Tessa Reed Shea's Documentary: Help Has Arrived!

Thursday, April 14, 2011

Help Has Arrived!

It was an eventful day in the house today. First Daddy and I went to see our favorite neonatologist Dr. Jason Gien at the special care clinic at Children's Hospital. I don't travel in the car much because sitting in the car seat really upsets me, but I do like getting out of the house once in a while.

I now weigh 10 lbs 2 oz so he had to increase my dose for some medications:) Dr. Gien said my lungs sounded clear which Mommy and Daddy were worried about since I've been having trouble swallowing my saliva and making loud breathing sounds every once in a while. I will visit with the Dr. again in the next few weeks.

After Daddy and I got back from the Dr., Nana Shea had just arrived! We got a chance to cuddle which was really nice. She will be here for the next few weeks and I can't wait to spend time with her.

Then Mommy came home and her and Daddy met with a nurse from Denver Hospice. The nurse was very nice and Mommy and Daddy decided that they will be the ones who will come and take care of me. The nurse will come to see me one to two times a week and help make sure I am comfortable and pain free.

Well, it is late now and time to go snuggle in bed. I will check back in again tomorrow!

2 comments:

John A.April 15, 2011 at 1:13 AM
Tessa......so happy to see you with your Nana! I am looking forward to my trip to Denver in a couple weeks so I can get a little snuggle time with my new niece:)

Love to all,

Uncle John

P.S. Aunt Eileen sends her love too
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mlhApril 15, 2011 at 5:57 AM
I am adding your family to the prayer burden basket at the Church of St. Ann in Lawrenceville, NJ. You will be remembered at every liturgy celebrated there. Mary Louise Hartman
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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.