Fourteen years ago, I was on bedrest watching ‘Grown Ups’ on the television in my hospital room, enjoying a Dairy Queen Blizzard, and praying our identical twin girls would not arrive too soon. I was 23 weeks and 4 days along in my pregnancy.
Despite my prayers, less than 24 hours later, they were born. I was put under general anesthesia in a flurry of medical staff members working to deliver and save both of our daughters. I am forever grateful for the wonderful team at the hospital that day, including my OB/GYN who happened to be on call. I will never forget her saying “We will do all we can.” At 12:35 p.m. and 12:36 p.m., Claire Josephine and Mary Gladys arrived weighing only 1lb. 2oz. and 1lb. 4oz.
When I awoke from the anesthesia, they wheeled me into the Neonatal Intensive Care Unit (NICU). My husband, Paul, and I did not know what was in store for our family. We knew no one in our network who had welcomed a premature baby or experienced the NICU.
We were overwhelmed by it all. In our hospital room, very few said “Congratulations!” Most said, “I’m sorry.”
We prayed. We talked. We called our pastor. We weighed options, decisions, and choices. We will never forget speaking with our pastor sharing our overwhelming feelings of making the wrong decision on our daughters’ care. He said, “You are making the best decisions you can, based upon the information you have.”
That simple phrase became the way we managed the rest of our NICU journey. My pregnancy journal became our NICU journal writing every word from the medical team, recording the girls’ weights, jotting down random thoughts and questions throughout the day. We made each decision based upon the information we had.
On day three, we received devastating news about Claire. She had dropped to only 15 ounces. and was diagnosed with Grades-3 and-4 brain bleeds. The doctors told us she had a high probability of not walking or talking. We did not know what her future would look like.
A few days later, another mom brought her son into the hospital for a pizza lunch. Our nurse recommended we attend. That moment—meeting Sam—changed our lives forever. Sitting across the table from us was a former 23-weeker with a slightly less devastating but similar prognosis to Claire. He was playing on his mom’s iPhone. He was a walking, talking 3-year-old. He gave us what we needed the most: hope.
One week after meeting Sam, our daughter Mary became very ill and passed the Sunday after Thanksgiving. After Mary passed, we powered through to go back to Claire. Caring for a newborn brings immense joy, as you nurture their every need. Yet, when that baby is one half of a set of twins, and the other is lost, joy is entangled with deep grief. The delight in each smile from Claire was shadowed by the absence of Mary.
We did not know what Claire’s future would look like or if she would come home with us. The cribs and the rug for the girls’ nursery had arrived that week. After Mary passed, we could not bring ourselves to put down the rug in their room for her living sister.. While we kept hope alive, we also knew Claire had a long way to go. The rug stayed rolled up in her room for nearly three months. Then, one day, the neonatologist told us we could “put down the rug.”
Claire was coming home.
I share all of this because the NICU is hard. Our journey was a rollercoaster of emotions, with hopeful highs and devastating lows. As I look back to 14 years ago, the emotions, the ‘what-ifs’, the unknowns all flood back like it was yesterday. Our 103-day NICU journey was an emotional rollercoaster filled with many ups and downs, bad and good days, difficult and joyful moments, but we kept hope with us at every turn.
The hope we received from meeting Sam has lived on with us over the past 14 years. Hope helped us take it ‘one day at a time’ in the NICU. Hope helped me find the strength to realize I could look after one baby after the loss of another. Hope kept us moving forward with daily physical therapy and occupational therapy, so she would eventually roll over, crawl, walk, feed herself, and drink out of a straw.
Hope pushed us to continue her physical therapy to this day as we help her stay strong. Hope created the need to share Claire’s story with her teachers to be sure we are all working together to help Claire feel as successful as possible in school.
Hope is the reason I tear up when I look at our beautiful soon to be 14-year-old daughter standing in front of me and remember the 15-ounce miracle in her isolette.
During one of our visits, I was speaking with Dr. Snyder, an incredible neonatologist who took care of Claire. Knowing the significance of her brain bleeds. I asked him what she would be able to do if she lived. He looked at me and said “She’s going to be the BEST Claire she can be.”
He was right: Claire continues to be the best she can be. She loves acting and musical theater. She sings everywhere she goes with her beautiful voice. She has built a wonderful group of friends. She is loved by all her teachers in school and her dedicated tutors. She continues her physical therapy without (too many) complaints.
