Update #4

It seems as if it's been a slow week or two, but that really isn't true when I stop and think about it! We haven't had as many appointments, so I suppose that's why I feel that way, but we (Seth and my dad in particular) have been very busy moving. I think we will officially and for once and for all be out of our old place and turn in the keys tomorrow (or by Monday at least).

On Wednesday we got to meet Dr. Nuri, the cardiothorac surgeon who will be performing Frightful's surgery (if he's a candidate). I am ridiculously new to talking with doctors and surgeons so I have very little comparative experience upon which to base this assessment, but I was so impressed! He was so very kind and thoughtful and patient and, of course, a wealth of information. Dr. Nuri spent an hour and a half explaning the surgeries and after-care to us and I now feel like I finally have a better idea of what to expect. I had a completely incorrect understanding of the Norwood proceedure (surgery #1 - which hopefully happens week one) and of the Glenn proceedure (surgery #2 - which hopefully happens at 4-6 months of age). My incorrect understanding was that much of what will actually happen in the Norwood would happen during the Glenn, so I'm now feeling a bit overwhelmed at how intense the Norwood proceedure is for such a small baby, but I am confident that Dr. Nuri and Seattle Children's will be the best fit for us and give Frightful the best chance of survival humanly possible. It is certainly a very complicated and intense proceedure and it involves a great deal of risk, but SCH has a fantastic sucess rate (13 of 15 babies survived the Norwood at SCH last year!!).

Yet again I was assured that the rest of this pregnancy and my delivery ought to proceed quite normally and that I can (and should) deliver as naturally and as late as possible. I meet with my new OB, Dr. Baghdadi, next Wednesday and he will be the one who apparently ultimately gets to decide on an ultimate induce-by date. I also have an appointment with Maternal Fetal Medicine for what I believe is our final ultrasound next week and they'll give me the final "sign off" on my pregnancy/maternal health. And then the week after that we have some hospital tours scheduled!

Dr. Nuri told us a bit more about the first day or two after birth. He expects that I will get to see and perhaps hold Frightful for a minute or two after birth but that he will then be taken away for a bevy of assessments. He will get an echocardiogram and several ultrasounds (of his brain and liver in particular) within a few hours of birth and within an hour of birth he will be placed on several medications. Babies with this condition are almost always at their healthiest for the first 1-2 days after birth so this will be a time of assessment, and apparently, a good deal of consultation between a large medical team to determine Frightful's eligibility for surgery. It looks like he is a candidate so far, but we won't know for sure until a day or two after birth. If he is we will transfer up to SCH and have surgery on about day 4. He will then have a minimum 4 week stay in their CICU and then, Lord willing, get to come home until surgery #2 (though this will be a very tenuous time of life for him and will require a great deal of care from us).

I will probably try to write up an explanation of the Norwood and some of the other medical proceedures Frightful will immediately undergo, if only to make sense of them in writing for myself. But I don't want to overload this blog post will too many details!