Dealing with the Hydro (finally!)

It's been a rough couple of days as we have been reminded of why this blog was originally started.  Lucy had a follow-up ultrasound on Friday to take a look at her brain structure and fluid levels inside her skull.  Her last ultrasound was on June 22, the day after she was born.  The ultrasound definitely showed that her fluid levels had increased since then, leading the doctors and neurological team to recommend a shunt.  However, the atypical part of Lucy's test results are that her head size is not growing at an abnormally fast rate.  The surgeon ordered a follow-up MRI for Monday to get a better look at the brain structure, which showed much of the same.

Typically, in kids with hydrocephalus, their fluid levels increase to the point that it is putting pressure on their brains, causing their heads to grow at a faster rate than the rest of them.  However, that is not the case for Lucy which is a bit of a mystery to the doctors.  It is worrisome, because it looks like her brain may not be growing and developing at a normal rate, causing the extra space to be filled up with fluid.  Unlike her other problems up to this point, this diagnosis has long-term impacts related to her learning and development as she grows up and many of the scared, uncertain and overwhelmed feelings have come flooding back to us as we struggle to understand what to expect long-term.

We do know that in the short-term she will have surgery to have a shunt put in, tentatively scheduled for next week.

In the meantime, she continues to do well overall, charming the nurses and entertaining her dad and I with her adorable facial expressions and alertness - we are still debating which college team will be her favorite!