Tessa Reed Shea's Documentary: Sunday with the Meringers

Sunday, May 22, 2011

Sunday with the Meringers

So I had another rough night on Saturday night. I am just so congested that it has been really hard for me to sleep all night. Mommy and Daddy wake up a few times a night to use the suction machine to help clear my nose and throat. They also gave me a dose of Ativan on top of my Valium and that seemed to help get me back to sleep.

In the afternoon my great Uncle John and great Aunt Marie stopped by to visit me and Nana Reed. We all hung out and talked and then it finally stopped raining and the sun came out! So then we all went outside to enjoy the sunshine.

Then after dinner Mommy tried to feed me but I had so much congestion and my seizures were so bad I couldn't finish my milk. I finally was able to clear my throat after an hour or so and I was totally worn out (and so was Mommy). We both fell asleep on the couch and Daddy tried to use Mommy's camera to take a picture. He didn't know how to change the settings and it came out pretty blurry, but I kind of liked it...

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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.