Tessa Reed Shea's Documentary: Cupcake

Thursday, January 12, 2012

Cupcake

I have tried to wear the special outfit my Aunt Kathy bought me for Christmas but my fever has kept me from wearing it since it is too warm. But today my fever was low most of the day so my nurse Tiffany got me in my pretty cupcake dress!!

I had another rough morning which included lots of medication, nebulizers and suctioning. My heart rate was high all morning even though my fever was pretty low. Our surprise guest arrived today too...drumroll please....it is Nana Shea! She arrived after noon today and we got to hang out for a while.

My afternoon got better around 2pm when my heart rate started to drop back down to normal ranges and I finally fell asleep! I slept soundly until just around now (8pm). What a way to say hi to my nigh nurse Beth:-( Nana Shea bought me a cute new stuffed horse to cuddle with while I sleep. My brother came in to say goodnight while I was snuggling with my horse which was fun.

2 comments:

Chris, Ken, Abby & ZachJanuary 13, 2012 at 1:07 AM
Moms and Grandmas are the BEST!! Hope everyone enjoys spending time together. Love and miss you guys so much. Thinking about you and your family and sending prayers your way...
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AnonymousJanuary 15, 2012 at 2:17 PM
Tessa,
You look so beautiful in your cupcake dress!!! We love you and miss you sooo much!!
Love, Aunt Kathy, Uncle Eric, Jason, Ryan and Cassie
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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.