Thursday, October 4, 2012

More surgery, seriously....

Today Lily had a sedated MRI and an Echo.  Her head circumference has continued to increase to the point that she was in the 97th percentile at her 6 month well-check yesterday.  Today it was confirmed that she has hydrocephalus.  Her MRI today showed what could be a subarachnoid cyst.  They are not sure if it is a cyst or if her third ventricle is just bulging from fluid.  They also think that hydrocephalus could have developed secondary to her VSDs.

With a VSD, there is additional pressure put on the right side of the heart.  The increasing pressures can result in increased fluid in the lungs and also increased pressures in the blood vessels throughout the body.  If there is increased pressure in the blood vessels, it is hard to remove fluid from the tissues.  This could happen in the brain resulting in extra fluid in the brain.

Whatever the cause, it needs to be fixed soon.  Lily will be having brain surgery on Tuesday or Wednesday to place a shunt.  This shunt will go from the ventricles in her brain to her abdominal cavity.  The extra fluid will drain into there and be absorbed and removed.

Since they think that the increased pressures in her heart might be the culprit, that also means that heart surgery isn't too far in the future.  We haven't seen the official results yet, but I am pretty sure that Lily is going to be referred to the cardiac surgeon to have her VSDs repaired.  The reason they are doing a shunt and not an alternative hydrocephalus treatment (third ventriculostomy) is because they don't want to delay her heart repair too long (at least that is what they told the neurosurgeon.

My heart is breaking for my sweet girl.  I don't want her to need more surgery but ultimately, we will do whatever she needs us to do to be well.  In PT and OT this week, she wouldn't even lift her head during tummy time because it is so heavy from fluid.

Yesterday, Lily had her 6 month check-up.  She received her vaccinations and showed off for her doctor.  She now weighs 12lbs 4oz (below the 5th percentile) and is 24 inches long (5th percentile).  We go back to him in November to get her RSV vaccine and 2nd flu shot.

Now I will leave you with some pictures of my sweet Lily

First Rice cereal