Our NICU Story

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It’s 9 p.m. on Christmas Eve. I’m blankly staring out over the city through the window of my 4-day-old’s NICU room. My baby is lying in an isolette behind me, tiny and silent. We had been home for two days when he became unresponsive and I rushed him to Children’s Hospital at 4 a.m. The only light in the room is from the various screens connected to his monitors and IV poles.

I stood over his isolette today for so long my back aches. My c-section incision burns. I stood over him all day and sang. Prayed. Stroked his hair. Kissed his cheeks. Whispered desperately “please be ok,” “please come home.” Silently cried. Sobbed. Big, ugly, open mouth sobs. Now I sit. Feeling nothing.

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The only shoes I have are slippers. Given to me by my husband and older kids before Christmas because they knew I’d want them after I delivered the baby. They were given to me with so much joy and anticipation of the new baby. The slippers have shiny gold threads weaved into them. They screamed Christmas joy. I imagined wearing them in our hospital room, cozied up with our perfect baby for those two precious nights of quiet bonding before going home. I did not imagine scuffing around the NICU in them days later, paired with my husband’s sweat pants and a breastmilk-stained sweatshirt. The festive shiny threads of my slippers seemed to mock me now. A reminder of how not joyful this Christmas is.

Time doesn’t matter in the NICU.

Minutes feel like hours. 2 a.m. is the same as 2 p.m. Life is reduced to when the doctor is coming around again because you are desperate for answers. Time is measured by when the next medication is due, or the next test is scheduled. With each shift of nurses, you tell your story again. What happened to your baby. How everything was perfect until it suddenly wasn’t.

I curl up on the plastic couch alone. My husband is home with our big kids, ages 4 and 7. How will I explain the baby’s illness to them? What if I never bring their baby brother home again?

Santa drives around Children’s Hospital with a police escort and flashing lights. “Merry Christmas!” he shouts over the loudspeaker of the cruiser as he waves up at the rooms above. When will Santa come to our house? Christmas gifts for the baby from charities and donors sit in the corner of the room. I can’t bear to open them.

The hours turn into days without answers. My tiny newborn endured countless blood draws, three lumbar punctures, three IV antibiotics, an NG tube placement, upper and lower GI scopes, etc, etc. Specialists of all kinds came. Neurology, surgery, GI. One physician would think one thing, another would disagree.

My momma instinct told me I should feed him. Nurse and comfort him. But he was too weak. He didn’t eat for three days. The doctor talked to us about possible genetic diseases. He couldn’t figure out why the baby wasn’t waking up. He was calling in more specialists to analyze the blood cultures. I will never forget him saying “some genetic diseases are not compatible with life.” I almost fell to the ground. This couldn’t be happening.

My husband and I took turns staying in the NICU around the clock. Tried to balance time with our big kids. We both were home a couple of times for dinner. The kids kept saying, “When the baby comes home…” and I would fight back tears and silently pray that he would come home at all. The week was a blur. Every time I went back to the hospital, sometimes very late after I put the older kids to bed,  I slipped on my slippers to head back. Mostly because they were comfortable and I didn’t care a single ounce what I looked like.

But maybe I was holding on to Christmas. Hoping that I’d have the joyful “Christmas morning” moment holding my new baby like I had envisioned. They reminded me of the moment they were given to me, which seemed like years ago now. Before the baby came and before the NICU was ever in our minds. The moment of sweet anticipation of our baby brother. By the end of the week we spent in the NICU, those slippers looked like they had been through hell and back. And they had.

After seven long days and one miraculous recovery, we brought him home again. We still don’t know what caused his illness. Not a day goes by that I don’t think about how lucky we are, and about all the families and babies who are not as lucky as us. We are so grateful to the staff of Dayton Children’s Hospital, and all of our family and friends who provided love and support. Most days you can still find me scuffing around in my slippers, still not giving a hoot what I look like, and being so very thankful for my three healthy kiddos.