In our time in the NICU with Owen, it didn’t take long for us to see that not all babies get to go home. For the first 100 days of his life, he was in a corner spot in the nursery that was next to one of the spaces reserved for the most imminently critical patients. Owen’s spot and this other spot were on adjacent walls, so the head of his bed and the other babies’ bed was very close to each other. If they were both on ventilators (which was nearly always) people often had to turn side ways to walk between the equipment to get to the one side of each baby. In other words, we were very close.
HIPAA or not, you couldn’t help but overhear bits and pieces. On two occasions, I heard parents being told there was nothing more that could be done. On several occasions I heard sobs as parents cried behind the curtain while holding their child that they knew was going to die. My heart broke with each passing.
One of Owen’s roommates passed during the day while I was visiting. I returned to Owen’s bedside after a lunch break to see him thrashing in his bed disturbed by the commotion next to him. I instinctively picked up Owen and watched in horror as the doctors and nurses worked to save the baby next to him. I knew I had no right to be there, but I couldn’t put my own child down until I was gently asked to leave for 30-45 minutes. About 30 minutes later, the mother came into the family room with a resident who pointed out the phone to her. I couldn’t let her make the call to her husband in front of a full family room. I stood up and handed her my cell phone and told her where to go to make a private phone call. I waited another 30-45 minutes before I went back to the nursery and waited at the door until Owen’s nurse saw me and said I could come in. I could hear the mother’s sobs and saw nurses and the social worker come out from the curtain with tears streaming down their cheeks. I cried as I sat with my hands on Owen’s feet and forehead.
That was Aqueem. He lived less than 2 weeks. His loss will forever be ingrained in my mind. I am one of the few who had the honor of knowing him. Aqueem was the smallest baby I had personally seen in the NICU; just 400 grams. Whenever I hear of survivors of his size, I always think of him.
There was also Britta. She was born on the same day as Owen, the Thursday before Easter. Britta was full term and, I’ve since learned, was born with minimal brain activity. When we came in on Easter Sunday, she had the cutest floral Easter dress. Beautiful Britta with the chubbiest cheeks and blonde hair is who I think of whenever I see a baby in a floral dress. I saw her mom last night at a Amplatz parent advisory board meeting. She joined the board as a way to keep Britta’s memory alive. I’m honored to also be able to do that, even if it’s in a much smaller way.
There was also Louis. One of Lou’s sister was actually in that critical bed until Owen got so sick they had to move her to perform his surgery. Lou was on the other side of Owen. He was Owen’s first best friend. The nurses and I joked that they had a little game called, “let’s see who can set off the alarms more”. Louie’s heart rate would dip and then Owen’s would follow. Owen’s blood pressure would go low and Lou’s would go high. They were next to each other, but often couldn’t share a nurse – these two guys like to keep people on their toes. I think of Lou every day. I hope his parents and surviving sister (they were triplets) don’t mind sharing him with us, but I think of Lou as Owen’s guardian angel helping push him to keep working, just like the games they played in the NICU. I was honored to be one of the few who knew Lou and to help keep his memory alive. I wish I would have known his sister, Brooke, who passed away before they were transferred to Amplatz. But, I know of her and through Lou will also keep her memory alive.
Wyatt was not a roommate of Owen’s, but his mom is my friend. We got to know each other in the NICU when we were #2 and 3 and then #1 and 2 for oldest babies in the NICU. Wyatt was born April 10, 2011. He died November 22, 2011. Many things remind me of Wyatt. He’s who I walk for in the March of Dime’s March for Babies. I think of him on the 10th and the 22nd of each month but mostly, I think of him every night when I see the moon. His mom has always felt a connection between Wyatt and the moon and since she’s shared her story, I do too. My iPhone has several pictures of the moon that I take on nights that it’s especially beautiful. As I scroll through my pictures of my boys, I have small reminders of Wyatt. I had the honor of knowing Wyatt and I will keep his memory alive.
There were many other babies that were lost whose memory I also will keep alive. I may not have known them as closely as these four, but every baby’s life deserves to be remembered.