Tessa Reed Shea's Documentary: Soaked Mommy!

Tuesday, March 6, 2012

Soaked Mommy!

Mommy was too sleepy to help me post last night so we are catching up today! I've had a fever off and on over the past two days. I had a pretty good Sunday night and I wasn't on my best behavior for Joy in the morning on Monday but I made up for it in the afternoon.

My hospice nurse Carol stopped by on Monday after my bath and we are going to see if another oxygen face mask might work better since I seem to breath mostly through my mouth and my nasal cannula only goes into my nose. That may be one reason why I am needing so much oxygen. When Mommy got home I was still asleep but I decided to wake up as soon as Joy left and just in time for dinner. Luckily Daddy got home and they took turns taking care of me while the other ate dinner with Brody.

Mommy decided to hold me in the rocking chair and read to me and see if that could get my heart rate down.

After holding me for about 20 minutes she felt something warm in her lap. I had been holding it all day and finally decided to go pee! My diaper could not keep up and I ended up soaking my pants along with Mommy's pants too. It was a big mess:-) Everything else seemed to fall into place after that and I fell asleep in my crib.

My night with my nurse Beth was great until about 5 am when I decided to poop TWICE! But, again it made me feel so much better and I fell fast asleep afterwards.

Today was more of the same with a pretty good day and a few rough patches. Overall I am doing much better than before my medicine increase but I am needing much more oxygen to maintain a somewhat normal oxygen percentage. Massage day tomorrow with my therapist Neala!

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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.