Tessa Reed Shea's Documentary: Big girl food

Wednesday, February 8, 2012

Big girl food

I had a pretty rough night with my nurse Darlene last night. I was up more than normal and having more outward violent type seizures that kept waking me up. I was also running a low grade fever so I was taking fever reducers to keep it from getting out of control.

We had a few more than normal visitors today which made the day a bit more exciting. My hospice nurse Carol came by with the nutritionist Sydney. I am going to switch from baby formula to big girl formula but finding something that will fit down my tube seems to be a challenge. The pediasure we ordered will not fit down the tube that goes in my nose to my tummy so we are on the hunt for something new and thinner:-)

We had another nurse stop by this evening to fill out paperwork so we can use my special babysitter Marsha. It is 7pm now and all my visitors have left and I am just here with my family listening to my brother running around like a mad-man in between snuggling with Daddy!

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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.