Monday, September 7, 2009

Baby Jack - My Hero

Baby Jack has gone by many names in just his first 3 1/2 months of life: Jumpin Jack Flash, Jack of all trades, Jack Sprat, Jack the Beanstalk, One-eyed Jack, Million Dollar Baby, C-PAP Jack, Pee Dogg, King of the NICU, Darth Jack, Jack be Nimble, Jack in the Box, and more. But perhaps my favorite one was mentioned by his doctor over a month ago when she said, "Jack is my hero." At first, I thought to myself, "how can a baby be a hero?" Over time I have come to appreciate what she has said.

In just the first few months that Jack has been around, he has struggled for his life against such poor odds. He's gone through more, medically speaking, than some of us ever will. He wasn't given much of a chance by medical staff or the statistics that say he had little to no chance. His determination to live is so strong, and yet, he doesn't even know what he's fighting for. He is so eager for life, but he doesn't know what life's all about. My problems seem to pale in comparison next to what he's been through, and he gives me hope and strength that I can overcome whatever challenges come my way.

This past week was full of new challenges for Jack. Almost a week ago was the surgery for his shunt placement. This is a permanent contraption that will deal with his hydrocephalus. The tube from his head to his ear is clearly visible, and then it disappears into his neck and continues down to his abdomen. He did great in the surgery, and was able to go off the ventilator immediately. However, by the end of the day it was clear our boy was in quite a bit of pain. The baby Tylenol the doctor gave him for pain didn't quite cut it. This weekend we saw some good improvements. He's already had one adjustment of the head pressure, which is done through some magic magnetic super duper decoder ring that only his neurosurgeon can change. That means we'll be making frequent trips to Missoula to get that all checked out.

Little did we know that this surgery would also entail his first hear cut and dye job. Those little blond hairs he worked so hard to grow were shaved off on a portion of his left scalp, which left an interesting abstract coif. The betadine used to sterilize his skin for the surgery has also tinged his remaining hair a bright orange/yellow. Kate Gosslin is rumored to be considering a move to this new doo.

As I mentioned last week, the big hurdle standing in between Jack and his new home in Clancy is feedings. He must be able to take all of his feedings on his own (no NG tube) and still gain weight. In the past, he just had to sit there and let the food come to him. He's not always happy about having to work for it, but he has had a pretty good track record. If he is not able to do it on his own, the doctors will have to put a stomach tube in him. We would prefer that he would take the feedings on his own, so we've been trying to push him a little more in that department. Over the past two days, he hasn't had a feeding with a NG tube, and he's still been able to gain a little bit of weight. We hope this is Jack's way of saying, "Stomach tube? No, thanks."

Even when he is able to go home, Jack still faces quite a few challenges - viruses, bacteria, neurological, respiratory, digestive, developmental, etc... Much of life has been painful, inconsistent and probably just downright unpleasant. But one thing is for sure - Jack has demonstrated an undeniable will to live and has overcome these barriers with a remarkable determination. He truly is our little hero.

Jon

P.S. The first picture was taken right after Jack's shunt surgery. The second one is where we dressed him up in Griz gear for the first UM football game of the year. In a prophetic show of the Griz's win that day, Jack is making the umpire signal for "touchdown."

P.P.S This is actually my second time writing this update. I sent it first on Sunday, but it has since been lost in cyberspace and left no remnant of its existence.

P.P.S.S. Jack's due date is this Wednesday, September 9th. He was born almost four months ago on May 15th.


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3 comments:

Tami said...

Jack is incredible and such a handsome little boy! He's come SO far and will continue to thrive when he makes his big break from NICU.

I will pray for no NG tube feeds!

Tami

Barbara said...

Yay Jack!

Blalock said...

So proud of the little guy! It has been amazing to watch his journey from the sidelines of the Internet.