Tessa Reed Shea's Documentary: Snuggle x 2

Thursday, November 17, 2011

Snuggle x 2

My nurse Tiffany texted Mommy today and asked her "Did you tell Tess to be an angel today?". I am always an angel, but I was especially good today! Last night was a little different because I had two big poops again and they just totally stress me out.

I didn't need much suctioning today (unusual) and I even had a few calm moments when I was awake (double unusual). I was laying peacefully in my favorite side lying position and it appeared that I was looking around. If my eyes are open, my eyes are usually moving in an erratic pattern that normally indicates I am having seizure activity, but for some reason I was very different today.

After dinner Mommy got to hold me again! She picked me up when I was asleep, which is a risky move on its own since that usually wakes me up and causes me stress, but for some reason, this time I stayed asleep and we got more snuggle time! Brody even joined in on the fun while enjoying what is left from his Halloween bucket.

Let's hope I have as great a day tomorrow as I did today...and weekend too:)

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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.