Tessa Reed Shea's Documentary: Nana Reed arrives!

Wednesday, May 11, 2011

Nana Reed arrives!

I had a busy day today. Nana Reed arrived this morning to visit me and help Mommy and Daddy. I got to snuggle with her and she even fed me a few times.

My nurse Linda stopped by and then my doctor came to visit. I was so sleepy and could not wake up for the doctor. He got to listen to my lungs when I wasn't making all my grunting noises and said my congestion sounds like it is coming from the back of my throat rather than my lungs which is good news.

I didn't get a picture with Nana today but will hopefully get one tomorrow!

2 comments:

UnknownMay 12, 2011 at 11:59 AM
Little Tessa- we are so happy Nana Reed arrived safe and got to feed you. She will be a big help to Mommy and Daddy and, most importantly, she will get to kiss you and hug you!! We hope she gives you and Mommy (and Daddy, too) a kiss from us. You are in our prayers every day and so is Mommy and Daddy so that God is watching over all of you. Love, Aunt Nancy and Uncle Frank
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Nancy and Frank VarioMay 12, 2011 at 12:04 PM
Well Tessa, it happened again, our comment wound up under "John", so now I will check back with Nana Reed's instructions and hopefully get this to you under our REAL name. OOPs, Aunt Nancy and Uncle Frank
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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.