Mother’s Day Haiku!

teeth marks on shoulder
"I bite you instead of kiss!"
painful toddler love

silly putty stretch
from here to there, everywhere
miss my old nipples

don't pull out your hair
no matter what the kids do
will just grow back gray

sleep in the bath tub
copy of Dwell is destroyed
me time so worth it

mastodon, t.rex
my patience at 5pm
things that are extinct

shut up you conscience
maybe I like fart jokes, too
it's fun to be gross

the kitchen counter
piles of bills and magazines
work great as napkins

the panty custom
always wear them in public
important lesson

the penis custom
off limits in shopping cart
important lesson

tracheostomy
not something we had planned for
couldn't love him more

mommy-ing challenge
the bad days could be worse days
enjoy this moment

love to fill the world
in tiny widened pupils
staring at my face

tiny baby socks
become bigger stinky ones
still love the feet, though

"I love you, Mommy."
melts my heart every time
even cleaning poop

Parenting fail(s)?

opinionated
making good sense of language
I'm learning so much

This morning, the wee-er one was chatting with her grandma (her mémère).

"You didn't use to be funny, Mémère," she said, as they were joking. "You used to be creepy."

Nice.

Then, later in the day, the wee-er put on her first bikini. She ran around the house, delighted, but soon decided the top wasn't really worth the hassle.

"I don't want to wear my nipple swimsuit, Mommy," she said. "I only like the panties part."

Totally ready for the French Riviera, this one.

In other news, the wee one got a pair of khaki shorts and some matching flip flops. He was wearing his shorts, flip-flops and no shirt. "Do I look like a native in Africa?" he asked.

"You look like a boy from Texas in the summer," I replied.

This was met with much consternation and a skeptical look.

Clearly, the kids need to get out more.

Or not.

Moon dust and unicorn farts

nuclear breakfast
plus inhaled unicorn farts
western med magic

True conversation:

RING RING RING

Me: Hello?

Pharmacist: Is this the mom of Ike-a-saurus?

Me: Yep.

Pharmacist: You know that prescription your son's pulmonologist just called in?

Me: Yep. The inhaled antibiotic?

Pharmacist: Um. It costs $4,000. Did you know that?

Me: HOLY CRAP.

Pharmacist: We don't keep it in stock, so I had to order it. We'll have it in tomorrow.

Me: HOLY CRAP. [long pause, followed by maniacal laugh-crying] HAHAHAHAHAHA

Pharmacist: Hello? Ma'am?

Me: HAHAHAHAHAHAHAHAHA

Pharmacist: Uh… we've faxed the paperwork for pre-authorization.

Me: Good luck with that!

Pharmacist: OK. Um. We'll let you know when the prescription is approved or denied.

Me: Hey. Can you tell me what that prescription is made of? Like for real. Is it an FBI secret or something? Moon dust and unicorn farts?

Pharmacist: I know. It's kind of expensive, isn't it?

Me: HOLY CRAP.

[background noise – wee-er one singing "Hoe-lee crack!" "hoe-lee crack!"]

Me: You're right, wee-er one. Maybe it IS holy crack.

Pharmacist: Excuse me?

Me: Hmm?

Pharmacist: What?

Me: So you'll call me?

Pharmacist: Or your doctor will.

Me: You mean my loan officer?

Pharmacist: Excuse me?

Me: never mind

Pharmacist: Um. OK, then. Bye.

Me
: Bye!

So there's that.

Also, next week, Ike-a-saurus gets to drink some radioactive milk so that we can see if he's aspirating his reflux. Gamma radiation and $4,000 medicine. I think we're turning into a comic book over here.

Maybe the radioactive milk will turn him into a mutant baby who can shoot money out of his ass.

Nuclear breakfast and inhalable moon dust unicorn farts. It really is never dull around here, is it?

Ike’s auction

I've been trying to write this post for hours. Struggling to figure out a haiku… struggling to find the right words… I haven't actually figured out what to say, but if I don't start writing something I will just keep staring at the white screen and that's no good.

The auction last night was amazing. So many people, so many amazing things to bid on, so much to process.

It's unreal, this community support we have. Our family has grown by infinity over the past year.

