Katelyn was born October 4, 2012 with Spina Bifida (Myelomeningocele), an open neural tube defect in which the spine/spinal cord do not completely form and protrude through the spine and opening in the back, causing nerve damage below the defect location. Katelyn’s myelomeningocele is at L4/L5-S1, which is low on the spine, but she does not have feeling in or move her legs as much as we expected. She is quite the fighter, so we are hoping this improves as she grows. She also has other common conditions associated with Spina Bifida – Hydrocephalus, Chiari Malformation, Neurogenic bladder/bowel, club feet, inguinal hernia, hip dysplasia, and tracheomalacia.
She had spinal surgery at 1 day old to close up the opening in her back. She had a second surgery at 1 week old to place a VP shunt in her brain to drain excess cerebral spinal fluid from her ventricles. She was also a 34 week preemie and had apnea (periods of stopped breathing/shallow breathing) and was sent home from the NICU on Oxygen. 2 months later, she had several ‘blue spells’ where she stopped breathing and we had to give her rescue breaths. She spent 70 days of her first 6 months of life in the Nationwide Children’s Hospital and has had 4 surgeries.
Her Pulmonary doctor diagnosed her with GERD (reflux) and determined that she was aspirating formula into her lungs, which is why she was so sick. She had a GJ (gastro-jejunum) tube placed and receives all feeds through the tube. This did wonders for her and allowed us to remove the oxygen cannula while she is awake. When she is asleep, however, she cannot maintain her oxygen saturation levels and still has sleep apnea episodes. We are still trying to figure this part of it out.
From a developmental standpoint, she is delayed by only a few months at this point and has been working hard at therapy on her gross motor and fine motor skills. Her head control is good and she is working on the trunk muscles so that she can sit up independently. She is starting to get feeling in her legs, because she responds when we tickle her feet and will move them at the ankles or sometimes even at the knee.
Katelyn loves to smile, laugh at her very entertaining older sisters, and just recently learned to give a high five. She is the sweetest little baby and truly an inspiration in our lives.