Tag: hydrocephalus

A year later…

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A year ago today, I posted about my 20 week ultrasound and all of the scary tests that followed. At the time, we had no idea how Taylor's diagnosis of aqueductal stenosis would impact his life.

Here we are at 8 months old and I'm happy to report that as far as the neurologists are concerned, he's doing great. The shunt seems to be working well, the MRI they did in April looked good, and while they ultimately decided he does NOT have a cavum septum pellucidum (CSP) it doesn't seem to have an impact on him. We are so grateful that he is doing well on this front.

We get a lot of questions about his shunt. Unless it fails, he will have it for the rest of his life. There's a messy spool of tubing in his abdomen that will unfurl as he grows. The tube connects to the shunt and drains the fluid from his brain to his abdominal cavity. He has a variable shunt, meaning that there's a cool magnetic wand thing that his neurosurgeon puts over the back of his head where the shunt is, activating the tiny magnetic pin in the shunt, so they can easily adjust the pressure in his ventricles.

As a result, we have to keep magnets away from his head. He won't be able to play contact sports when he is older, but that's not a big deal.

Cognitively, Taylor is doing really well. He is very alert and responsive. He hasn't missed too many of those types of developmental milestones.

One of the concerns I talked about in last year's blog post was that Taylor was measuring very small – over a week behind where he should be. Turns out this was what we had to be stressed out about.

I love to eat. I never ever thought I'd have a kid who had very little appetite and needed to be put on a weight gain diet (at age 5 months!). He has been diagnosed as failure to thrive, had an 8 day stint in the hospital at the end of April, and came home with an NG tube. He gets colds that last forever which is the last thing a kid who won't gain weight needs (sucking from a bottle is tough with a cold and there's the whole lack of appetite issue).

Last week's check up with his gastroenterology team was hopeful. While it's still slow, they were all satisfied with the rate at which he gained over the past month.

He has missed physical/motor skill developmental milestones. But his doctors think that it's mainly because he's so tiny. We are hoping that once he gains more weight, those milestones will follow.

All things considered, Taylor is doing really well. We are so grateful for the love and outpouring of support we have received over this last year. It has been a crazy year. While we have had our moments (months?) of frustration and emotional exhaustion, we love this little person so much and couldn't imagine our lives without him.

Riddle, Party of Four

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Arrival
Taylor George Riddle arrived safely via cesarean section on Tuesday, November 22, 2016 at 11:09 am making us a family of four. He weighed 6 lbs, 2 oz and was 18 inches long.

First photo with mommy and daddy

Hospital Stay
I knew he was going to have to go to the NICU once he was born but it was still hard. The photo above was a snapshot of the 10-15 minutes I got to spend with him before he was whisked away for evaluation. I wouldn’t see him again until almost 12 hours later when Ryan helped get me out of bed and rolled me to the NICU.

Everyday the doctors and NICU team were impressed with how well Taylor was doing. He was eating, sleeping, and breathing okay. Aside from one instance of a drop in temperature, he seemed like a healthy baby with no signs of intracranial pressure affecting him.

Warming up in his pod

I did have to spend Thanksgiving in the hospital. From a food perspective, I don’t recommend it. Ryan had Jack in the Box because it was the only place open. I had this gross meal. Twice (lunch and dinner).

My thanksgiving meal…jealous???

Discharged
After a good MRI and ultrasound of his head, they discharged us on Friday and sent us home. Seriously – I cannot tell you how blessed we are that Taylor is strong and right now, just a regular newborn. Like most babies, he dropped some weight after we took him home. His body is so tiny that he is full on swimming in newborn clothes; we had to go buy a few sets of preemie outfits. Since Sunday, we have been on a feeding plan to get him back up to birth weight. We want him to be as strong and hearty as possible.

Heading home

Next Steps
We met with the pediatric neurosurgery team yesterday to talk about a timeline for surgery to address Taylor’s hydrocephalus. They will be putting a shunt in. The MRI also revealed that despite what they saw during the fetal MRI during my pregnancy, he has no cavum septum pellucidum in his brain. This would normally be concerning but they ruled out all of the bad scenarios so the absence of it is really not an issue.

Given how well he is doing and that right now he is not exhibiting any symptoms to be concerned about, surgery is scheduled for December 27th. If for any reason things look different at his December 15 appointment (or prior to that) they can move surgery up. The risks of anesthesia significantly decrease after a month of age, so since his condition is not urgent, they want to push it out.

Thank you all for your thoughts, prayers, and warm wishes. We are grateful to have a supportive network of friends and family. Please continue praying for Taylor. We are feeling incredibly hopeful and positive going into this next month.

Watching his first San Jose Sharks game with daddy and big brother Nolan

We’re totally in love with this little cutie (who looks a lot like his brother did as a baby)