It was two in the morning in the NICU and my husband was sobbing next to our 26-weeker’s isolette. She was 24 hours old and things were going poorly. I was in my room crying and trying to get warm, after having lost a great deal of blood in delivery.
The next morning, my husband told me about the remarkable NICU doctor, Dr. Ayman El-Mohandes, who held him as he wept. He was the one who told us that she was not going to make it on her second day of life. He was there when our friends came to sing to her and say goodbye to our daughter. And he was the one who told us later that day that he does not understand why she is alive. He believes that my husband and I pulled her out of the grave.
He was the one who told us about our daughter’s brain bleed. He was kind and talked very slowly, knowing that we were traumatized and not getting it. He repeated this information until we got somewhere in the neighborhood of understanding. I remember saying to him, “You are saying bleeding, like a hemorrhage, and brain in the same sentence, right? And it’s about our daughter, right?” If you know about dissociation—the part of you that scoots out of your body and watches from the ceiling—I heard brainàbleedàdaughter from the ceiling. Dr. El-Mohandes protected our daughter—and us—throughout her stay in the NICU. He got down on his knees to see and hug her on a visit when she was 7 years old, calling her “My Little Minx.” He was, and remains, one of the most extraordinary people I have ever met.
When I published We Are Always With You, I found out that Dr. El-Mohandes left the NICU world at the same time that I was entering the healthcare system as a medical family therapist. He is the Dean of the City University of New York Graduate School of Public Health and Health Policy. He is a pediatrician with serious policy chops. We talked one day about my book and our memories of my daughter’s 100 day stay in the NICU. He remembered exquisite details about that time. Our memories were so in sync. We both cried as I sat in my front yard, talking about the book and how our souls interlocked during that period of time. He cried even more when he spoke to my daughter. He is always with her and with us, her parents, he is always with us. He will forever be an inspiration to me and to anyone who has the privilege of spending time with him.
In We Are Always With You, I hope that you see how the doctors, nurses, and other NICU staff are honored in the journey. They cared so deeply for both of my preemies. They were my human flotation devices and kept me afloat. Sometimes we laughed our heads off together when something seemed ridiculous (for example, the Dixie Cup that hid my daughter’s IV on her scalp and looked like a jaunty fez) or when she just didn’t tank that day. I will say that I drove one of my daughter’s wonderful nurses, Dawn, to get therapy because I was such a traumatized mess of goo. (I got therapy myself. Have you? If you haven’t, do it now. You and I both know that you need it. It will help you so you can tell your preemie(s) about their remarkable birth.)
I also hope that you can see that not all of my memories of the NICU journey are horrifying. There are also memories of connection, love, kindness, and hope. The group sadness when a baby was doing poorly or died. The joy when a baby was discharged from the NICU. When you have a preemie, your family expands to include new people. Thank you. Thank you, NICU staff, for joining our family.
Who was your special NICU doctor or nurse? Please share a picture so we can celebrate your family and your NICU family.
And please send your NICU a copy of We Are Always With You. Thank you!
Why I Wrote This Preemie Book