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What It Was Like Being Pregnant With Undiagnosed Chronic Illnesses

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My daughter will be 5 in January, so it has been quite a while since I was pregnant. Still, even with this much time removed from the experience, reflecting on it is admittedly difficult. I might be missing a fact here or there, but remember I am just trying my best to recall hard moments from the past that I mostly blocked out. I wouldn’t even be attempting to share them, except for I feel passionate about being a voice for the chronically ill community, especially chronically ill mothers. My pregnancy story is an essential first part of my chronically ill parenting journey.

Pregnancy was a very hard time for me physically. I was not yet diagnosed with Chiari malformation, generalized hypermobility syndrome or postural tachycardia. So I thought I would have a normal, healthy pregnancy. My mom loved being pregnant, with both me and my younger sister.

I decided to take a pregnancy test because I was so sick. I vomited basically straight for an entire week, which is super fun when you’re trying to move into your first apartment with your brand new husband.

We went to the store for some groceries after first moving in. After beelining for the store bathroom to vomit once again (so glamorous; I am way too familiar with too many toilets in too many different bathrooms), I decided to buy a pregnancy test, just to be safe. Both my husband and I were sure it would be negative.


I took one. It immediately turned positive. Took the other. Same result. My eggo was preggo (“Juno” reference).

We took it in stride, and were excited to be new parents, despite it being a surprise. We announced to our families, who were super excited too (first grandbaby/niece or nephew!). We decided on a girl name (that we had actually decided on when we were just dating) and, after much deliberation, a boy name (which was much harder). We started buying tiny, gender neutral clothes (I got a job at a children’s consignment store during that time, very part-time between grad school classes, so it was all very tempting!).

But despite all that joy, I continued to be so, so sick: my entire pregnancy.

The throwing up was initially the worst. I threw up from “morning sickness” multiple times every day through about 30 weeks, when the morning sickness seemed to subside but was replaced by awful acid reflux that still caused me to throw up multiple times a day. I didn’t get a break until a bit after I’d given birth.

Around 13 weeks, I had extreme cramping and bright red blood. I rushed to the emergency room, and after being observed for several hours and having an ultrasound, they determined it was a “threatened abortion”: scary words! Basically, it could have been a near-miss with losing the baby, though they couldn’t be sure. They put me on modified bedrest for several weeks until my OB cleared me.

I ended up in the hospital again with awful back pain and contractions. This time I was admitted. They monitored me, ran more tests and gave me my first series of shots to stop early labor. This was the first of three times I would end up in the hospital for suspected early labor and have to receive those shots.

I was put on modified bedrest again all through winter break, so basically the entire month of December and almost two weeks into January, until I reached 37 weeks. I remember laying on my apartment floor a lot on a sleeping bag, groaning in agony as prodromal labor contractions rippled through.

At 37 weeks, I was finally allowed to move around some: difficult to do when I was in the amount of pain I was in. But ultrasounds and tests showed that S was growing well, that none of my pain or illness seemed to be affecting her in any way, and likely if she came out at any moment that time forward she would be a healthy full-term infant who wouldn’t need a NICU stay (important, because our small city hospital didn’t have a NICU so she would have to be airlifted to a large hospital in Columbus with a NICU).

So when I got that 37 weeks cleared, I tried my best to walk as much as I could, which is the advice my doctor gave me: “walk that baby out of you.” It was so weird from working so hard to keep her in to actually wanting her out.

Part of me felt guilty for how urgently I wanted to give birth once I got the 37 week OK to be off bed rest. I heard a lot of (not specifically to me, but in society) “let them cook as long as you can,” “the baby will come when the time is right,” “your body knows best.”

But here’s the thing: through my entire pregnancy, I felt as if my body did not know best. It made me feel violently nauseous every day, and expelled most things I attempted to eat. It was in so much pain I struggled to sleep, pretty much the entire pregnancy through. And with the “threatened abortion” on my mind, I felt like it didn’t know much about being pregnant, either. Of course, it wasn’t my fault any of these things were happening, but it had definitely ruined any trust I had in my body.

