NICU Awareness — Evalasting Peace

Lining the NICU walls are photos of warrior children who beat the odds. A beautiful representation of all the NICU can do to save lives. I’m almost ashamed to admit that it brought me sorrow instead of comfort because there was no intervention to save our life-limited daughter. No therapies or surgeries that would change the fact that her brain was smooth.

I’ve never shared this video before. There are so few, and some things I like to keep to ourselves, but I’m sharing it now because it illustrates our NICU life. Eva’s beloved nurse buzzing around mid diaper change, the only thing I could really do to care for my girl. Big brother watching TV in the background. Machines beeping, cords and tubes everywhere.

In the middle of the chaos is a little girl loved beyond measure, looking for her mother’s voice, while nurses and doctors swirl about treating her with so much dignity and respect, and talking to her in such a way that you almost (not quite) forget about her condition.

At the time, I was sharing a bit of the rollercoaster with #NICUlife posts. In one day you go from thinking your terminal daughter gets to come home, to deciding a few hours later she will have major bowel surgery to help her eat, staying for a few weeks instead. Or, she gains a celebratory few ounces one minute, the next she rears back and pulls out her ventilator tube giving us a HEART ATTACK—feisty girl!!

The palliative care doctor in the NICU was an empathetic man with so much heart. He would sit with me and just talk about life, and books, and yoga, and his trip to China. He spoke the sweetest words to our girl, and cried when I told him “I’m just grateful I get to hold her in my arms and love on her for a while.”

There are many wonderful professionals in the NICU. Respiratory therapists who hum to your girl as they change her face tape. Hearing test specialists who don’t leave the room when you yell “Why does it matter anyway!” as you storm out while your husband explains your daughter’s situation. And she stays. I come back, and she tells us that she lost a child too. (As did a few of the NICU nurses.) She knows someone whose daughter has #lissencephaly and wrote a book that we might appreciate. That lady sent us a card after Eva died, and I still want to write her back to tell her what that meant to us.

Truthfully, that was my only outburst I can remember. I may have shocked the nurses with my composure. In fact I know I did. The head nurse would pull me aside and ask me how I am. The palliative doctor asked me when I cried. When I told him in the car on the way home, he shared that he pulls off the freeway some nights to cry—giving me a gentle hint.

The nurses. Oh the nurses! It’s difficult handing your child over to strangers. Max didn’t spend the night with his grandparents until he was over a year old. But those nurses quickly become your friend because they’re with you and your child so much of the time. Telling you that she’s their favorite. Teaching you how to insert a feeding tube through the nostril. (Daddy was better at that!) Never mentioning lissencephaly, just treating her as they would any other baby. I always had this underlying fear that people would treat Eva as less than because of her diagnosis, but I’m grateful to say we never felt that from anyone.

One of our favorite nurses is an RN who is also the grief counselor, and she really looked out for us so we could love on Eva with little intervention, especially in her first days. We still laugh at my detailed birth plan. She gently explained this unknown world we had been thrust into, with titles and words that were foreign to us. She was patient with Eva’s daddy who had lots of questions because it’s hard to retain information when there is fear, exhaustion, grief and trauma involved.

The nurse we love dearly was with us the most. She made sure we snapped a family photo (which would be our last), and created Eva’s sweet door hanging. (Still don’t know how she got the hand print!) It was such a comfort leaving Eva in her care when I went home at night. She frantically called numerous times as we drove the hour in the rain to the hospital on Eva’s last night. When we arrived she was there, once more, buzzing around in the background as we snuggled with Eva’s lifeless body. She worked to preserve our daughter’s memory, reminding me to clip her hair, snapping a bunch of photos of us holding our girl for the last time. She printed off a list of local funeral homes, highlighting a few that offered reduced priced cremations for babies. There was even food to take with us at 4 am as we left our girl in the only place she ever lived outside my womb. And you know that nurse cried that night, and for days after. They genuinely love us and our children, these super NICU nurses that don’t even seem human.

The best thing our NICU did after Eva died was set up a meeting with those closest to her and us. I learned this is rare, but it shouldn’t be. It was so sudden and final when she died, I had to return to the NICU to say goodbye and tell them how grateful we were for the care she received. I’ve now spoken twice to a classroom of nurses about our experience, and hope to do more. I bring my box of treasures, and share pictures, and tell the story of our amazing girl who lived for 22 days within the confines of the hospital. Up the street from where her great-grandma raised 13 kids, including my beloved grandma—her two namesakes. The city of my youth, that holds so many memories, now includes my only daughter and her brief life that teaches us the deep lessons of our own life, which happens to be the very meaning of Eva’s name.

The surgeon’s explanation before surgery, with daddy’s gratitude written at the top.

My fold-out bed when I slept with Eva. We sure lucked out with a recently remodeled NICU that has private rooms.