You might think being on bedrest is the perfect opportunity to blog. That turns out to not really be the case for me. I half-write and then back off of posts quite regularly. Some of it is the public vs. private aspect of it--how much do I want to share? Some of it is that I don't quite know what to do with this blog post-birth. Assuming one or more of my babies makes is...how much of their life do I have the right to blog about? And some of it is that I'm so sick of myself, I just don't want to hear anymore.
But two big things. First, I'm very frightened about where I am in my pregnancy. I did not feel any rush of "viability" joy at all. Probably because, despite the 24-weeks notion, there's no real point at which you can say "yes, this baby will survive". Depending on your NICU and...well, whatever went on inside you and inside your baby, you can opt for "heroics" or "comfort" as early as about 22-23 weeks. And more or less, after 28-30 weeks, mortality (though not necessarily morbidity) does drop significantly. But there are no promises. As thankful as I am for NICUs, I don't want my children to have to spend any time, any time at all in them. And that right there is the reason I wasn't just tickled pink at twins. Because NICU is likely, flat-out. Not inevitable, but likely. And the place where I am now...it's just scary.
I don't think I could make rational decisions about my babies' lives. I am very opposed to prolonged, unnecessary suffering. I am also very opposed to not doing everything, every single damn thing I could possibly do, to get my babies home alive. I don't know where the balance tips on those, and I don't know that you ever truly can, in that moment. I am trying to just focus on day-by-day, since thinking about all this beforehand does no good. But just like I couldn't get beyond my fear of miscarriage, I find myself unable to get beyond my fear of stillbirth, of babies dying in the hospital, of months and months of NICU time and just not knowing, of feeling responsible for life-long problems caused by prematurity, of everything.
I could seriously use a fucking drink, if I do say so myself.
The second issue, which is directly tied into my first, is my older sister and her pregnancy. She's never made it a secret that she would terminate a baby with T21. At all. And frankly...in the case of my sister, who in all honesty values people based directly on their intelligence (as measured by the school system and IQ charts, no room for emotional or physical intelligences), this is probably the best decision. No child, special needs or not, needs a mother who will never look at them without seeing something "sub-par". She went in for her NT scan and they were unable to get the measurements, and she is very upset. She's trying again (tomorrow maybe? I am trying to avoid hearing the details of all of this), and if they can't get it, they'll amnio at 16 weeks.
But the part that just...pisses the hell out of me is that she has no worries about T13, T18, or even cystic fibrosis, for god's sake. She and her husband turned down CF screening!! Two white people, unwilling to get a blood draw or cheek swab, but totally willing to risk their child's life for an amnio based on age-risk alone, for the "mental" aspect, not even the physical aspects, of T21.
It just makes me so upset. Driving home from my "Atticus is abnormal" appointment last Monday, I just kept hoping over and over that he was not in any pain. That please, whatever was wrong with my boy wasn't causing him to suffer. (I do not believe that 23-week-old babies do not feel pain. They exhibit so many other reflexes, and kick me when I poke them...I don't care what the doctors say--they have to experience pain, even if they can't show us.) And my sister is telling me she doesn't want to tell her work because "there might not be a baby (by choice)" if the baby doesn't live up to her ideals, without worrying about if the baby is or will suffer from something CF, for fuck's sake.
I am pro-choice. And I do think terminating a T21 baby, in my sister's case, is probably the right decision. But I am so incredibly pissed off at her attitude about the whole thing. It's so clear that she's not thinking about what is best for her baby, and it just...infuriates me.
It's so hard to be in my place, reeling from what turned out to be a false alarm while unable to rest on the "everything will be completely fine" lily pad, while having my sister call me to complain about how they couldn't do the scan and how it'll take her "so long" to know if she can get excited about a baby or not. Oh, and she still doesn't have even the slightest bit of morning sickness, which she constantly mentions as I dissolve Zofran in my mouth.
Blech.
5 comments:
It sounds like it would be very hard to listen to your sister without getting upset. Sorry you are stuck on bedrest and having too much time to think. xx Hope those 2 little boys are growing strong.
You are being VERY tolerant of your sister. I think if my sister continued to drive me crazy I would just see less and less of her. The fact that you are still supporting your sister says a lot about YOU :)
I know it is impossible to not have NICU anxiety, but the truth is that it is the MINORITY of twins that end up in the NICU not the majority. Just remember that twins are full term at 36 weeks, they mature faster than singletons, and that the average birth weight for a twin is 6 lbs! Just keep saying to yourself 'law of averages, law of averages'. Hang in there! :)
I really wouldn't blame you if you cut your sister out for the next several weeks. You wouldn't be expected to listen to all this shit if you were still doing IVF. I fail to see the difference. It's not your problem and it's not like you guys have this awesome friendship you want to maintain. Don't let her weigh you down in this important time. Just ignore her for a few weeks.
I really feel you on your 1st concern--the NICU, you are a nurse and I am a nurse I did my pedi rotation at a very good NICU and it was scary and depressing. I really didn't "relax" in regards to viability until I reached 30 weeks. I hope those 2 little babies hang in for as long as possible.
I really really feel for you about the NICU time and the worry of prematurity. I was terrified of the same... but even though I avoided the preterm birth fear becoming a reality, we still ended up with NICU time. One really can never tell.
And it was hard, especially with another kid at home, but it too did pass, and it makes me appreciate the whole kids at home circus so much more. And while my kid turned out to be a whole different (much less rageful) kid when no longer regularly used as a pincushion for IV placement and blood draws (he was "hard to access" in the extreme, and also kept rejecting his IVs), he won't remember any of this.
I am hoping very much that you are one of the twin moms who keeps the kids gestating until the very end and that Damien will be huge and strapping and healthy and Atticus is only the amount littler that one would expect from a smaller baby in equally robust health, and that their exit is very non-dramatic and full term or close thereto. Lots of twins do manage to do that... and NICU time can be limited to very brief observation or not be required at all.
As for your sister: argh. Is this your doctor sister, or another one? If she's not the doctor sister (pleasepleaseplease I hope so), I think some or most of it might be rooted in plain ignorance. My primary concern with the NT scan was T13 and T18 (and anencephaly), but everyone we talked to was totally confused by this because they totally don't think beyond T21. At all. And these are people who were genuinely devastated to hear my description of T13/18 and anencephaly... they just didn't know that these things were even in the universe of possibility, much like all the students in my genetics and society classes. I hope your sister is in the same boat - she just doesn't understand what the possible outcomes are.
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