Tessa Reed Shea's Documentary: I gained a few ounces

Monday, August 1, 2011

I gained a few ounces

I was able to sleep in my bassinet last night but still had some trouble with my oxygen stats and needed to be suctioned a few times. The good news was that I didn't need oxygen:)

I had a great day with my nurse Joy today and enjoyed more yummy Colorado peaches. My Hospice nurse Lynda came to check on me and I now weigh 13 lbs 2.5 oz! I am gaining weight really slowly but not losing any weight which is a good thing.

Everyone got home tonight and I was able to sleep while Mommy, Daddy and Brody enjoyed a yummy veggie lasagna made by a family at Brody's montessori school. All the families and staff at the school have been so supportive the past few months and so generous by organizing meals twice a week for us. This is very helpful to Mommy and Daddy since someone has to be with me almost all the time and things are very busy when they get home.

My nurse Paula is here to take care of me tonight so Mommy and Daddy can get some rest. I got to spend a little time with Mommy before Paula got here and we took a "self portrait" together.

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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.