Tessa Reed Shea's Documentary: Peaches

Sunday, July 31, 2011

Peaches

I had a pretty rough night last night. I started out in my bassinet but couldn't get calm so Mommy held me in her arms all night. I woke up a few times with twitches and she would hold me tighter which just helps calm me down so I can fall back asleep. I had to go on oxygen around 3 am since suctioning wouldn't bring my oxygen levels up high enough. I was able to get off the oxygen by mid morning.

The Maillet's came over to hang out and swim in the pool today. Brody had so much fun hanging out with Jackson and Grace. I also got to thank Grace 1st hand for letting me borrow lots of her cute outfits....I have to thank her for my stylish clothes:) Then we all enjoyed a yummy lunch that Nickie made us and then it was time for a nap!!

Mommy went grocery shopping and came back with fresh Colorado peaches. She steamed some up and I had my first taste today. She watered them down just enough so they would fit through my tube. Maybe later in the week I can get a taste on my tongue.

Then we all went outside for one last swim. I stayed dry since I didn't want to get my new pretty dress wet that Aunt Eileen picked out for me:) We all enjoyed dinner out on the patio until it was time to go inside and get ready for bed.

I was pretty gunky when we got inside and was able to cough up a lot of mucus during my last feeding. Hopefully that means I will have a calm evening and get some rest. I'm sure Daddy will appreciate that since he is on duty tonight!

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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.