Monday

follow-up

6 am Friday morning saw us heading down to Phoenix, four hours away, for a follow up with the Pediatric Neurosurgeon at Phoenix Children's Hospital. It was the first of many follow up appointments to come. There were two highlights to this appointment.

1. We were able to look at images from the original CT scan taken the day before the surgery alongside images of the MRI taken the day after the surgery and compare them. It was wonderful to see the amount of fluid already lessening in the post-surgery MRI, and the amount of brain tissue increasing, or responding to the decrease of pressure. This means the shunt is successfully doing it's job. What it means for James, function-wise, is anyone's guess.

2. We were reassured in our assumption that a nurse gave us very conservative advice when recommending that James and I not venture into public for a year. Two months is more like it. After that, we are free to go and do what we like - church, reunions, shopping and more!

Along with those positive experiences I'll share a few milestones, James style. These are things that may not be significant to the average newborn, but are great steps for James to make.

- James is strengthening his grip. Before the surgery, he had the normal newborn vice-grip, squeezing my fingers very strongly, especially as I would hold his hands to help reassure and calm him during various procedures. After the surgery, he had very little hand strength. We have been working with him during his awake times to increase his strength, and it's coming along. He white-knuckled it yesterday.

- James is eating well. He mastered the suck, swallow, breathe combination. This is huge. Because of this he is growing and thriving. Because of this, he didn't need any help getting the nutrition he needed.

- James is starting to hold his head up for a moment here and there. Because of his heavy head, and because of his weakened state, this was something he wasn't able to do until the last couple of days. He still needs a lot of head support, but we're on our way!

- James is very good at making eye contact, and always has been, even post-surgery. But now he is showing signs of beginning to track objects in movement. He's still VERY early in this process, but this is a very good thing. Many infants with Hydrocephalus have significant vision problems, and James might be one of them, but so far, we're headed in the right direction.

James has one other special skill - he can tear his oxygen tube out in a split second. He uses oxygen at night, and I barely get the tube in place and it's torn right back out again. He does this so well that he does it in his sleep. Tube tickles nose, hand shoots up and grabs tube and yanks it out, mom repositions tube in nose, James sneezes, tube tickles nose, hand shoots up and grabs tube and yanks it out. Over and over.

He's so dang cute.

5 comments:

Peg Lewis said...

Hmm, so that's how he practices his grip! Clever fellow...

This is so wonderful to read! thx

Eloise said...

That all sounds so great! Way to go, Baby James!

Martie said...

I'm sohappy to read all of this, and was thrilled to talk to you for so long today! I love you!

Real said...

LOVE number 2!

And yay for James. I love your dedication and commitment to breastfeeding through difficult circumstances, too. Can't wait to see him tear the O2 tube off his face!

FarFam said...

So glad to hear the wonderful news! We continue to pray for you and baby James. I appreciate your willingness to share with us your thoughts and struggles. I am learning from you and I know Heavenly Father is mindful of your family!