When I woke up on Wednesday morning, I immediately started thinking to myself "what have I done?" It seemed insane to think that I could do this thing. How on earth could I be choosing to put myself through this? To put Iggy and our baby through this? And honestly, to put our family and friends through this, because I know that this experience is going to affect everyone who cares about us. Wasn't it crazy and selfish to go ahead and have a sick baby, who was going to require incredibly expensive medical care, and whose future could, at best, be described as uncertain?
But somewhere along the way, I guess yesterday, maybe after talking to Dr. Tacy down at Stanford, I turned some sort of a psychological corner. It is still overwhelmingly sad to know that we are all going to have to go through what we will go through, but I now feel like not only am I 100% sure we are making the right decision for us, I also feel like there is a good deal of hope for a pretty normal and happy life for our little family. As I wrote yesterday, it was really great to hear from Dr. Tacy that her philosophy was that it was best to treat these kids as normally as possible. It was also great to hear that she generally felt that the vast majority of these kids have a good quality of life...even some of the really sick ones.
I also spoke to the other contact I had a Stanford last night...this is the friend of a friend who is a fellow with Dr. Tacy. I got to ask her a couple of questions that I hadn't thought to ask others earlier, including what percentage of babies come home from their first surgery with feeding tubes or on oxygen. She said that it was heavily variable from institution to institution, and that some places tried to keep kids in the hospital longer rather than sending them home with tubes, but that at Stanford, she thought about 20-30% came home with feeding tubes, and that about half or maybe a little more than half had some feeding issues. That probably doesn't sound great to most people, but it sounded a lot better than what I had feared. She also said that very few go home requiring supplemental oxygen, less than 10%, which is really good news, because a baby tethered to an oxygen tank is not very portable.
As I think I've mentioned before, one of the really overwhelming things about this is that although I am at a distinct advantage over most parents of children with critical illnesses in that I have a Ph.D. in Biology and thus can speak "medicalese" fluently and have access to pretty much all scientific literature through my work, there is very little published research on this disease. So, I've mostly been reading about people's anecdotal experiences online, but it's hard to get a sense of how "typical" any one kid is.
Another encouraging thing that the Stanford fellow told me is that her gut feeling was that these surgeries would probably last for at least 30-40 years. This is a lot better than what we were told by the UCSF cardiologist, which was 20 years. That's the point at which a heart transplant would be the next (and presently only) option. Of course, nobody really knows, but anecdotally, there are definitely HLHS kids out there 20 years past their last surgery who seem to be doing fine. But again, I have no idea how typical they are, and nobody else does, either, because the studies simply haven't been done and even if they had been done, the surgeries being done now are slightly different from the ones done 20 years ago.
Maybe more than anything, I think it was good to hear good things about UCSF's department from both the Stanford docs I spoke with. Beyond not having to deal with the insurance nightmare, I was really feeling daunted about the prospect of having to pick up and go somewhere else to have our baby and to go through these surgeries. Palo Alto is only an hour away (assuming no major traffic) but that's no mean commute when your baby is in the hospital for weeks at a time. In contrast, UCSF is a place I go every day anyway, because I work there, and when Iggy and I first lived together, it was right across the street from that hospital, and being able to be at home while going through this goes a long way towards preserving that elusive sense of "normalcy."
So, anyway, I'm not sure if what I am feeling right now is acceptance or denial. Whatever it is, it's not so bad. I even managed to sleep through the night for the first time since getting the news, and could even taste my food this morning.
11 months ago