Memories of my life in the NICU come back to me in waves. One time, I had a rush of emotion (read: SOBBED) while watching Kate and Toby, on “This is Us,” in the first few days with their beautiful baby boy, born prematurely and snuggled up in the NICU. Sometimes, it’s photos of newborns—so innocent and peaceful—with tubes and wires surrounding their plastic bassinets. Today, it was a photo tucked in with a pile of other random candid shots of our family and friends. A photo of the very first time I got to hold my baby girl.
Most of the time, I think I’m doing okay. I think I’m at the point where I can talk about it without fear of bursting into tears. But then, I realize that that day may never come. Life as a NICU parent can feel lonely and isolating and confusing and scary, and we need to talk about it more. NICU families, you are not alone.
I want to share a little bit about our time there during our first days as a family of four. The first time I saw Emma, I was allowed to hold her little hands and touch her little feet. My older daughter, then two and a half, was allowed to hold her finger—so starkly different than what I had imagined for their first days of sisterhood. Nothing more, because the procedure was so delicate that any significant movement might disrupt the process of preserving her brain health.
No one could tell us how much, if any, brain damage had occurred when the umbilical cord was strangled out of my body. I was rushed into emergency surgery and put under, and when I woke up, groggy and confused, she wasn’t there. I learned, in pieces as I came to, that she had been born completely unresponsive, resuscitated by a team of nurses, and rushed to the NICU. All I could do was wait.
During the days, while I was a patient recovering from major abdominal surgery, my husband and daughter, and often my mom and brother, would come in and we would visit Emma together. We spent time together and tried to be as normal as possible as we marveled at her sweet little face, swollen from the morphine. My mom had taken a week off from work to help with the baby, but there wasn’t anything she could do. I felt guilty that my family who came to visit were only seeing me and couldn’t see our baby girl. I couldn’t wrap my head around the fact that they were there to support me. I apologized endlessly and truly felt like I was doing okay. I was not okay.
The second my husband and daughter would leave, I would collapse to the floor and sob. I was so lonely, but I wanted to nurse and I wanted Emma to feel me near her. I would sit next to her until I couldn’t keep my eyes open. Sometimes, I would sleep in the chair at her bedside. I would go downstairs to my hospital room and doze for an hour or so, come back up to nurse, pump, and go back to sleep for a few minutes. I was exhausted physically and emotionally, but I thought I was doing okay. I was not okay.
I distinctly remember telling a story, perched in my hospital bed, that I truly believe I thought was funny and bursting into tears at the end. My best mama friend snuck in through the ER to sit in my bed with me and bring me ice cream and let me sob without judgment. The nurses sat at my bedside to chat and stood next to me with Emma at 3 in the morning so that I wouldn’t be alone. I hope they know how grateful I am. I don’t know that I ever expressed it, but I hope they could feel it.
We had setbacks that left me feeling defeated. When we came home, I would dread the long nights, when I would lay anxiously in my bed, checking on her every few minutes to make sure she was breathing on her own. A nurse had told me that I would probably have some post-traumatic episodes, but I couldn’t comprehend what that would mean. It wasn’t for another year and a half that I finally acknowledged that what I was feeling was normal and that I needed help.
Today, I am finally writing the post that I have wanted to write since the very day that Emma was born. NICU parents, it’s okay to not be okay. You are not alone. Reach out to one another; lean on one another for support; ask questions, cry, be angry, write. You are strong, and you are doing great.