Tessa Reed Shea's Documentary: Happy New Year

Sunday, January 1, 2012

Happy New Year

It was a typical day here in the Shea house instead of a new year celebration. There wer syringes full a medicine, lots of nebulizer treatments and worrying instead of top hats, noise makers and champagne. The holidays seem particularly difficult for all of us. This should be about the time I am starting to walk but I can't even hold my head up or any of my limbs. The only time I move at all is when I am having a seizure. Life doesn't seem fair, but it is my life and I have my Mommy, Daddy and Brody to help me through this journey. The unknown is the hardest part so we are all thankful for the time I have shared with everyone in 2011. We are wishing 2012 is a peaceful new year.

I have been fighting a fever and we thought the fight was over but boy were we wrong. I had a very hard few days and my fever was back in full force today. My heart rate has been sky high because of the fever and my oxygen has been all over the map. I am resting peacefully now facing the sunshine. It is too cold for me to go outside but I am able to enjoy the view from my warm crib.

1 comment:

CarynJanuary 2, 2012 at 10:09 PM
Praying for you to be strong in 2012 baby girl!
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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.