July 2010 – Happy Independence Day

Rock On!

Our family had a nice 4th celebration. We took headphones for Lil’ Sophie to watch fireworks. But she surprised us by not needing them. In fact, she would kick her feet in excitement in-between each boom.

Mid month we ended up back at St Louis Children’s for a few days while they administered strong diuretics to flush some of her tummy fluid. Sophie’s belly had filled up over the last month and was starting to cause respiratory distress. By this point, we pretty much knew the routine and didn’t find this sudden admission alarming. During this stay the Genetics specialist ordered a chromosome test. The results from this blood test may shed some light on what happened to Sophie in utero to cause her various birth defects. We’ll know the results in a month or so.

We also met with Sophie’s heart specialist. She set up a second cardiac cath procedure to measure the pressures of Sophie’s heart. The whole team was in agreement that we needed to know if her heart issues happened to be the culprit of the fluid that continues to back up in her belly. Since her liver specialist had been so thorough she was confident her primary issue was her heart.

But in usual Sophie style the results surprised everyone. Although her heart pressures will eventually lead to her having an open heart surgery they are not causing the fluid back up. So now what’s the cause? It has to be the missing portal vein. We seem to be back at square 1. Only this time we have more information. Although, at this point it’s confusing where this information will lead us. All of her specialists seem to be scratching their heads trying to figure out what to do next.

Enjoying fireworks

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~ by Jenny Bagwill on July 22, 2010.

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