The B Life: Our Journey to Trisomy 13: An Unusual Pregnancy

Our Journey to Trisomy 13: An Unusual Pregnancy



"Let's start at the very beginning; a very good place to start."
Maria, The Sound of Music.

It's been a while. Somewhere, in the last few years, I lost track of the sort of life broadcasting one does on their blogs. Many things happened - Nick and I got married, we had some excellent summers at the Farmer's Market, Nick learned he actually has a severe bee allergy (more on that later), and I gave birth (ish) to our son, Joseph. At some point, I stopped posting here and restricted my goings-on to Instagram - so creep away! - where it was just easier to snap a photo and not have to think too deeply. But now, at the end of what has been the most intense year of my life thus far, I feel the need to share our story again. This time around, I have no rules for my writing other than complete honesty. I'll share, uncensored, because our son is a gift that we've been given. He's not your average kid, and so this isn't your average story.



On January 2, 2017, Nick decided that I needed to see a doctor. I was suffering from sharp, burning pains in what I thought was my urethra muscles. My period was late, but home pregnancy tests had read negative, so I assumed that I had a bladder infection or UTI. As this was the holiday Monday, our regular doctor was not in office, so off to the walk-in clinic we went.

Half an hour later, we were given the news that I was pregnant. I'd like to say that I was one of those women who immediately embraced the "mother-to-be" persona, but in reality I cried. A lot. I did NOT want to be pregnant. I knew my husband wanted kids, but I still wasn't sure that I did. I remember the exact moment the result came in, and I think I turned a shade of white reserved only for apparitions. 

In the weeks that followed, I was sent for my first ultrasound. The pain that had originally brought me in to the clinic was concerning to the doctor who thought that perhaps the pregnancy was ectopic - meaning, implanted on my fallopian tube. As it turned out, the embryo was in the proper place, but the heartbeat was lower than it should have been at that stage in the pregnancy. They suspected the pain was because of some small cysts on my ovaries. I was put on rest and told to take leave from my jobs. This ended up being for the best, as my first trimester was a STRUGGLE. Everything made me sick - hamburger, mashed potatoes, eventually I even threw up ginger ale. 

At about 14 weeks, our little nugget's heartbeat was finally normal, and I was cleared to start doing normal things again. By this time, March was rolling around and it was time to open some of the beehives. I love seeing the hives for the first time after a long winter, so I was excited to be able to take part in some normalcy again.


The second trimester brought more ultrasounds. At 20 weeks, we went in for the long one - the tech took all the pictures, and I snagged a glance at the screen as she put in the gender identification in. We were having a boy. (Although, I didn't tell Nick I knew, instead I kept my mouth shut until our appointment with the OB the following week). The OB also gave us some news we weren't expecting: the radiologist had not reported a nasal bone visible on the ultrasound scans. This was a heavy marker for Down's Syndrome, and so I was scheduled for the genetics clinic at London Health Sciences Centre. We had decided against any of the genetic testing at the 12 week mark of the pregnancy, and so this was a surprise.

The genetics clinic verified what I already knew: our baby did NOT have Down's Syndrome. The ultrasound showed a nasal bone. It also showed that there was an enlarged kidney pelvis, which is common in boys, and so other than a brief follow-up with nephrology, no one was too concerned.

The next 2 months or so were pretty normal. Baby Z was growing well, my appointments were standard, and I was feeling good.

Then June hit. By the end of the month, temperatures were climbing (because we live in Southwestern Ontario, Canada, and our weather only seems to operate in extremes) and so was my blood pressure. I was admitted to Antenatal on July 12, 2017 due to pre-eclampsia. I was immediately put on medication and nurses took my blood pressure like every 8 hours. I was also given meds for the heartburn (THE BEST) and had ultrasounds done every other day to make sure Baby Z was not in distress.

On July 18, after a few days of my BP spiking again, the OBs told me that they needed to induce me. My pressures were too high, and Baby Z was now at the point where they were confident he would be okay to be delivered early. In all honesty, I wasn't concerned that Baby would be compromised as the hospital in which I was admitted has one of the best NICUs in the province. I was concerned because, as a first time mom (who hadn't been sure she every really wanted to be a mom), labour scared the crap out of me, and not only that, since I was being induced 7 weeks early, they had some extra procedures that needed to be done in order for me to actually dilate.

Now, as I write this, I realize there is a lot from the birth I don't remember. It's funny how memory works that way. As far as labour goes, I don't remember much other than I wasn't allowed to eat or drink (because pre-eclampsia meant I had oxytocin and magnesium sulphate kicking around in my system). I had blood in my urine. AND I DIDN'T DILATE! Not at all. 

And to be honest, since I wouldn't dilate, induced contractions never made it past the stages of uncomfortable menstruation cramping. Still, at some point in the early hours of July 20 (and I mean like 1am early), I had to have the other thing I dreaded: the epidural. 




Just to be clear, I have nothing against pain medication. Was I worried about potential side effects of the epidural? Heck no. I was scared of the huge a$$ needle that was going into my back. And my poor (and very brave and caring) husband had to hold my hand. The first position they wanted me in (hunched over with your head between your legs) wasn't happening. The second they sat me up, all the blood rushed and I got clammy and probably would have passed out if Nick didn't inform the nurse and anesthesiologist that there was no way I was getting the epidural in this position. 

Route # 2 was way better. The epidural guy had to completely re-set up, but I didn't care. So, on my side rolled into a ball was the way that giant ass needle went in. I closed my eyes while Nick held my hand and neither of us watched. 

When it finally kicked in I slept. I was in giddy-la-la-land where all the world was good and I was happy to not feel anything at all. 

At about 5am on July 20, the OBs came in and told me that it was finally time for a C-Section because Nugget's heart rate was compromised. I remember thinking (and probably saying out loud) "finally". I had no objection to a section. I would have requested one anyways because my tolerance for pain is so low to begin with that my half-assed experience with induced labour that never really ended up being labour was more than enough for me. In hind sight, I'd do the section again, in a heartbeat. 

And so, around 5:30am, they wheeled me in. It was baby time.

...to be continued.


6 comments :

  1. I'm so glad you are sharing your story here! I've been following along on Instagram and have really enjoyed watching your Superhero Littleman grow. But I'm glad you're blogging about it, it helps process everything. BTW - I can relate to the not feeling excited about being pregnant. I was in the same boat, but grew to love being a mom.
    Beth
    Coffee Until Cocktails (formerly Beth Next Door/Bethie the Boo)

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  3. Great writing style! Your anticipation of the pain was ME exactly with my first labour (fear of epi needle not the side affects ha) Looking forward to the continuation of your story!

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