That is what our surgeon told us was his experience with surgery on babies with Truncus Arteriosus complicated by a valve that is both a leaking and stenoic. She is in the rare category of rare.
Today when the surgeon used the word "stenoic" he referred to the single artery (the turncus) being narrow at the valve. As I understand it stenosis can mean either stiffening or narrowing, so apparently in her case it is narrow not "stiff" as I thought previously. In any event, the stenosis causes the heart to have to work harder to gain enough velocity to push the blood through, and her heart muscle is therefore thickening over time, as would be expected. The leaking valve, well, that is obviously not good either and also strains the heart. So, again, it was stressed, as soon as her lungs are ready, they want to induce and get her stable and then into surgery. She is more at risk now than during surgery, even as far as she has come.
A Surgeon for Gwen!
Today, yes, we met our surgeon - and honestly - I am in awe of answered prayer about how it came about.
The first part was basically clear guidance in helping us make our choice. At our first appointment of the day the sonogopher said something that indicated she assumed we were going with Dr. Spray as our surgeon. I told her we still had to choose and she indicated, that in our case, she really would go with him. So, that was all we needed as we really trusted her assessment of everything. We would request Dr. Spray even as he might be "hard to get".
But, as it turned out, we didn't have to choose. In fact, when I met with my nurse coordinator after the fetal echo, she was sure we had already expressed our wishes when we were here a month ago. According to her, Dr. Spray was our surgeon. We got the guy they explained everyone wants but is hard to get because he travels so much - who they essentially told us not to bother asking for because he is often out of town or booked because he is requested so often. It was so out of my hands I couldn't believe it - I didn't have to do a thing and we are set and Dr. Spray is not leaving town anytime soon. And after meeting him today we are assured that Gwen will be in the best hands. Praise God.
A Clearer Time Frame for Gwen's Arrival Date: Sometime Between Monday the 15th and Friday the 19th.
The Amnio is scheduled for Thursday at 1:00. This means she can be born, if I understand things correctly as early as next Monday! If her lungs are not mature the will use steroids to bump up their development and induce no later than 37 weeks.
The goal is to get her into surgery within a day or two of being born. Of course, that is IF she is stable. It is really impossible to predict, based on her less than optimal valve, how her heart will handle things once the lungs become part of her circulation. There is always the chance that she will need surgery immediately - we pray this will not be the case. There is also a chance that she will need more than a day or two to be stabilized and strong enough for surgery. We pray also, that this will not be the case.
One Last Technical Detail - The Valve Replacements
We learned today that she will in fact NOT have artificial valves used for either artery, but instead they will use a "homograft" - non-living, human donor valves. We are still hoping and praying that her native valve will surprise us all and be "fixable" and usable as the aortic valve, as that is the best case scenario. However, if they must use a homograft, we were pleased to learn she would not require blood-thinners as would and artificial valve (see earlier post). The bad news with a homograft on the aorta however, is that she would need more frequent surgeries to replace it as she grows.