Tessa Reed Shea's Documentary: I am 8 months old today!

Sunday, September 18, 2011

I am 8 months old today!

I can't believe I am 8 months old today...how time flies! My night last night was pretty rough again until about midnight. Daddy gave me some morphine which helped to slow my respiratory rate and calm me down. Once I got all snuggled into bed I fell asleep and was pretty good for most of the night. I woke up a little earlier than normal and got all dressed for the day. My brother Brody came in to say hello and watch me while Mommy got all my medications and food together.

I had a pretty good morning while Daddy and Brody went to the pool. I seem to really like laying on my tummy again and Mommy was able to get me to eat some food while I slept. I woke up this afternoon and was having seizure activity with lots of arching and trouble with my secretions so we tried Versed again and it didn't seem to help. We called to get a higher dose since this first dose was just a guess. Daddy knew it wouldn't be enough.

My seizure activity lasted so long that my respirations picked up again so we tried morphine and some positions changes and I finally calmed down and fell asleep. I am now eating some more food with Mommy.

2 comments:

AnonymousSeptember 19, 2011 at 6:44 AM
Brody is such a great big brother, so gentle with you Tessa and gives good kisses, too. We can see you loove him too! This video is Oscar material-Tessa, you are with us in our prayers every day, feel better and even though we are miles away, we send Mommy and Daddy kisses from us for the great job they are doing, and kisses to you and Brody, too, of course. Nancy and Frank V
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Tessa SheaSeptember 19, 2011 at 9:58 PM
The Oscars sound like fun! I just need a dress and a date:-)
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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.