Countless (soooo many) water breaks, snacks and a FaceTime with Grandma at our turnaround spot, and giggles about squirrel butts. When we made it back to the parking lot, the boys were so pumped they kept yelling “First hike!” to everyone we passed. Technically it’s their second, but I guess the vertical on this one made it more legit.
This is a long post but no one’s forcin’ you to read it so 🤷🏼♀️ Jaxon is having his 2nd brain surgery Friday morning.
It is for hydrocephalus caused by his grade 4 intraventricular hemorrhage (brain bleed) as a result of being born 3 months premature. It is a lifelong, serious brain condition.
The surgery installs a permanent VP shunt into his brain and abdomen. The shunt controls symptoms, but is not a cure.
It will limit Jaxon’s life in some big and not-so-big ways. He will need close monitoring from a neurosurgeon for the rest of his life and more future surgeries to replace his shunt (they fail or break over time). We will have to be on constant watch for signs of shunt failure which can be subtle. An untreated shunt failure is fatal.
Like my last post referenced, I am only now starting to understand the implications of those bleeds, and that our hard journey won’t be over when we leave the NICU.
There are many preemies who never develop hydrocephalus or have grade 4 bleeds. The risk of having a severe brain bleed was 7% each for both Axel and Jaxon. They both got a grade 4, Jaxon’s more severe. Why do they both keep getting the short end of the stick?
A few days after the boys were born, the doctors told us Jaxon may never breathe on his own, walk, eat, or have much of a life at all. They asked us if we wanted to discontinue care for him. We did not.
We will encourage both of them to do anything they want to in the future, whatever their individual level of abilities turn out to be.