Everleigh was born on March 6, 2023 with wavy, blonde hair and dark blue eyes. She spent the first 2 months in the NICU. In utero she was diagnosed with an unbalanced translocation of her chromosomes 6 and 9, hydrocephalus, and Dandy Walker Malformation along with several other diagnoses. In the NICU she had an ETV surgery which unfortunately was unsuccessful leading her to need a shunt and then a month later, she needed a shunt revision. Everleigh had a g-tube placed at 4 months old due to low volume intake, and poor coordination, and endurance with her bottle. At 5 months old we discovered she had congenital hip dysplasia and needed bilateral hip surgery which required her to be in a spica cast for 12 weeks at 11 months old. Unfortunately one hip came out of socket throughout this process so she had to have another hip surgery at 17 months old followed by another 10 weeks in a spica cast. We discovered that Everleigh developed stomach and inguinal hernias after her first spica cast was taken off and got her inguinal hernia repaired in July of 2024 and the stomach hernia will be repaired when she is older. The PDA in her heart was repaired in August of 2024 to help reduce the dilation of her heart. Everleigh was hospitalized for 3 days the day after her PDA surgery due to edema in her epiglottis causing low oxygen levels due to being intubated with her hernia surgery and PDA surgery within 9 days of each other.
Everleigh began therapy services in the NICU and continued when she got home with outpatient and Early Intervention therapy services. Everleigh received hearing aids at 6 months old, started helmet therapy at 7 months old due to brachycephaly, and has gone through several DMI intensives in addition to her weekly therapy. Her therapy services have helped her to gain progress in both gross motor and fine motor skills, feeding skills, and communication. Everleigh’s development is slow but she continues to amaze us by making amazing strides by gaining more head control, rolling, working on supported sitting, reaching for toys, holding her bottle, feeding herself table food, waving, signing for “more”, making “raspberries”, and expressing herself with her vocalizations, smiles, giggles. Everleigh is developing her own unique personality and we absolutely adore her. Everleigh has already proved the maternal fetal medicine doctors wrong on what they said her limitations would be. We know she is able and capable of many things and that she will continue to amaze her parents and the world around her.