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Untitled Shannon Thomason When your ankle is swollen, you put ice on it, so the idea of cooling our son’s brain to keep it from swelling seemed logical. If we had thought about it more, maybe we would have questioned it, but all we could really do at the time was go with our guts and trust the doctors. We had only been parents for a few short hours and already we were making life and death decisions. It seemed unreal that we were even being consulted. The voice in my head said, “Yes, this is the right thing to do,” so we gave the OK and the Cool-Cap procedure was begun. It was hard seeing him the first time with the cap. The first time I’d seen him at all was bad enough, covered in wires with electrodes taped to his head and tubes in his hand, belly button, and mouth. Now he had the cap to keep his head cool. And since the rest of his body needed to be warm, there was a hood over his head and the cap to block the effects of the warmer. All we wanted to do was hold him, and there was barely a spot where we could touch him. We called him “Space Baby” to try to lighten the situation. The Cap had to stay on for 72 hours, so we waited for 3 days. After that, he was monitored by video EEG for 24 hours, so we waited another day. Then, we had to wait a day to have the MRI done and another after that for the results. We called our families to give updates as we had them, but for the most part told them no news is good news. In total, we spent 12 days in the NICU. We marked his progress by the completion of procedures and removal of tubes and wires. When he finally opened his eyes and really looked around, we finally felt like our “Space Baby” was real. I was constantly surprised by just how nice the NICU nurses were to not only our son, but also to my husband and me. I expected professional, of course, not necessarily nice. Each day, though, each person I came in contact with was as patient and caring as the last. I guess you have to answer a special calling to spend your days with sick babies; it’s not a job that is undertaken just to pay the bills. And you have to have incredible people skills and intuition to deal with the parents. In some ways, taking care of our baby was probably one of the easier parts of the job. His dad and I added our own anxieties and ways of dealing with the simultaneously best and worst day of our lives. That’s something the NICU staff had to navigate on top of caring for our son and all the other babies (and their parents). The first time I saw my son he was about 2 hours old and I hadn’t done a thing for him. He was taken to the NICU right after he was born and the doctors and nurses there had cared for him. But they still called me “Mom.” It felt strange at first, because I couldn’t do any of the things a Mom does; I didn’t feel I had earned the title. Still, I was his Mom; my husband was his Dad and we were important. The simple act of calling me Mom gave me a sense of empowerment at a time when I felt completely powerless. I couldn’t feed him, but I was his Mom so I was supposed to ask questions. I couldn’t change his diaper, but it was OK that I hovered and watched as the nurses did. I couldn’t even hold him, but it was expected that I would call in the middle of the night to check on him. That was all I could do and none of it was questioned or frowned on or considered an imposition by the people who were really taking care of him during those days. Sitting in the NICU wasn’t at all how I had imagined my first days of motherhood. Being called Mom brought a bit of reality to an unreal situation. It reminded me that part of what we had planned had come true; we were the parents of a beautiful little boy, and hopefully, soon, I would be able to live up to my new title. About the Author Shannon’s son was born with HIE and was treated with the Cool-Cap System at NYU Medical Center’s NICU. She shared her story as a “thank-you” to the NICU team and hopes it will be helpful to others who find themselves in similar circumstances. Curr Probl Pediatr Adolesc Health Care 2011;41:154 1538-5442/$ - see front matter © 2011 Mosby, Inc. All rights reserved. doi:10.1016/j.cppeds.2010.12.003

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Curr Probl Pediatr Adolesc Health Care, May/June 2011