I can get used to this treatment!

I had breastmilk for breakfast! I offered Daddy some but he said he was fine with just Coffee.

Stopped the Ketogenic Diet.

My glucose level dropped to 21 last night so they decided to stop feeding me mayonnaise. I was just starting to get used to it too. But I am glad I get mommy's milk again.

I am not happy! They are going to hook all of those wires up to my head and leave them there for 2 entire days! This will tell the Doctors if whether dances like the one I'm doing here are seizures or not. They want to know how constant they are and sometime I am just scratching my butt and they think its a seizure.

Mommom is breaking NICU rules and talking on the phone. She is also disturbing my comfortable nap.

Daddy trying to make me stop crying. His stinky breath is making me more fussy.

It is still a mystery to us where Jetty's big hands come from.

Jetty's bath time

Jetty gets a bath!

Daddy makes sure my "doo" is just right. Gotta keep these nurses happy!

Good morning!

We had our sit down meeting today with all of the Doctors from every field as planned.
It was devastating.

If Jetty ever learns to smile, he will have made a great accomplishment.
They feel he will never learn to walk or talk.

Jetty will prove them wrong. Together, we will make Jetty smile. Then after we celebrate that accomplishment, we will move on to something else.

Medically...
Jetty will always have seizures that will prevent his brain from developing. The seizures can be softened for periods of time (weeks or months) before they progress and we are forced to try something new. When they get them under control, we will be able to bring Jetty home with a feeding tube that gets surgically inserted into his stomach.
He is prone to physical problems such as cerebral palsy and is likely to get it or something else closely related. His brain is very abnormal and damaged and will never get better nor worse. The seizures are the main concern as they will progress over time.

We have a son with a lot of problems and a very poor prognosis. Jamie and I see those problems as obstacles and will learn ways to overcome them one by one.

Thanks again for all of your support.

Hey Barney, look at my new outfit! Daddy is so happy I am finally wearing pants and not that "gown". I can't wait to meet you. Daddy said that the security here won't let you in because you might knock over all the machines. I hope to meet you soon.

Please note: according to my mommy, this is not a dress. Daddy doesn't like it but it is very accessible for the nurses which suits me just fine.

Sorry, you might have to tilt your head to view this.

"Kangaroo Care" has been proven to be beneficial to infants. "Skin on skin contact"