Surprise door #4

So today Bean had her appointment with her neurologist to discuss the results of her MRI about a week ago.  As normal I thought through all the possible scenarios so I felt like I could mental prepare for "the worst".
The first and best scenario was that the shunt is working fine, everything looks great and we'll see you next year.
Second best was that the shunt was somehow stopped working but Bean no longer needed it so we could take it out and be done forever.
Third, (and "worst" in my head) was that she had somehow outgrown the shunt or tubing and it would need to be replaced and then be back to yearly visits.

So it turns out the shunt is working correctly and her ventricles, fluid and head size look great. So I thought we were good and done.

And then the Doctor opened surprise door number 4, something I didn't even know was possible.

It turns out that Bean's brain is "outgrowing" her skull.  Everyone has a normal amount of fluid around their brain that cushions their brain during falls etc.  As your heart beats the fluid pulsates around the brain and against the skull.  As it does this is tells your skull to grow in relation to your brain.  In people with hydrocephalus (2 years later I can finally spell that without spell check! I don't know if I'm more proud that I can spell it or sad that I've had to spell it so often :-/ ) who have shunt to monitor the fluid tend to have a little less fluid around their brains, which is ok but it sometimes doesn't send clear enough messages to the skull to grow correctly in proportion with the brain.  So as a result Bean's brain is starting to grow a little bit out of the hole at the base of her skull.  It is making the area a little tight and is causing brain fluid to leak into her spinal column.  If the fluid in her spinal column gets too high it can put pressure on her spine and cause problems with balance, walking and reflexes.

Now this all sounds scary and dangerous but I want to be really clear: Bean is not currently in any danger and I believe that her doctor will not let it get to a point that is dangerous for her.  Normally when a shunt is working correctly the doctor only requires MRIs every 3-5 years, but with these complications the Doctor has scheduled her next MRI 6 months from now.  If the situation has resolved or is unchanged we'll have another MRI 6 months from that and we'll continue like that until the situation is resolved or the doctor feels the need to intervene.  It is completely possible that this problem can resolve itself and we can go back to our "normal" life :-) However if the doctor does need to intervene Bean will have to have a surgery that will give her brain the room it needs to grow.

Now as if that wasn't enough the MRI also revealed a cyst in the middle of Bean's brain.  Again the doctor does NOT believe that this is putting Bean in any danger.  It is a small pocket of fatty material that is benign and not currently dangerous.  As long as this cyst grows in proportion to the growth of Bean's brain the doctor won't consider it dangerous.  If it begins to grow faster the location of the cyst can cause some vision problems.  If this happens we will have to have the cyst removed.

Again this is very scary but here is a hidden gem of kind of good/interesting news: the doctor believes that the cyst formed while Bean was still in utero and is the cause of her hydrocephalus. He believes it is sitting right where the fluid needs to drain and is why she has had the extra fluid and we could never see it before because of all the fluid.  So if it ever needs to come out her hydrocephalus may actually clear up.  It will also be an option if the shunt stops working.  Instead of putting a new shunt in we could consider trying to take the cyst out and see if the hydrocephalus will clear up.

So I know this was really long (props to those who read it all!) and pretty scary, but here are the really important parts:
1.  Bean is not in any danger right now
2.  She has an amazing doctor who knows really knows the brain and will do his very best to protect her and inform us so we can help protect her too.
3.  Bean has a God who is bigger than anything she will ever face.  He has a plan and a purpose for her life whatever comes her way.  He has given her (and us) and amazing network of friends and family who have been supporting us since the day we found the fluid for the first time.  He will never forsake us no matter what comes next.

So are we scared? A little.  But we will never be alone and that is how we will handle this, by simply trusting God with our baby girl's life.