I’ve been putting this off, because I just really didn’t want to deal with writing it, but given that my next appointment is tomorrow (actually in about 9 hours), it’s probably time to quit procrastinating. Our last ultrasound was about two weeks ago, when I was 28 weeks along. And as you might suspect from my reluctance to write about it, the results were not what we were hoping for. The ventricles were approximately 24mm and 36mm. 24 isn’t so bad (though it’s not good), 36 is. The catch, however, is that she had flipped out of breech (normally a good thing, less so in this case), so her head was very low and they had a really hard time getting the right angles for the shots they needed of her head. Also, it’s not a huge difference, but we were on a different ultrasound machine with a different tech, so the margin of error was a little higher. But based on the fact that they never got a shot that was straight on, and that the doctor said it would be very unusual for her ventricle growth to be that uneven, those numbers are actually probably something more like 26-28 and 32-34. (Note, that is my estimate, the doctor only said they were probably closer.) Which, of course, would be a little better, but keep in mind that last time they were 18 and 21. That’s a lot of growth in a relatively short time (four weeks), especially since she had another six to go for sure (remember they said 34 weeks was the earliest they could deliver, because before that the risks of prematurity would be too great, and she’d be to small to handle surgery anyway).
I’ve read that the increase from one scan to the next is not a good indicator of what it will be in the future. Apparently the growth is not the sort to follow any sort of curve or anything. But I can’t help but do the math. If they grew roughly 6-10 and 11-15mm’s respectively in four weeks, in another six they could be as large as 40+ and 50+, which is well into severe and scary territory. I mean, theoretically, yes, they might stay the same or even get smaller, or at the very least grow more slowly. But it’s scary.
At this point we’re 100% planning to deliver at 34 weeks. I hit that on a Saturday, but we don’t know if they’ll get right on it or wait till that Monday or what. I would expect to make those plans at our appointment(s) tomorrow. Still, her birthday will almost certainly be July 26th or within a couple days of it. Today I had my first steroid shot, which they do to help her lungs, brain, etc mature to make prematurity less risky. I’ll have the second tomorrow (they would have done the first tomorrow and the second on the next day, but that’s the 4th of July so they’re closed), which I am just SO looking forward to. I hate shots, and steroid shots hurt, as it turns out. Oh, and I’m getting my pertussis shot (aka Tdap/whooping cough) as well (speaking of, if you’re family and plan to visit her in the NICU, we’d strongly request you have that one as well), and I may have another blood draw for the standard HIV testing (though I don’t see the point?) so yay for needles. If you don’t like needles, don’t get pregnant.
It was weird though, having the steroid shot, because it was really the first concrete step we’ve taken that really says she is going to be here in just three and a half weeks, for real. And we haven’t even picked out the color(s) for the nursery, or gotten even one piece of furniture for it! Granted, it’s not like she’ll be literally here, in the house, in three and a half weeks. She’ll be in the NICU for probably five or six weeks, give or take. But still, it’s a bit overwhelming.
As for the rest of the ultrasound results, she’s still on the growth curve, though she dropped a bit to 25th percentile overall (they weren’t concerned). Her head is starting to get a bit disproportionately large for her body, just a little, but that’s actually a good thing. It means her brain matter is still growing in addition to the ventricles, so her head is getting extra big to make room for both. We’re actually hoping that it continues to outpace her body in growth.
Tomorrow will be a long day again on appointments. First the usual ultrasound and meeting afterwards with my OB. Then we meet with the neurosurgeon again (same one we met with at 24 weeks), and then with someone from the NICU (not the same one as before). We’ll see how she’s doing (fingers extra crossed for good results on growth), and be able to get more detailed information about what this might mean for her prognosis, as well as a better idea of what to expect from her time in the NICU. I’ve read a bit about micro preemies (born before 26 weeks, which is very scary stuff), but very little about babies that make it all the way to 34 weeks before delivery, which is still premature, but much less so. We have a lot of questions, so hopefully we can get some good answers. Unfortunately, the fact remains that they don’t really have any way of predicting individual outcomes, because they can be so varied, but we can at least maybe find out a best case and worst case. Also, when we met with the NICU guy last time, he said that if things got really, really bad (remember how at one point we were told she would be able to breathe on her own, and her heart would beat, but she would have essentially no higher brain function at all? That’s what I mean), we would have the option to essentially sign a DNR for her, and stop all “extraordinary measures” to keep her alive. Which in a preemie, means there would be a decent chance she wouldn’t make it. As much as I hate to think about it, I also want to be sure that’s an option. If she has no possibility at any sort of actual life, I want to know our options.
