Tessa Reed Shea's Documentary: Snoozing Saturday

Saturday, November 12, 2011

Snoozing Saturday

I would have been a good girl last night but I had another big poop for Daddy at around 4am! It of course got everywhere so it took Daddy a while to get everything all cleaned up! I was a good girl all day and did lots of sleeping and just a few episodes of spitting up some congestion.

Mommy finally got the video of Brody skiing downloaded but can't figure out how to rotate the video. Here it is, but you are going to have to rotate your head to see it right side up!

I got to hang out with Mommy this morning while Daddy, Brody, Uncle Eric and Jason went to the movies. I slept like an angel while Mommy got lots of stuff done around the house. Then Uncle Eric and Jason went food shopping so everyone else could relax!

Marsha came this evening to watch me while the gang enjoyed a dinner out. I wish I could have tagged along but car seats and public places are not really a good idea for me. I am much more comfortable in my boppy close to my oxygen and suction machine.

After dinner I got to hear everyone's voices and even got a few minutes to spend with my cousin Jason since Brody was in bed and not hogging him all to himself!

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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.