An update!
Very exciting news today: my OB said that as long as my biweekly non-stress tests continue to come back "good" then we don't have to set an induction date (at least until the baby shows he is under duress or until April 6th)!! I may yet get to go into labor naturally. This is something that I was hoping for but not expecting, so I'm cautiously optimistic that it may continue to hold true.
My body is obviously getting more and more ready for delivery as each day passes, but so far I really do feel as great (physically) as could be expected. We're checking a lot off of our to-do list each day too! And we've both been able to prioritize spending time with the boys (together and seperately), trying to squeeze in as much time with them as possible before Frightful comes.
We got to tour the NICU at Tacoma General today and learned a lot more about what to expect in the first days before we (hopefully) transfer up to Seattle Children's for surgery. Seth will get to go with Frightful immediately and likely be in his room with him almost constantly. I will get to visit within 2-6 hours after delivery. Because it is flu season Ezra and Isaac will not be allowed to visit in the NICU (unless Frightful begins to fail) but we were given a sliver of hope that we may be able to coordinate a quick, quick visit a moment or two after birth in the labor and delivery ward. Perhaps more than anything else I desperately want our boys to see their little brother in person before surgery... I suppose this is because he will likely be at his healthiest in the hours after birth and I (selfishly? unrealistically?) want them to get to meet him before he is covered in wires and tubes/in an incubator and also before surgery in case surgery is not successful. If we can't coordinate this then it sounds like we might be able to have Ezra and Isaac wait along the hallway when Frightful is transported from TG to SCH. Otherwise photos and video will have to do!
Tuesday, March 22, 2016
Monday, March 14, 2016
Update #5
On Wednesday I met my new OB, Dr. Baghdadi very briefly. He seems to be such a kind man! Though he only had a few minutes to spend with me, he had obviously read my file and he asked good questions and listened well. Yay! I was actually pretty nervous about meeting him because he will, seemingly, have so much authority over my labor and delivery.
I'm holding out for as natural and late delivery as possible and so far it seems that could happen! He doesn't expect that I will need to have the baby any earlier than March 31st but that I won't be allowed to go much farther than April 6th. So far I'm not being required to have a specific induction date yet! Dr. Baghdadi said we would try to create a more specific birth plan next week at my appointment.
He sent me over to Tacoma General's Labor and Delivery ward directly following our appointment and called ahead to ask them to give me a short private tour of the floor. He wanted me to meet the charge nurse and give her my file and begin a conversation about what my needs will be. It was "fun"? to get to see where I will be delivering ahead of time and it was lovely to get to talk to someone about some of my specific questions regarding delivery at TG.
Thursday I met with Maternal Fetal Medicine for another ultrasound and doctor consult. This time I had a great experience with a different doctor than I met with last MFM appointment, which was actually really encouraging. She gave us several pieces of good news: 1.) this pregnancy is going great - *I* am super healthy! 2.) Frightful was estimated to weigh 6.1 lbs, which is fantastic (42nd percentile for his age) and indicates his body is growing well (besides, you know, that one side of his heart). 3.) the excess fluid seen around his heart two weeks ago is gone (such fluid could have been normal, and probably was since it is now gone, but it was something that they needed to monitor). 4.) his genetic testing all came back negative for chromosomal abnormalities and other causes for concern (plus they got a better look at his face specifically in this ultrasound and his nose and lips look fully formed - they hadn't been able to see his nose and lips in any of the recent ultrasounds because he always has his hands in the way). One piece of possibly concerning news, however, is that this ultrasound did show decreased blood flow. We aren't worried yet (or at least we're not supposed to be) because this could just be due to suboptimal positioning or the fact that he was really sleepy during the ultrasound (the tech doing the ultrasound had to work really hard to wake him up! I haven't had that experience before!) but it is something that now requires me to get another ultrasound next week.
Isaac's THIRD birthday is on Saturday and Seth is taking the day off to celebrate, so we're all pretty excited for a birthday adventure. I don't know what we will end up doing, but it will be fun to spend the day together. I want to soak up this time with Ezra and Isaac before Frightful comes especially because I am not looking forward to (what feels like) the significant time apart we are about to endure.
Friday, March 4, 2016
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!
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!
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