Tessa Reed Shea's Documentary: Guardian Angel

Wednesday, November 2, 2011

Guardian Angel

You wouldn't believe it but I had another HUGE poop last night. Mommy is really getting tired of soaking and scrubbing clothes and blankets. As she said, last night's poop was ridiculous! At least I'm regular...

Aside from the stress the poop puts on me, I did have another tough night and day. I needed morphine a few times and I was running a low grade fever today. We will keep an eye on that and make sure it stays under control. I didn't sleep much today either so I am really wiped out now. I have been asleep for the past 4 hours. I usually wake up around 9 so we will see if I follow the same pattern tonight.

I got a little present today - a Guardian Angel from my Uncle Frankfurter and Aunt Nancy. Mommy pinned it to my bassinet so it can protect me while I sleep. Brody and I will debut our new t-shirts soon, so stay tuned. Thanks Uncle F and Aunt N!

1 comment:

AnonymousNovember 3, 2011 at 6:30 PM
Dearest Tessa-you are most welcome-those two little angels are protecting you and Brody because you are both such sweet angels yourselves. God bless you and your whole family. Love, Aunt Nancy and Uncle "Furter"
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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.