Tessa Reed Shea's Documentary: The Reed's Visit:)

Friday, April 22, 2011

The Reed's Visit:)

Today was a very busy day. Nana and Pop-Pop Reed flew in on an airplane this morning to see me! Then this afternoon Reverend Elizabeth came over to baptize me. Nana Reed brought my Mommy's christening dress that she wore when she was a baby. My aunts and cousins also wore the dress for their christening. Here is Mommy getting me dressed!

Then Nana Reed held me for some pictures!

To use in my baptism, Nana's friends gave her special holy water from Greece and special oil which Reverend Elizabeth used to say a special blessing for me. More pictures:)

Then my big brother Brody watered the flowers with my Baptism water...he loved that! He wanted to water the cars too but Reverend Elizabeth said we could only water the flowers.

Then I got some much needed snuggle time with Nana and Pop-Pop.

Mommy and Daddy also talked to nurse Linda and she increased my dose of Ativan and Valium. I had my first higher dose of Ativan and it doesn't seem to be helping yet. Hopefully I am able to get a good night sleep tonight. Last night was pretty rough so I could really use some good rest tonight.

5 comments:

MegApril 23, 2011 at 10:55 AM
I teared up seeing Tessa in that beautiful baptism dress - how wonderful!!!
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KathyApril 23, 2011 at 4:29 PM
She looks so beautiful in her christening dress!! Now all the Reed girls have worn it-yeah!!
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glisApril 23, 2011 at 5:07 PM
Uhuu!
Congrats Tessita - you rocked that dress!
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DinaApril 23, 2011 at 6:20 PM
So sweet!! Congratulations little Tessa!
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John A.April 23, 2011 at 10:31 PM
Congratulations Tessa......so great to see you with your Grandparents:)
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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.