Written by Reed’s mother, Diana Robinson
I had always wanted four children, and after a bit of persuasion, my husband agreed we could try for another baby. We had never been able to get pregnant “the old-fashioned way” and were lucky to have some good quality embryos on ice, so in July 2020, a perfect hatching blastocyst was thawed and transferred to my uterus. A week later, I found out that our “Maybe Baby” had stuck, and I was thrilled to be pregnant.
To say the pregnancy was difficult is an understatement. I had an obscene amount of bleeding at the end of the first trimester and into the second trimester. The bleeding likely weakened the amniotic membranes, causing my water to break at 17 weeks pregnant. At that time, our doctor gave the baby a 5 percent chance of making it to viability. He said I was putting myself at risk by staying pregnant. He advised me to terminate, but I couldn’t – not when there was a chance the baby could live. I was placed on bed rest, first at home and then in the hospital.
At 25 weeks pregnant, likely because of the lack of amniotic fluid, I had a placental abruption, requiring immediate delivery. Reed Dominick was born via emergency C-section on December 14, 2020. He was strong enough to let out a little scream and weighed in at 1 pound, 13 ounces. He was stabilized and whisked to the NICU.
After a few hours in Recovery, I was taken to see Reed. I peered into the incubator and saw his tiny body and sweet face for the first time. The nurse opened one of the circle windows on the side of the incubator. “Go ahead, Mom. You can touch him,” she said. I reached my left hand inside and touched my index finger to Reed’s wrinkled right palm. He wrapped his long, slender fingers around my knuckle and grabbed me with a strength I hadn’t expected. “Hi, Reed Baby,” I said softly. His head turned toward the sound of my voice. “I’m your Mommy. I love you so, so much. You did so good, sweet boy. I am so proud of you.”
In the following days, Jeremy and I learned about Reed’s constant care, the machines keeping him alive, and the value of providing Reed with breast milk. Reed was just over a week old when I held him for the first time. The nurse nestled Reed’s body inside the top of my tank top. His warm, fuzzy head rested just below my collarbone. I placed my right hand over the bare skin on his back, and my fingers curled perfectly around the side of his ribcage. I cupped my left hand around the back of Reed’s softball-sized head. I closed my eyes and breathed him in. Reed was a little squirmy at first, turning his head, and reaching his chicken-wing arms up towards my face, but he settled quickly. I sang to him softly and told him stories about his brothers. From then on, my favorite part of each day was holding Reed, talking to him without the thick plastic of the incubator between us.
Over the next few weeks, we experienced the expected ups and downs of NICU life, but overall, Reed did very well. He gained weight, his breathing improved, and we saw his feisty personality emerge a little more each day. The neonatologist told us that Reed now had a 96 percent chance of long-term survival. His odds of survival had flipped, and I breathed a long sigh of relief.
But then, only days later, on the way to the NICU on the morning of Reed’s brother’s fifth birthday, we got a call that Reed wasn’t doing well. The nurse practitioner said they suspected NEC – necrotizing enterocolitis. The panic started from the bottom of my stomach, rose, and caught in my throat. Tears sprang to my eyes. I didn’t know exactly what NEC was, just that it involved the intestines and that it could be really, really bad.
The next twelve hours were a nightmare. First, they tried antibiotics, but Reed’s condition worsened, and he had to be intubated. Next, an x-ray revealed a perforation in his intestines. A Penrose drain was placed in his belly to drain the infection, but it wasn’t enough. He wasn’t getting better. Reed was taken to surgery. He made it through, but a large portion of his intestines had been affected. We were told the next 24 to 72 hours were critical.
After what seemed like forever, Jeremy and I were finally allowed to see our sweet baby. I told Reed I was so sorry this was happening to him. I told him I was proud of him. I told him I loved him. The neonatologist interrupted and asked to speak with us in the hallway. Reed’s heart was failing. It had all been too much for his little body. The doctor asked if we wanted him to do chest compressions if it came to that. But Jeremy and I could not imagine anything else being done to Reed, and we knew the effort would be futile. We knew we had no choice but to say goodbye.
Jeremy and I took turns holding Reed, pouring every ounce of love that we had into him in his last hours. We sang to him, recited by memory our favorite children’s book, kissed and stroked his fuzzy head, and told him he was our little fighter and that we were so happy he was ours. We repeated over and over how much we loved him. Then, Reed’s heart stopped beating, and, at the same moment, our hearts shattered.
Even though Reed is not growing alongside his brothers, he is still very much a part of our family. We celebrate him and speak his name every single day. We are hopeful that because of the work of the NEC Society, fewer families will know the pain and devastation of NEC. Our family hopes you will learn more and get involved at NECsociety.org
