After a whirlwind week, Friday was a relatively quiet day. I did call back again to try to arrange the consult with the UCSF surgeon, and the woman who does his scheduling told me that my OB office had sent over the wrong kind of insurance referral--annoying, because I'd already spoken to the OB office twice about this. But amazingly, the woman in surgery told me not to worry, that she would take care of it, and that she would let me know no later than Monday when our consult will be. "I'll call him this weekend if I have to," she said. I'll believe it when it actually happens, but even just to have ONE medical person say not to worry, that they would take care of something felt like a huge relief.
Other than that, there were not too many developments of substance yesterday. I have been continuing to hear from both people I know who have congenital heart defects and also from people who have friends or family members who are cardiologists. One thing I have noticed is that among cardiologists, in general, the more directly they are involved in these cases, the more positive the prognosis. The pessimistic interpretation of this might just be that cardiologists who actually treat these patients force themselves to believe that these patients can do well, because who wants to believe that they are doing something futile, with a lot of suffering along the way? The more optimistic interpretation, and the one I am choosing to accept, is that outcomes for these patients have improved a lot in recent years, and that most adult cardiologists have a more dour view of the prognosis, because they are not likely to be up on recent developments in the field, whereas pediatric cardiologists who work with these patients directly know everything there is to know.
I am aware that at this point, I am making a choice to go through this with blinders on, to some extent. And yesterday was actually a good day for both myself and Iggy. I didn't cry once yesterday, a friend brought us dinner from Whole Foods, and we ate together and talked and laughed and then watched our newest Netflix arrival: the beginning of Mad Men Season 2. It was pretty much a normal night for us (except we were better fed than usual). The baby has been moving around a lot lately, and Iggy bent over to talk to him a few times. We used to talk a lot about things we would do with the baby when he got old enough to do them, like going camping and to Disneyland, and what we were going to feed him and how we would discipline him, and now we've started doing that again, too.
Of course, the problem with choosing denial is that it can be hard to keep reality out. I have been continuing to read everything I can about different HLHS patients, and I think everyone reading here now knows that a lot of the stories are not good. I joined a few support groups on Facebook this week and got direct messages from two different women who had children with HLHS...both of whom died as babies. At this point, my healthy sense of denial tells me that these women are not typical, that most HLHS babies do make it, that the reason why these particular women chose to reach out to me was as a way to deal with their own grief.
But you know, denial is really not so bad. It's a powerful coping tool. I know that every parent worries...so many terrible things can happen to kids: SIDS, cancer, accidents, being victimized by someone. Our anxieties may be far more rational than most parents', but the thing is, going through life constantly thinking these things will happen to you is no kind of life. So, we choose to believe that our son will survive his surgeries and do well, that he will have a happy childhood, that his surgically reconstructed heart will give him a good quality of life into middle age, and that at that point, he will have more good surgical options that can add another 20 or more good years to his life. If we are proven wrong, we'll deal with that when it happens, and not before.
2 months ago