Tessa Reed Shea's Documentary: Z-Flo

Monday, August 29, 2011

Z-Flo

I was a good girl for Mommy last night but it took me forever to finish my last feeding. I was able to hold down all my food today for Joy until my 5:00 pm feeding, which I started at 4:30. I ended up spitting up a lot of it and Mommy didn't give me any more since I was having such a rough time.

Mommy talked to Denver Hospice today about getting things to help position me better at night and during the day so I don't get sore or stiff. Haley went to Children's Hospital and picked me up some Z-Flo positioners that are sooooo cozy and soft. They mold to my body and keep me so secure and snuggled. I tried it out this afternoon after Mommy got home but was having such a rough time she didn't want to mess with me too much.

I will get to try it tonight for real and we are hoping it will be super comfortable and I will sleep peacefully all night...fingers crossed!

No comments:

Post a Comment

My Story

I was born on January 18, 2011 and weighed 6lbs 14.5 oz and was 19.75" long. I was born with lots of fluid in me and no desire to suck or swallow. It wasn't until 12 hours after I was born that doctors started to worry about me. I had an MRI, CT scan and EEG and they discovered severe damage to the thalamus in my brain and diffuse white matter.

I spent a month at the Children's Hospital NICU and they sent me home with a nasal gastric (NG) tube because I still couldn't eat. I started to make a little progress drinking from a bottle at home (10 mls at a time) and then I got the flu and ended up back at the hospital.

It seemed like just after the flu I started arching much more than I had before and lost all desire to want to eat with a bottle. My arching episodes got much worse and Mommy and Daddy thought I had reflux or maybe a stomach ulcer from my NG tube. We scheduled surgery for a stomach feeding tube (G-tube), but ended up at the emergency room because I was arching so much and started to have trouble breathing.

When we checked into the hospital for the 3rd time, they gave me morphine to see if it would take away any pain I might be having from my NG tube. When that didn't stop my arching, they knew something else was wrong. They hooked me up to an EEG and found out that I was have lots of seizures, abnormal brain activity and something called hypsarrhythmia.

The doctors left the EEG on for several days to study my brain activity and my brain activity was something most doctors at the hospital don't see very often. That is when they diagnosed me with Ohtahara Syndrome and also a form of West Syndrome. The seizures are a side effect from my brain injury and my prognosis is not very good. Mommy and Daddy from the advice of some amazing doctors, have decided to bring me home to spend time with my family and experience as much love as I possible can.