January 26th, 2009

Hi Everyone,

Today was quite an exhausting day! First off, Tom and I didn't sleep too well in our HOT hotel. Then, I had the "pleasure" of having not 1, but 2 marathon scanning sessions back to back. First was the fetal echo cardiogram...that was nearly 2 hours, next the fetal ultra sound...another 2 hours. WHEW!
After the scans, we were allowed to eat lunch and take a break. Then, our afternoon was filled with meetings. We met with people from the Social Worker to the Chaplain. Everyone was very kind and very willing to help us!
At the end of the day, we had a team meeting with everyone, where they went over our results.
This is what we were told:
Jaime's heart is perfect and functioning completely normal.
There are no other seen birth defects aside from the CDH.
Jaime is growing appropriately for his age.
His brain is developing normal.
Only half of Jaime's liver is herniated in his chest, as well as his intestines, all other organs are below the diaphragm and are normal.
His total predicted lung volume is 19.6, this number is considered "moderate" in relation to CDH. They do not foresee Jaime having to go on ECMO, simply based on this number. Usually babies with a PPLV of less than 15 go on it and have poorer outcomes.
They are giving him anywhere from a 50% to 82% survival rate at this time. A final prediction will be made after additional testing at 34wks. (I am currently 23 wks).
The neonatologist was careful to tell us that Jaime will be very sick his first 3 wks. of life and that he may not have surgery until then. The surgeon explained his form of surgery, which is actually better than the traditional patch surgery. The hematologist came in to tell us that if Jaime is a hemophiliac (we should know in the next 3wks.) that he'd put him on a continuous Factor pump to regulate his factor and that hemophilia would become a very minor issue for him.
The OB told me that I will be receiving IV steroids 3 to 4 days before delivery to enhance Jaime's lungs before birth. (As you can imagine, this will be a planned birthday!)

So, we actually left there with pretty good news. I am to continue care here in Cleveland until 34 wks., then if we choose to go there, they will assume 100% of my care.

Tom and I are going to get one other opinion and that is going to be at the University of Michigan. They want to see me at 30 wks., so after we meet with them, we will make our final decision.
We will keep you posted along the way!

Thank you for your continued thoughts and prayers...