Making a change?

I've been thinking about the blogs people have that are all about their perfect lives. "Today I wove rose petals into my daughter's hair and she loved it so much that she rewarded me by staring lovingly into my eyes for five minutes and then cleaning the kitchen. I know she's only three, but she just loves to clean the kitchen! After that, my oldest son went with a friend to cook meals for the homeless, while my youngest son was honored at banquet for gifted infants. My husband and I were able to steal away for a few moments to experience glorious sex in our spotless bedroom. I'm so happy to be able to cook this pan-seared pork tenderloin with chipotle cranberry chutney for my family tonight. It's such a quickie recipe, it leaves me time to bake that fat-free cake and knit a sweater for my elderly neighbor."

You know those blogs.

Maybe I should change mine into one like that. Only write about the amazing things, never talk about things like how, when I shower, 2/3 of my hair falls out and then seems to instantaneously grow back silver.

The problem is, if I converted the blog to All Awesome, All the Time, it would sound like, "Today I… uh… didn't have to go to the WIC office because my husband went for me." or "Today I was only shat on once." or "Today I suctioned a trach and didn't get any secretions on my hand."

Just not the same.

But that's OK.  One day the kids of the people who have the perfect blogs will write tell-all books and we'll finally find out the truth. My kids will never have to write a tell-all book because I blab everything already.

Actually, I'm not sure if that is OK or not. But it makes blogging a lot less annoying.

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The finger trach trick

the finger trach trick
good for causing heart attacks
in other people

Ike-a-saurus is ALL OVER this talking thing. He squeaks and chirps
all day. He has learned that even though he can vocalize without
wearing his speaking valve, he can be a lot louder with it. He has also
learned that when mean Mommy, or the mean nurse decide that it's time
to give the valve a rest (it has no humidification, so he can only wear
it for short bursts of time), he has another option. This option is
to remove the HME he wears over his trach (also called a "nose," it's a
barrel-shaped plastic thing with paper or foam on its ends, and it acts
as a fake nose, moistening and warming the air that is breathed into
the trach).

Note: You are not supposed to remove the HME unless you are hooked
up to a mist collar (like he wears when he sleeps) or unless you're
wearing the speaking valve.

Lost yet? Sorry.

Anyway, we take the valve off so that Ike-a-saurus' trach doesn't
get too dry. This does not make him happy, because it's harder to chirp loudly without the valve. So to circumvent us, he
yanks off the nose we put on him and proceeds to put his finger in his
trach.

Plugs it right up like a finger in the Hoover Dam.

Except instead of preventing a water leak, he is PREVENTING BREATHING.

Well, he might be preventing himself from breathing, but with a
finger in his trach he can make the loudest noises of all. This pleases
him immensely – until he starts gagging for breath. How many times can
I have a heart attack in one day? Infinite, it turns out.

But he loves it. As soon as the nose goes on, he yanks it off to
either eat it, or to stick his finger in his trach and yell "AH! AH!
AH! [horrible gagging choking noise]"

Between this ruckus and the potty train, our days are not boring around here. Not boring at all.

Ring ring

So guess who called today? It took leaving some grouchy messages, but finally, finally, we got the call from the Cincinnati folks.

Long agonizing story short: he needs to get to 22 pounds (10 kilos) in the next 6 months or so (he's at 14 right now). He needs to stay healthy this winter – no lung damage, no aspirating. If we can get him bigger and keep his lungs healthy, Ike-a-saurus can have the laryngotracheoplasty (with an anterior graft) sometime this spring. They'll take out part of one of his ribs and use it to reconstruct his airway, and we'll be up there in Cinci for quite a long time while he recovers. I am desperately wishing for the surgery and desperately dreading it. Very confusing.

They are hesitant to do the surgery now, while he is so small for his age, because you can't put a giant airway into a small dude. So, if he's too small when they do they surgery, and then gets a lot bigger, his airway wouldn't necessarily catch up. Then the awful possibility of being re-trached comes into play.

For the next several months we're going to closely monitor his lungs and do our very best to fatten him up. Then, sometime in the spring, we go back up to Cincinnati, repeat a lot of the tests we just had done, and keep our fingers crossed that everything is a go for reconstruction.

This is going to be a daunting winter of scary viral threats: flu and RSV and nasty random things. I can see it looming in the distance. I literally hold my breath when I think about it. It makes my hands shake.

We just need a hell of a lot of milkshakes, a baby-sized gas mask, and some good luck, right? Too much to ask for? I guess we'll find out.

He’s 1!

we're keeping things calm
a quiet birthday at home
playing and laughing

When Ike-a-saurus was born at 10:50 am on August 25th last year, my body felt immediately calm. He was out, the doctor held him up for me to see, I heard a cry, I started to cry, and my body felt still and quiet for the first time in months. In an instant, the revolt against my pregnancy was over. My baby was born.

