I would venture to guess that every mother has some level of germ-awareness during flu and RSV season. I know with my firstborn, full-term baby I did. I could spot a germy kid in her daycare class and hear the shopper coughing two aisles over in the grocery store. I would make an effort to wash her hands after playing in a public space and avoid situations where I knew she’d be exposed to some kind of funk. It was an awareness that I acknowledged and acted on, but it never hindered our lives. When my second child came home from a 103-day NICU stay in the middle of flu and RSV season, on supplemental oxygen, that low-level awareness turned into full-fledged anxiety about germs and illness.
I began carrying hand sanitizer with me and using it to punctuate every action I took: open the doctor’s office door, sanitize, sign in, sanitize, etc. We didn’t only avoid crowded places, we avoided every place that wasn’t a medically-necessary appointment, and at each of these many appointments, we’d check in from the car and wait to be called in when a room was ready. We didn’t schedule newborn photos as we had done with our first because of the potential of the photographer bringing germs into our home. Even little things such as carrying my own pen with me began to feel compulsive, necessary. The fears and anxieties that developed after the birth of our preemie most definitely affected our day to day lives.
Declan was born at 25 weeks and 2 days gestation, weighing 1lb 15oz. Our nearly four month stay in the NICU rocked our family in every possible way. He spent his first Halloween, Thanksgiving, Christmas and New Year in the NICU. Meanwhile my husband and I tried desperately to keep our heads above water on the home front and balance our time between our tiny baby fighting for his life and the 6-year-old at home whose world was turned upside-down.
In the weeks leading up to our NICU discharge, our care team began talking to us about “flu isolation.” The term could not be more fitting. We came to learn it would be both physically and emotionally isolating. I thought I was prepared for the physical aspect of going into isolation, hunkering down until spring to keep our boy healthy, but I was not at all prepared for the emotional toll it would take.
Parents of preemies have the obvious fears of their little one getting sick and ending up back in the hospital, and there are things we can do to mitigate that risk. We can have hand sanitizer in every room, leave our shoes at the door, avoid crowded places, and ask that visitors wait until spring to be introduced to the newest little miracle in the family. But there were other fears as well, fears that nobody told me about and I had not prepared for.
For example, were we protecting our preemie to the detriment of our daughter? Would she begin to resent the new rule of no wintertime playdates or birthday parties? There was the fear of offending loved ones who wanted to bring a casserole for the new family of four but wouldn’t be invited in for a baby snuggle. I struggled with the fear of being labeled “crazy” or “over-protective” because of the lengths we were going to in limiting germ exposure. I was faced with fears over the strain this isolation would place on friendships, would I still receive these social invitations after 4-6 months of declining? Am I alienating the people in our lives who have been there for us steadfastly through the NICU portion of this journey? These were just of a few of the fears and anxieties that would plague me during those quiet, middle of the night feeds.
I remember having conversations with a dear friend, also a micro-preemie mother in flu isolation, each of us encouraging the other that we are doing the right things. I could say out loud to her that she didn’t have to compromise her boundaries for others’ feelings, and that she didn’t owe anyone an explanation, then hang up the phone and worry over those same things. Logically I knew that we were doing what we felt we needed to do, but we all know that logic doesn’t always live in our emotional minds. I had to find my Mama Bear Voice and learn how to use it, without hesitation or fear. I had to learn to let go of the concern I had over what others thought and go to bed each night knowing I was doing my best for my family. And at the end of that first isolation period, when we reluctantly re-entered the world with our boy, I found that our family was, of course, still in our corner. The friends that had loved us so fiercely before, still did. The joy of meeting our newest family member wasn’t lessened by the time we spent holed up in our home. And that Mama Bear Voice I had to find has sure come in handy as we’ve travelled this rocky prematurity path the last three years.