Tessa Reed Shea's Documentary: Being Held

Thursday, February 2, 2012

Being Held

I've had some more good days and nights! Now that I've been more awake the last few days my seizures are becoming a little more noticeable. Don't get me wrong, I am still sleeping a lot but the times I am awake, it is usually consisting of seizures, coughing, suctioning and pooping.

I woke up with seizures and lots of secretions when Mommy and Daddy got home from work this evening and Mommy decided to hold me for a little bit and rock me. A few weeks ago I would have HATED that, but for some reason it worked tonight and my heart rate slowly went down and I actually fell asleep. I must have remembered the days when I would not let Mommy and Daddy put me down and the only way I would fall asleep is to have someone right near me so I felt like they were holding me. That got very difficult for everyone at night time!

Anyway, I rocked with Mommy for about a half hour and then she put me back in my crib on my back and I fell asleep! I am still asleep now and the snow is starting to fall. The weather folks are predicting a bunch of inches of snow tonight. We will se how it goes.

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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.