Tessa Reed Shea's Documentary: They're Back

Friday, October 7, 2011

They're Back

Mommy and Daddy came back today to a very peaceful and happy girl. I was sound asleep all day and my nurse Tiffany gave me a nice bath and then my afternoon nebulizer treatment and I still didn't wake up. She took a picture of me and sent it to Mommy and Daddy - don't I look chill!

Then a little while later, I heard lots of loud sounds and realized my Mommy, Daddy and Brody were home! I heard all their voices but was still so sleepy that I just couldn't open my eyes. I started to wake up with some seizures around 4pm. I was having lots of secretions and needed lots of suctioning. I finally quieted down around dinner time and got one last feeding in while everyone else enjoyed some takeout.

Then I was up again around 8 with more seizures and Daddy put me in the magic boppy position and I finally calmed down! I missed my Daddy and his voice and heartbeat just helped me relax. I can't wait to snuggle tonight with Mommy! I am going to try and be a good girl for her but just never know how it is going to go....

Mommy was showing me some of the pictures from their trip and I sure wish I could have gone. I thought I would share some of my favorites:-)

1 comment:

CarynOctober 8, 2011 at 7:38 AM
Beautiful pics, but where are the "man overboard" ones? :)
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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.