Friday, May 18, 2012

Quick medical update

OK. So Facebook has been updated, but the blog has not in quite a while. I guess with everything going on (and switching between two barely working computers) the blog got lost in the shuffle. So here's a quick update:
We moved! We are in Michigan now, the trip here was beautiful and long and tiring. But we're here, safe and sound, with medical coverage and a great network of doulas and midwives supporting us.
We have met with the new doctors at the University of Michigan. The first appointment was oh.. so.. long.. and my poor babysitter was called last minute and stayed for so much longer than I anticipated. Thank you thank you thank you Toni!
There are a few differences between what Yale and U of M believe as far as Baby S.' heart goes. Some of this I believe has just come with her growth and the fact that the heart has continued to develop, and some could just be a matter of what they were able to see on each scan. U of M believes that the heart, instead of being anatomically isomeric (both sides being anatomically the same) that they are simply inverted. They also see enough of a septum between the right and left sides to believe that a bi-ventricle repair is possible! They don't believe her pulmonary arteries are narrow enough that she will need that initial surgery in the first few days either. If everything goes well after birth she could be cleared by the cardiologist within the first week!
Of course, that's never the extent of what they see, nor the extent of the 'new news' that I recieve. The good news is that after hearing a 'death sentence' diagnosis by the last geneticist that I saw at Yale (the day before we left for Michigan), I became a little paranoid and made the u/s tech spend some time looking at both her brain and her hands. The (now)former geneticist had said that they didn't see her hands opening and closing which was an indicator of severe neurological dysfunction. I'm pleased to say that I saw her open her hands on more than one occasion. But the doctors are still concerned. The more in-depth scan of her brain shows that there is a possibility she is missing a big structure of the brain called the corpus callosum. This is where the nerve bundles are located that allow the right and left hemispheres to communicate. The implications of this vary from case to case and can be very mild, or moderate. Either way it's better than severe neurological dysfunction, so it's better news than what I was being told.
See!! Open Hands!!
I like the hospital, I like the doctors there. Nobody is a huge alarmist, everyone has been really nice. It's not like Yale where I am the 'one in a million' mom with a very complex baby that everyone wants to get a chance to look at. At U of M I'm just another mom; they see plenty of sick babies. After all you don't get to be the #3 hospital in the country for pediatric cardiac surgery without having a good number of heart babies come through your doors. So I feel less like a freak show and more like someone who's concerns are being addressed and they actually aren't being really pushy about how when where and all the specifics of how I give birth! I have a wonderful volunteer doula who is a former nurse, and a great system of people ready to help me out when the time comes.
Don't get me wrong.. it's hard being away from everyone I know and love. It's hard being the only one day in and day out dealing with the kids especially since they've been adjusting and then sick and all the other stuff that comes with being 2 and almost 4.. but we're doing ok. I just really hope all the adoption stuff gets finalized quickly, cuz I have this horrible feeling way down deep inside that we're running out of time!!