The other side of the NICU

I’ve been asked to write for NICA (Neonatal Intensive Care Awareness) month by http://www.nicuawareness.org. They have dedicated a day, Sept 26th, to those lost in the NICU. So, here it goes…

When most people think of the NICU, they think of the miracles that spend days, weeks, or even months growing and fighting, eventually getting those words every NICU parent waits for, “You can take your baby home today.”

What’s rarely thought about, are those littles ones who lost their fight. They aren’t any less of a fighter than those who go home, they aren’t any less of a miracle either. They just got to go home without their parents. To a whole different home.

I had twin daughters in the NICU. Both were amazing fighters. Both died Within 7 days of each other. I went through what all NICU parents feared, twice.

I had to plan and attend the funeral of my first daughter,Willow, while Hazel was still in the NICU trying to pull her vent out. I had to grasp at hope, when all I had left of my first born was a memory box. I couldn’t even grieve fully. They say that babies in the NICU can pick up on their parents emotions. I didn’t want Hazel thinking I gave up on her. I put every ounce of my strength and energy into willing her to live. I had to focus on Hazel going home, not Willow dying. I didn’t have time to grieve Willow when I wouldn’t leave Hazel’s side.

7 days after Willow died my world collapsed in on itself. I experienced both of their losses at once. I felt disconnected from everything. I cried in the arms of the NICU nurses who were crying with me. How do they do it? I know they get attached, I saw it happening with my daughters. When Hazel passed, I heard one nurse immediately call another on her day off. Crying, she told her Hazel passed. In that moment I felt sorry for the nurses of my daughters. I never even thought about how it felt to them.

Less than 5 months after my daughters died I found myself shaking like a leaf in the hallway outside the NICU I had memorized. I was holding several NICU care packages I helped put together with Project Sweet Peas’ Greater Lafayette Division, Avi’s Embrace.

I held it together until the maternity ward doors opened and a very familiar nurse walked out and saw me. She had helped care for me in my weeks of hospital bedrest. She immediately started to cry and hugged me asking what I was doing there. My voice shaking, I told her about the NICU care packages and memory boxes I was holding. “God bless you child,” she said as she held me.

We were escorted down the hall toward the NICU. The doors open and I was overwhelmed. It was too soon. Memories washed over me in a flood. My knees went weak. Then, I was reminded of why I was there. Her. There she was, swiftly walking over to me when the doors opened. Hazel’s main nurse.

She is one of the many reasons I gave back to the NICU. When a child dies or lives it doesn’t just affect the family, it affects their nurses as well. They mourn and rejoice with the family.

While my NICU experience wasn’t a happy ending, I know the uncertainty that faces every parent that walks through those doors. The moment of hope a small package from another caring parent who’s been in your shoes can bring. I know. I just don’t know what it’s like to take my child home from the NICU.

I give back to my NICU in honor of my daughters and their stay and in honor of all those children without a happy ending, who’s faith, determination, and courage are often lost in the joy of those coming home.

Their stay in the NICU isn’t any less important than those who go home.

Here’s to all those who made it home, if only in our hearts.

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6 thoughts on “The other side of the NICU

  1. Yes, this is such an important perspective to share. The loss side of the NICU. How much our care providers can give us through THE most difficult time- not surviving the NICU. a beautiful tribute to your nurses.

    also, holy cow, the idea of planning one funeral THEN another? I never really took that in about our story. Planning one funeral is hard enough. To do them so close is just insufferable. I”m so sorry.

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