Tessa Reed Shea's Documentary: In the moment

Wednesday, December 14, 2011

In the moment

We have been without a computer the last few week so it has been too tough for Mommy to post, but hopefully we will be back up and running soon! Mommy has learned her lesson the hard way and will be backing things up (maybe a few different ways) on a regular basis.

It seems like things are going wrong in every way the last week - first the computer and then me. We increased all my medications which hasn't really helped me at all. Mommy and Daddy will talk to the Dr. again tonight to see what we will do next. I have a feeling we will be visiting the hospital again for some tests. Either that or maybe Mommy can learn to draw blood! We need aunt Sue or Nana Shea out here:-)

I am resting comfortably now but it is probably just because I am so exhausted from today.

I fell asleep late this afternoon with my hand near my mouth and Mommy thought it was really cute. I don't suck my thumb or put anything near my mouth so we though it was a good idea to capture this moment.

Someone told Mommy that the true nature of love, is to love your life as it is at this very moment. It is a struggle everyday to live by those words but, we are learning to try. I know I will not live as long as most people and the doctors didn't expect me to make it this far. So, we are all trying to appreciate and live every moment no matter what that moment throws at us.

We have such wonderful and caring people around us, and I especially love all my nurse who have really become part of our family. My newest nurse Heather brought us the sweetest gift tonight for our Christmas tree. It made us all a little teary eyed.

1 comment:

AnonymousDecember 20, 2011 at 12:56 PM
I am teary eyed looking at this ornament too. PS I loooooooove that picture of Tessa in black and white-it is soooo beautiful and she looks so peaceful. Can you send me a copy? Aunt Kathy
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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.