Tessa Reed Shea's Documentary: Hand Holding

Monday, January 16, 2012

Hand Holding

It was another difficult first part of the night and a very peaceful day. I slept most of the morning and early afternoon and then woke up this afternoon just in time for a bath with my nurse Joy. Boy did I give her a surprise when right after my bath I had big poop! Good thing she got my diaper on because it would have gone everywhere. Then I gave her another surprise by pooping again. Daddy's cousins Dorthea, Chris and Christina stopped by for a late afternoon visit. I hadn't seen them since I was almost three months old so it was great to hear their voices again.

I hadn't pooped in a while since I wasn't able to take my feedings yesterday and Saturday so my nurse Joy was able to catch up today. I fell back asleep after my big poop and then woke up again in time to see Mommy get home from work. After a nebulizer, morphine, hyocyamine, versed and finally coughing up congestion I finally calmed down and fell asleep again.

I got to hold Nana Shea and Brody's hand this evening while Mommy took a picture.

Shortly after my picture I woke up again and Daddy gave me another round of medicine and nothing seemed to work. My night nurse Beth is here now and hopefully she can get me to calm down.

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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.