It’s been quite some time since I’ve written an update on our son’s Congenital Heart Disease. As we get further from Caddie’s first open heart surgery, we also unfortunately inch towards his next one. I wish I could find some comfort in the fact he has one under his belt, but the truth is, it’s never going to get easier. I will say, however, that I have come a long way since we found out about Caddie’s CHD, both as a mother and as a person who has always has an innate fear of death and dying.

In April Caddie underwent a heart Catheterization. They started everything by getting detailed imagery of his pulmonary branches to determine the extent of the narrowing and how they were going to proceed in the Cath lab. Something that surprised me is that it seems like the doctors make game-time decisions on how they will operate. I suppose to a certain extent that happens in a lot of professions, but it goes to show how lucky we are to have Doctors and Nurses locally who are able to adapt and be ready for anything at a moment’s notice.

I think the procedure lasted around four hours start to finish. When the doctor was done he came and talked to us in a private room, showed us the detailed imagery and walked us through what he and his team had done. One of the first things he said to us was, “There was impressive narrowing to the left pulmonary branch.” I think it’s pretty funny that Doctors call something impressive when they really mean terrible. Scott and I joked about that for days….we called everything impressive. That’s an impressive dump you took in your diaper Caddie, etc.

The doctor explained to us that his left pulmonary branch, which should have been about 7mm in diameter, was less than 1mm. He said it was about as small of an opening you can get and still HAVE a pulmonary branch be there. He said they had trouble getting the Catheter lead in him, let alone the stents. By the grace of God, they were able to get everything through that they needed and they opened up his pulmonary branch with a stent to 3mm, effectively tripling its size. Opening this up should help the blood flow more to his left lung and hopefully help it grow and develop. It will also help balance pressure exerted on the heart and the right pulmonary branch.

We will go back in September for another heart echo and for a consult with the doctor about what our next steps should be. I’m assuming the next logical step would be to see if they can open the stent they put in to 5mm, but that’s yet to be determined.

Some of you who know me might be surprised to have seen me write “by the grace of God” above. I have never been religious and in all honesty I’m not sure I even believe in God. However, Scott and I have been so awe-struck at some of the circumstances in our life that could not be explained any other way than miraculous. It’s Caddie’s pediatrician who taught me the phrase “by the grace of God” and I think it’s a beautiful way to give appreciation to unexplainable things in your life that you are grateful for. By the grace of God they were able to get Caddie’s stents in and he came out of the operation with no complications. By the grace of God we have the most loving and caring support system anyone could ask for. By the grace of God he is the happiest little 9.5 month old anyone could ask for.

Each and every day I think about his condition and find myself worrying about the future. I always try to stop myself and most days I’m really good about mentally focusing on other things like his killer smile, his warm snuggles, and his crazy almost-toddler acrobatics. Sometimes the fear of something terrible happening is more overwhelming than my strength to ignore it. Those times are thankfully coming less and less. In no uncertain terms, a sense of humor has gotten us through our worst days. As I was scanning in Caddie’s heart imagery, I found the sheet they made us fill out in the hospital. He was only four months old, so we didn’t really take it seriously, and we also didn’t think anyone would really read it. When they wheeled him in after the operation, the nurse looks at us and says, “White wine spritzer???” with her eyebrows up.

Our little man turns ONE in October, and what a milestone it will be! Every year with him will truly be a celebration of life and the deepest love I’ve ever known.

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.

So I’m not sure I’ve ever posted a truly personal blog on here. I don’t often feel compelled to write about myself, and I’m convinced that not many people would really care if I did write personal blogs. Sometimes I find them a little self-indulgent. The last few weeks, however, have proven to be pretty difficult in my personal life, and I decided I might as well share my journey in the off chance someone else is going through something similar and would find comfort in knowing that they’re not alone. I know I scour blogs, comment boards and threads just to know that I’m not.

This year my husband Scott and I have had a lot of changes in our life. He started working full time after being in graduate school for a bazillion, I mean three years. Shortly after, we found out that we were pregnant with our first child! When we found out, I didn’t really have the typical movie-ish reaction where it’s happy tears and celebrations. I started crying all right- and saying, what did we dooooo??? I’m way too selfish for this!!! After the initial shock wore off, it all became a lot more exciting.

