NICU Parents: A Secret Society?

I remember the first time I walked into the NICU. When I was approved to go, my husband walked with me, showed me the hand sanitizer, and instructed me about the various policies about cleanliness. We walked in to find our tiny babies, who were on opposite sides of the full unit. Fluorescent lights glared onto the nurses, parents and their tiny charges, highlighting the dark circles under the parents' eyes and reflecting off of the plastic isolette that housed each baby.

It felt as if a sense of dread filled the room, which was full of the sound of beeping alarms. I saw the red and green lights indicating each of my sons' vital signs, the equipment that was attached to all of the tubes and wires in their bodies thrumming loudly beside them.  I pressed my hands against the plastic of their cribs, afraid to touch my own babies and, at the same time, aching to reassure them that I was there.

The overwhelming sensory stimulation that surrounded me was jarring, and soon enough would become absorbed as unnoticeable in my daily reality. I looked at the people around me, my new community, and swore that I saw others who, like me, had tears welling in their eyes, reflecting the lights that would never dim.

For all of us, this environment would be our babys' home for days, weeks, and sometimes months. This was the NICU. 

Prior to going into preterm labor, I had never even considered that prematurity was a risk. I knew that having twins was a risk factor, but I knew no preemie parents, and had heard no stories of preemies. I hadn't known anyone who had had an especially traumatic birth or a medically complex baby. I had no idea. The night after I gave birth, I researched premature birth to the best of my ability, and found out that one in every eight babies born in the US is born prematurely. I discovered the March of Dimes, and read stories about these tiny warriors and their families. I realized that we were not alone.

The parent lounge in our NICU was sort of a ghost town; not that it was empty, but that oftentimes we silently walked past each other, each quietly dealing with the daily medical ups and downs of our babies on our own. Although we all knew that each one of us was contending with perhaps the biggest struggles we would ever face, there wasn't much regular communication. When times were tough, and perhaps we most needed support from parents going through something similar, paradoxically, the last thing most of us wanted to do was to leave our babies alone in the NICU so we could talk with others. What felt like the invisibility of our circumstances made everything that much harder to shoulder, and our inner emotional experiences of the trauma seemed all the more "abnormal". 

Many parents describe the NICU as a kind of "secret society": a world that, prior to their own experience, was mostly invisible to them. As their babies stabilize or are discharged from the hospital and parents start to reach out to others that have gone through similar circumstances, they find themselves appreciating even the smallest of milestones, or suffering some of the greatest setbacks with a community that has a strong and compassionate understanding of what each other is going through. Unfortunately, due to the traumatic circumstances of having a baby in the hospital, in addition to the added isolation of quarantine after discharge, it can be challenging for NICU parents to have a chance to connect with one another.

What was your experience of other families in the NICU? Have you made connections with others in the preemie parent community since your baby's stay in the NICU? Are there any ways in which preemie parents can become more "visible" to the world around us, and if so, what is it that we need to say? I also get curious as to whether fathers are even more isolated by the NICU experience than mothers, and if there are any ways for fathers who have gone through this to more effectively find/construct their community?