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 two different 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 in the NICU
Our micro preemies were born at 28 weeks, 5 days, 30 seconds apart, by emergency c-section. They were quickly separated, our son transferred to the Children’s Hospital NICU down the street. Connection to other NICU families and to our babies themselves was extremely challenging.
Initially in the PICU (Pediatric Intensive Care Unit), our son was in his own room. The PICU simultaneously exuded great potential and deep sadness. There was no connection to other parents or families, except for furtive glances in which you tried to convey your support of shared experience. Everyone was holding on for dear life.
Three weeks later, our son was transferred to the NICU. By this time, a MRSA infection, courtesy of his PICC line, gifted us our own room. Isolated again. At the time I was happy for the peace and quiet and fewer germs our own room afforded us. The main NICU room was a loud and frenzied place with 15 incubators in rows of three. Looking back, I realize that being so close to other parents and families might have provided us with some connection to others who could empathize in the way no one else we knew could.
My daughter’s NICU was not much different. Though double rooms were the norm, few conversations were shared. Roommates changed often or isolation was necessary. We were alone with little ones that didn’t look, sound or act like any babies we’d ever been with. There was no connection with other parents over their strange and fuzzy skin; underdeveloped ear cartilage; quiet, no-crying aura; or sudden As or Bs (apnea, a break in breathing, and bradycardia, low heart rate).
We longed for connection with others but also, and primarily, connection with our babies themselves. When your baby is literally tied down by wires and tubes and lines (oh my!), it is difficult – and frowned down upon – to scoop them up as you please. We always had to get permission from an authority – and that wasn’t the parent! Talk about blocking connection. I had to wait five days after birth to hold my daughter for the first time; it was three weeks after birth for my son. Each day was a calculation. Could we hold them? If so, for how long? What if their body temperature drops or they start looking blue?
Eventually, the profound connection of holding them skin-to-skin became possible. It was many weeks before we could do that for longer than 15 minutes at a time – and never both of us in the same day. Yet, this was a first, very visceral connection and we took up the opportunity happily. Skin-to-skin (also known as kangaroo care) is known to help your baby keep their body warm, keep their heart and breathing regular, gain weight and more; it’s also to help parents reduce their stress and help them feel close to their baby.1 We were thrilled we finally had a hands-on opportunity to parent. To take action that could help our child thrive. As new parents of micro preemies there were so few opportunities to actually parent.
We longed for the time it wouldn’t take preparation, permission and good planning to pick them up for a diaper change, cuddle or feeding.
The Hard Work of Making Connections in the NICU
We were spending all our time going to and from the hospitals, sitting next to the incubators in the NICUs or sleeping at home. There were few happy hoorays or excited milestones shared. It was largely looked down on to engage with other families, lest you should impose or overhear or intrude. There was the occasional connection in the family lounge, but spending my days at two different NICUs in two different hospitals didn’t leave me much time for hanging out and chatting.
NICU staff were connectors, guiding us through completely mundane newborn stuff made absolutely bizarre and oftentimes absurd in the NICU: diaper changes or eventually baths that were like disarming a bomb, holding your breath that your baby didn’t stop breathing or pumping blood through their heart because you “cut” the wrong wire; baby collages featuring teeny-tiny baby feet and very low birthweights and due dates far too early; or the oddity of babies that didn’t cry or suck or breathe unassisted.
It was hard to bring people into this super-strange world to say look, here’s my baby – isn’t she amazing? We’re so excited he’s here! But we did. We set up a rotating schedule of visitors to create that connection that was so typically natural for us. And we held our breath a bit as family and friends peered into incubators with babies they couldn’t touch – and who weren’t supposed to be here yet.
Most amazing perhaps was the guidance and support we received by connecting with a local program supporting families with kids in the NICU. An insightful and kind social worker from a local nonprofit visited with us in both hospitals over the course of their NICU stays and in the early weeks of their return home. With her we could commiserate and learn and celebrate. She saw so much we didn’t, particularly the hard-to-see milestones. “Did you see how she moved her head toward that sound? That’s amazing. I can’t believe she already doing that!” In my micro preemie development ignorance and fog of exhaustion, I would have missed that small turn of the head completely. She was our wise guide who knew the (micro) preemie and NICU landscape. With her, we felt less confused, surer of ourselves, and certain that we wouldn’t miss important resources or milestones. This connection made all other connection possible.