There is an irony here that is unmistakable. My body found a calmness just as the world itself fell away. But at the time, I didn't know the world was falling away. I was just happy to hear my new baby cry. And even though the doctors had to immediately put him on a ventilator, and I wouldn't hear him cry again for a long time, that one small noise fed my heart for days upon days. He was OK. He would be OK. And he was finally here – even though "finally" still meant 12 weeks early. We had survived a marathon, he and I. The shortest, longest pregnancy I'd ever had.

He was born on the first day of first grade for the wee one. It was a very busy day.

I think all of Austin stopped and held their breath when they heard Ike was coming. I think, maybe, we're all still holding our breath.

During those days in the NICU, when we would allow ourselves to think more than a few hours into the future, my husband and I joked about how Ike-a-saurus' first birthday would be filled with ponies and carousels and fireworks and unicyclists and a big brass band. Now that his first birthday is actually here, I feel a little guilty for not following through with our promises. And yet, the more I think about the day he was born – the things he went through, the things we all went through – I think a quiet a day at home with just our family is the way to go.

There was joy on the day he was born, lots of it. But there was fear, too. Fear, and uncertainty, and strangers, and bright lights, and loud beeps, machines, squeaky gloves, exhaustion, adrenalin, so much talking and information, me demanding to be taken to the NICU, even though I had to sit in a wheelchair while still hooked up to a catheter… It was not a quiet, family day. It was the kind of day when you have deer-in-the-headlights eyes, and a bag full of pee in your lap, and you don't give a flying flip who sees you like that because the elevator is the only way to get you to close to your new baby.

I didn't get to hold him when he was born. I didn't get to hold him for days.

We are making up for that today. We make up for that everyday.

Isaac Sawyer is 1. Did you know that superheroes have birthdays?

Tinytoes
2008

Photo(30)
2009

Happy birthday, my sweet boy. I love you so much.

The Balb

In case you're wondering, we STILL HAVE NOT HEARD FROM THE CINCINNATI PEOPLE. This could mean several things:

1) they are very busy

2) there is obviously no rush on their part to get the trach out

3) no one realizes how worried we are

4) all of the phones in the midwest have been stolen by an evil overlord

I did briefly talk to our point of contact early last week and she told me they would be meeting soon and she would get back to me, so I know the ball is rolling. I just didn't realize it was a 600 pound ball that I would have to push uphill.

I should not be surprised. Nearly everything doctor-wise is Sisyphean. We really shouldn't even call them doctors at all. We should call them The People Who Require Sisyphean Efforts of Not Getting Punched In The Ear. Because that's what they can fucking be sometimes.

However, I'm going to cut them a little slack because of this weekend.

Thanks to the Cinci folks, we came home from our trip with this cool little doodad called a passy muir valve. It fits onto the end of the trach and allows air to be breathed in, but not out. So in order to exhale with the PMV on, Ike-a-saurus has to push air up through his vocal cords and out of his nose and mouth. Cool, right?

The wee-er one had been referring to Ike's valve as "that tang on his
trach." Funny, but, uh, Sisyphean to explain to people. So, I told her she could call it a valve. Now she says, "that balb on his
trach." Better.

Well, because his stenosis is grade III (75% or greater airway obstruction), we were told by our doctor in Austin that he would never be able to tolerate a balb. The doc here wouldn't even let us try one out. In Cinci, though, they've come up with a way to modify the valves so that even kids like Ike-a-saurus have a chance to learn to vocalize.

When we were in the office up there, the NP was able to test the valve out on Ike, determine he wasn't tolerating it, and right there in the exam room whip that sucker off to the countertop and drill two holes into it with a Black & Decker cordless drill.

Fucking rad.

With the two tiny holes in the side, he can tolerate the valve just fine. It means he blows less air up through his cords, but at least he gets a shot at trying, right?

Well, he's been trying mightily. And this weekend he had some major success. Real baby noises!

But even better? Today, WITHOUT the balb, he made the exact same noises. It appears that wearing it has trained him how he needs to breathe if he wants to vocalize. He has been squeaking and honking all day. It is enough to reduce me to a slobbering puddle of weepy mama-ness.

I haven't heard his voice since February.

Hearing it fills me with such a loving peace, that at those moments I wouldn't care if the Cinci docs never call us. They've already given us his voice back.

I could just sit, snuggled up to my tiny guy's fuzzy head, listening to him proudly shout gah! and ah! and ah-ah!, and feel utterly content. 

He still can't vocalize a lot, and it takes a tremendous amount of effort on his part, but he has fucking outsmarted the balb. And this after our local doc told us we'd never hear his voice as long as he had a trach.

This is a lesson for me, because for this little dude, nothing is Sisyphean. Nothing is.

He's all, "Up yours, impossible task. I drink your milkshake, bitches. I drink it ALL."

I need to be more like that. It's time to drink the evil Cinci phone overloard's milkshake, don't you think? I'm going to drink. it. up.