Two years ago, September 18, 2012, I was 35 weeks pregnant, laying on an ultrasound table, hearing a doctor tell me words I didn’t understand. Words that scared us… spina bifida, myelomeningocele, neural tube defect, hydrocephalus, disabled, clubbed feet, lemon sign, neural tube surgery, brain surgery, shunt, Chiari Malformation, urology issues, bowel issues, development issues, […]
I am incredibly tired so this is short. Colten’s surgery went very well. He’s doing great, back in the regular room. The probe part of the shunt, the piece that goes into the ventricles and starts the drainage process, was not functioning properly. It was early in the malfunction so they were surprised we caught […]
Colten and I arrived at Mott Children’s Emergency Room around 5:30 PM. They were expecting us, which made it easy to check-in. Heck, the ER staff even called me around 4:30 to ask where we were since we had not shown up yet but were on their “expect soon” list. Talk about good ER service! […]
I hope not. I hope it’s us being paranoid but I’m thinking there’s an issue with Colten’s shunt. We will be taking Colten back to Mott Children’s today at some point. There isn’t a rush but his fontanel (soft spot on top of head) is very full and tight – similar to how it was […]
We have been home now since last Thursday and it is SO NICE! Colten is great – eats, sleeps, poops. And does it all again. And again. And again. Besides the constant stream of stuff into diapers (we are often putting one on as he soils it), the 1-3 medical appointments each week, and the […]
The past week was pretty difficult for Richard and I. While we were excited to go home from our NICU stay after Colten’s myelomeningocele repair, we left feeling like our boy wasn’t doing so well and that the boy we brought to Mott Children’s Hospital wasn’t really the same boy we were taking home. The […]
Before I get into today’s main event, the brothers gave their third musketeer a loving send-off this morning… Surgery to place the shunt went very well! The same neurosurgery team that did Colten’s spinal surgery did the shunt placement (Dr. Maher and Dr. Stetler). The anchor or insertion point (I’m sure this is not what […]
Colten had another cranial ultrasound Monday. It showed an increase in the ventricles of the brain, which means an increase in cerebral spinal fluid. His head also measured an increase, at 39cm (and this morning it measured 39.5cm). He was born at 36cm and normal rate of increase is no more than about 1cm per […]
I’ve mentioned before that this adventure redefines normal for us and sure enough, yesterday that concept smacked me across the face. Quite a lot happened in the past day since yesterday afternoon’s post so I’ll try to catch you all up… Yesterday afternoon (Saturday), things were going pretty well. I had actually started to nurse […]
The Adventures of Colten Robert 