Tessa Reed Shea's Documentary: Family and New PJs!

Friday, August 19, 2011

Family and New PJs!

Yesterday Daddy's cousin "Uncle Michael" and his son Michael stopped by for a visit. They are in town from PA and came over for dinner and to meet me! We had a wonderful time sitting and talking and I was being a very good girl. Uncle Michael and Michael read Brody some books before bed so Mommy and Daddy could get me ready for bed and start my 8pm feeding.

I think Brody was having lots of fun in his room because I could hear lots of laughing! I was acting pretty calm during my last feeding, but about 20 minutes after it was over I spit what seemed to be the entire feeding up all over Mommy and the couch. The spit up was so forceful that my tube came out of my tummy and out my mouth. I was either having lots of seizures and couldn't handle the feeding or was working on spitting up some mucus in my throat and ended up spitting up the milk along with the mucus. Sometime it is hard to tell since my seizures are not always outward seizures. Mommy and Daddy took my tube out and I got to sleep without my tube again:-)

I had a really good day today. My Hospice nurse came by today and I lost a little weight this week. I've had to stop eating fruit and veggies because they don't go through my small tube. We are waiting for the new bigger tubes to be delivered. My new boppy lounger pillow came today which is VERY comfy. It will be easier for me to lay on my side and my tummy. It is always a challenge to keep me comfortable so different options for position changes seem to help keep me calm.

Mommy bought Brody and I new pajamas today. It was the perfect opportunity for some pictures with my brother. He is very gentle with me and really loves it when Mommy and Daddy let him hold me. I love it to because it always means lots of kisses:)

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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.