Tessa Reed Shea's Documentary: 9 months

Wednesday, October 19, 2011

9 months

It has been 9 months and 1 day since I was born! I remember that day well...Mommy and Daddy were so happy to welcome me into the world and I took it pretty easy on Mommy. I was born with lots of fluid in me and they kept calling me "juicy". At the time they thought I was juicy because the birth was so quick, but it turns out I had so much fluid in me because I wasn't able to suck or swallow. It took the doctors about 12 hours to realize that my situation was much more serious than everyone had first thought.

It has been a really tough few days on me and I am wiped out. I was waking up every few hours with really bad seizures which would send my heart rate through the roof and my secretions would become uncontrollable. We tried increasing my Valium by 6mls a day and it didn't do a darn thing. So we had another call with Dr. Gien last night and I am back on the phenobarbital. We are going to give it one more try and be more aggressive with my dose and I will still get my full doses of Valium.

I had an awful night and morning but was finally able to fall asleep after my loading dose of phenobarbital. I have been asleep ever since and am happy for that because I have hardly slept at all the past few days.

The doctor is going to call again tonight and check and see how I am doing. We will come up with a plan for the next twelve hours and take it from there. We may not have a night nurse tonight so I am going to try and be a good girl for Mommy and Daddy but if my night is anything like the last few nights I am going to have a sleepy Daddy tomorrow!

1 comment:

KrisSheaOctober 20, 2011 at 7:15 AM
God bless you baby Tessa! Your Uncle Pat and Aunt Kris and your cousins Gavin & Colin love you very much! We wish you a happy 9th month old birthday a day late! XXOO's
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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.