Tessa Reed Shea's Documentary: Music Girl

Tuesday, December 6, 2011

Music Girl

I've had two quiet days mixed in with some difficult nights. I've been sleeping a lot during the day and when I am awake, I am working on coughing up congestion. My tough times are just around 8 or 9pm and it has been taking me a long time to get comfortable enough to fall asleep.

I've also been having a few strange dips in my oxygen where we can't seem to keep my saturation numbers up no matter how high we turn up the oxygen. Today my nurse tried taking away my mask and using the nasal cannula's and that worked for a little bit. This evening Mommy thought it was bothering me so she cut the little prongs a bit too short and now it won't stay in my nose....we may have to go back to the mask.

My new room has lots of new ways for me to listen to music which I am really enjoying! I love my swimming fishy, my mobile and some great lullaby CD's. They have been very helpful in getting me to calm down! I am really enjoying my new space which is much more calming and everything I need is right here.

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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.