Monday, January 13, 2014


It seems as though that Virginia has always thrown us a curveball.  That whole never trust a preemie thing?  Totally applies to this kid!

While she was in the NICU I worried about an endless list of complications.  I googled statistics.  I asked lots  (and lots and lots) of questions.  I laboriously tracked her vent settings.  I became obsessed with her (in)ability to take a bottle.  I lost it when I found out that not only we were enrolled in cardiology clinic follow-up because of her PDA but also for a pulmonary fistula and pumonary hypertension.

The one diagnosis that I really never worried about - her kidney stones.  Those were for adults, or so I thought.  Her kidney function labs were always a little weird and she was never able to get on an acceptable long term diuretic, so instead she had lots and lots of lasix which in turn contributed to the formation of the kidney stones.

2 years later and we are still tracking those pesky and surprisingly large kidney stones.  The largest stone is much too big to pass, in fact it is too large for a full grown adult to even pass.  More concerning is that it is large enough that it could block the blood supply to the kidney if it migrated towards the artery.  Her typically stable urine analysis was unfortunately worse than normal at our latest appointment as well.  They are not sure what is causing this latest change, but we will go in for additional blood work and another urine sample later this week.  I'm not sure where it is all headed, medications and surgery are both possibilities, but it doesn't look like we will be discharged from this specialty any time soon.  We most likely will be adding urology to our specialist list as well.

Thankfully Virginia does not appear to be in any pain and we had plenty of good news at her appointment as well.  She is back on the charts for her weight at 22.5 lbs (up 2 pounds in 2.5 months) and is up to 33 inches.  She also dazzled all the doctors with her charm.

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