Ten 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.
Less than 24 hours later at 12:35pm and 12:36pm, Claire Josephine and Mary Gladys, arrived weighing only 1lb. 2oz. and 1lb. 4oz each. 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 looking at me saying “We will do all we can.”
When I awoke from the anesthesia, they wheeled me into the Neonatal Intensive Care Unit (NICU). 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 3, we received devastating news about Claire. She had dropped to 15oz. 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, a 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 (then 3) 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: hope.
One week after meeting Sam, Mary became very ill and passed the Sunday after Thanksgiving. After Mary passed, we powered through to go back to Claire. Sam came to mind for us every day. Sam was successful. Claire could be successful.
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 Claire. 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. As I look back to 10 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.
When I researched Grades 3 and 4 brain bleeds on Google for far too many days, I shut my computer reminding myself these stories were not Claire’s story. When we had to make difficult decisions for Claire’s care, we relied on the information we had at hand. When I looked at one of Claire’s wonderful neonatologists and asked him what she would be able to do, he gave me the best answer anyone could give. He said, “Claire is going to be the best Claire she can be.” And…that is who she is today. The road from 23 weeks and 5 days to celebrating her 10th birthday on November 14th has been filled with many unknowns, extra doctor appointments, Early Intervention, therapists, specialists, evaluations, tutors, meetings with her school, support from family and friends, lots of love, and, most importantly, hope.
The hope we received from meeting Sam has lived on with us over the past 10 years. Hope helped us take it ‘one day at a time’ in the NICU. 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 10-year-old daughter standing in front of me and remember the 15oz. miracle in her isolette a decade ago. Hope is the reason we founded Today is a Good Day to help other families walking the similar path of the unknown.
Today – Claire continues to inspire. She is learning the drums, bells, and guitar. She loves to sing, especially country music. She has built a beautiful group of friends. She is loved by all her teachers in school and her dedicated tutor. She swims and continues her physical therapy without (too many) complaints. She loves to ride her bike and learned to roller skate this year.
At the end of the day, we have helped Claire be the “best Claire she can be” and it all started with hope.
Happy 10th Birthday my sweet miracle!
– Written by Martha Sharkey
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