being a new mom came with some unexpected challenges. Did you know that around 80% of new moms experience what’s called “baby blues”? It’s basically a condition that makes you feel batsh*t crazy for about two weeks. For a while, it was a full on war against my brain as the flood gates to my anxiety had been opened. Sleep and a lot of support from friends and family helped me come out on top of this time with a smile on my face. Day by day, things started to settle, and still, when I looked at our son, all I saw was a healthy smiley, strong little boy. But his reality was unfortunately not based on what he looked like.

Cadel’s blood oxygenation levels started to drop by early December, when he was in the low 70s. The cardiac team started him on some medication which helped raise those levels to the low 80s until he could have surgery, scheduled for January 7th. As luck would have it, he developed a dairy protein intolerance right around the time of his surgery. The surgical team didn’t feel comfortable putting him on heart bypass if he had even a little bit of blood in his stool, so his surgery was delayed until January 18th.

I wanted to document Cadel’s scar-free body one last time.

THE BIG DAY

I’m sure you can imagine that was a long ten days for us. You build yourself up to be ready for surgery, and then when it’s delayed, each day passes by at snails pace. When the day came, I was actually very eager to hand him over the the surgery team around 7:30am. I was excited to get him on a path to recovery and I was relieved his surgery hadn’t been delayed a second time.

All was going well and the Columbus Children’s Hospital was keeping us up to date with direct text messages. It was pretty cool. We knew exactly when his heart bypass had started, when the surgeon was making his first incision, , etc. etc. At around 2:30pm a nurse came out and told us there was a setback. She said that when they went in to do their full repair, the left branch of his pulmonary artery was actually extremely small and needed to have a “patch” on it, meaning they expand it to make it larger. The patch they put on was twisting a little when they tried to take him off heart bypass preventing his heart from effectively beating on his own. They said they had to put him back on bypass so they could re-make that patch. Here’s what I heard: your baby’s heart isn’t beating on its own. We’re going to do our best to fix it. Here’s what I thought: what happens if they can’t fix it? Will we lose him?

And there I was, face to face with my biggest fear I had been hoping, praying and pleading with the universe I wouldn’t have to face. I was sitting with it for about two hours until the nurse came out and said he had been taken off bypass, the surgeon was finishing up, and his heart WAS beating on his own. In that moment, we all sprung to our feet, hugged and cried. There was such a huge sense of relief. Little did I know, the journey wasn’t over yet.

We were able to join him in the CTICU less than an hour after he was out of surgery. He was hooked up to so many machines and he still had his breathing tube in. I didn’t see any of that when I looked at him. All I saw was his perfect little face. He was so much pinker than we had ever seen him. I didn’t really ever think he was pale before the surgery, but it became apparent that he was when I saw how rosey he was after.

That night, about four hours after he was out of surgery, he developed a heart rate over 200. The two sides of his heart were also not talking to each other, giving him heart arrhythmia. We slept at his side in the CTICU on a pull out couch and all night his alarms were going off, warning the nurses that his heart rate was racing too high. It was a scary and almost surreal thing to live through. The next morning, it almost felt like a dream.

Normally they would “jump” the heart using a pace wire that had been inserted in surgery. His pace wire for some reason wasn’t working, so they couldn’t jump start his heart into beating correctly. The condition he developed, called JET, had to work itself out naturally, which we were told usually happened within 72 hours. Our little man kicked it in about 48 hours. Now, waiting two whole days for his heart to normalize felt like weeks, but once he came out of JET, things slowly started to get better each day. He had a lot of liquid around his lungs from being on bypass for so long, so that’s what took the better part of the entire second week to clear up. Each day came with emotional ups and downs, and it was hard (nearly impossible) but completely necessary to keep our focus on the larger picture. He WAS slowly getting better.

About two days before we were able to take him home, on day 11, he started to smile and interact as usual. I think this is when Scott and I finally felt a sense of relief. When we did take him home on day 13, it was almost like nothing had happened to him, of course the same can’t be said for us. His scar had all but healed in that short amount of time, and it doesn’t look bad at all. In fact, I’ve come to love it which still surprises me.

Reflections

So while I’ve written about this experience and how scary and crazy it was, I also want to mention some things that have been blessings.

– We have the best, most loving friends, family and community that has come together to support this little angel. It’s hard to even put into words how much all of their support has meant to us.

– I don’t take one day for granted with him. Sometimes my anxiety gets the best of me and it’s easy to go negative. I have a mantra that I’ve started to repeat to myself since coming home from the hospital. “We are only promised today.” And I will be thankful for each and every day that I’m given with him. I am getting better at living in the moment, which has always been something I’ve struggled with. Don’t get me wrong- I’m still horrible at it, but I’m getting better.

– I easily forget he’s sick. Having a kid is for the most part seriously fun. When you look into your child’s eyes, they are so much more than any adversity they’re born with. I happen to think our kid is one of the coolest children I’ve ever met. He’s totally going to trick us into having more.

Cadel is over 4 months old now and will be having follow-up catheterization procedures at the end of April. To say I’m nervous about it is an understatement. They will be going back into his heart, looking at a patch from his surgery that is leaking, and also expanding and putting shunts into his pulmonary artery. This is a non-invasive procedure, so he won’t be due for another open heart surgery for a couple of years. Like all procedures, however, it comes with risks. Risks that I’m aware of but try not to think about.

Sometimes I still get caught up in the “why did this have to happen to him?”, like a record skipping. He certainly doesn’t deserve this. And that’s when I take a step back, and I try to re-align myself with HIS reality. (By the way, I’m really bad at doing this, too, so Scott has to help me with it sometimes) Cadel doesn’t know the difference right now, and by the time he does, hopefully the condition will simply be about monitoring and maintaining. Most of the “bad” things that I’ve lived through so far in this experience have been a result of my fear and emotions, and not a result of his condition. If I were giving advice to any parent about to watch their infant go through major surgery, I would encourage them to try and maintain a sense of perspective throughout the entire experience. TOF is extremely treatable. Your entire family will be stronger for living through it. And lastly, and most importantly, for as scary and hard as the bad stuff is, the good stuff is equally joyus and that much more rewarding.