Finally...some dates

After a very full day of meetings and more medical exams (2.5 hour long ultra-sound....ugh), we finally have some more concrete information and at least a more clear path of what lies ahead in the coming days/weeks/months.
Fortunately, they didn't need to do another amnio and any blood tests, but the day was long.  We have made it back to our hotel, a quick hop, skip, and jump into New Jersey over the Delaware River (we cross a bit differently than George Washington did in his famous picture standing in the old wooden row boat!!) and it is 4pm after our first meeting at the CHOP at 7:30am.  Our day is scheduled to begin tomorrow at CHOP at 9am for another round of meetings to get things set for surgery and beyond.
Here is what we can tell you for sure:

1. We're going through with the prenatal surgery.  We think it will happen next Monday (Aug. 31).  They are going to try to have our (when I say "our" in terms of surgery, I obviously mean Shawna....what a tough cookie I married!!!) pre-op "stuff" done Thursday so that we can get home for the weekend to get things in place and see the boys.  Shawna will be in the hospital for 4-5 days after the surgery and then on VERY strict bed rest for a few weeks.  From there, she'll have weekly appointments at CHOP so it looks like we'll be making the greater Philadelphia area our home until mid-December.  Living arrangements are still up in the air but CHOP will work with us on that, although they said this September is going to be one of the craziest times in the history of Philly as the Pope is visiting.  We've offered to host him but it sounds like the Secret Service has already found living arrangements for him.
2. After the ultra-sound/ECHO/and MRI today we know the baby will most likely have bowel/bladder incontinence as well as some severe mobility issues as the muscle growth below the knees has not been good and is irreversible.  What we hope for by choosing the surgery is that the likelihood of needing shunts is lessened & hindbrained herniation is reversed (feel free to look that up on your own) - both could be very crucial to the baby leading a more normal life. 

Yes, some fairly dreary details, although on a bright note, the doctor at CHOP that looks at the heart and cardiac issues said the baby had one of the best hearts he's seen!!!  So you could say our baby will have a "big heart."

This still does not feel like a whole lot of concrete information but we now can start to map out a course of action for the coming months and prepare for the road that lies ahead. 

CHOOSING Joy from Philly

-Jeff