Tessa Reed Shea's Documentary: Well rested

Thursday, August 25, 2011

Well rested

Mommy and Daddy had the night off again last night so Mommy decided to take a break from the blog. That, and she didn't get a chance to get a good picture of me:-) My nurse Paula came again this week to watch me over night so Mommy and Daddy could have a another break. I had to go on oxygen around 10 pm and didn't get off it until early this morning. Suctioning wasn't bringing up my stats so oxygen made it easier for me to breath and relax and I had a really good night sleep.

Today was a fairly good day with my nurse Tiffany. I was pretty sleep and lethargic this morning, but started to get anxious and unable to relax around 10 am so she gave me a warm bath and that helped to calm me down. I started to get anxious again in the afternoon and was having lots of seizures but it turns out that it was just gas bothering me and I finally went #2. I felt better for a short time until I realized that I had poop all over me, yuck! Good thing Tiffany put me in a nice white shirt today...it was so bad, I had to get another bath. Score. That really tired me out and I went to sleep in no time. Even my loud crazy brother running around didn't wake me up.

Daddy got me all ready for bed and I'm working on finishing my last feeding now.

Mommy tried to take a video of me but she didn't quite get it right. I liked it, so I asked her to add it to the blog. I am getting so long that I'm going to have to get a new bassinet soon and, as you see in the video, even my changing table is getting a little snug.

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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.