Tessa Reed Shea's Documentary: It's Official!

Friday, April 29, 2011

It's Official!

It's official, Mommy missed her first post;-) But I must admit, it wasn't her fault! We fell asleep together and I was so comfortable Mommy didn't want to move me...

I had another rough day yesterday. I have been having a really hard time coughing up stuff and I always seem to be congested in my throat and nose and it is bothering me. I saw my nurse Linda and she said it sounded like I had some congestion move to my lungs but it is really hard for her for sure. She increased my dose of Valium again to try and get me to sleep at night. Mommy and Daddy keep suctioning me out but it never seems to clear everything out.

So yesterday, Mommy came home and we got to take another bath together and I loved it again. I think the moist air helped break up some congestion because after the bath I was able to spit up a bunch of mucous. Then Uncle Jerry stopped by to visit with me, Daddy and Uncle John.

Then, Daddy tried to feed me and I somehow pulled my tube out (love doing that to Daddy!)! So Mommy and Daddy had to put my feeding tube back in. I was pretty anxious so Mommy decided to hold me in bed while I ate. I was only able to finish part of my feeding, but we ended up staying in bed together all night! I love snuggling. Hopefully today will be better:)

Also, a shout out to my Uncle Rich! He is officially a year older today - Happy Birthday Uncle Rich.

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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.