We really want to unhook all these wires and run!

Jetty is getting so tired of Mommy's kisses.

Sunday, June 28th

Above is a picture of me and Mommom

Today has not been a good day for us. The neurologists came in this morning announcing that the EEG results was the worse one yet. They feel that Jetty is suffering from the Ohtahara Syndrome which was caused by the cysts on his brain. This syndrome, along with having no corpus collusom, has just made this road much longer.

Hello Jetty!

Jetty is getting used to looking at his Daddy! His eyes are starting to open.

The EEG results from this afternoon showed more seizures than the prior two EEGs. They decided to increase his dosage of Keppra and decrease the dosage of Phenobarbitol to see what that does.

Mommy and Daddy went down to Fells Point today for lunch since Jetty was getting an EEG which takes hours. They ate sushi and it was really good. They are packing lunch tomorrow because they are planning on being here all day since Jetty is finally awake. Hopefully they will be able to work with Jetty on eating from a bottle or a booby and not a tube!

Good night!

Look Aunt Debbie, I am doing my exercise of crossing my arms and legs to stimulate my brain like you told me to! It made me poopy in my diaper.

Daddy told me to tell you thanks!

Hi Everyone!

Thank You

Jetty would like to thank everyone for all of their support. His Mommy and Daddy have received support from everyone in so many ways. Groceries, cards, comments/posts, meals, etc. It is really making this difficult time go by easier.
Daddy would also like to thank his office for taking care of absolutely everything during his absence. It is a lot of weight removed from his shoulders and he truly appreciates it.

The Neurologist team came by around 10am and watched some of his twitching. They don't feel that they are the seizures that are going on but they decided they want to do another EEG today to make sure.
So far, all we know is that his brain was abnormally formed. Large cists developed early and where they developed on the brain, that part of the brain didn't develop. He also doesn't have a corpus callosum. They also said that the normal brain should be rippley, where Jetty's is smooth. Premature babies have smooth brains as they are still developing. The more rigid/rippley the brain is, the more sophisticated they are.
So Jamie and I have are going to have a lot of work to do with Jetty to teach Jetty's brain do what the missing parts would normally do.

Day 10

It is Saturday morning and Jetty decided to take a very quick peek at Mommy and Daddy. He closed them back up quick and hasn't opened them since. Daddy thought that maybe it was the bright lights that he didn't like so he had the nurses turn down some lights and he held up a blanket to shield the light from his eyes. When that didn't work, we realized that poor Jetty didn't like what he saw. Mommy said he saw his Daddy.

The neurologist said that Jetty's brain "issues" are not characterized by any known genetic syndrome. That is good news and bad. It is good because we still don't know his future abilities. It is bad because we have nothing to compare him to.

My name is Jetty and I like to have seizures. These Doctors try and stop them but I don't let them. I was able to hide them from them but they brought out this big machine and found my secret stash.

I overheard them telling Mommy and Daddy that they are going to increase my dosage of phenobarbital.

I am starting to find it awfully convenient for Jamie that she has to "go pump" everytime his diaper needs changing.

Watch the video of Jetty's EEG. We'll know the results here shortly.

EEG machine

Lots of wires involved but luckily no more haircuts.

I asked the EEG technician if she could hook up my stereo at home.

Jetty can sleep standing up!

The swelling in Jetty's eyes have gone down a lot. Hopefully he will be able to open them today. They also have turned the oxygen down a lot and he seems to be doing fine. He is however doing a lot of twitching with his arms and legs. Are they seizures? Are they just normal baby movements? That is what is frustrating.
They are supposed to do another EEG today to check for seizures.

Jetty has new neighbors! Triplets came in to our room. They each weighed less than 3 lbs. Jetty told me to scope them out. They look like good people.

Things were good before he decided to poop on Daddy.

Jetty has a new shirt on since he decided to spray poop and pee all over his daddy, his clothes and parts of the NICU floor. He couldn't do it when Mommy was changing his diaper.