Guest Post! Jess on Pregnancy & Infant Loss Awareness Day

October is awareness month for a number of diseases and causes, however, today is a particularly important one to us. Jess and I share just about everything with each other, so it was natural for us to confide in each other our fears about dealing with pregnancy, and everything that accompanies it, while managing autoimmune issues.

When Jess and Chris got pregnant, I was obviously thrilled to be Aunt Kate! But unfortunately, pregnancy for Jess came with a number of complications. I held my breathe every time she texted me during Cam’s pregnancy fearing something was going awry. Thankfully, he came out perfect, however, this is not her only story. While we don’t know the exact correlation between undiagnosed autoimmune disease and pregnancy, it is definitely worth investigating. Read Jess’s story below.


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Hi everyone! I’ve missed you all. Since we talked last, my kid has grown and somehow become nine months old. Nine months old is almost a year, which is almost college. HOW?! Cameron now crawls, stands, says “dad,” “dad-dy,” and “hi,” but mostly . . . “dad.” Insert eye roll because I grew him for nine months and I can’t even get a “ma.” I joke because I actually think it’s the cutest thing in the world when he says “dad,” and I find it hilarious when he calls the dogs “dad.” By the way, before I had a baby, all of these milestones meant absolutely zero to me when I read about them on Facebook, etc. So if you’re in that boat, just take my *unbiased* word for it that my kid is a highly advanced super-genius.

But Cam is not my only child.

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Here’s where things take a turn for the awkward if you’re like a lot of people who don’t like to talk about other people’s grief. Someone came before him. Actually, two people came before him. They were twins and they were…they are…my children. And I never got to meet them. Or know whether they were boys or girls. All I ever got to do was grieve them. Today is Pregnancy and Infant Loss Awareness Day. And here I am, trying to raise awareness for something I never thought I would know anything about.

img_9799I found out I was pregnant in January of 2016. We had taken a trip to NYC for New Year’s Eve to spend some quality time with best friends. I felt like crap the whole time. I assumed I picked up a stomach bug, never considering that I might be pregnant. It wasn’t until we returned home and I still had a “stomach bug” that my husband brought a pregnancy test home for me. I took it just to rule it out. Except, it was positive. I can remember the pajamas I was wearing when I was standing in our bathroom staring at those two lines. My stomach was somewhere between my heart and my throat in the best way. I was growing a person. That is absolute magic. I took five more tests to confirm (I’m hard to convince, ok?) and then we cried, jumped up and down, cried some more and smiled for 48 hours straight.

img_9804The next few weeks were a blur. There was a lot of talking to my belly, planning, daydreaming, and name-choosing. And then…there was a lot of bleeding. I won’t get too graphic here but you know when you just know something is wrong? I just knew. I was having dinner with my in-laws when it started. I had to tell my mother-in-law in one breath that I was pregnant and I was bleeding. We had been waiting to tell our parents until we had a bit more confirmation that all was well. And now, all was not well. It was scary and bad and wrong. I will never forget the way that my mother-in-law held me in that moment. She knew it was bad, too, and she didn’t need to say anything.

Only the next morning, when I went to my Ob-Gyn for a confirmatory ultrasound, there was a heart beat tapping away in my womb. I can’t even describe the noise that came out of my mouth when my doctor said, “There’s a heartbeat.” It was like he was telling me that my heart could start beating again. But then, a week later, the worst news: no more heartbeat. My chest hurts just looking at those words. No more heartbeat.

There was nothing we could do. My prayers to God to restart that baby’s heart went unanswered. My grief-stricken thoughts that the doctors were wrong were not true. The high-tech ultrasound that I received a few hours later at the hospital did not find a baby with a beating heart. Instead, it brought news that doubled my impossible grief: there had been two. Two babies, two heartbeats. Monochorionic diamniotic twins.

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There’s no way to segue from that, so I’ll just say this. What I’ve learned about the risk of miscarriage associated with untreated thyroid conditions makes me want to vomit, because I didn’t know there was anything to treat at the time and I could bury myself in the what-ifs. My husband reassures me that it may have been totally unrelated … but we’ll never know.

I struggle with how to “end” this post because there isn’t an end to the story. It’s still ongoing. There’s no big takeaway or life lesson here. At least not yet. It’s just my story. And there are so many more just like mine. Grief is different for everyone. The way that I grieve the loss of the twins is totally different than the way that my husband does. Some people want to talk about their grief; others do not. Some people consider a miscarriage the loss of a child; others think of it as much less significant. For me, the idea that no one in the world would ever know of my twins’ existence is heartbreaking and so I have chosen to share my story. There was a reason that they existed for that short time and maybe one day I’ll know why.

I went on to become pregnant again and successfully carried my son to term. img_9802The joy he brings to my life is something I never could have understood before he existed. But I’m allowed to grieve the loss of our twins while also moving forward with my life. I’m allowed to cry every time I remember waking up from post-d&c anesthesia with tears streaming down my face and a nurse holding my hand saying, “I know you’re sad. I am so sorry.”  My son is an absolute blessing. But it’s ok not to be ok.  

Sending my love to everyone out there who identifies in any way with Pregnancy and Infant Loss Awareness Day.

 

Until next time,

Jess

 

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