Born at Just 23 Weeks, Here is My Daughter's Story
Meet Everleigh, my youngest daughter who was born at 23 weeks due to incompetent cervix on January 8, 2020. Everleigh spent 14 months in the hospital and was able to come home in March 2021. Everleigh is diagnosed with Prematurity (23.5 weeks GA), Cerebral Palsy, Bronchopulmonary Dysplasia, ventilator dependent secondary to chronic respiratory failure, history of pulmonary hypertension (she healed from this before we left the hospital), GERD and delayed milestones of childhood. My pregnancy started out normal just like my first but at 17 weeks I had to get an emergency cerclage due to being diagnosed with an incompetent cervix. Everleigh developed severe Bronchopulmonary Dysplasia early on in the NICU due to being on the ventilator for a long length of time which also exacerbated her developing Pulmonary Hypertension. Everleigh almost died multiple times during her NICU stay. The doctors still till this day can't tell you how she is here but we knew God had bigger plans for our girl.
At six months her father and I decided to advocate for the tracheostomy. We were tired of seeing Everleigh intubated and miserable and knew with continued unplanned extubations we might lose her. We knew the trach would be a game changer for her developmentally and it would help start the path of healing her lungs in a stable way. Before we left the hospital, our rehab medicine doctor diagnosed Everleigh with Cerebral Palsy. I knew this might be a possibility due to her history of trauma but it still hurt to hear the diagnosis. Her father and I grieved for a short period of time but we decided we would never let this diagnosis define her or box her in. We were able to start early intervention services immediately after we got home in March and Everleigh has taken off. Before leaving the hospital, she could not sit up or roll over by herself. Now, Everleigh is sitting up by herself, walking with a gate trainer, reaching/grasping for toys, starting to crawl and standing almost by herself despite having hand and feet aversion. Everleigh also just passed her swallow study and is able to work on feeding.
I hope Everleigh's story has encouraged you. Despite the diagnosis and all the stresses that come with having a medically complex child, we are so blessed and happy! Our lives as a family are so much better with Everleigh in it and so FULL. Please let her story remind you to not let a diagnosis or situation define the rest of your life. Take each day and celebrate the small wins. But most importantly, don't be afraid to advocate for the ones you love! #Jeramiah2911
