As someone who has always been very connected to people – and who regularly connects others to people and resources – I found being a new parent of micro preemies very isolating: hospitalized bed rest, having twins, stopping full time work, spending the first three months of motherhood in NICUs (Neonatal Intensive Care Units), being on quarantine for the first year at home. I never wanted a handbook for being a mom, but I felt utterly lost and uninformed as a new parent of micro preemies, constantly playing catchup as I got side-swiped with new issues.
Isolation at Home
We were home. A huge, joyous milestone – and we were even more alone. The connections were even less possible once our micro preemies arrived home. We were told to quarantine ourselves for a year, if at all possible. We took this up like the life or death charge it was. After all, everything had been completely out of our control prior to this. We followed every suggestion for a healthy multiples pregnancy. Fail. We followed every precaution and suggestion for a smooth NICU stay. Success unclear. Here was our chance to control their environment and therefore their health for the next year, or so we hoped.
We were overjoyed at having them both home. Finally. Together. But the quarantine set in fast and hard. Signs went up on the doors to the house: Please wash hands and use sanitizer frequently. We screened everyone before they came over. Absolutely no kids and only healthy adults. No one touched them except those who were helping to care for them (e.g. grandparents), even if they were healthy adults. We didn’t go to play groups. We didn’t bring them to the grocery store. We didn’t go with them to anyone’s house. Not once. Not for an entire year. A great way to feed connection, right?
Frequent, routine visits to the hospital were like a beacon of light – and the most terrifying prospect. At first, the visits were like reliving the nightmare, but we went so frequently that I became numb to all of that and focused on how amazing they were doing. If you need reminding, a children’s hospital is an easy place to see your luck. On the one hand, there were so many people to talk to who understood what we were going through, so many people who were trying to help on us on our long road of prevention and treatment. On the other hand, germs were everywhere, and not just the run of the mill cold. Respiratory Syncytial Virus (RSV) was our big enemy in those first two years. Rates of hospitalization are high (19%) and RSV can be deadly, especially for preterm infants with lung problems.1
After their first birthday, we started venturing out, including to a weekly early intervention group. That place was routinely cleaned like it was a palace. These people understood the fury of moms of micro preemies and other at-risk kids at being exposed to germs!
We felt crazy and resolute. We were told repeatedly if we could just keep these kids from being hospitalized in the first year… And we did. Who knows why. Likely a combination of our vigilance and plain luck. Many times in the years after, and many illnesses and hospitalizations to show for it, I felt like we’d be doing ourselves a favor if we kept up that original quarantine.
The hard work of making connections after the NICU
Our opportunities for connection during quarantine when our babies finally came home were markedly different than anything I had seen for families with infants. One of the most difficult parts was figuring out what those connections could be, and then beginning to understand which ones were best for us.
We sought connection with other people, the outdoors and each other. We:
- Organized regular visits from healthy adults
- Took at least two walks a day, weather permitting
- Used FaceTime to “be” with family and friends
- Looked at Early Intervention practitioner and nurse visits as “playdates”
- Participated in a Visiting Mom program, where a trained volunteer came to visit once a week in the first year
- Participated in Fragile Beginnings, a program for NICU families that followed us home for those first few weeks
- Went back to work – first my husband, then me
- Put preemie parent phone calls on the calendar – admittedly I never once made one of these calls meant to mimic an in-person baby group
A lot of this newfound connection took getting used to. Most of it involved having total strangers in our typically messy home during one of the most chaotic periods of our life. Only years later have I come to recognize and own the disconnection I felt while in the NICU and during that first year at home. Really, the disconnection continued past the first year and is ongoing in many ways. Connection is a funny thing. What it means, how it manifests and what it looks like continually takes new forms as our needs and experiences, and those of our former micro preemies, evolve.
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