DS diagnosed with hydrocephalus

JEN1974

Just lookign to reach out and network with others dealing with this.  I took DS to his 1 mo appt last thursday and the pediatrician noticed his head was measuring big, his soft spot was bulging and his eyes were sundowning.  We were sent to Children's for a Head Ultrasound--the results of which got us admitted to the NICU and consulting with a neurosurgeon.  He had an MRI that night and a VP shunt placed last Friday, so we're about 10 days out from surgery.  He's doing okay...still seems to be in pain, particularly around the area where the valve is in the back of his head.  We had stopped doing pain meds around day three and he's been really irritable, crying unless he's sleeping or held without being moved.

I've started to try and educate myself regarding what this diagnosis means...and have lots of questions for our follow up post surgery appointment with teh nurse practitioner.

Those of you familiar with hydrocephalus...what should I be proactively thinking about at this point?  He's 6 weeks old now.  Also, would love to hear stories about how your LOs are doing, how they've handled the shunt, what impact if any it's had on their lives, development, etc.

Thank you!