A month later, we moved into our dream house, and we felt like we were on top of the world. We now totally live on ‘Leave-it-to-Beaver’ street. Every time I pull into our neighborhood, I feel like a bluebird could come sit on my shoulder and start singing to me. The moving process was a lot more stressful than I ever thought it would be. I seriously underestimated how much crap we accumulated, but in the back of my mind, I told myself how lucky I was for the house distraction while I was pregnant. Anxiety has been one of my weak points since I was little. It was nice to have a focus on something other than the millions of things that could go wrong with my pregnancy.

All was good until our 20 week ultrasound. The doctor came in and told us there was something wrong with our baby’s heart. If you have problems with anxiety, this news will probably hit you ten fold as strong as it would a normal person. I remember the world feeling like I was in a dream- as if people were there talking to me, but I wasn’t there. That feeling actually lasted for about a month straight, and I still go in-and-out of it sometimes. Tetralogy of Fallot was the diagnosis, and that is not one, but four congenital heart disorders that all occur simultaneously. The doctor then went on to explain that this could be caused by a chromosomal disorder called DiGeorge’s Syndrome, that would result in a lifetime worth of specialists and teams of people that would need to work with our child. It can include walking, talking, feeding problems, and among other things, major developmental issues and mental retardation. And that’s pretty much all I heard the doctor say- Mental Retardation. To find out the extent of the baby’s troubles, we decided to do an amino, which was no walk in the park but completely worth it.

Seven days passed. They were brutal, not knowing what the future had in store for us. The feeling of loss before you even get to experience the joy. A lot of really ugly thoughts passed through my mind that week. Having this diagnosis is pretty rare even though some people will tell you it’s common. I say the Flu is common. This is not. This is like winning the shittiest lottery.

On the seventh day, we received the phone call that made the world start spinning again- No DiGeorge’s Syndrome! I promised myself that if I received that phone call, I would go back to being the happy expectant mom-to-be. And I did, for about three days.

All of the feelings and fears started to simmer to the surface again. If our baby has Tetralogy, what else will he have? What did I do to cause the baby to have this? (The doctors say it’s just random and they don’t know what causes it in many cases, but you start to second guess everyone. Surely there is something that causes this). Was I eating enough good, organic food? I ate a lot of take-out junk my first trimester because of the move and lack of access to a kitchen. Will this give him autism? I convinced myself that I could “heal” our baby by eating more eggs, cutting out wheat, and eating fresh fruit and dark chocolate everyday. The rational part of my brain did a major leap off a tall cliff, and all of my fears and emotions made me feel like I was in a steep spiral downward, caught swimming upstream in the flushing of life’s toilet.

Our last ultrasound was on Tuesday, four days ago. I went into it praying that baby would have miraculously healed and the eggs I have been eating had worked. Of course, he (yes, it’s a boy!) still has his heart problems, and of course it’s ridiculous to think that eating eggs would help that…I’m not even sure where I got that idea. I think I made it up. It sounded promising. I have to mentally try to keep re-aligning my brain with the facts: The survival rates of having this are insanely great. He will definitely need one surgery, open-heart, possibly more. We are lucky this is a condition that will allow him to have a full and healthy life when fixed. He doesn’t have anything else wrong with him until diagnosed, so to put energy into that fear is worthless. When I do that worthless worrying, Scott tells me I’m in my rocking chair- I’m doing a lot of work and not going anywhere. It always makes me laugh. Well, more like snicker begrudgingly because I know he’s right.

We have three more months to go, and I can honestly say that the last few months have changed my life more than I ever thought was possible. I feel like I’ve aged about 5 years both mentally and physically. It’s been a good change, too. It’s been really rough sometimes, but I feel a lot stronger from it. I’m excited to meet our little man, and document his spectacular life. It will be hard not to spoil him given how lucky we will feel each and everyday he is with us.

In our ultrasound earlier this week, we were given the best gift ever! A small video of him sucking his thumb. His little nose is too cute and seeing it It made all the fears melt away… for this week at least.

I will continue to update this journal of his early life as we go through this experience. We are so thankful we found out early so that we’ve had time to process what will be happening as we move forward into the unknown. My wish is that in two years, I’ll look back on these posts and find comfort in knowing that all turned out well, and that our child will be able to experience a life filled with joy and love. I have a new appreciation for any parents who have gone through something happening to your child. You are the bravest people in the world!

Thank you so much to my closest friends and all the people, doctors and nurses who have been more than amazing! An even bigger thank you to Scott, who is the only person I’d want to go through something like this with.

XO Jess