Dear Diary,
Last night right before bed I made some comment about quarantine life and my hub said “it is what it is”.
That phrase may just recall the late 90s for some people, but thems are trigger words for me.
The last time in our lives when my hub and I uttered this phrase to each other daily, passing it back and forth because it encapsulated some of our more untouchable fears when we couldn’t state them directly, we were waiting on the outcome of my first pregnancy.
Half way through that pregnancy, at 25 weeks, our baby-in-progress was diagnosed with a potentially lethal cardiac problem. The high risk OBs that hastily replaced the gynecologist I’d seen for years, predicted our baby would die. Likely with this heart problem she’d die during the pregnancy, but if by chance she managed to survive her gestation, she’d likely succumb during the birth. Birth puts an incredible strain on a baby. Blood flow reverses in the heart. Lungs have to expand. Transforming from a fetus to a baby is an enormous undertaking.
Our condition was exceedingly rare. It’s estimated that 120 of the almost 4 million births a year in the US will experience this mistake. The working theory at the time was that my immune cells attacked cells in the fetal heart, mistaking them for a threat. They didn’t destroy any ol’ cells, but focused on one of the two cell bundles that set the heart rate, the AV node.
The fetal heart rate dropped from 120 bpm to 50 bpm in a week, while we watched, helpless. We couldn’t deliver her because she’d be a preemie with a serious heart condition. If we left her in utero her heart could fail at any moment. We were trapped.
We lived with the fear of her imminent death for twelve weeks—2 and a half months. We lived every minute of every day for those two and a half months. I tried to establish a routine that distracted me from the very real possibility that her heart would stop and I wouldn’t know it until the next ultrasound. I went for walks, I spent hours working, I watched TV with my husband at night. Lather, rinse, repeat. For 75 days.
When I walked around the city I’d check behind me to make sure I wasn’t being followed by anyone even remotely resembling the grim reaper. Spotting someone in a long black coat was enough to make me change my route.
Being trapped with the fear of our future daughters death is an experience that shares some things in common with the pandemic. It was a daily struggle in which I had very little control and few opportunities to change outcomes. It required enormous patience and a new focus on the ‘now’ that had never been attractive before and ran counter to many facets of my personality. Like most people, I don’t want to wait for results. If something bad is going to happen, I’d rather know sooner than later. It required a faith in our medical team, even though we all knew that there was scant medical knowledge to be had.
My pregnancy lasted for 37 weeks at which point our doctors decided to “get her out of there”. Contrary to prediction, she survived her birth–although she failed the apgar immediately and was whisked off to the NICU. She survived the open heart surgery performed two days later to implant a pacemaker. And was released from the hospital after nine days.
She will turn 18 in May.
That was one of the most stressful experiences of my life. I tried to carry on a semblance of normal life while also holding tightly to my fears for what felt like a long stretch of time. I have been haunted by that trapped feeling in the years since that experience. It pops up in unexpected places, and takes some time for me to dig it out. But here we are, still living our lives.
Now we find ourselves waist deep in the uncertainty of the pandemic. Once again I’m trying to take it one day at a time. If my family wakes in the morning and has no symptoms, and we all go to bed without said symptoms, I’ll take the win. Lather, Rinse, repeat.
Our reality bears no resemblence to what we’d planned for this spring, but, It is what it is.