What Not to Say to Parents of a Premature Baby

by Rhiannon Giles May 10, 2016

When you give birth prematurely everyone looks for silver linings. I get it -- it’s frightening and difficult to know what to say to the parents whose expectations have been shattered.

These well-meaning bright sides didn’t offend me, and these days I can laugh about them, but back then they made me feel more alone. They made me realize how out of the ordinary the experience was as everyone struggled to find the right words. A quick search will give you list after list of what not to say to parents of premature babies, but there is one specific at least that I want to discuss. "At least you’re getting some sleep." The assumption is that since you are not having to get up in the middle of the night with a baby that you are well rested. After all, this is every new parent’s dream, right? Maybe it’s true for a minority of NICU moms, but for me it could not have been farther from reality. The 40 days that my son, Rowan, was in the hospital were some of the most sleep deprived of my life. I had to pump every three hours around the clock. I was sleeping in my daughter’s bottom bunk, because it was the only bed I could get out of without excruciating pain from my c-section. I wandered blearily down the hall to the waiting breast pump, and I sat on the couch and thought. I thought about how unnatural this all felt. I wondered what my three pound son was doing at that moment. Was he sleeping? Was he having a good night? Did he miss me? I would picture him in his isolette, all wrapped up and alone. Then, alone, I would stumble my way back to bed only to toss and turn. My brain, which is not known for being a calm and restful place, was in overdrive. Thoughts raced as I tried to settle down, eventually falling into a fitful sleep. I dreamed of babies dying. In one dream my five-year-old daughter was drowning in a pond as I stood at the edge and watched, powerless. Always powerless. I screamed a lot in those dreams. Wailing, out of control and primal as I let loose a terrified anger that I could not - would not - let myself succumb to in my waking life. I would wake shaken, momentarily unclear what was real and what was not. The dreams would haunt the day, putting me at the edge of a cliff waiting for the rocks to crumble. I would find myself grieving for children who only existed in my nightmares. I am thankful that the hospital was a mere mile away, because I had no business on the road. I pulled into the wrong lane. I cut off cars as I pulled into traffic. I was delirious and strung out on caffeine and adrenaline to get me through the day. I felt like my body was vibrating, and my skin actually hurt. There was no “sleep when the baby sleeps” because I needed to be awake to clutch his tiny chest to mine. When I was not at the hospital I was dealing with the trappings of everyday life, which I found to be sadly lacking a pause button. It is true that when Rowan came home my sleep debt grew ever larger, but those days in the NICU were the opposite of restful. I was a coil of tightly wound emotion and raw nerve endings, unable to find peace even in my dreams. There was no at least about it.

Rhiannon Giles


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