Playful Rooted

I’m 32 weeks (and four days….but who’s counting? ME. I’M counting.) pregnant now, and to be perfectly frank, I did not think I would get this far. The bleak prognoses we got from so many specialists made me fully believe that I would never enter the third trimester with this little baby. And I’m GLAD they were wrong; don’t misunderstand me. But, as my therapist says, it’s a total mindf*ck. I don’t think there’s another way to accurately name it.

The ups and downs of this experience have been indescribable; not just the amount, but the nature of them. I know there are other life events that shake everything up (marriage, divorce, changing jobs, moving cross-country, etc.), but birth and death are, I think, the two most consequential. So going from believing and accepting and processing the idea that one is going to happen, then is not going to happen, then is maybe going to happen, and then accepting and working through all of the same beliefs about the other….yeah, I really can’t describe it.

Some well-meaning people have told me they understand how I must be feeling or what I’m going through, and while I appreciate the sentiment, I don’t even understand how I must be feeling. I can’t imagine what this feels like, and I’m living it.

(And just for the record, don’t tell someone going through something unimaginable that you understand what they’re going through. Don’t try to relate if you can’t. It’s okay. And please, please don’t offer up the unsolicited opinions of your doctor friend or your radiologist acquaintance or your neighbor-who-used-to-be-a-nurse who has never once met the person or even seen the baby’s scans. I don’t mean to sound rude; I KNOW people are trying to be helpful. I know that. But this kind of help does not help; it harms. Here’s what to say instead: “I’m so sorry. I can’t believe you’re going through this. You don’t deserve this kind of pain. I’m here for you, always. You don’t need to respond. Here’s a DoorDash gift card so you don’t have to cook dinner. Let me know when I can come watch your kids for a few hours while you take a nap.” That’s it.)

I will say, an experience like this definitely illuminates who your true friends are. I’ve never been more grateful for the people who haven’t given up on me even though I have let them down over and over again as I’ve gone through this. There have been many days where the thought of picking up my phone to respond to a text message is simply too overwhelming (and I know how absurd that sounds). But I’m so thankful to those who have stuck around anyway. I actually think that’s the most important part of reaching out to a friend going through something terrible; let them know that they don’t need to respond. And mean it. Because sometimes, as ridiculous as it sounds, you just can’t do it.

Moving on!

An update on what we know now about our little girl:

We’ve had all the genetic testing done that can be performed before the baby is born, and the results have all finally come back. We had one simple test that checked the baby’s blood (and it came back normal, although the doctors were skeptical), as well as three rounds of in-depth genetic testing performed on cells from the amniotic fluid. The amniotic fluid is made of baby’s cells alone (as opposed to her blood cells that are floating around in mine, which could potentially be tainted), so it’s more accurate in analyzing her chromosomes, DNA, and genes.

The analogy the doctors use to describe each test is pretty inelegant — and I think if they knew that Ben has a PhD in Chemistry, they’d probably speak to him differently; for me, they’d stick with this lame analogy — but they must teach it in medical school because two geneticists and a maternal-fetal medicine specialist have each independently used this to explain the tests to us. Behold:

The karyotype test shows the “number of books in the library,” meaning that it identifies how many chromosomes the baby has. There should be 46 chromosomes, or 23 pairs. They were quite convinced that this was a case of aneuploidy, the presence of one or more extra chromosomes or the absence of one or more chromosomes.

It’s not. Our baby’s karyotype = Normal. 46 chromosomes; 23 perfectly-matched pairs.

The microarray analysis shows the “number of pages in the book,” and it can detect some “headings and images,” but none of the “smaller text on the page.” (Are you rolling your eyes yet? I am.) Basically, this one checks deeper into the chromosome material and compares the baby’s DNA to a strand of typical DNA to look for mutations, deletions, and/or replications.

It came back totally normal.

The targeted sequencing panel looks for “misspellings on the page,” so this is of course the most in-depth (read: EXPENSIVE) test; it uses symptom-driven analysis to look at specific genes that could be causing the issues that we’ve seen in ultrasounds. It was a LONG month of waiting for the results on this one to come back. (And did I mention it was expensive? Like, crazy expensive.) But finally one morning, I got the call from the geneticist, my heart beating nine thousand miles a minute, and….

NORMAL. Completely normal.

The specialists are pretty mystified. And it kiiiinda feels good that the first maternal-fetal medicine specialist, who was so sure our baby had a trisomy disorder, was so, so wrong. (I will be writing her a strongly-worded letter.)

Not that we have the whole picture now. We don’t. The karyotype and microarray tests rule out hundreds of conditions, and the targeted sequencing panel rules out thousands more, but (as the doctors love to remind us) we won’t know everything until she’s born. Or even long after she’s born. (What’s getting me through that worry is that we don’t have the whole picture of any child. We don’t even know that one of our boys doesn’t have some underlying genetic issue. Anything could happen at any time, which can be really scary, but therapy has helped me to accept that fact. ……a little bit.) But the picture that we have now looks significantly better than it did twelve weeks ago.

Don’t get me wrong, I still have a LOT of moments of anxiety and worry and uncertainty about our sweet girl. There are still things on her ultrasound photos that I’d love to change, to fix. And the boulder that has camped out on my chest for the past three months is the fact that we just don’t know whether all of these ultrasound findings mean something or mean nothing. We don’t know. And we won’t know. BUT as things have progressed, we also have hope and a little bit of reassurance, and there is power in believing that all will be well.

So now, my shameless plea: please continue the prayers for our baby girl. Please keep praying that her lateral ventricles will continue to shrink, that her brain will grow appropriately, and that she’ll be able to do all the things; that she’ll see, that she’ll hear, that she’ll feel, that she’ll love. We are so grateful for the prayers and the kind thoughts and any positive energy we can collectively put out there for our precious little child. Really, really, thank you.

xo!