Another round of appointments at CHLA are done. We spent the day in Hollywood meeting with my new perinatologist, the surgeon and had another follow-up echo done with Dr. Pruetz. I’ll keep this short and sweet. Nothing is “better”, but nothing is worse. We’ll take it. Our follow-up echo showed the same size restriction in the atrial septum and markers of the same amount of pressure into the lungs as our previous scans. The good news is Luca’s tricuspid valve is working properly and they don’t see any other leaky valves.
We met with my new perinatologist. Every single scan we get with an doctor, they say “he’s DEFINITELY a boy”. AJ laughs every time. They also said he’s growing well and other than this (extremely major) heart defect, he looks to be totally healthy. All my OB care switches to that office at 30 weeks. Then we’ll be taking trips to Hollywood weekly. Yikes.
This was our first meeting with Dr. Starnes. We already have a general understanding of the staged surgeries for HLHS, so he didn’t delve into technicalities there. However, he did go into some detail about what to expect with delivery because of the restricted septum. We’ve already discussed the different scenarios and it’s looking like they’ll take the baby immediately after delivery to open the septum. He’ll go straight to CHLA and I’ll be able to follow once discharged from the hospital where I’m delivering. Lots of things are up in the air: natural birth or c-section? get to hold the baby, even for a minute, after he’s born or take him right away? atrial septectomy (an additional open heart surgery literally right after birth) or just a catheterization? if there is a septectomy, do the Norwood (the first staged and planned open heart surgery) at that time or wait a few days (so two open heart surgeries in the first week)? At this point, the doctors say it’s too early to tell and everything will be solidified around 35 weeks.
My one hesitation of switching from UCLA to CHLA was that I loved our doctors so much at UCLA, and they took such great care of us there. I was nervous I wouldn’t feel the same about any other doctor, but I’ve been proven wrong. Dr. Starnes was so caring and compassionate. Most of all, he was positive. Our doctors always apologize for painting a negative picture of what to expect, but they say we’re asking the right questions. Of course it’s important to be realistic, which all of the doctors have been, but Dr. Starnes reminded us to just relax and enjoy the pregnancy. He reassured us that they can’t put a hard number on the chances of dying until the baby is actually here and even then, they can only give predictions. When we discuss developmental delays, he gives us facts: about 25% of HLHS babies have severe brain delays. But he also says he chooses to look at the other side of it, which is that 75% can function normally. He also reaffirmed our decision of choosing to not have the in utero surgery.
Of course we have our moments, but the positivity surrounding us means the world. And we feel your prayers. I know we do because we feel positive.
I’ll close with this: Dr. Starnes said to us that Luca will probably never be a competitive soccer player. Sure, he’ll probably be able to keep up with his little friends on a playground and even get to play soccer recreationally as he gets older, but nothing competitive. AJ’s response was that’s not true. He can be on a competitive team, sit on a competitive bench, and play the last 20 minutes of a competitive match. That, my friends, is positive perspective and that’s what keeps me going.