Visit to Johns Hopkins

James and I just got back from our appt at John's Hopkins. First off - we both agree that our spirits were raised a bit after the consults. I think Dr. Kramer knew I needed something like this and that's why he scheduled the appt. In the end the appt to discuss 'options' was really a meeting with Dr. Lau, the surgeon, to discuss Jack's condition and the possible outcomes. Dr. Lau is a very compassionate doctor who explained everything to us and answered all our questions. We both really liked him. As soon as he realized we'd done our homework on CDH he went into more detailed explanations and scenarios. His feeling is that Jack's case is severe and he will almost certainly need ECMO and that the hole is big and will require a patch but that we should still have hope. As he (and every other doctor) told us ...only Jack knows how his lungs will work. We just have to wait and see. He said not to get too distressed about the ultrasound results because we're looking at a snapshot in time. There is always the chance that when we're not looking some organs move down and those little lungs get some room to grow. Overall I would say that he was much more (cautiously) optimistic then the surgeon we met at Children's in D.C. We felt more comfortable with him. He also told us that Hopkins has one of the largest and best ECMO units on the east coast. We won't have to worry that Jack needs an ECMO circuit but they're all tied up. That is VERY reassuring to know. Of course, I also checked out Dr. Lau's credentials and was happy to see he spent some years at CHOP and has done some really delicate surgeries like separating conjoined twins! So, from that perspective I felt really good.

At the end of our consult I asked if it's possible to set up a tour of the neonatal intensive care unit (NICU). Dr. Lau made a call and next thing we knew we were over there and had a consult with one of the neonatologists. She was also really great and went into more details from her perspective and then gave us a tour. We even saw a baby on a ventilator. It actually wasn't as traumatic as I would've thought because all the babies were getting so much attention and we found out that we can bring family to see Jack when he's born. Before that we thought that only we would be allowed. There are some rules of course but at least our family will be able to see him.

So, overall we were pleasantly surprised by our visit to Hopkins (despite the fact that it's in a really bad neighborhood). I think James said it best that we should always remember when we have visits like yesterday that it's probably never as good or as bad as we think. We know now that Jack's case is very serious but we're getting more and more prepared. I think we'll probably still take a visit to CHOP but at this point I would feel completely comfortable delivering at Hopkins. We also have the advantage that at worse Jack would only be 5 floors away from me, unlike other situations where it might be another building or a few blocks. Oh yeah- this surgeon also said they'll try to let me go as long as possible and just watch me closely so I get as close to 40 weeks as we can. He ruled out the EXIT to ECMO and said there's still a chance to deliver naturally. We won't know the details of how I'll deliver until we're closer to the time.

Thanks everyone for checking the CarePage. Even if you don't post I see that you visited and that means so much to James and I. The only way we get through our tough days is knowing we have so many people behind us. We love you guys!

Love
Vic