Wednesday, June 24, 2009
Afternoon Update (6-24)
NICU - We took about an hour to tour the NICU at both Mary Birch (where Karsie will go immediately after delivery and where she will go after she is stable) and at Children's Hospital (where she will go directly after surgery and stay until she is stable). We had two tour guides:one from Children's and one from Mary Birch and both were social workers that knew a lot about the NICU. Children's was very busy. There were lots of machines and lots of activity. The babies are very well cared for. Mary Birch's NICU was a tad slower (mostly because the babies are more stable than at Children's) but still very nice. We were given a ton of information about how visiting will go after delivery. Here is what we can remember:
Karsie will be delivered at Mary Birch hospital by C-Section. (after talking with the surgeon) We most likely will have a bit of time between delivery and surgery as an omphalocele is not life threatening on its own (assuming Bob is the only thing wrong with her). She will be transported to the Mary Birch NICU and prepared for surgery. We may get to have a few visitors here before she is shipped off to surgery. When she is ready and our surgeon is ready, she will be delivered to Children's via cool corridors and halls that connect the two, and will have surgery there. Michelle will still have to stay at Mary Birch and get fixed up (and greatly comforted by Reva) while Kevin travels with Karsie to Children's. Karsie will have surgery and then begin recovery in the Children's Hospital NICU. When she is stable and ready to not have to be monitored so frequently, she will be transported back to Mary Birch's NICU until she can be taken home. From what we can tell this whole process can take anywhere from 3 weeks to two or three months from delivery. A later birth means a faster recovery.
This brings up an incredibly stressful and difficult decision for us to make regarding visitors. While the Mary Birch NICU has an open door policy (anyone with the parents can visit), Children's NICU has a maximum of 6 that can visit...total...for the whole time she is there. We will give them 6 names and, to prevent the amount of foreign germs to the babies, only they will be able to accompany Michelle or Kevin for the entire time Karsie is there. Automatically, the grandparents are included, which takes up 3 spots. Therefore, we have to choose 3 people to take the final spots to see Karsie while she is in recovery.
The maybe good news about this is that Mary Birch is open door, and she will most likely go there immediately after delivery. So, people here at birth MAY get to visit her before she goes to surgery. And pretty much anyone can take a little visit after she is stable. We are so, so sorry. They are making us make too difficult decisions during this part of pregnancy.
We did meet our surgeon today. We really like him and he seems really confident in his ability to fix the problem. He pretty much went over the basics of omphaloceles, which we mostly knew, and then answered our questions. The only real news is that he will try to get it all in in one shot and if he can't their team does siloh, which is the protective casing over the organs. He said that he puts in a little at a time after that as her abdomen accepts the new tenants. He just came by to introduce himself, but he is coming back early next week, bringing a sample silo and answering more questions. At this point it looks like everything is a guess until she comes out. However we really like Dr. Saenz and feel very confident in his abilities.
P.S. - we saw a little premie that was about 3 pounds, which is about the size of Karsie, and she looked much bigger than we expected, so that helped us psychologically.
From now on we're not sure what plan of attack is other than monitoring her. We have no immediate tests and meetings (as we have met everyone at this point) that are pending, so we will be having ultrasounds and checkups daily until either we are discharged or delivery. Pray for nothing else to come up.