Tessa Reed Shea's Documentary: Pooped!

Wednesday, July 27, 2011

Pooped!

Well, I did twice today, but that is not what I meant! I meant that I am tired from such a fun few days with Aunt Caryn. She was so nice to help me with the blog yesterday and even taught me some new words :-) Here is a picture Aunt Caryn took while she was feeding me last night.

I had a pretty good night last night with Mommy, or "Ma" as Aunt Caryn taught me. Mommy gave me a dose of Hyocyamine before bed and it really kept my secretions down which can keep me awake at night. I started out sleeping in my bassinet, but my arching got so bad that Mommy brought me in bed with her. That always seems to help me calm down instantly. It makes me feel so secure when I open my eyes and can see their faces right in front of me and can hold their hand all night long.

With all the excitement from our visitors, I totally forgot to thank the CA-Shea's for my adorable outfits and hand-printing kit! I love "ruffle butt" outfits which tend to make me look a little curvier since I am lacking in the booty department. Mommy and Daddy promised me that we can do the hand printing with Brody this weekend - can't wait!

Mommy and Aunt Caryn went on a photo adventure today to take pictures of scenery from our beautiful state! Here are three of my favorites:

It was so nice to see you again Aunt Caryn & Uncle Cayce. Thank you for visiting me and make sure you come back soon!

1 comment:

CarynJuly 28, 2011 at 12:48 PM
Thanks for being such a great hostess Tessa! Your Ma is a great photographer!
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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.