Coarc-what?

We made it to Omaha!  Had our first round of appointments today with a cardiologist.  We were supposed to meet with the cardiac surgeon today too, but he had an emergency surgery to attend to, so we will meet him sometime on Thursday before we come home.
God answered a prayer that I forgot to pray and blessed us with a sweet Annelise who moved to just the right locations to let the tech who was taking the fetal echocardiogram images geek out on some great images that were so clear she decided they would be good enough to go in a textbook!
The cardiologist was very personable, which not all doctors need to be, but is so appreciated!
Kevin noted the difference in the verbiage used by him vs. our cardiologist experience at CHOC.  Here in Omaha, the cardiologist referred to the expected issues and outcomes we might face for Annelise as part of her story, and gave us an array of options for medications to alleviate symptoms as well as surgical procedure details.  He went over some scenarios where surgery might not be an option, such as if thinning her blood to put her on the heart/lung machine would end up damaging her in other ways like brain damage... or if closing the hole in her heart would cause problems with pressure in the heart that would be just as damaging.  Never once was her quality of life questioned.  He also stated that any pediatric heart surgeon “worth their mustard” should be able to do the type of surgery/surgeries that Annelise will likely need.

He found to be true something that the CHOC cardiologist had wondered in the report that she wrote up too... whether Annelise’s aorta is narrowing on its way out of the heart, which would be called an aortic coarctation.  This issue could possibly go away as the anatomy of her heart will change as all babies’ hearts do when they are born and start using their lungs instead of getting oxygen from the placenta...  but if the problem persists after she’s born... the narrowing aorta won’t allow enough blood to get to the lower part of her body, and would create a need for surgery soon after she’s born, after she gets the Spina Bifida lesion closed.  Kevin and I had just spent the morning online learning about heart anatomy... but we didn’t run into this vocabulary!  So the large VSD and possible aortic coarctation are her main heart concerns.

 We didn’t feel pressured to come to his hospital, although he did speak very highly of the surgeon at Omaha.  The recommendation for next steps by this doctor is to follow up with a cardiologist in our area (who called me as we were walking out of the hospital today!  He heard about me from the team meeting that they had at Miller Children’s where Annelise’s case was presented, and reached out because he heard I wanted to meet with a surgeon.  He isn’t a surgeon, but he could be a cardiologist to care for Annelise into childhood if we get to know her for that long!  He sounds awesome and I’m excited to meet him at the next fetal echocardiogram to check out the size of her aortic coarctation in mid May).  After that appointment in mid May, if it still seems possible that she has an aortic coarctation, we’ll need to be sure to choose a hospital to deliver at where heart surgery is immediately available to her.  We are feeling really impressed with this hospital and the team that we’ve met so far.  What would it be like to live here for months though?  Can we find a surgeon “worth his mustard” close to our home who would also have great care for Annelise’s heart?
We’ll continue to look for those answers, and trust that our greatest physician, who can make anything happen, is present in our searching and will be with us and Annelise wherever we end up.