Elliott was born at 29 weeks due to complications with HELLP Syndrome. He only weighed 1005 grams or 2 pounds when he was born.
Our 100-day NICU stay was split between UC Health in Aurora and Children’s Hospital in Colorado Springs. The early days were spent visiting our boy and spending nights at the Ronald McDonald House. Elliott was born during one of the significant spikes in the pandemic and we had only been living in Colorado for about 4 months. Our family and friends were sprinkled throughout the country and as the news of Elliott’s early arrival began reaching our loved ones messages came pouring in of: “What can we do? What do you need?” Nick and I were never able to answer. We didn’t know what we needed-it was moment by moment survival mode, learning all the new NICU lingo, understanding everything that was going on with our son, adjusting to our new role as parents and quickly changing expectations as we learned that our first days, weeks, and even months as new parents was going to look so different from what we imagined.
I found people came pouring out of the woodwork. I received lots of messages like, “I was a premie-look how big I am now.” While these messages were filled with the best intentions. That was not what I could think about in the early days with Elliott. I was having a hard time imagining Elliott as a toddler or teen because it was painful to think ahead more than five minutes.
What did bring me comfort was the stories from families who had babies in the NICU at the same time as us. Love and support and connections from the Love for Lily NICU community felt like just what we needed. The community allowed us to relate to others in challenging times. Each situation is so unique, yet the feelings we experience are all the same. I have this saying with a friend who had a full-term baby in the NICU, “one day or one hundred days… it is all the same.” This is not a journey anyone has to make on their own and Love for Lily made us feel that we never had to be.
1 Year Out of the NICU
NICU parents often talk about losing that golden hour time and experiencing perinatal trauma has meant that I have spent a lot of time grieving all those things I missed right when Elliott was born. A NICU experience is stressful and heartbreaking, but in some ways it was the calm before the storm of bringing him home. It was nerve wracking because he was sick and needed a lot of medical attention, but those peaceful moments with just us in the NICU were actually kind of special. As I process Elliott’s NICU journey, the more I long for those moments when I was able to hold my tiny two pounder because during those times I was able to be fully present with Elliott without distractions from the outside world.
I said earlier I wasn’t able to imagine Elliott as a toddler or teen while he was in the NICU, but eventually it felt that fog lifted and we are living our life as a family of 3 and look forward to the memories we can make together. This NICU journey will be with us forever though. It has defined who we are as a family.
April 17th marks one year out of the NICU and we watch him meet milestones and accomplish things with the same feistiness as he had from day one in the NICU. In 20 years, I can imagine going to parents weekend at the University of Wisconsin (of course he will be a Badger like his mom and dad) and I imagine 6 foot, 21 year old Elliott pulling me aside at the tailgate and telling me that he is really embarrassed every time I start to cry and tell his friends that he was only 2 pounds when he was born.
We have had an epic year out of the NICU. Elliott, our curious, happy, and social little guy, has gotten to travel all over, attended his first concert, and has gotten to meet all of the friends and family who were our cheering section throughout our entire NICU journey. He loves books, cookies, and dogs all of which he calls “da-da.”