Tessa Reed Shea's Documentary: Food Change

Wednesday, August 17, 2011

Food Change

I had a very tough night with Mommy last night. I was up off and on throughout the night and needed lots of suctioning and hand holding. When I'm having seizures or anxiety, I love to have my hand held and it really calms me down. Around 4am I finally went #2 so Mommy changed my diaper and then I fell asleep in what seemed like a minute. Mommy then realized that I was probably having gas pain from my new formula that we are adding to my usual "Mommy Milk".

I was so tired from the night, that I slept almost all morning for Tiffany. She even put me in my bath tub and I immediately fell asleep and I slept right through getting lotioned.

Then we all sat down for another wonderful meal. So many generous families from my brother's school and Daddy's work have been sending meals home so Mommy and Daddy don't have to worry about cooking. I have enjoyed all the wonderful flavors and smells of the yummy food and I get more time to spend with Mommy and Daddy when they are not cooking.

I had to go on oxygen tonight and am pretty calm for my last feeding with Daddy. You can see my pretty blue eyes in this picture. They are not open often, so Mommy was happy to capture this moment.

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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.