For our 20 week sonogram in March of 2010, we were greeted with the news that it would be a boy, and that they couldn't see his heart on the sonogram. Several tries later, along with trips to maternal-fetal medicine (high risk pregnancy doctor) and a pediatric cardiologist, we were informed that our yet-to-be born son had a condition known as Hypoplastic Left Heart Syndrome (HLHS). In short, his heart developed without the main pumping chamber (the left ventricle).
Thus began an journey into infant cardiology, cardiac surgery, temporary relocations to Houston that would ultimately result in David Alexander. This blog is a catalog of that journey.
In the beginning of the ordeal, we sent out update emails to a small group of family and friends. Over the course of the ensuing months, additional people were added to the distribution list, some of those people were forwarding them to additional people, and it just became a bit unwieldy. This blog was eventually born as a way for us to keep posting updates about David so that anyone who had fallen in love could keep following him without me having to spam the inboxes of people who aren't that interested in the minutiae of everything.
For anyone who has come here after a random Google search of "HLHS", I fear that this blog is pretty short on medical details. I can say that our son's case worked out as well as can possibly be expected. Some friends and family have called it a miracle. I'm not prepared to got that far, unless one is prepared to ascribe deity status to Dr. McKenzie at TCH. Besides, I'm rather certain that God knows how to fix the problem without surgery. I'm quite sure that every case is different, and the best commentary that you can get about your case is from your own doctor. Looking back at our case (with emotions mostly removed now that we're past the really rough parts) I think David was in a pretty good position from the beginning. The cardiologist recently even told us that lots of HLHS babies aren't stable before they're even born. With David, they always seemed optimistic about his prospects for palliation (that's become one of my new favorite words - in engineering parlance, we'd call it a kludge.) We had a lot of excellent doctors and some genetics from his mom's side that tended to make him heal really fast.
None of that, of course, should be taken as "it has been easy". It hasn't. Especially between the Norwood and the Glenn. After the Glenn, you kinda get to have a normal baby. Prior to that, David (and HLHS babies in general, I presume) was never really stable and safe. We managed to avoid the emergency room, but I think that's pretty uncommon. You basically get to be a NICU nurse 24 hours a day. And even though things have worked out so amazingly well, I can't say that there weren't sorrows and tough times. It was rough having him taken straight to a warming bed - without us even touching him - in the hallway right after he was born so that he could have an IV installed. I think the saddest mental picture that I have, even more than seeing him post surgery with all of the tubes, was watching Christy get to see & touch him for the first time after he had his IV put in. They had him in one of those fully enclosed incubator thingies, they rolled him into her delivery room, she got to stick her hands in the little circle shaped holes and stroke his little head, and then we wheeled out to NICU. That still makes me tear up a little bit. And then there's surgery. No matter how good the surgeon is or how good they think your baby's prospects are, there's nothing like kissing your little one goodbye before they roll him in that first time. Or like sitting around in the waiting room for hours, just waiting for the beeper to go off so you can get the next update. And worrying if that update is going to be a "everything going as expected, no news, so that's good news" or if it's going to be something worse. I could go on, but you get the idea. It hasn't been easy. But it has been worth it.
So that's David's story in a nutshell. Feel free to peruse the email archive (posted March 3, 2011) to kinda follow our rollercoaster from the beginning. Lots of pictures and videos are permalinked on the sidebar, everything from just born and getting an IV to surgery recovery and looking like a Borg, to David smiling and laughing the first time he met my mom's dog Daisy. Enjoy your stay.
