Tessa Reed Shea's Documentary: Snuggle Time

Tuesday, November 15, 2011

Snuggle Time

Another pretty good night in the Shea house! We have upped my hyocyamine and that seems to really be helping me. When I start having seizures it increases my secretions. Since I can't swallow my secretions it makes me nervous and I start to have more seizures and the cycle goes on and on. Mommy and Daddy have started giving me the hyocyamine when I start to have seizures and that will usually make these "episodes" end a bit quicker since it helps dry up the secretions and acts as a sedative too.

I got a special treat today and Mommy held me for almost an hour until my nurse Darlene arrived. I don't get to be held that often since it is too hard for anyone to hold me and take care of me at the same time, especially when I am home with just one other person.

I actually look a little chunky in this photo!! It was so nice to snuggle with my Mommy:) Maybe I will get to snuggle with Daddy tomorrow.

3 comments:

Nana and Pop PopNovember 16, 2011 at 9:29 AM
Tessa you are getting cuter everyday. Nana and Pop Pop really miss you and Brody. We send you our love.
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Kaya's MommyNovember 17, 2011 at 5:26 PM
she is so beautiful and precious. thinking of you shea family. miss u much.
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Tessa SheaNovember 18, 2011 at 8:36 PM
Thank you Nana, Pop Pop and Leslie!
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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.