Tessa Reed Shea's Documentary: Daddy

Thursday, August 11, 2011

Daddy

I spent the night with Daddy last night since Mommy. Pop-Pop, Nana and Brody went on a short road trip to the royal gorge in Canon City. I was tough for Daddy, needing lots of suctioning and having drops in my heart rate throughout the night. I had to go on oxygen again but was off later this morning.

Everyone got home this afternoon and I was so happy to hear their voices. I even got to hear Brody's voice since he is now feeling better and allowed to be near me. I got to snuggle with Nana again while Mommy and Pop-Pop took Brody out for a bike ride. One last snuggle day with Nana and Pop-Pop since they are leaving tomorrow to go back to NJ. I will be sad to see them go.

2 comments:

CarynAugust 12, 2011 at 4:27 PM
Did your Ma walk across the bridge? She said she wad going to do that....!
ReplyDelete
Replies
Tessa SheaAugust 12, 2011 at 8:46 PM
Ma didn't make it to the bridge, but if she did, she would have totally walked across it!
ReplyDelete
Replies

Add comment

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.