Taylor was born 4.10.11, at my 20 week ultrasound we found out that she had spina bifida, and hydrocephalus. We were both monitored closely for the next 18 weeks until she was born & every doctor was very hopeful & reassuring that she had a great case of the birth defect, & that at most, she would only need a shunt placed after her myelo repair.
On 4.11.11, at just 12 hours old, Taylor had her first surgery, her myelo repair, & plastic surgery fixed her skin around the open hole from her L4-S1 vertebrae.
18 days later, she had a GTube placed & a funduplication done because her stomach muscles didn't contract & everything she ate, she would aspirate.
37 days in the NICU & we finally came home!
She ended up coding at the doctor's office 2 days later & was rushed to a PICU & from then on out, we spent the next 3 months in & out of ICUs in Kentucky & West Virginia.
In July, she had a VP shunt placed after coding in the car on me & her Grandma, & 2 days later she got her trach put in.
September, Taylor's lungs collapsed from pneumonia, & she was placed on an oscillator for 13 days & we were told she wouldn't survive, but she did!
From July-October we stayed in the PICU at UK & we decided to move to Ohio in January 2012.
Taylor is currently on a ventilator 24/7 due to her lungs collapsing & sleep apnea.
She has Chiari Malformation Type 2, Hypotonia, Hydrocephalus, Neurogenic Bladder, Hypertension, Vocal Chord Paralysis, Decreased Sensation in her legs, and is Developmentally Delayed by 6-9 months.
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