Today, we had the opportunity to re-visit the place where this journey all began. St. David’s Hospital held it’s annual Neonatal Intensive Care Unit (NICU) Reunion and this is the second year I’ve been lucky enough to take Braxton back to visit. It’s nice to celebrate and see other families and their success after having spent time in NICU. But there seems to be a flood of emotions for me that comes with this wonderful event. Most babies who spend time in NICU are there because they were born prematurely, but not Braxton. Braxton was full term and at 8 pounds, he was a giant compared to the other NICU babies. We felt out of place from the start. We were NOT supposed to be here. This is NOT how the story was supposed to go. Day after day we walked by the teeny tiny fit in the palm of your hands babies to visit our 8 pound 21 inch long baby boy who no one could give a definitive answer as to why he was being kept, and yet just like the teeny tiny babies, he was fighting for his life.
Braxton was in NICU for 3 weeks and 3 days, definitely the toughest 3 weeks and 3 days of our lives. The initial neonatologist who admitted Brax was convinced Braxton had a terrible genetic syndrome that would quickly end his life, from that day on Braxton has been defying all expectations and continues to stump the medical community. We are now 16 months into this journey and still know nothing more than we did those first few weeks of life. As I look back to those first weeks, I remember all of the nurses who worked with us and cared and loved Braxton so much. The nurses were amazing. My first night released from the hospital, we drove to the hospital where Braxton had been transported to and sat there for several hours and the nurse in charge of Braxton that night was so patient and empathetic. She answered all our questions as best she could, offered us advice and encouragement with stories of other babies who’d come and go in the NICU. She helped me get through all the wires so that for the first time in 36 hours I could hold my precious baby boy. We laughed as we watched Joseph try to change Braxton for the first time. Poor guy was terrified of all the wires and used about 10 wipes for his first ever diaper change. I cried as I held Braxton because I had no idea what the future would hold for him. We finally left and went home to try to get some rest before we’d come back to see our baby boy. This was our life for 3 weeks. Wake up, eat, get dressed go to the hospital, come home to be with Aileen, try to explain to her why she couldn’t go see her brother, try to love on her and make sure she knew we hadn’t forgotten her, then back to the hospital to visit and say goodnight to little man, home to bed to wake up and do it all over again.
Every day we went to the hospital and as our nurses changed, I was happy to see Braxton in such capable hands. They all knew what was going on with him, if the doctor came by while we weren’t there they’d call and update us, they listened, they talked, they cared. I’m so thankful for all of them. While NICU holds many sad memories of what might have been, what could have been, I’m also reminded that they did everything they could to make sure Braxton stayed alive. And I don’t think we ever thanked them enough. I’m fortunate to be able to see them again and catch them up on what Braxton has been going through and to be able to thank them again for doing so well with him. Bittersweet. So many memories, so many emotions, and so many blessings.
The event was really great. This year, Aileen was able to go with us and she definitely had more fun than Braxton, but that’s ok. The kids were able to wear costumes so that was pretty fun. I put Braxton in some Longhorn PJ’s that happened to have a Bevo hood, so he was Bevo 🙂 Aileen wore her vampire princess costume and thoroughly enjoyed all the goodies they had, cotton candy, games, face painting, balloon animals, and cake. I saw a few of the nurses who worked with Braxton and they were all happy to see him doing so well. Albeit emotional, today was a great day and I’m so grateful that St. David’s puts on this event and I look forward to next year and every year after.
// Edited to add this photo courtesy of St. David’s 🙂