Tessa Reed Shea's Documentary: Paula

Wednesday, June 15, 2011

Paula

I had another difficult night last night but it was definitely a little better than Monday night! I woke up a few times and Daddy used the suction machine to clear me out and I was able to fall back asleep. Around 4 am I woke up having seizures and couldn't fall back asleep, so Daddy had to put me on his chest to sleep and I was able to calm down pretty quickly and fall back asleep.

So today my new nurse Paula started. She is going to come every Wednesday to take care of me and I liked her a lot. I was running a little fever this afternoon, so Paula gave me some medicine to help bring my fever down. I had some seizure episodes with Paula and she hooked me up to my pulse-ox and I was showing slightly low oxygen levels, but didn't need any oxygen since my color still looked ok.

Uncle Pat cooked us a wonderful meal tonight - thanks Uncle Pat!

I was able to sleep while everyone enjoyed their dinner which is a real treat for Mommy since she usually holds me at the dinner table while she eats:)

Then Uncle Pat gave me a cute bunny from the Atlanta Shea's that I plan on snuggling with tonight:) Thank you for my bunny!

P.s. I am enjoying all the fun summer outfits Nickie!

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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.