So, obviously, this is all big and bad and scary, but it’s not hopeless. For the first few days after the news that she had gotten so much worse, I was really upset and depressed about it. I think it was worse because I’d sort of forgotten, over the intervening four weeks, how scary it really was. I was just thinking it would be about the same, no big deal. So it was an even bigger shock. I was really dreading my showers for a little bit, because I just couldn’t think how I was supposed to go get gifts for and celebrate this baby that I wasn’t even sure was going to survive. But the thing about me is that I can’t stay pessimistic. I just sort of default to hopeful. At first it was just me deciding that I would really regret not enjoying my showers because I was worried, especially if she turns out (relatively) fine, but even if she didn’t. I just decided that the point of the showers was to celebrate this pregnancy, and this baby, and she deserved to be celebrated no matter how short her life might wind up being. And then once I was thinking that way, I couldn’t help but get excited about all the gifts, and that led to getting excited about finishing up planning the nursery, and thinking about reading her the books we got, or her playing with the toys or wearing the clothes. The worry still creeps in (especially today, with getting the shot and anticipating tomorrow’s appointments), but so far it hasn’t been overwhelming.
I’ll admit that the delivering so early was a bit depressing in its own right. This may be my only pregnancy (if her issues are bad enough, we won’t have another because of the added stress), and now I’m losing a big chunk of it. But I’ve found that’s bothering me less now. I had already made my peace with losing my natural birth that I was planning, and not having that excitement of telling Christopher that “I think this is it” and timing contractions to decide when to go to the hospital and all that. But the thought of a natural birth has gotten a lot scarier as I’ve been having all these Braxton Hicks. They are strong, even though they’re not painful, to the point that it’s sometimes really hard to breathe. So imagining that, only stronger and painful, is pretty alarming. Plus, let’s be honest, pregnancy is uncomfortable. My hips are starting to really bother me at night, there are a lot of times that it’s hard to breathe comfortably standing up, my boobs are outgrowing even the new, much bigger bras I bought, etc, etc, etc. Add the inconvenience of the gestational diabetes, and the increasing heat outside making me more and more miserable, and maybe missing out on those last six weeks has more silver linings than clouds, from a strictly selfish point of view.
And Christopher, especially, has really helped with the stress of it all. When I’m stressed, he buys me things. Which makes me sound terribly spoiled (I am), but my primary love language is gifts, so it always means a lot to me. He brought me home a card and a new bamboo plant (the old one died in the move) the day after the ultrasound. It’s “lucky bamboo,” and he said we could use the luck. And he got me a new puzzle, so I’d have something to do that’s not related to the baby. And some other random things, like two crochet books (flowers/hats and toys, both for the baby), and some maternity clothes. But I think the best thing he did was actually something he said. He said that no matter how this turns out, we’ll be closer for it. That reminded me that there’s more to my life than my growing belly and the baby therein. Right now it feels like this has the potential to be the end of the world, and it’ll feel like it is if it goes very badly, but there is more to my world. So I’ll be really, really devastated, but there will still be good things left once I’m ready to move on. Lots and lots of really good things, of which he is the most important. So on the bad, worried days, I remind myself of that, and it makes me feel better. He’s also started wanting to feel her move more, and talking to/about her, and that sort of thing. I think knowing she’ll be here so soon has made her more real to both of us. And also, because we’re both planners, he took me to the store to buy some preemie clothes in case the outcome is good, and he asked me what sort of trip I’d want to go on if the outcome is bad, because we’d need to just get away for a while if that’s the case. It does help me to have a plan, and he knows that.
And to end on a positive note, here’s the latest shot of how beautiful she is!