Today marks one year ago that we got confirmation of Huck’s heart with the fetal cardiologist. But the day everything changed was January 20. That day, we made that hopeful drive to Galveston, praying there was some mistake. That maybe our normal OB’s ultrasound machine wasn’t clear enough. Or maybe Huck was just laying weird and they couldn’t get a good shot of a whole heart. I remember thinking, “This isn’t really happening. This doesn’t happen to people like us. This is all just a mistake. A fluke.” While we sat on the ferry, we didn’t get out and sightsee like most people do. Instead, we sat in the car and googled heart defects. We knew what worst case scenarios were and we read words like “mortality rates” and “survival rates”. We vaguely knew what hypoplastic left heart syndrome was and we knew that a single ventricle defect still has mortality rates. I had a copy of the insurance paperwork from my OB’s office but I couldn’t make myself look at it because I was scared of what it might say. I didn’t know it until much later but the diagnosis codes were listed there, one of which was “apparent life threatening event”. We went to that appointment hoping for the best but prepared for the worst.
They called us back and we had the most in depth ultrasound ever. The tech took the time to show Nolan the things he’d never really gotten to see before, chatting with us the whole time. We saw his hands and fingers, feet and toes, his face and lips, all of his bones. And when she switched over to his heart for the echo, she went dead silent. We squeezed each other’s hands and we knew something was wrong.
They told us before that appointment that we would have the scan and then the maternal fetal medicine doctor would talk to us – good or bad, we would have answers before we left. The tech got up and left the room and we talked about how strong his heart looked. That there was one part that was just ticking away, so strong. We found out later that was his one good valve, which was strong. The doctor came in, sat down right in front of us so that he was at eye level, and said “we think your baby has hypoplastic left heart syndrome”. I swear it was like something in a movie. It felt like everything got really fuzzy around the edges and I was hearing him but I was simultaneously scrolling through my brain of everything I’d read about HLHS and how everything in our life just shifted. In one sentence, our world changed.
We were told that we would be referred to a fetal cardiologist, who confirmed HLHS one year ago today, but like most of you know, we later found out with our rockstar fetal cardiologist at Texas Children’s that Huck has his own rare combination of defects making up his single ventricle physiology. He’s not a straightforward HLHS baby; he has most of the same characteristics, but with a few additional defects complications. (As a reminder, Huck had ventricular inversion with a hypoplastic left-sided right ventricle, tricuspid atresia, a hypoplastic aortic arch, congenitally corrected transposition of the great arteries, a vsd, an asd, and a very large pda. On paper it was listed as 7 different defects.)
We left there in rough shape. I don’t think we’d ever been so sad before in our life. I remember we tried to eat lunch but neither of us had much of an appetite. We were driving down the seawall in Galveston and I think we both saw him at the same time. I heard Nolan say “oh no” but it was too late. I’d already seen him. There was a dad waiting to cross the street, with a happy little baby boy in his arms. Something relatively small, but we both completely lost it. Nolan was on the phone with his dad and he just handed me the phone and I managed to choke out that we’d call them back. We had no idea how we were going to make it through this. But here we are, one year later and we’ve survived so far. And we’re home and happy and Huck is doing great, all things considered.
Yesterday he had a cardiology appointment and an echo to recheck the potential arch narrowing and his heart function. I’m so relieved that we found out that his echo showed almost zero gradient in his arch, which means no narrowing and no cath lab! His ventricle function is still the same – mildly depressed – and that may either stay the same or may still return at some point. His cardiologist was able to check out his consistent retracting that we’ve been noticing for a while, even when he’s very clearly not in distress, and she determined it’s not from respiratory distress, but mechanical from the way his sternum and ribcage healed from his two surgeries. We’re weaning his enalapril, discusses plans for the future, talked a little about his Fontan, and got released to visits every 6 months. Oh, and his saturations were holding steady at 89! I’ve been so anxious for this appointment, especially with it basically being the one year mark from THE day, but I left there feeling like a huge weight has been lifted off my shoulders.
This time last year was so hard on us. But this year, things are looking pretty bright. ❤️
rt #ToughLikeHuck #1in100