I had been having prodromal labor contractions. Prodromal labor is actual labor, different than Braxton-Hicks, and the contractions can be very painful. But they are barely productive, which is why it took weeks for me to go from a 2.5 to a 3.5 in dilation.

I walked for about two days as much as I could: which admittedly was not much. I had to take many breaks to lean on things, and at least one to throw up. It felt like a marathon just to walk around my apartment complex. I would walk a bit, then return to writhing on my apartment floor. It was all very glamorous.

The day after that, by mid-afternoon, my stomach literally felt hard. My doctor was out that day, but instructed that if it continued feeling like that into the evening to go to the hospital.

When I got to the hospital, I was about 3.5 cm dilated… I’d been very slowly progressing from a 2.5 for weeks. They monitored me for a while, and I was having contractions (the same contractions I’d been having for weeks!), but they were unproductive, so they sent me home after a few hours of monitoring: but the triage nurse said she wouldn’t be surprised if she saw me again very soon.

I had a follow-up appointment with my doctor the next day. She confirmed everything that L&D had said, and also that she believed I would probably be in productive labor very soon.

Well, both my doctor and triage ended up being right. The day after my appointment, two days after triage, after a day of walking as much as I could stand (so like around my apartment building and a parking lot’s length), the contractions started feeling different, more intense. I stayed home as long as I could tolerate: I took a bath, I was able to fall asleep, but I was awakened by the most painful series of contractions I’d had yet. My mother-in-law knew my screams meant it was time to go (she ended up visiting that day anyway: fortuitous timing), so she, my husband and I all drove to the hospital (and over a ridiculous number of speed bumps at my apartment complex, each one causing me to yelp in great pain).

When I reached the hospital and got up to triage, I was still only at a 3.8, but after about half an hour of walking the hallway I was over 4 cm dilated, the amount that it took for my hospital to admit me. It was officially go time.

Compared to the 37.5 previous weeks I was pregnant, the 16-ish hours I was in active labor were surprisingly OK. I had planned to have an all-natural birth and to not have an epidural, mostly because that was what my mom did. But after laboring in the shower for a while, the doctor offered me a shot of medication to help the pain go away some so I could sleep. They did warn me that the second dose often wasn’t as effective.

I was able to sleep through the night until about 9 in the morning. My labor plateaued at 6.5 cm, so my doctor came in and broke my water. That’s when the contractions kicked it up into high gear. They gave me a second shot, but it didn’t do anything. I finally agreed on the epidural.

The surgeon came fairly quickly and I got my epidural, and looked forward to the pain relief. It hadn’t kicked in yet about 10 minutes later when my doctor came to check on me. To her shock, and mine, I was somehow already over 9.5 cm dilated. It was time to push.

The epidural did not end up helping at all. Pushing was excruciating, and after one push, I yelled that I couldn’t do it. My doctor laughed, told me it was too late and her head was already out, and told me to push again. After two pushes, she was out like a cannonball. Compared to the rest of my pregnancy journey, I got off easy with pushing.

The next few minutes, while they stitched up my second degree tear, are blurry, but I do remember holding her for the first time after that and crying. She was mine, my baby. And after all that work, she was utterly, totally perfect (even though her face was bruised and her nose was smushed in, making her initially look a little like Voldemort).

I am so glad that from all of it, I had my daughter. The journey to give birth wasn’t easy, and my health has presented many problems since as well. But I wouldn’t trade it for the world. On one hand, I know it is important for me to be truthful about the painful journey it took to have my daughter, and the daily pain I’ve been in since.

But on the other hand, motherhood, with all the growing pains and the learning curves and the difficulties, has been a beautiful gift. I love being my daughter’s mom, and I love the creative, inquisitive, scientific 4-year-old (who has looked nothing like Voldemort since she was a day or so old) she has become. Every time I threw up, every hospital trip… it all led to the moments I get now, the relaxing evening spent laying in bed together as she draws and we talk about everything under the sun. It all led to this.

This story originally appeared on Writer Kat.

Originally published: November 15, 2018
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