So last night I sat on my couch actually looking forward to our neurosurgery appointment today. I really like Dr. Beier and was looking forward to checking in with her as she is expecting a little girl of her own very soon. I had no concerns and was very confident that we would have a very laid back appointment and yet again get all good reports.......
Well, that isn't quite how things went. So, now, instead of writing a quick update about how great a day it was, I'm asking for some extra prayers
Easton had a head ultrasound today. This is his third so they are sort of old hat at this point. I have come to expect the ultrasound techs to be relatively unfriendly and nearly silent during the actual ultrasound. She lived up to my expectations today. (I never will understand that....you work with kids for goodness sake!!)
After we got the clear to leave the ultrasound we had a little time to kill before our appointment upstairs in neurosurgery. I decided it might be fun to stop in and see our friends at ROC (that's the high risk OB office that I feel like I practically lived in while I was pregnant). Unfortunately, Sarah, the one who sort of coordinated my care up there is on vacation and all the doctors were in seeing patients. We did get to say hello to a few of our old ultrasound techs (they are MUCH friendlier up there!!) They were thrilled to see him (they don't get to see their babies after they are born very often) and so happy that he was doing so well.
We headed down to the office and waited our turn. Everyone commented about how big Easton looked - it's nice to feel like people remember you! One of the nurse practitioners came in first. She pulled up the ultrasound from today and the last one from July to compare. She felt like there was a slight increase in ventricle size - which has been the case every time we have gone in. Then she measured his head....then she measured it again - which is always unnerving and commented that it was a bit bigger than last time. Then she felt his fontenel (soft spot) and then asked me to feel it and asked if that is how it aways feels.......
Several minutes later - after sitting in the room worried - Dr. Beier walks in. Instead of being excited to pet his head like she usually is she had a look on her face that I didn't really like.
So, this is what is going on......
His ventricles are slightly increased again - Dr. Beier said this was nothing to be extra concerned about. She said all it really means is that his ventricles haven't stabilized yet which mean that we have to keep watching them. She said at this point they are not big enough that she feels like she needs to do something but that we have to keep watching them until they do stabilize or until they get bad enough to warrent surgery
His head size jumped percentiles again. This concerned her. When we were here in July he had jumped up to the 70-90th percentile (I can't remember what he was before that....). Today he was 99th percentile.
Most concerning what that she didn't really like the way his soft spot felt. It was a little "full" and pulsing. When she asked me what I have been feeling I told her that I hadn't really noticed a change. She said it is possible that today is just a bad day but to keep a close eye on whether or not this is his new normal....
So, translation - As it stands today, things appear to be going in the direction of Easton needing a shunt. A shunt is essentially a drain that they put in his brain that helps get rid of the extra fluid. This is a common problem with kids that have Spina Bifida and honestly, one of the main reasons that we decided to do the surgery was because it significantly decreased our chances of needing a shunt.
So, why is a shunt so bad? Well, in and of itself it's not I guess, other than it is brain surgery. (which is sort of reason enough to not want it I feel like) Of course with a shunt comes shunt revisions when things go wrong (which is essentially inevitable at some point) which means more brain surgery and I have seen pateints need multiple revisions (that's one of those I know to much moments) It might also mean activity restrictions later on
I just frankly don't want my baby boy to need brain surgery and to have a drain in his brain forever - and that's that!
So - it wasn't a good day :( but I keep reminding myself that none of this changes who Easton is first of all. Secondly, this has been out of my hands since the very beginning and absoluetly no amount of worry about it is going to change a thing so I am trying hard to find peace in knowing that God is in control and is orchastrating every step. Thirdly, Dr. Beier said specfically that nothing that she saw today makes her want to shunt him tomorrow so we are not supposed to panic (I'm still working on that one)
Dr. Beier wants me to keep an eye on his soft spot (still trying to give me the benefit of the doubt that maybe today was just a bad day). She said that if how it feels today seems to become his new normal over the next few weeks to come back in. She also scheduled him for another head ultrasound in December....so now we wait and we pray
I'm not even sure what to ask you all to pray for.....that his fluid goes down and his ventricle stabilize is what I WANT (what WE WANT) but that may not be what God has planned so throw in some prayers that I (Stephen too) would be able to accept and cope with whatever it is that is in God's plan.
Wishing that this was a happy blog but knowing again that God's in control. Hug your babies (I'm going home to hug mine for sure!) and thanks in advance for the prayers!
Love and Hugs!