The Day I Became a Heart Mom

The heart mom club. A club no one wants to join. A club most don’t know exists until they’re thrown into it one day unexpectedly. And that day is unforgettable for everyone who lives it.

I joined the heart mom club in May of 2018, 2 days after my son, Axxle, was born. What’s funny is that I have the WORST memory, the absolute worst. I don’t remember last week, most movies I’ve seen, or the majority of my childhood…but that day in May, I remember almost every detail, everything down to the cafeteria dinner they served that night.

Axxle’s birth:

Axxle was born early at 34 weeks. But we knew preterm birth was a possibility. I have a bicornuate uterus, which means it’s shaped like a heart. This gives baby significantly less room to grow, so things like preterm labor can happen.

My water broke on Sunday morning. Like the huge, sudden gush you see in movies lol But luckily I was at home in bed when it happened. We went straight to the hospital and got comfy. Contractions didn’t start until about 12 hours later and 5 hours after that, he was born. It was my perfect birth story that I dreamed of my whole pregnancy…aside from it happening 6 weeks early, of course.

They took him straight to the NICU but he was really doing great with no huge issues. It seemed the only slight issue was a heart murmur that they expected to go away on it’s own within a couple days.

Diagnosis Day: The day I became a heart mom

My husband and I ate breakfast and got ready to go down to the NICU. We called to make sure it was okay for us to come see him, but instead of hearing the resounding “yes!” we were used to hearing, we heard a “not yet.” The nurse told me they were doing an echocardiogram just as a precaution since that heart murmur still hadn’t gone away. We needed to wait an hour and then call back to come see him.

I honestly didn’t even sweat it. I wasn’t worried at all, I knew it was going to be fine.

So we started packing our things to be discharged later that day. I pumped again, we watched some TV, and an hour and a half later we called again. The nurse said they were still looking at him but this time I heard a little uncertainty in her voice. Now the worry set in. Not two minutes later, the neonatologist and a pediatric cardiologist walked in our room. The first words out of my mouth were “Well this isn’t good.”

And it wasn’t.

The cardiologist started explaining what they found during Axxle’s echo. He took out a piece of paper and started sketching a normal heart. And then he drew what Axxle’s heart looked like.

I think every heart mom and dad still have that paper with their child’s heart sketched out. Or at least remember every detail of watching as it’s drawn.

I was trying so hard to control my sobs and understand everything they were saying. Next thing we know they were telling us a helicopter would be here soon to transfer him to a different hospital. One that would be able to better treat him when his heart defects started showing themselves. A slightly easier way to say our son’s heart will start to fail, it’s just a matter of time.

They walked us down to the NICU so we could spend some time with him before the transport team made it there. They pulled the curtains around his incubator to give us some privacy, especially since tears were still streaming down our faces. It just so happened that there was bad weather that day. They wouldn’t be able to send a chopper so they sent an ambulance instead. And I was very okay with that cause that meant we’d get a few more hours to spend with Axxle. I felt beyond grateful for every single second I could get with him, because the unknown of the situation made it feel like it was the last few moments I’d get with my baby.

At one point while we were holding him, Axxle’s nurse asked if she could take our picture together on our phone. And while we agreed, I remember thinking, “Is this woman crazy?! Now is not the time for a picture. Does she really expect us to be able to smile?”

But now I get it. She knew that this was one of the most significant times in our lives. And what’s more, she likely knew there was a chance this could be our only picture together. And that maybe one day later, I’d want that picture.

I can say now she was definitely right. And I’m so thankful for her.

Once the transport team arrived, we were sent back to our hospital room to wait. Once they were ready to go, they’d bring him by for one last “see you later.” Purely for the sake of my milk supply, I forced myself to eat the fried chicken, mac and cheese, and collard greens the cafeteria served that night. And the whole time we were waiting, I was silently begging God for just a few months with my baby.

They finally came in with Axxle in the most high-tech looking incubator I’ve ever seen. He looked snug as a bug inside. They gave us directions on how to get to the hospital they were taking him to and then they were off.

Having to watch my baby leave that hospital in an ambulance while I walked out empty handed was one of the heaviest moments of my life. I knew it would be hours before I could be with him again and the uncertainty of where we were going and what would happen only added to my emotions.

It was about 10 PM by the time we made it up to the hospital and found Axxle in the NICU. He was settled in and it was like I could finally take a breath. We were there. Axxle was good. I wouldn’t have to leave him again. I knew he was in the perfect place to get the greatest care.

And we started that NICU stay with one of the greatest nurses. Not only did she take care of Axxle, she took care of me. She filled me in on everything that was going on and what I could expect over the next few days. But she could tell that I was barely able to focus on what she was saying.

At one point she asked me a simple question and all I did was stare at her. So she pulled a chair over next to Axxle’s incubator so I could sit and rest. I ended up falling asleep and when I woke up, she had left a big paper bag of snacks and drinks sitting next to my chair. She also called and arranged for us to be able to stay in one of the family rooms downstairs. I was able to shower and sleep in a comfy bed without even having to leave the hospital. And that did loads for my anxiety.

I will never forget her kindness in one of my most vulnerable times.

Axxle’s Diagnosis:

The next day we were able to meet with the cardiologist on Axxle’s case and hear his full diagnosis. He was born with double outlet right ventricle (DORV) with a large VSD, d-TGA, PDA, pulmonary artery stenosis, subpulmonic stenosis, and polysplenia.

You’re welcome to google that if you’d like, but basically that means that both main arteries formed into one side of his heart, there’s a hole in between his ventricles and narrowing in both his pulmonary artery and beneath his pulmonary valve. And to top things off, he has more than one spleen.

Where we are today:

At the time of writing this, Axxle is now 4.5 years old and thriving!

He has been through two open heart surgeries, 5 catheterizations, countless x-rays, echos and EKGs. And he made it to 5 months before needing his first open heart surgery. It went so smoothly and he recovered so quickly that he was in the hospital for just 6 short days. His most recent heart surgery in 2022 was a doozy. He had 3 small strokes while on bypass and ended up having a lot of complications during his recovery. That surgery completed his new circulation and his heart now functions as one-sided. But it has allowed his oxygen levels to go from 70% to 90%. He is now the most beautiful shade of pink. And he runs and jumps all day long without getting out of breath or turning blue. He is growing and thriving and we are so proud of him.

These surgeries were only palliative, so it’s likely that at some point in his life he will need a heart transplant. But there’s a very good chance that won’t need to happen until he’s an adult.

I never expected this journey. I never expected to become a heart mom. The thought never even crossed my mind that this could happen to our family, not even for a second. I had never even heard of CHD.

But it happened. And I’ll never forget the day I became a heart mom.

If I could go back and change things, somehow take away his heart defects, I absolutely would. So he wouldn’t have to go though everything he’s gone through and everything he still has to go through.

But I’m also grateful for what CHD has taught us. Like what’s really, truly important in life. Not to take a single day for granted. And what society deems as normal for development doesn’t *actually* matter. Every child will learn and grow on their own time. Axxle has had a tough go at life in his short 4.5 years, but don’t get it wrong…he is the happiest little kiddo and he is an absolute joy to know. His CHD makes him a warrior and he’ll always have the greatest testimony to tell.

If you’re a new heart mom with an inpatient stay coming up, check out my complete packing list here. I’ve included everything I’ve packed for my heart warrior and myself (and things I wished I’d packed). There’s also a printable PDF, so you can check things off as you pack.