At first it felt luxurious to be home. Going back and forth to the NICU multiple times a day was exhausting, and I was so happy that I could spend an entire day in my pajamas and not have to be at the hospital for the first time in months. My daughter, born at 28 weeks gestation, had spent 68 days in the NICU as she grew from 2-and-a-half pounds to just under 5 pounds. Before that, I was on bedrest in the hospital for two weeks due to chronic placental abruption. I was so ready to be at home and create my own routine, not one set by NICU rules.
Unfortunately, in leaving the NICU, I left behind a huge form of socialization. I had come to know the nurses, our doctors, and many other NICU families quite well, and suddenly I found myself very isolated at home. Not only was I tethered to the house because my daughter was attached to an oxygen concentrator, but I also spent most of my time in just two rooms; the two where her oxygen tube would reach.
I wasn’t much of a stickler when it came to our normal household germs. I figured they were “our” germs, and a certain level of exposure is necessary to build a healthy immune system. Evelyn had her flu shot and monthly Synagis injections to stave off RSV.
What did make me incredibly nervous was outside germs. Evelyn came home at the end of August, right before the start of the cold and flu season. She was on oxygen until December, and so we only left the house for doctor appointments. Even after she came off supplemental oxygen, I kept her indoors throughout the winter because of the frigid weather (we live in New Jersey) and fear that she would catch a cold at a time when her lungs were just barely able to function 100 percent on their own. Besides, I’ve always been of the mindset that tiny babies really want to be home and cozy. To this day, when I see a still-pinkish newborn out at the mall, I can’t help but shake my head.
During those cold weather months, not only did I keep Evelyn at home, but I seriously limited the number of people who visited me, as well as the frequency with which I left the house. I was terrified that someone would bring sickness into my home, or that I would get coughed or sneezed on at the store. My parents came over regularly, but other than that I hardly saw anybody other than Evelyn and my husband. Every couple of weeks, I’d go out to the grocery store for an hour or so, but besides that I only left the house for Evelyn’s pediatrician and neonatologist visits.
But, I didn’t realize the effect that being so isolated was having on me. I went from being a busy newspaper editor before Evelyn was born, to being a stay-at-home mom with very limited socialization and hardly anything to occupy my mind.
When your brain doesn’t have enough stimulation, sometimes it creates its own – at least that was the case for me. As time went by, I developed a serious case of obsessive compulsive disorder coupled with depression. My brain was inventing worries that really didn’t exist, and ruminating on them until they consumed my life.
This was accompanied by depression. I wondered what I had done to deserve the things that were happening – an early and traumatic end to pregnancy, a premature baby, months in the NICU, and then what felt like an erosion of my sanity. Through medication, over a year in therapy and – perhaps most importantly – getting myself back into the world, my OCD and depression have receded by about 90 percent.
I realize now that I should have been more kind to myself. One day I was seven months pregnant at work, the next day I was hemorrhaging in the back of an ambulance. For two weeks, I was confined to a bed as my body threatened labor again and again, and then I was in the alien environment of the NICU, staring at a tiny baby on a ventilator, covered in tubes and wires. From there, I put myself into months of isolation. I’m not exactly sure why I believed I could endure that.
If you find yourself isolated with a preemie this winter, be kind to yourself and don’t forget your own needs. Stay connected to the outside world. Volunteer your time, find a way to work from home, learn a new hobby, find something that excites you. Even though there’s always the risk of germs, take an entire morning or afternoon all to yourself and get out of the house every so often – go shopping (something more exciting than groceries), visit a museum, go to a coffee shop and read a book, get together with friends. Your brain will thank you. And ultimately, so will your family.
So, if you’re feeling like I did, stop it in its tracks now. Let’s brainstorm in the comments below and all help each other fight the urge to put ourselves in isolation.