Our family began when Mike and I married in 2010. We welcomed our first baby girl, Lucy, in 2014. Our second daughter, Emma, arrived in 2017. We were blessed one last time in March of 2019 when we learned we were pregnant with identical twin girls. 4 girls! We were in disbelief and so excited.
However, our lives took a heartbreaking turn during my pregnancy. At my 20 week ultrasound, we discovered that one of the twins had severe congenital heart disease. Over the course of the next month, we learned that there was no real hope for her long-term survival. We made the difficult decision not to intervene with our baby’s life after she was born, believing that keeping her alive for 6 months on a ventilator was not the right choice for her.
Our twins, Evelyn and Eleanor Grace, were born on September 2, 2019. Evelyn was immediately whisked off to the NICU, and we were placed in a room nearby with Eleanor Grace. The hospital staff worked tirelessly to ensure that every detail was taken care of to give us a peaceful and supportive environment during those precious hours of her life. Though our time together was short, we cherished every second we had with Eleanor Grace.
After she passed, though grief washed over us, we found solace in knowing that Eleanor Grace had been surrounded by love for her entire, short life. The experience taught us the strength of love and the preciousness of every moment.
Evelyn was a strong little baby. But she was only 2 lbs. 9 oz when she was born at 28 weeks. So began our 3 month stay in the NICU. Evelyn was put on a ventilator and feeding tubes. Days turned into weeks, weeks turned into months as Evie fought to become stronger and bigger.
We spent every available moment with Evelyn. We held her as much as they would allow and otherwise, sat with her reading or listening to music or napping. While there, we formed bonds with her and gave her love that we firmly believe caused her to grow stronger and get healthy faster. But, we were lucky to live blocks from Children’s Hospital and we wondered how families from out of town managed in similar situations. We realized that as hard as having Evie in the NICU was for our family, it is significantly harder for families who are not from the St. Louis area, especially those who have financial strains.
This realization motivated us to create a foundation in honor of our daughter, Eleanor Grace. We want to turn our family’s grief into a positive change to help others facing similar situations. Our foundation aims to provide housing for pregnant women and families who live out of town who have infants suffering from CHD. We hope to create a meaningful impact and keep Eleanor Grace’s memory alive.