November 10, 2015 4 minute read
The story of our loss began on November 19th, 2014. My parents flew into town from Florida to attend the gender ultrasound with us – my husband was flying home from San Francisco to Cleveland, Ohio for the appointment. I spent the day with my parents shopping for the baby – the baby that had measured perfectly from day one, whose genetic testing all came back normal, and who caused the doctors to say to me: “At your age, there are little to no risks.” I had the ideal pregnancy. So we shopped at the baby Gap for clothes and picked out nursery furniture from Pottery Barn. It was a happy day. That was until our appointment at 5:30pm…
Evelyn Grace was a doll during the ultrasound; she was active and happy to show the tech all she needed. We were overwhelmed with feelings of joy when she told us it was a girl – my husband said his first thought was walking her down the aisle on her wedding day. Soon after, the tech abruptly left the room and came back shortly after. She continued the ultrasound and after said the doctor would be in to talk to us. When the doctor came in she told us our daughter had some very severe congenital defects. Our daughter was diagnosed with a congenital diaphragmatic hernia, which means she had a hole allowing her belly contents to come into her chest cavity that were preventing her lungs for developing, she had hypoplastic left heart syndrome, and her kidneys were enlarged. Our entire world was crushed. The life of our daughter was fragile and extremely uncertain, but things were not looking good.
In the weeks and months following the anatomy ultrasound we met with dozens of specialists and attended dozens of appointments. We met with geneticists who had no answers; there was nothing they could find that would have caused this. We left each appointment with a little less hope and a little more certainty of the future of our daughter. We were advised by several medical staff to terminate the pregnancy, that with such a bad heart and such tiny lungs she had little chance to make it full term. We chose to leave the fragile life of our daughter in the hands of God, for He had given us our little blessing and chosen us to love and parent Evelyn.
Evie beat the odds when we made it to 37 weeks, and again when that week quickly came and went. On April 3rd, 2015 at 1:00am my waters broke, I was 38 weeks and 5 days with our sweet Evelyn. We relaxed at home until about 9:00am when our doctor told us to head to labor and delivery. It was a beautiful 65 degree day in Cleveland, we phoned our photographer, our family and friends, Lifebanc, and were prepared to have her that day. Evelyn, however, had different plans, and she wasn’t ready to make her appearance on that Friday. I was in labor for 30 hours before our Evelyn Grace came into the world and took her first breath at 6:48am on April 4th, 2015. We were told she would have 4-6 hours here on earth before going home to be with our King. Again, she was on her own time and fought her fight for only 58 minutes. She was surrounded by love in her short time, she was able to go outside with her daddy and see her first snow, we were able to baptize her, introduce her to her grandparents and family who traveled from all over to meet her, and we even had pictures taken, all before we sent our little girl off to begin her legacy. Evelyn was able to donate the gift of life and shortly after her passing she was taken to have her organs recovered and donated to change the lives of others. Our Evelyn Grace started her own legacy before she was even born, and then she began the legacy of neonatal donation here in Cleveland.
Evelyn was and is the light of our lives. In the last 7 months we have seen and continue to see the imprints her little feet have made on this world. Because of our Evelyn, we have had the opportunity to share her story, speak about donation, and encourage other families to choose to help families who have no hope. We weren’t given a future with our angel here on earth, but we see her in all the things we do. It has not been easy – the grieving does not get easier – we have been on the journey for almost a year, knowing we wouldn’t have forever with Evelyn. It never gets easier, but you learn. You learn to live with the pain, to live with the jealousy, the fear, the anger, the grief. We live today and every day for Evie.