Aw, heck, who am I kidding!?! I'm a total slacker lately when it comes to blogging and I'm just finally getting around to finishing this post. But my logic above sounded great, didn't it? ;)
When we found out that Jax was diagnosed with Spina Bifida we also found out that he had Hydrocephalus. This isn't uncommon. Most babies that are diagnosed with Spina Bifida are also diagnosed with Hydrocephalus. Taken from a Spina Bifida Kids post: In those with Spina Bifida, the brain is usually positioned further down into the upper spinal column than it should be. This change in position is part of a condition called the Chiari malformation. The brain tissue displaced into the upper spinal canal blocks the normal flow of cerebrospinal fluid [CSF]. This leads to a build-up of fluid within the ventricles of the brain, a condition called hydrocephalus.
We were told that it was highly likely that Jax would need a shunt in order to help drain the excess fluid from his brain. The doctors at Strong Perinatal Associates monitored his ventricle size throughout the pregnancy and once he was born Dr. Silberstein continued to monitor him. Any drastic increases in head size, among other symptoms, would indicate that it was time for shunt placement. Jax was born on May 25th, was released from the hospital following his lesion closure surgery on June 1st and was home with us until June 23rd before we had to go back to Strong for his shunt placement surgery.
We had been visiting Dr. Silberstein every couple of weeks to measure his head and at first it wasn't increasing that rapidly. The hope was to wait as long as possible to allow for Jackson's head to grow and develop normally without interfering with a surgery. However, on the Tuesday before his surgery while at his latest check-up the doc noticed his head had grew drastically. We had also noticed that he was a little sleepier than normal, a little fussier than normal, his fontanelle seemed fuller and he had started looking down a lot more (a symptom know as sundowning). We couldn't wait any longer....it was time for surgery.
In the early morning of June 23rd, we (and quite a few family members) traveled back up to Strong for Jackson's surgery. We had been preparing for this surgery since he was diagnosed, but it didn't make it any easier. Watching him being wheeled away again into surgery was heart-breaking. Luckily, the comedic stylings of Jason and Denise were a nice distraction. The procedure took about an hour and half and when it was over Dr. Silberstein came out to give us an update. The first thing he handed us was a baggie with Jackson's hair - his first haircut!! I'm glad they saved it for us. He said that everything went great...what a relief. Jax spent some time in recovery and then went up to the PICU. It was amazing how much better he seemed even in the early hours after surgery. He was so much more alert and the sundowning has been drastically reduced.
So, here's a little diagram of what the shunt looks like:
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| http://www.ksl.com/emedia/slc/1020/102003/10200370.jpg |
He stayed in the PICU for a night and was then transferred out to one of the children's wings where he stayed for two nights. He was released on Sunday, June 26th. He's been doing fantastic since being home. He's had a couple of follow-up appointments with Dr. Silberstein who is very pleased with everything he's been seeing. His head growth has slowed and is now following a more normal growth rate, his fontanelle is much softer than it was before, the sundowning has completely disappeared and he's a happy, happy baby. He will continue to get regular follow-ups with Dr. Silberstein and is also being followed by the Kirch Center at Strong. We go next week for our first appointment.
This is a before pic. You can see how big his forehead looks:
Shortly after surgery:
And some other pics from the hospital:
Jax has two scars on his head:
And one on his belly:
And one last picture of his first day home post surgery:
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