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Evie's Story
"Two weeks before Halloween, my husband, Jesse, and myself walked into the OBGYN clinic for a routine pregnancy checkup..."
I was 35 weeks pregnant and so far, my chart was 'clean'. After examining me, our midwife set up an ultrasound to see why I was measuring small. Having had two previous perfect pregnancies, this worried me a little, but mostly I was just excited to get to see our little girl again. We'd decided on Evie for her name.
During the ultrasound the tech spent a significant amount of time measuring and photographing Evie's brain. My normal buzz of questions ceased as I watched her write, 'vent?' on one such picture. She told us that Evie was around 4 lbs which we knew was smaller than she should be by about three weeks. We weren't too worried until the tech came back saying that we could go home and the doctor would call us in about 10 minutes. There was no doubt then that something was very wrong. They'd never called in the past after ultrasounds.
Our midwife called me and told me I was now considered high risk since they'd found scarring across Evie's brain, enlarged ventricles and an underdeveloped cerebellum. The next two weeks passed in a blur. We saw specialists, took non-stress tests, had two more ultrasounds and prayed without end. We knew that our hospital wouldn't be able to handle her so when my water broke at 2:30 a.m. on Halloween morning, we went straight to Des Moines. After Emergency C-section, Evie was taken up to the NICU, where most of my family awaited her. It was 2 hours before I came out of surgery and got to see her bright eyes for the first time.
After low scoring APGAR tests, the doctors knew something was very wrong with our pretty, 4 lb., 7 oz., 19 in. long girl, so they began the process of testing urine, blood and spinal fluid. On day two, the Neonatologist explained that Evie had a virus called Cytomegalovirus (CMV) and that it was most commonly known to cause hearing and vision loss among other problems. "The good news is that we have a treatment for her that may stop the progression of the damage," he explained. After sitting us down with my parents and a neurologist, we discussed the effects of both this horrible virus and the treatment, Gancyclovir. Those moments are a complete blur to me, in part because of the mind numbing pain killers they had me on and partly from the shock of knowing we had to decide whether or not we'd give our tiny baby chemo. In the end, we decided to give her the best shot at beating the virus that we could.
Finally, after spending six weeks in the NICU receiving toxic chemo-like drugs (which were administered by double-gloved nurses), receiving five blood-platelet transfusions to keep her alive, failing three hearing tests (ending in a diagnosis of profound bilateral hearing loss), undergoing two MRI's, an x-ray, tube feedings, multiple IV's, including a PICC-line in her leg for the duration of her stay and a battery of blood tests, which left her heals looking like bruised pin cushions, we were able to take our baby home. In the coming years we would find out just exactly what CMV really was all about.
During that first year Evie did next to nothing. She was a content baby, but rarely smiled and had little to no interest in toys, people, or food. She spent the majority of her time on her back when not being held. At three months of age she was fitted for hearing aids. At 11 months of age a nutritionist helped us get Evie on a special high calorie formula via prescription. Finally, Evie started moving around! At 12 months, she was implanted with a Cochlear Implant on her right side. Eight months later: the left side. To our delight, Evie loves to hear! She also loves being deaf! From the beginning we've signed to her and we always will, because our wonderful girl will always be deaf.
As life went on we discovered many things about our Evie. We found that she had an amazing laugh, that she was sweet and often very gentle. We watched her fall in love with her siblings and the silly noises they made. We also watched her fall behind in all areas of development. Evie was eventually diagnosed with the following things...Microcephaly, Cerebral Palsy Quadriplegia (affecting mostly her legs), Spastic Muscles combined with low muscle tone, Profound Bilateral Hearing Loss, Cortical Vision Impairment, Oral Aversion, Epilepsy, Reflux and Global Developmental Delays.
As a result of these many complex issues, Evie has recruited her own personal support team. "Team Evie" includes an Otolaryngologist, Audiologists, Cochlear Implant technicians, a Neurologist, a GI Specialist, Ophthalmologist, Low Vision Specialist, Physiatrist, Pediatric Physician, Chiropractor, Speech & Language Pathologist, Physical & Occupational Therapists and her AEA team: Early Access Specialist, Teacher of the Deaf/Hard of Hearing, Speech Therapist, OT, PT, Teacher of Visually Impaired and a Nutritionist. As you may have guessed, she keeps us busy! Our small town doesn't have access to all these specialists so we travel 2 � 3 hours away every few months to see them.
There are times that we find ourselves mourning something we've recently realized she might never do, but mostly we celebrate. We celebrate all the many little victories that she has. Signing her first word, "more"! Playing with a toy that has three steps to it! Pointing out five different body parts by voice prompting alone! Learning to steer her gait trainer through the obstacle course that is our house! Babbling new consonants like "baba" and "yaya"! And even the 'naughty' things like flipping chairs over and throwing tantrums. Evie is hilarious and brings us all amazing joy! I can't imagine life without her in it.
- Shared by her mother, Calley