Tessa Reed Shea's Documentary: Day eater

Tuesday, August 30, 2011

Day eater

I've been having a tough time with my last two feedings of the day and yesterday was no different. Daddy was able to get all of my 8pm feeding down but it came right back up about 10 minutes after I finished. It got all over me, Daddy and the couch. We all had to change clothes while Mommy cleaned the couch.

Today my nurse fed me every 2.5 hours and I started my last feeding at 6pm which is much earlier than normal to avoid eating during my tough time of day (night time) and got about 3/4 of the way through it and had to stop about 8:30. The good news was that I didn't spit up at all!

I love my new Z-flo positioner! I slept so soundly last night and barely needed suctioning which makes them worth every penny. I used them a little bit today and really liked the prone position. It is hard to keep me from pulling my head back and to the side, which is why I look a little crooked in this photo.

They are so soft and keep me nice and contained and snuggled so I can really relax when I'm laying on them. It is taking some time for Mommy and Daddy to learn how to position me properly, but they are learning fast and my therapists are coming over on Friday to give us some ideas and tips.

1 comment:

AnonymousAugust 31, 2011 at 5:36 AM
Tessa you are so beautiful and you are really growing!!!
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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.