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When You're Haunted by Memories of the NICU

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Neonatal intensive care unit post-traumatic stress disorder. NICU PTSD.

Has this been coined before? Has it already been given a shorter, fancier definition? Have eager therapists met the troubled gazes of their clients and breathed life into the acronyms: “I think you’re suffering from NICU PTSD.” Perhaps there is already some name for this thing that is as much a part of me as the blue of my eyes and the South in my voice. If there is, I haven’t heard it. But I know I struggle with it. Every day of my life, everywhere I look there are constant reminders of a life lived in a bubble. Those days when we were scared to breathe. Memories of when time stood still.

a mom and her preemie son in the nicu
Stephanie and her son in the NICU.

My son Avery spent 111 days in the NICU. He went from one pound and three ounces to five pounds, ten ounces the day he was released. From cocoon to butterfly. He struggled, and we struggled. I’ll spare you the details though, because honestly, this time, they don’t matter. What matters are the everyday reminders of those months. Of the time of his metamorphosis.

Sometimes I’ll be washing my hands and I’ll pause. I look down, and the sink becomes that deep basin just beyond the NICU doors. That hot water and antimicrobial soap that destroyed my hands within a week of using it 10-plus times per day. I almost cannot wash my hands away from home without tasting fragments of those memories — especially if the soap is antibacterial or the water is extra hot. Or if there is a line behind me, as there often was in the NICU when it opened back up following shift change. Soap and water. And memories.

Certain alarms will still make my heart skip a beat as well. For so long, we relied on machines to tell us how our son was doing. His nurses, and we along with them, would jump at any sound indicating trouble. And there was trouble. He stopped breathing a few times. He turned blue and gray and lifeless. That screeching oxygen saturation alarm is ingrained in my memory. And for added traumatization, Avery came home on oxygen and with an oxygen alarm of his own. I still wake up from a dead sleep thinking it is going off. Something so necessary became something so scarring.

My son has scars. The one just under his left shoulder blade from when the surgeon placed a tiny clamp in his heart, correcting his patent ductus arteriosus (PDA). The tiny, twin incision marks on each side of his lower belly where his protruding inguinal hernias were repaired. He has numerous IV scars and a patch of saggy, stretched-out skin on his upper arm where a central line was placed. Oh, and his belly button. He doesn’t really have one. What he does have is a massive scar that resembles a burn. I see these marks every day. Each time I change him. When I bathe him and clean his little hands. In every moment of every day, my son bears scars. And because of this, I do, too.

Have you ever been scrolling through Facebook or Instagram and been struck motionless by an image? For some people it may be a political post of some sort. For others it may be a work of art or their favorite actor with the chiseled jawline. For me, it’s babies. It’s small, fragile babies in incubators with tubes everywhere — as mine was. It’s the rosy-cheeked, chubby-legged cherubs, too. Both a dream and a reality. My mind will never be washed of the images of the red, pencil-legged child who was born to me. So while my breath catches at those pictures, and for those families, it can also pang with jealousy. A picture is worth a thousand words, right? Not every time. Sometimes it can all be said in far fewer.

We are haunted by memories of the NICU. For those of us who live with these memories, it can be a curse. They’re a constant reminder of those traumatic days in the neonatal intensive care unit. But would I wish them away if I could? Probably not. I wouldn’t — because they are also a blessing. My son is almost 3 now, and he’s beautiful and smart and just so much trouble. I look at him and almost can’t picture him as the child of those memories. I know he was, because we lived that hell with every fiber of our beings. I’ve learned to take my days one breath at a time, especially the more difficult ones. I step back and give myself a chance to have my moment. Usually I’m snapped out of it quickly by a whiny toddler. By reality. So these days, I wear it like a badge of honor and take every chance I have to talk about it with other NICU mothers. I warn them this can happen and tell them how normal it is, how normal they are. And I listen to them. I earned this title. Post-NICU Neurotic Mom. This may be something I have to live with, but I can’t let it stall my happiness and leave me less than thankful.

After all, I do have so much to be thankful for.

Lead image via Thinkstock.

Follow this journey on 25 Weeks to Perfection.

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