I don't know when we'll take our first trip to Cincinnati. I am desperate for it to be soon. But I read blogs about other kiddos who have had laryngotracheoplasties, or cricotracheal resections and I start to kind of hyperventilate. Wait. Was that just in poor taste what I said? I am tacky even when I'm verklempt!

Anyway, I read about the process, and it is kind of terrifying. We don't even know for 100% sure Dr. Cotton will take Ike-a-saurus' case, so I'm getting a little ahead of myself with the panic talk, but I want to be prepared.

The LTP is some scary shit. It may be a year away for us. Maybe months. Maybe not ever. We don't know. It will take at least one trip up for tests and consultations to find out. And that's IF Dr. Cotton takes us on. (If he doesn't, or can't, one of his colleagues will.)

I used to think it was nerve-wracking waiting for boys to call me. I would test out the phone by picking it up, listening for the dial tone, and being all, "yep, phone still works. Maybe HIS phone is broken!"

I feel the same way now, about waiting to hear from Dr. Cotton's nurse.

But I know when she calls, whatever she has to say, we have a zillion people who have our collective family back. A zillion thoughts and prayers and wishes for Ike. A zillion worried expressions. A zillion gasps of terror. A zillion sighs of relief.

And now we have a zillion dollars to help with everything. Well, maybe not a zillion, but it feels like it.

For that, I can't thank you all enough. We are tremendously, infinitely, immeasurably, grateful.

Airway pictures

airway obstruction
his subglottic stenosis
in technicolor

It occurred to me tonight that I haven't posted any pictures of Ike-a-saurus' airway. Probably because you have to actually scan the pictures to be able to post them.

Now that the pictures are tucked away safely onto my hard drive, I thought maybe you'd like to take a peek. It may not look like much, but I'll try to help you see what's what.

First, a picture of a normal trachea. This is NOT Ike's trachea, it's a picture from tracheostomy.com:

Normal

This next picture is Ike's airway from 2/17/09 – the day of his tracheostomy:
Isaac-Roy_Bronchoscopy_02-17-2009
The top left is his lower airway. It's almost normal in size. But the top right and the bottom right are his upper airway. See that pinprick hole? That's where the ICU doctor managed to squeeze in a coffee straw sized endotracheal tube to save his life the night of 2/13. She is a brilliant doctor. We owe her everything.

The picture below is from the bronchoscopy he had done on 4/21:

Isaac-Roy_Bronchoscopy_04-21-2009

It's harder to tell what's going on in these pictures, and they don't correspond with the others. You can see in the top right, the tiny hole is still there. At first it looks like the opening is larger, but there is that layer of whatever (tissue, cartilage, edema, all three?) and barely in the middle, you can see the small hole. The top left and bottom left show the swelling and redness that have been persistent since the beginning. Are they caused by reflux? Are they exacerbated by the week of coughing he'd had prior to this scope? Probably both, with reflux being the biggest problem.

So what do we do? Wait for him to outgrow the stenosis? Is that even possible? The ENT is doubtful. Have a cricotracheal resection? A laryngotracheoplasty? We don't know. Frankly, we still don't know anything. Except that the reflux is really mucking things up as far as getting a good idea what his airway is like when it's not constantly barraged with damaging acid.

This is why we're going to see the GI doc today. All of her answers are going to be unpleasant, I think.

I can remember, sitting with itty bitty Ike-a-saurus in the NICU, holding his bare skin against my bare skin, and listening to the nurse tell me that all preemies have reflux. He had, amazingly, shown very few signs of being refluxy, though. He was tolerating his milk, even breastfeeding when he could. And I thought to myself, as I stared at all the monitors and wires, and listened to the beeps and alarms, what if reflux – reflux – is what bites us in the ass one day. I vividly remember thinking that.

So here we are. I grasp onto the hope that the last set of pictures from his April bronch are just showing redness and swelling from the illness and the terrible coughing he had. I want to believe that his reflux isn't that bad, it's controllable with a tweak of his meds. But we'll see.

Just writing this post has probably jinxed everything tenfold. Why does that happen? Damn blog!

I'll leave you with another picture. Way cuter than a minitaure airway – a ginormous head:

Photo(14)

Sweet baby boy. We have to get you fixed.