Tessa Reed Shea's Documentary: Ladies Night

Saturday, April 30, 2011

Ladies Night

Yes, it is Ladies Night! I am home with Mommy tonight while Daddy and Uncle John are out on the town.
So I had another tough night last night. I slept all night on Daddy and had to be suctioned out a few times. I don't think the Valium will totally help no matter how high my dose gets.
Today I got to snuggle with Uncle John while Mommy, Daddy and Brody went to the movies. Then right after my 4 pm feeding and before dinner Mommy tried to lay me in my bassinet and I haven't felt the same since. I was ok for about 10 minutes but then I got nervous by myself and I spit up.
Mommy sat with me for a while and tried to calm me down but I just couldn't do it. Then when it was time for my 7 pm feeding I was still worked up and just couldn't handle it. I kept having lots of seizures and was spitting up so Mommy had to keep suctioning me out. Mommy gave me a little massage which helped at first but when she started my feeding pump again I immediately got the hiccups and spit up, so no more food for me tonight!
I just got my meds and am resting on mommy (video). Hopefully I can fall asleep and get some good snuggle time tonight.

1 comment:

btaylor72May 1, 2011 at 11:13 AM
She's such a cutie and so lucky to have such wonderful parents and family.
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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.