This is a guest post from Sydney, who shared her family's struggles with their high-risk daughter's health during a global pandemic. Sydney owns a bike shop in Breckenridge, CO with her husband, Nick, and two young kiddos!
To most outsiders, Quinn looks like a healthy toddler who was born at term. She’s vibrant, chatty, and never stops moving. Recently we’ve had to place stickers on her face again to hold her oxygen cannula on at night, but for nearly a year prior, she didn’t even have that.
She’s always been tiny. When we brought her home from the NICU she was 4 1/2 months old, but she should have been 4 weeks. At 6 months old (2 months after her due date), nurses in our pediatrician’s office would stick their head in and exclaim over the newborn. At a year I had just switched her from 3 month clothing to 6 month clothing and at her second birthday I finally moved her into 9 month clothing because I was tired of the same clothes on repeat for an entire year when most babies moved through 6 month clothing in a matter of months. Growing has always been a challenge for her, which means her lungs aren’t growing at a fast pace either. Growing is our only way for her to develop new lung tissue and the only way to move past the oxygen supplementation (aside from steroids, which we leave up to our pediatrician to decide on). So we wait. But while we wait, flu season happens annually and then suddenly a raging pandemic erupted. All threatening our ex-24 weeker’s fragile lungs.
To an outsider our former preemie looks like a typical toddler. That means she’s practically immune to COVID-19, right? But she’s not. And that right there is what makes this pandemic so challenging.
In November of 2019, two years after NICU discharge, we stepped a toe out of our annual cold and flu season isolation. Quinn was the magic two years old when respiratory illnesses shouldn’t have been as devastating on her preemie lungs. She’d had some minor colds and two major ones since we had brought her home from the NICU. The first time she got really sick we had to go down to Denver- to lower altitude- but we (narrowly) avoided hospitalization thanks to some quick action on our pediatrician’s part and some middle of the night driving for my husband. The second one we didn’t even have to go to Denver. Oral steroids, inhaled steroids, and nebulizers helped her successfully fight the cold. Because of this, we felt cautiously optimistic about her ability to handle respiratory illnesses that winter. December of 2019 (a whole month into our no-quarantine trial) rolled around and her younger brother came down with a sickness that filled his lungs with gunk. One night he sounded so congested I put the oxygen sensor on him and his saturation was down at 80% when he should have been in the 90s. Thankfully he came back up to the 90s with a low level of oxygen support. All I could think about was what would happen if Quinn contracted it. A week later we found out.
Although Quinn never sounded like she had wet congestion, her oxygen saturation kept dropping. We went to Denver. She came back up. The next day she dropped again. And again. Until she was hospitalized and was prepped for intubation in the ER, though, thankfully, they settled on BiPAP- a non-invasive respiratory support system. She was hospitalized for three days and was discharged on Christmas day.
Consequently our pediatrician ordered two months without other kids. That meant no neighbors, no cousins, no church, no grocery store (sounds like normal life now, huh?). All of these people had walked with us through our NICU journey. We had trained them to alert us at the slightest runny nose and would cancel all plans. They knew their kids couldn’t touch ours. We would bring our own toys and once, when Quinn was a year and a half, I watched her look at the other kids longingly as they were running around the house together. After a few seconds she turned back to pushing her shopping cart alone. But those were the rules to keep Quinn healthy. They all knew them and respected them, yet now we couldn’t even see those that made up what we all now lovingly refer to as our quaranteam.
Our alternative however, was much worse. So we did it. And as soon as our self imposed quarantine was ending, rumors of a superbug circulating in Asia began emerging. We watched as it rolled into Europe, then the US. We’d been loosely isolated for two months during the early winter of 2019 and then strictly quarantined for another two months after that. The week that our two months were ending and spring was approaching, the entire world shut down. Our close friends moved away in June of 2020 and we missed the entire winter with them, then had a couple of months where we cautiously saw them, and then they were gone. We missed out on memories and joy. All to keep Quinn safe.
In many ways the global shutdown was amazing for us. We’d already had to live within these parameters that very few people around us understood. In November of 2017 we discharged headlong into the belly of cold and flu season with a 24 weeker who could keep her oxygen saturation above 90% without oxygen supplementation all of about 15 seconds (literally). Our nurses told us, “do not get her sick.” Our pediatrician told us, “you get her sick, she gets intubated.” We told our community: no holding, no touching, no kids around her. How many of us dream of having a newborn that can’t be exclaimed over and adoringly passed around? Not me. But intubation was worse, so we did it. But now, the world understood our fear and our respect for viruses. We felt seen by the general public for the first time.
The initial couple of months during the pandemic were equally terrifying and liberating for us. We felt understood for the first time since Quinn was born. We felt like maybe we could see more people after the pandemic subsided because we would be more cautious about spreading germs as a society. But then COVID-fatigue set in. Social media is full of comments about how we’ve all already had the virus, how people have missed out on vacations, how the virus is a hoax. I don’t discount that travel can be done in a way that is fairly conservative or how we’re missing out on life together as a society, as well as how many of us have had and survived the virus. But that doesn’t mean that when healthy individuals ignore the rules simply because they’re tired of them, that the susceptible don’t still get sick or worse.
There is hope on the horizon with vaccines rolling out. We’re still awaiting ours (though I wish that families and caretakers of high risk family members could be included in earlier rounds of vaccinations), and we’re keeping ourselves fairly contained. As I write this, Quinn laid down on the couch before nap time, which is highly unusual. I asked her a hundred times if she was okay. She insisted she was- though I’m finding that as she gets older (she’s now 3 ½) she’s starting to downplay her discomfort. My mind went through all the possibilities. I took her temperature. I asked her again. She said she was fine another hundred times. And then, as I was putting her brother down for a nap before tucking her in, I heard her giggle and then talk to herself. I guess she really was just cold, but I was certain for about 10 minutes that she was on her way to the hospital again.