“I left what was meant to be a two minute appointment 45 minutes later and sat in the parking ramp while I broke the news over the phone to Kevin. Again, we question. Again, we worry. Again, we cry. My heart hurts so bad. I want to believe this is nothing, but only time will tell.”
Four Makena Injections in, on June 6 I headed back to my doctor’s office to pick up my next set of injections and be administered one. I drove the 20 minute trip downtown, parked in the parking ramp and made my way up to the office to meet Nurse N for a quick poke before she’d send me home with my goody bag of my next three injections.
But post-poke, things got weird. Nurse N’s non-verbal communication changed as she told me – without looking me in the eye and while keeping her hands busy over paper work and organization – that Doctor H wanted to quick check in with me before I left. We made our way to an examination room I’d never seen before, and I sat there subtly on edge as I waited.
Doctor H walked in with the words, “Oh Mandi, why can’t anything just be easy for you in pregnancy?” I honestly still thought she was just referencing the inconvenience of coming downtown every four weeks to pick up my injections, but then she reminded me of my repeat ultrasound just three days prior to this visit.
We’d been told we needed a repeat ultrasound due to the inability to get all of baby boy’s measurements at our early anatomy scan. But apparently, we needed it because they suspected there may be a problem. In the anatomy scan, they detected an abnormality of the bowel. In the repeat scan, the abnormality was repeated…
Baby boy was diagnosed with an isolated echogenic bowel. In laymen’s terms, he had something in his bowel at a time when babies should not yet have anything in their bowels. What was it? We didn’t know. But what could it mean? It could mean a few things. Echogenic bowels are a marker of both cystic fibrosis and Down syndrome. Baby boy’s case being isolated, we had no other markers to indicate which, if either, it might be, and in fact, it could still mean nothing at all.
I’ve taken in bad news from a doctor before. Coincidentally, almost exactly two years prior to this date, I had one of the most notable doses of bad news in my life when I was told my water broke with my first baby at just 25 weeks gestation. I knew I needed to ask questions while my resource was standing right in front of me, but I was so blindsided by the news. Doctor H pressed forward, and explained my very limited options:
- I can enter into a whole season of genetic testing on me, baby, and even my husband if necessary to foresee our fate and decide where to go from there.
- We can wait it out and go through yet another repeat ultrasound to see if anything changes.
I hadn’t even left the examination room before I knew my temporary answer. I asked Doctor H, “What’s the point of doing the genetic testing now if it won’t change how we love this baby when he’s born?” I wanted to believe things would clear up before another ultrasound, and we wouldn’t need to have used this time to educate and prepare ourselves to parent a child with a disability. But if I’m being honest, I didn’t believe that. What gave me solace was knowing I had enough time remaining to go back on my decision and get the testing if I found I couldn’t wait it out after all.
I stood stoically at the checkout, trying to schedule another repeat ultrasound – one that was not noted on my checkout form. My heart clenched when the administrative assistant asked why I was having another ultrasound and if the doctor did, indeed, order it. I quietly spoke into being, “There was an abnormality…” As tears threatened my eyes, I scheduled the scan, rushed to the elevator and all but ran to the shelter of my van in the parking ramp.
An abnormality. That 11-letter word. Again. Why?
I texted my husband, asking him to step out for a phone call. When he called, I broke the news to him as I broke down. Meditating on this new news and our uncertain future, I drove back to work and attempted to finish my day as planned.
We began the process that night of sharing our news with our inner-most circle – a rip-the-bandage-off approach. We re-iterated our situation again and again for our parents and each of our siblings. Here’s what we know. Here’s what we do not know. Here’s our plan. We’ll keep you updated. By the last conversation I’d become immune to the pain this news was causing me. I was emotionally exhausted. It was time to sleep. It was time to move forward.
In the stats:
Gestational Age: 21 weeks, 3 days
Doctor’s Appointments: 6
Makena Injections: 5