Monday, January 18, 2010

Gwenyth's Story Begins. Introduction: Major Change of Plans - and a "Tentative Diagnoses"

Two days before we planned to leave town for the Thanksgiving holiday, Myers, Lillian and I headed in to my midwives office to find out if we were having a boy or a girl.

At this 20-week ultrasound we learned that some didn't look right about the "location and size of the heart and some vessels" - this was on a Thursday. They scheduled us an appointment as soon as UVA could take us, that following Monday. We would not be leaving town that weekend - instead we'd live for three long days of confusion, disbelief and wonderment.

Upon speaking with one of my midwifes between appointments I was able to learn that there was something wrong, for sure, and it was glaringly obvious. On Monday morning we headed to UVA for a level II ultrasound and an Fetal Echocardigram. Walking into this long day with that knowledge helped to have my brain in the right place - I didn't go in with the hope that they'd say, "oh, there's nothing wrong it was just, blah, blah, blah." We knew something was wrong and we were there to find out what. Our hope was that it was nothing complicated, serious, or life-threatening.

Knowing anything was wrong, was of course, hard to swallow. Lillian, our sweet two-year old, is the poster child of health, she's never had anything beyond a cold really, and only one small ear infection that cleared up as quick as it came. Even my pregnancy with her was easy. I had a totally false sense of security about child-bearing.

By the end of this day at UVA we would find ourselves just inside the doorway of a whole new world, with an markedly uncertain path before us and no choice but to move forward and follow where it led. Not to be too dramatic here, but we really did enter a different reality and the only sure thing was that, in time, our second little girl will face serious challenges, as will we. When that would be, and all the details therein were the only uncertainties.

The doctors, to date (January 18) can only piece together some idea of Gwenyth's heart defect. With the best equipment and experienced doctors it remains difficult to delineate the structure of a uniquely-malformed heart in-utero. A tentative diagnose is "Truncus Arteriosus" with "valve insufficiency." There is also some extra vessel that appears to be extending from the heart where one would not normally be. This extra vessel is not a huge concern to the doctors - weird, right?

So....begins the journey.

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