2-19-09

Michigan Update...

Tom and I started our day eating at Bob's Big Boy...mmmm. While we were there (7:30 A.M.), my cell phone rang. It was Dr. Varyani calling from Cleveland to let us know that Jaime's hemophilia tests were back...YEP! Jaime is a hemophiliac, just like his big brother!

From there we went to the hospital. Navigating the halls of MI was a bit challenging, but eventually we found our way. We had an ultra sound. We even got the most adorable pictures of Jaime! He's so cute and a bit chubby, too! (Maybe he takes after his Poppy...just kidding, Dad!)
We met with Dr. Treadwill, who was absolutely wonderful. She was very kind and soft spoken. She told us that Jaime did not have Fryns...YEA! She did say that based on his numbers today, he had a very low LHR (Lung-to-head-ratio), meaning that he would definitely be a candidate for ECMO (lung/heart bypass machine). She confirmed that only 50% of ECMO babies survive. She also said that they have dealt with hemophiliacs on ECMO before.
She said that Jaime is about 2 lbs., 4 oz. He's measuring in the 78th percentile. She seemed to feel that his kidneys were big because he, in general, is big! This was also reassuring. (And it explains my very round tummy!)
We also met Jeanie, our contact nurse, in person who gave us a tour of the NICU. She was very nice and had a wealth of information to share! We met with genetics, too, who basically went over the "normal" genetic stuff...nothing new there.

Today, I also spoke with Dr. Lim, the pediatric surgeon, and head of our Cincinnati Team. I told him about the hemophilia, increased fluid and large kidneys. He's not overly concerned about the fluid at this point...neither is Michigan for that matter. Both places told me that they want me watched in Cleveland and if something more develops to let them know. They also agreed that if I went into pre-term labor that neither would offer more than Cleveland because Jaime would be too small to do much on. Cincinnati said that if he became stable for transfer, we could transfer him down there. The only issue with that would be the cost of the helicopter because I know my insurance wouldn't cover it, they would argue that UH in Cleveland offers the same treatments and that the transfer would be unnecessary. So, let's hope for a term baby! :-)

Tom and I are in the process of creating pro and con lists for Michigan and Cincinnati. I think we are still leaning towards Cincinnati, but we need to make sure that they are fully capable of dealing with a hemophiliac. Dr. Lim said that he has not personally had a hemophiliac CDH'er. (Of course not...has anyone? LOL)

Anyway, that's the scoop with today.

All and all it was a good day. Michigan confirmed that there is no Fryns and that we have a big, chunky baby growing. The bigger the baby, the better the ECMO may be. YEA! As for the hemophilia, well, that was inevitable, it didn't real come as a shock to any of us. Poor little Jaime, having 2 significantly rare diseases!

On the plus side, Jared said that if Jaime lives he'll teach him how to take needles...yea, like Jared is an old pro at it! HA!

Speaking of Jared he had a blast with Grammy and doesn't want her to leave tomorrow. Tom and I were grateful that she agreed to spend a few extra nights here to help us out! (We even brought her home a special treat...Coconut Cream Pie from a bakery in MI.)

Well, I'm off to bathe Mr. Jared! He can't wait to bring his new Kid K'nex into the bath tub!

Good Night.

Love,
Sheryl

P.S. Dr. Varyani also confirmed that I am not anemic and that I do not have gestational diabetes...I'm the healthy one, poor little Jaime isn't! :-(