In case you’ve missed my Facebook and Instagram posts, we’ve had a ton of developments since I last shared about losing our babe. When we went in for my 12-week checkup, they talked to us about NIPT, or non-invasive prenatal testing. Basically, they do bloodwork to test for chromosomal disorders. Because I’m only 26 (risk increases with maternal age), it wasn’t anything that my doctor thought was necessary — but insurance partially covered it, so we did it. Those results came back last week, and we learned that the baby was a boy and he showed signs for trisomy 18. This almost certainly explains his encephalocele, which is an answered prayer — trisomy 18 is random and will likely not occur again. Call it terrible luck if you want — our Jed was essentially doomed from conception because of an extra 18th chromosome. It’s a blessing that we did NIPT as well because our fetal autopsy came back inconclusive, so it gave us the only answers we’ll get.
This is obviously a difficult pill to swallow. If he’d been sick because of something we did wrong, it’d be easier to approach our future pregnancies without fear. But we couldn’t have changed anything — as the genetic counselor gently told me, no diet or prenatal pill is going to stop trisomy 18 from happening. I miss Jed fiercely but also know that if he’d lived, he would’ve been an extremely sick baby and almost certainly died within days of being born. I’m weirdly grateful that we didn’t have to experience that trauma — this experience has me wondering how anyone survives infant loss.
“Why Am I Still Pregnant?”
I woke up on June 20 pregnant and went to sleep not pregnant. It’s pretty simple — except I’ve learned that my body didn’t adjust as quickly. I’ve been testing my HCG at home to figure out when my body will realize that I’m not pregnant, but I found myself asking, “Why am I STILL pregnant?” more than once over the last three weeks. There’s no baby, but I still had sore boobs and weird symptoms in the days following the miscarriage. I’m finally getting negative pregnancy tests nearly three weeks post-surgery and about four weeks after we think Jed’s heart stopped beating. But do you see that faint second line up there? That was right before we went to Jamaica. It’s like a gut punch to remember that the two lines don’t mean anything and you’re not actually pregnant.
On People Being Afraid Of Us
So this is tongue-in-cheek, but it’s a real thing. People are terrified of saying the wrong thing to me and Vagner. I get it because I used to be afraid, too — you end up overthinking it and believing that you can’t possibly relate to what we’re going through. Here’s my advice to anyone who has a friend experiencing pregnancy loss: Reach out anyway. If you don’t know what to say, just say, “How are you?” Chances are they’re craving normal conversation — one of the only things that kept me afloat in the days after my surgery were friends who were willing to talk about themselves and share mundane life updates. I needed a reminder that things would be okay and eventually feel normal again. It’s easier to avoid grieving people instead of sitting with them in their sadness, but the only thing worse than being grief-stricken is being grief-stricken and alone.
My Decision To Process Publicly
A lot of people have commended me for my bravery in sharing my miscarriage journey, but I didn’t really have a choice. We’d already announced our pregnancy, so I had to update the entire world immediately so that well-meaning people wouldn’t ask me about the baby. As I’ve continued to process, I’ve made a conscious decision to not share everything that I’m feeling or experiencing. My sweet friend Allysar told me that she journals before she shares public updates about Ayda Grace to make sure she isn’t just venting to the entire world. I’m not big on journaling, but I do talk to my mom or Vagner to make sure I’m not just word vomiting to thousands of people. The overwhelming majority of people are positive, but I don’t want to expose myself to potential negativity when I’m vulnerable.
For Better Or For Worse
I thought I loved Vagner before this tragedy — and I did, of course! — but I have learned so much about him in the last three weeks. This is the first burden we’ve really experienced together, and his steadfastness has literally blown me away. He’s done everything around the house, helped me with work, reminded me to take my meds and eat on the really hard days, and dropped everything to help me. He’s invited me into his grief instead of shutting me out, and we’ve been able to process together. I just love him.
How To Help
I still get this question and it honestly floors me that people care. If you want to help me and VL, here are a few things you can do:
- Support a friend who’s going through the same thing. We’re surrounded, but so many of the women I’ve talked to have no one and it breaks me to think about experiencing this completely alone.
- Pray for us! We want to have healthy babies, but we’re (understandably) worried that it may never happen. We’re asking for peace and the ability to trust in God when it doesn’t make sense.
- Donate to Ayda in memory of baby Jed. Fundraising for our best friends has helped us stay distracted, and if you haven’t given yet, you still have the opportunity to. (Although 300+ of you did give in honor of Jed — what?!)
grace + peace,
Ayana