Two (or three) Little Hearts

We had a great trip last week to southern Illinois, for Thanksgiving with my extended family. Both my parents grew up in and around Carbondale, Carterville and Crainville. My folks knew each other in high school and got together and got married when my mom was 23/34 and my dad was 26/27. I was born in Denver, CO, but my folks moved away when I was two months old and I’ve lived in North Carolina since I was about 3, so that’s home. As kids we visited once or twice a year; that has decreased for me since college, but we re-established Thanksgiving visits last year. Simon had a blast with all his older (second) cousins, and there are a lot of boys among them. I depend on him coming home with a new host of new karate chops and items for his Christmas list. David and Chloe have a special affinity for one another; she just had her 2^nd birthday and on the two visits we made last year, Chloe was always chasing after David, with hugs and kisses.

(Simon, David, Chloe)

David did have all his medical and Early Intervention appointments week before last. The main one (nervousness- and expectation-wise) was his sedated echocardiogram at the hospital in Asheville. We managed to get there (nearly) on time, and after a miserable/torturous IV got started, little guy was out. Dr. Jim, one of the other cardiologists in the pediatric practice, was there for the procedure but we only saw him in the hallway and then he left before they brought us back from the waiting room. Dr. Aaron called the next day with the results we’d hoped for – David’s pulmonary pressures (the blood pressure in the pulmonary artery leading into the lungs? We’ve never had a 100% grasp of this situation) are still elevated but only mildly so, He still has some leakage in the (left-side) AV valve, but it is slight and not of concern at the moment. So, David stays off the supplemental oxygen (this was being used to treat the pulmonary hypertension, to keep the blood vessels in the lungs nice and soft/pliable) and we don’t have to go back for a year. I need to call Dr. Aaron back after the holiday; I totally forgot to ask him if we can go ahead and turn back in all our home health/oxygen equipment, and if so we need an doctor’s order. That’ll be a big day, to get all that stuff out of the house – in time for Christmas decorations?

It’s slightly odd to think about going a whole year without an echo. For a while Dr. Aaron and his two partners were really a fixture in our lives. I had two fetal echocardiograms when I was pregnant with David; he had probably 40 or 50 during his 13 weeks in the NICU, 4 – 6 more while waiting for the surgery, then probably 7 – 10 in the hospital and 6 – 8 since then. He was on oxygen continuously for more than a year, then at nighttime for almost another year. He wore a pulse oximeter at night at home for over a year, aside from all the monitoring of various types at Mission and Egleston. So long story short J we’ve had a lot of cardiac intervention. In discussing the one-year time frame, Dr. Aaron reiterated that we are (way) out of a critical phase – his repair is holding up well and anything that happens with the pulmonary pressures or the valve leakage will happen slowly, nothing acute. There is another risk factor to watch, something specific that kids with an AV Canal repair are prone to develop, but not everyone does and again, it’d be a slow process.

A couple of days after this I had a pretty sad conversation, with someone I’d only met a few weeks before. We were discussing David’s appointment, and I mentioned the, “I only saw Dr. Jim out in the hallway.” She told me that a number of years before, she’d given birth to a son who suffered a massive stroke shortly after birth. Due to the location of the blood clot, no blood flow was getting to his brain and they knew he wouldn’t live. He was kept alive (on a ventilator, I guess) for about 7 hours and the mom’s only contact with Dr. Jim was in reference to “getting his heart strong enough to donate.” I have no idea what this would include; steroid injections maybe? I didn’t want to press her for details, but I guess after that amount of time they figured they had it as good as they were going to get, and they removed his heart and he died. Sadly the baby who received his heart only lived a few months longer and then he died too.

… …. … (nothing much else to say at the moment) … …. ….

This was all more than ten years ago, and she didn’t seem to be too bothered by talking about it, but … her memory of her experience with Dr. Jim seems to be a good one, and I suppose that’s the ultimate definition of a good doctor – someone who can be calm and helpful and empathetic even in the middle of what has to be one of the most horrible situations in the world.

So, David’s doing great and watching him toddle/nearly run around finally has me convinced he’s not a sick little baby anymore, he’s a big strong guy who is in fact out of the acute phase. Multiple Thanksgiving thankfulness-es for both these boys but especially this guy.