Book, musings, NICU, prematurity

What’s next?

Has it really been two and a half years since I’ve posted anything to this blog? I purchased the domain for this site several years ago, I when I was writing regularly. It’s a small yearly fee and it makes the URL easier to remember and share. My domain comes up for renewal every October, and for the last two years it’s been an unpleasant reminder that I’ve neglected something that was once a big part of me. Writing has always been my coping mechanism for life’s Big Things. And I think we can all agree this last year especially has been full of Big Things.

So much has happened over the past year, and at many points I’ve wished I’d thought to document how it’s affected our family. Parenting a preemie in a pandemic has meant we’ve had to lock down tighter than most of our friends and family. In many ways, the emotional isolation has been harder than the physical isolation, as few people understand our level of caution. But having seen Emmett ravaged by RSV and even common colds, we know too well how illnesses go straight to his lungs. And unless you’ve experienced the trauma of seeing your child on a ventilator, it’s hard to explain how you just don’t take chances with something that could put him back on one. His pulmonologist warned us that while most kids who contract Covid have mild cases or are even asymptomatic, Emmett would likely not be one of them. She urged us to take extra precautions, and as a result, our quarantine has lasted well beyond when our friends and family widened their bubbles and much of the country declared they weren’t going to let this virus run their lives. Unfortunately for us, the more everyone else relaxed their restrictions, the more dangerous the world around us became for Emmett, and the deeper we were forced to retreat to keep him safe.

I feel hope now that vaccines are rolling out, though we’re likely at least several months out from a pediatric vaccine. Dave and I have been vaccinated, as have our parents and many of our friends, so for the first time in a year we’ve been able to get out a little more and socialize with vaccinated people at least!

The optimism I’ve felt these last few months has lifted a weight from my shoulders and I’ve been able to turn my attention to a project I started a couple years ago: I’m writing a book!

Wow, my hands just got all clammy. Every time I share this out loud to anyone, feelings of imposter syndrome wash over me and self-doubt creeps in. Writing a book has always been on my bucket list. I always figured I’d write a novel in my retirement or something, but then life dropped a little 1 lb. 14 oz. trauma into my lap nearly five years ago, and after several people urged me to write a book about our experience, and seeing just how much this blog has helped other preemie parents cope, I’m finally doing it. I started it two years ago, and then stalled out last year because I just couldn’t stomach revisiting a traumatic point in my life while I was stressed with a new traumatic event. I finally picked it up again earlier this year, with more determination than ever.

It’s been a lot of work, turning the daily stream-of-consciousness I’d hammered out each night after much stress and little sleep into a work of prose someone might actually pay money to read. But I’m finally “done” writing the book. I use “done” in quotation marks because I’m always finding something new to revise, and will likely go through a few editing rounds before all is said and done. I’ve decided to try the traditional publishing route first with self-publishing as a backup plan, knowing how competitive the publishing game is, and that securing a memoir, in particular, can be next to impossible unless you’re a celebrity.

There’s an old French proverb: vouloir, c’est pouvoir — “to want, is to be able.” If there’s one thing Emmett has taught me, it’s that even when the odds are stacked against you, there’s a way.

Stay tuned for updates!

Baby Emmett, health & body, loss, NICU

NICU day 46

One year ago, we got the news 13 weeks into our pregnancy that our baby no longer had a heartbeat. And while I’m grateful for how well E is doing, I can’t help but feel sad about the rough journey we’ve had to this point, and still have ahead of us. Four pregnancies: two miscarriages; one perfect, textbook pregnancy; one premature birth. My OB doesn’t think my preterm labor had anything to do with our losses, but she doesn’t know what caused it either, and we’ll probably never know. She did say if we were to get pregnant again I’d have to be on progesterone injections throughout the pregnancy — possibly in addition to the drug cocktail I was on this time around just to keep from miscarrying. Even then, there are no guarantees. Yeah, no thanks. My body hates babies. We’re done.

Interestingly, we have plans for the Fourth tomorrow with the same group of friends, at the same house we were at this time last year, after just learning we had lost our baby. I was still carrying my baby because I couldn’t get in for a D&C until the following week because of the holiday weekend. I was still wearing maternity pants, with a flowy top to hide a small baby bump. Many people at the party didn’t know we had even been pregnant, and I didn’t feel like talking about it. They had no idea the multiple glasses of wine I drank that night were the first I’d had in three months and that I so desperately wanted to escape the nightmare I was living yet again. Now here we are, one year later, living a different nightmare. It’s more bearable this time because our baby is alive. But it’s a lot more draining because it’s so drawn out and there are still so many unknowns.

But I should try to focus on the positives. Emmett is really doing very well, all things considered. The CLD is still haunting me because we don’t know how severely he’ll be impacted, but for the time being, he’s making forward progress. He’s continuing to gain weight. He’s still having occasional events but they aren’t too frequent or severe. He handled the drop to 2 liters of oxygen like a champ, and they’re talking about possibly dropping him to 1 tomorrow. He put on 28 grams today, bringing him to 3 lbs 14 oz.

His heart rate has been jumping up frequently these last couple days, but that seems to only happen when he’s agitated. The higher heart rate episodes seem to have coincided with when they started swaddling him – perhaps he just prefers having his arms free. And he has shown us that despite his lung issues, he can let out an impressive cry when he wants us to know he’s unhappy!