Tuesday, September 30, 2014

Preemie Power!!! A Contest for preemies

Reasons I like Hand to Hold's annual photo & essay contest for premature babies:

1. The title. Preemie Power. It speaks volumes to parents of premature babies. Our children had to learn to do things the hard way, and they powered through.

2. The stories. When my son was born, I felt like we were alone, like 23 weekers just didn't make it. That's what the internet seemed to tell me. But Hand to Hold's photo and essay contest tells me a different story. It tells me that there are many many kids out there whose parents were scared to death for the first few weeks and months. It tells me that despite the rough start, those kids made it. And that brings hope. Hope is good.

3. The spin. I admit, I entered this year. It's our first time entering, and I did it in part because I really really looked forward to throwing a superhero spin to my son's NICU experience.

I pretended I was future-him, a junior high kid with an overactive imagination, explaining to all his
comic-book-geek friends what all his scars are about. I made up this elaborate story, complete with super-villians. And then, when I was done, I had his dad throw in a few good touches, and a friend who is better at comics than I help me get the genre right. I was excited with my finished product (which I might post here when voting opens, we'll see).

I realize my essay probably won't win. It is light-hearted and lacks some of the sympathy, tear-inducing language that the judges will likely gravitate toward. It makes fun of some of the scariest NICU diseases out there - but it does so on purpose. I learned something from five months in the NICU and from my chronically ill father. Namely, we need humor. In our darkest times, humor is like a firefly, shining a bit of light. Not enough to read by, but enough to remind us that there's an end to all of this.

And there's something delightful about an escape into fiction, into a world of superheros. In that world, the good guys always win. And that's something I longed for in the NICU. An easy, straight-forward fight.

Pontificating aside, you all should check out the Preemie Power contest for inspirational stories and pictures of other cute kids who beat the odds.

And -- if you are the parent of a preemie -- you should enter this contest. You can win cool stuff. Entries are accepted for the next two weeks, and voting begins mid-October.  CLICK HERE for more information.

Friday, September 5, 2014

J's progress - 25.5 months old

J woke up with a huge smile and kisses today.  Real kisses. He was so proud of himself. He's given them before, but not for a while, and he's only recently learned to pucker. I think he was just excited to see what I'd do. He smothered me with them and then laughed with joy.

Bad news:
I put this first because it's short. He has obstructive sleep apnea. We'll consult with an ENT later this month.

Good news:
It is day two of no projectile vomiting. A week ago I finally broke down and bought emesis bags online. He had been vomiting three to four times a day all summer. They'll probably come in the mail today. Maybe we won't need them much after all.

What has changed? We're not particularly sure. It's week three back on reflex meds, so that helps. Also, we've been more proactive with the inhalers, and we've finally gotten a new filter for his bedroom air filter, so he's breathing better. Plus, we're running out of high calorie formula, so we're using more pureed real food and less formula. Not enough to make the difference, but maybe just enough that things are sitting better on his stomach and moving better through his bowels. There is a correlation between constipation and vomit, so keeping things moving is one of many keys.

Jonathan has also learned the word "burp." (He says "buub" which sounds a lot like "bahbah" -- bottle, or "bah" -- ball, so you have to listen carefully.) In context this is hugely helpful. He now tells us clearly that he'd prefer to not drink anything for a bit while his stomach works on other things. In truth, it has less to do with the word he's saying and more to do with the fact that he's trying to communicate with words. In the past, he'd scream because he didn't want a bottle, we'd have no idea what was bugging him, we'd reintroduce the  bottle or sippy cup thinking he was still hungry, and the mere sight of it would induce gagging, crying, and unless we were very lucky, vomit.  Now he stops, arches his back, says "buub!" and we wait. He believes we'll listen to him, we now know to listen to him, so everyone is a lot more patient with everyone.  The whole household is happier.

(His meds for his acidosis always give him gas bubbles, so this new word is useful at least three times a day.)

He's more curious about things, more talkative, and has that bright look in his eyes that says, "oh yeah, I totally know what's going on here."  Today on the swing I'd say "ready, set" and he'd answer "GOOOO!" before I'd push him. He loves people more than just about anything, but balls and music are second best.

He's 18.75 pounds. Almost 19. That's a gain of nearly three pounds this summer -- more than three times what he gained from October until May of last year.

We're working now on building strength. He can climb up and down stairs, but his right leg is weak. We're trying to get him to lead with the weak leg in order to strengthen it. When he stands, he locks the right leg, which isn't good long term. He hasn't added to his record of last month of five steps yet, but maybe when his new AFOs (ankle foot orthotics) come in he'll be able to make strides with his strides.

And again, J has taught me just how much small strides can lead to greater things. Maybe I'll run a half marathon tomorrow. If I do, I'll be remembering him around mile eight or nine, when things get hot and my feet start to blister. I'll remember that hard things are still possible and still worth doing. I'll remember that even if our bodies have betrayed us, often we can reshape and strengthen them. I won't ever be an athlete and J won't ever be a goalie (his vision being what it is). In all likelihood, I'll never be able to finish a 5k in under a half hour, and J won't look like a two year old until he's three.  But just as with J, I can always grow, too. I'll stop comparing myself to others and instead just look at that next step. 

Okay, let's be honest, J gets distracted. Half way up the stairs he stops and turns around to see how far he's come. So he doesn't always look at that next step.

But there's something to looking behind, too. To seeing how far we've come.

Keep on growing, baby J. You've come a long long  way.