Hospital Wednesday

As I promised, here are the highlights from today's many adventures.

We had a fascinating visit with Dr. Warf, the neurosurgeon. The upshot of which is that he is completely on board with avoiding a shunt if at all possible, and it certainly seems possible. Interestingly he spent some time discussing with us the possiblitity that we may need to do nothing whatsoever. While Zelie's ventricles are enlarged, that by itself is not necessarily a cause for concern. The previous approach to shunting every child with fluid enlarged ventricles has proved itself a faulty medical fashion that resulted, at least some times, in causing problems where there might otherwise have been none. According to him, approximately 30% of kids with SB do not technically need intervention. The cause for concern comes if, and only if, those ventricles continue to build pressure in the head after birth. So, after her initial back closure, we will spend some time and effort just monitoring her head circumfrance and other markers to determine if more is needed or not. If it is necessary, the ETV/CPC procedure has a 70% success rate in babies born with SB. He could see no reason that Zelie would not qualify for this procedure, and had a great and calm confidence that if it were needed, it would be the procedure of choice.

This is excellent news. SB has enough challenges without the burden of shunt dependence added in. This is why we came, and we are even more satisfied than before that this was the best possible option for us. There was some discussion of follow up, which is a bit complex yet. We will need to determine which SB clinic near us will best serve us going forward, but follow up with Dr. Warf will also need to happen more than once within the first six months if we do, in fact, undergo the ETV/CPC. More on that as it develops.

We also met with Maternal Fetal Medicine today. We discussed delivery options, care between now and then etc. There are several considerations that went into that discussion. Amoung them are Zelie's size, which they estimate to be over 7lbs now, the increased lesion size, my age etc. While vaginal deliverey was a possiblity, ultimately we all felt most comfortable with a C section. That was scheduled today for 12/3. While I remain convinced that we will go into labor naturally before then, I appreciate their firm conviction that Zelie should have as much time to develop naturally as possible. She has a lot to face once she gets here! We are also surprised at their estimation of her size, though  it certainly explains some of the issues we've had with greater discomfort, etc.

If you are keeping score carefully, you will realize that the MFM doctors are at a different hospital than the docs we are working with for Zelie. Happily our experience with this new contingent has been just as positive as our experience with those at Boston Childrens' Hospital. The level of expertise in dealing with atypical diagnosis deliveries, and the caring, engaging manner in which they go about it are exceptionally reassuring.

While we were off running up and down hospital hallways J was exploring the city with Aunt Honey. They made friends with a meter maid, discovered a new church and just generally enjoyed the crisp weather. We came home to a sweet, well exercised and rested guy who has been full of antics ever since. That brings us to the day's end.

Tomorrow we will be back at The Brigham for a monitoring session, a tour of their NICU and the NICU tour at BCH that we never quite got to today.

Happy Wednesday one and all!