Tessa Reed Shea's Documentary: Happy Birthday to Me

Wednesday, May 18, 2011

Happy Birthday to Me

I am 4 months old today! I had a tough morning with lots of trouble during my feedings. I got to snuggle most of this morning with Nana and she had trouble feeding me because I kept spitting up and trying to cough up stuff to clear my throat. The past couple of days my mornings have been much more difficult than my nights.

It is still raining and chilly here in Denver so I haven't gotten to go outside in a few days. The forecast tomorrow doesn't look good either, but hopefully I get to sit in the sun with Nana this weekend.

Mommy and Brody brought me home a cake to celebrate my 4 month birthday! It was a yummy chocolate cake that I will get to taste later:) Mommy, Daddy, Brody and Nana all sang Happy Birthday to me.

1 comment:

glisMay 20, 2011 at 9:46 PM
Feliz Cumpleanos Tessita! That cake looked so yummy and pretty.
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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.