14. Head circumference is growing?

June 13 2014

We may not be out of the woods yet.
We had an appointment with our pediatrician today, when we were discharged from the hospital they set us up with several appointments and this was one of them.

She was alarmed to measure that his head circumference is larger than she’d expected to see. She logged into the Children’s database (she spends some of her time at Children’s) to see if there were any head circumference measurements posted there from our time post-op and there were not. Nick and I don’t remember them taking measurements of his head as Otto was recovering, which in hindsight does seem odd given that Otto’s ventricles are a issue that they are monitoring.

We left our appointment today with a promise from our pediatrician that she’d connect with Neurosurgery and will get back to us by the end of the day. In the time it took me to drive home (15 minutes), she’d already connected with our Neurosurgery nurse and was back on the phone giving the update.

Neurosurgery was alarmed just as our pediatrician is. We are not going to move up the post-op appointment we have scheduled on the 25th of June but we are not going to be having an MRI before that appointment. Until then, we have been asked to observe him and if we see any of the markers they’ve outlined for us, we need to call them asap.

It kinda feels like being punched in the gut. I won’t lie. We thought things were so good. Otto’s incision is looking great. He’s acting like his goofy, funny self. He’s moving all around. We thought we were out of the woods.

Our friend Christina once told us this- the context was pertaining to being a little person and having a bad day but I know this can apply to anyone. Sometimes you just have days where you want to close the curtains, shut off your phone and retreat from the world because you just don’t want to deal with it.
I think today is one of those days. xox