We left the NICU at 11pm last night and had to come back to the hospital at 12:30am because Mommy left part of her breast pump in the NICU. Daddy was not very happy about that. But she can't pump without it and we don't need her breast exploding.

Jenn Hanifee is another Registered Nurse here at Johns Hopkins NICU. She is married to Matt Hanifee who went to Kent County High School with Mommy and Daddy. It was Jenn who gave us the briliant idea of starting this Blog.
She is Jetty's nurse today and he is very sleepy. He has been given a large dosage of seizure medicine which has really zonked him out. He requires more oxygen assistance because of the medicine. The good news is that the seizures seem to have stopped. However, it will take him a couple of days to get use to the drugs. Until then, he will sleep.
We need him awake to see if he can eat and breath on his own.

Poppop is so excited to have a future mate on his boat that is worth a damn.

Our good friend of ours, Kristin Timken, Registered Nurse at the NICU, left her babies to come check in with us.

Violent seizures erupted around 2pm today. They were pretty steady until 3:45ish which is when they gave him more medicine an hooked him up to the EEG Machine again.
Healthy brains have ventricals on them. If normal ventricals were like ponds, Jetty's are The Great Lakes.

The MRI results also gave us some more bad news...

Jetty's brain does not have a corpus callosum.

The corpus callosum is a structure of the brain in the longitudinal fissure that connects the left and right cerebral hemispheres. It also facilitates communication between the two hemispheres. It is the largest white matter structure in the brain, consisting of 200-250 million contralateral axonal projections. It is a wide, flat bundle of axons beneath the cortex. Much of the inter-hemispheric communication in the brain is conducted across the corpus callosum.

It is now day 6 and Jetty has been a sleep for almost the entire time due to the medicine.

Hopefully we will get some good news soon.

Mommy is feeding Jetty her breastmilk which she has been working very hard to produce so that he gets the best nutrition. The milk goes into a small tube that enters through his nose and runs to his tummy.

Jetty Townsend Fleetwood

Jetty

"home, homeland; rich, powerful, ruler"

Townsend is his Great Grandfather's middle name

(Robert Townsend Fleetwood, aka RT Fleetwood)

Some of the NICU nurses took us on a field trip to the MRI Dept. Creg helped.

The waiting room was full but evidently a NICU baby gets to go first because we went right in.

A team of neurologists (8 to be exact) came in to see us and gave us their preliminary findings. They said that there are cysts on the brain which caused parts of the brain not to form during development. Other parts formed abnormally. There are also seizures which are very active and the Doctors will need to keep monitoring the dosage of medicine.

This was difficult to hear.

They also mentioned a certain syndrome that they thought this might be and that the ophthamologists would be able to prove if they are correct with this being that syndrome.

The Ophthamologist was supposed to come at 1pm but didn't show up until 4. We spent that time researching the syndrome that they were suspecting it to be. If it were that syndrome, then there would be small lesions in the eye. Fortunately, both Ophthamologists saw nothing wrong with the eyes. This was the best news we have heard in a long time.

So now the neurologists have to come up with another answer after they study the MRIs. We are also waiting for the genetic tests results to come back. Hopefully tomorrow will bring us some results from the hundreds of tests that have been done. Whether they are good results or bad results, we are ready to know what the answer is.

It is now 10:00 pm and Jamie is exhausted. NICU allows parents to stay 24 hours a day. Jamie would too if I didn't pull her out of there every night.

A good friend of ours has given us his house to use which is only 10 minutes away. We have had atleast 5 other housing offers as well. We truly are fortunate to have such great friends. You don't realize or appreciate it until you find yourself in a circumstance like this. When what is supposed to be the happiest day of your life turns into a nightmare, your friends and family really do get you through it and we both thank all of you very much.

OK, time to drag Jamie out of here and get some sleep.

Good Night!

Sunday Morning.

More yawns from yesterday.

Today has not gone so well...

Jamie and I got kicked out of our room this morning. The only other time this has happened was Ben Herr's fault.

Bad night in the NICU. More seizures occured and the oxygen assistance has been increased.They have increased the dosage of seizure medicine.
An MRI is scheduled for this afternoon.
An eye specialist is coming in around 1pm today to do an evaluation. This will help the team of neurologists in their diagnosis.

Day 5. Jamie gets discharged

Saturday Night

Clay and Doe took Creg to McCormick & Schmick's for dinner Saturday evening to get him out of the hospital.

Sunday, June 21st

Barney really misses us but is getting the opportunity to play with his nieces. Poor Barney.

Allison, please don't send me pictures of Barney getting abused like this anymore.

Sunday, June 21st

Grandmothers!

[Daddy's feet but Mommy's toes thank goodness!]