Today Ike is gestationally a year old. This was his due date last year. It's so confusing when people ask how old he is, because I have to decide whether or not to go into the long story of his adjusted age, tell them his technical age, or just say his adjusted age, without saying the word "adjusted".
It's weird because in a lot of ways he's more like a one-year-old than a 15-month-old. But in other ways, he's WAY more like a 15-month-old. It's fascinating to watch how he's developing, but it's really hard for me to not compare his achievements with the wee one and the wee-er one at similar ages.
I've never thought of Ike-a-saurus as "delayed" in any way, and we've been fortunate that, for the most part, he hasn't been. If it wasn't for the trach, I'm pretty convinced he'd have a good handful of words by now. I'm also pretty sure if it wasn't for the trach and spending a month in the hospital - for the most part sedated and paralyzed - he'd be walking by now. (That's a long time to lose, when you're only 5.5 months old!) Not to mention the recovery time from being trached, and spending many more weeks stuck in a bouncy seat, attached to tubes and wires at home.
I think those things and then I worry that I'm making excuses for him. I don't mean to. He's a baby who doesn't need excuses. He needs celebrations of everything he does, and I have to make sure that not only do I recognize that, but I don't see any delays (if and when they materialize), as problems or something I could have or should have prevented.
It's an interesting, wonderful, scary, weird thing to watch your baby grow after he had to gestate outside the womb. Did you know I got to watch him grow nipples? Not many mamas can claim that!
November is the March of Dimes Premature Awareness Month, by the way. The March of Dimes is such an amazing organization that had a hand in many, many medications and procedures that kept Ike-a-saurus growing and thriving and breathing. We will forever be grateful to them. Just like we will forever be grateful that Master Ike-a-saurus has a fantastic summer birthday. It might not have been the day we were expecting, but that's OK. Here he is, kicking ass and taking names.
He will always be our Thanksgiving baby, even if he was born in August.
Always ignore the growth charts, only pay attention to your child's individual growth curve... yeah, yeah, I know this. I believe it. It's something with HAVE to do with Ike-a-saurus because he's always been so tiny. Even for his adjusted age, he's never been on the chart. Not a lot of 16 pound nearly-15-month-olds out there.
I am going to negate everything I just said up there by letting you know that last week Ike finally hit the chart for his height. And we are THRILLED. We had to adjust his age (11 months instead of 14) because of his prematurity, but as an 11-month-old, he's on the chart! 10th percentile for height!
So, ignore the charts. Except for when you finally make it on there. Then run home, get out your measuring tape and verify what the doctor said because you don't believe it. After you verify, sit back and grin.
I'm not a reach-for-the-status-quo kind of person, but I have to admit that being on the chart is a bit of a relief. Now if we can just get there with his weight I might throw a "Maybe We Won't Need Growth Hormones After All" party. With a follow-up "He's Big Enough To Have His Airway Fixed" party. And then a bon voyage "You're Weird For Wanting Your Kid To Be In ICU For Weeks, But Maybe Not Weird For Wanting The Trach Out, Have A Great (?) Trip" party.
You'll all be invited.
I know I've said this before, but you guys, it is WEIRD having my house as someone's workplace. Equally weird is that one of my kids is someone else's full-time job. Not just that, he's TWO people's full-time job. Plus, my full-time job, and my husband's full-time job. How many adults does it take to care for one trach baby? Exactly a lot.
Seriously. That is weird.
Side-stepping the weird, though, was today. A non-nurse day. We traded out hours with our Friday nurse so that she can come on Halloween while we're at the Texas Book Festival. (side note: Come to my panel at 1:30 on 10/31! It will be awesome - or you'll get to see my real-world interpretation of Liz Lemon. Either way? Win!)
To be honest, when we know we're going to have a no-nurse day, we kind of dread it. Our weekends are usually nurse-free, and while they start off fun, they don't always end that way. Today, though, was different. Ike-a-saurus played around the house like a 14-month old should. He ate well, napped well, ripped electrical components out of the wall well. And not only that, the wee-er one enjoyed the one-on-one time with mommy and daddy. No fits, just a fun day.
I don't know what this means for the future - usually good days are followed by "Oh, hell no" days. But for now, it's really nice.
Now, this doesn't mean we won't cheer with glee when the night nurse arrives. And it doesn't mean we're not counting down the hours until reinforcements arrive on Monday, but for now - at this moment in time - it's been a lovely day.
It's nice to have one of those every now and then, isn't it? Even if it means reflecting on the weirdness of having people work in your house, and what it's like when they take a day off.
It's been a whirlwind day today. The computer blew up, I had a school visit to talk about Mike Stellar, we had a very early am appointment with a speech therapist. Maybe not a normal day for everyone, but on par for us.
Still, though, it's not like the whirlwind day we had on October 20th last year. Last year, I woke up super early in the morning. I couldn't sleep. I packed up a bag of food I knew I wouldn't eat and went straight to the NICU. We were pretty sure Ike-a-saurus was going to get the heave ho and be able to come home, but we didn't know for sure. We had to get the OK from the doctor, see some MRI results, make sure he passed his car seat test, etc.
Eight long weeks he'd been in the NICU. Eight long weeks of going back and forth and having to live away from my baby. Eight long weeks of the wee-er one not being able to meet her brother because she was too young to visit the NICU.
At the time, those eight weeks were long and torturous and seemingly endless. What we didn't know then was that they were training us for the future. A time when things would be even more long and torturous and endless. But for that moment, that day last year, I was in agony to get my baby home. To put together a fractured family. To get things situated and "normal". To just be home for good.
Now it's been a year. A kind of long year, actually. And we're not normal like I thought we were going to be, but that's OK.
It's better than OK.
Happy home from the NICU anniversary, little dude. You amaze us everyday.
There's a point in the night when you want to go to sleep. And even though you are not asleep because you are keeping a watchful eye on your little dude who needs a watchful eye, you still think, "The alarm will go off if he really needs me, plus I'm right here on the couch, an arm's length away." You decide, then, that it's OK to close your eyes. So you find a pillow and a blanket, and you turn down the lights and snuggle as best you can into the nest you've created in the couch. Then...
KA-THUNK KA-THUNK KA-THUNK
The mist collar tubing is full of water.
The mist collar tubing being full of water is one of those things that always happens at the most pain-in-the-ass time. Like your kid always having to poop at the grocery store. Or Kanye stealing your microphone when you finally have your notes out. Almost always, the mist collar set-up needs emptying when you're just about asleep. This is especially true in the hospital when you are so exhausted you can't see straight, and the mist collar tubing is elaborately snaked through the rails of a crib and thus impossible to reach without getting up, walking around to the other side of the room, and dealing with it.
It's ka-thunking at me right now. Always at 2:30 am. Always when I'm hunkered down, eyes tearing from exhaustion. At least we're not in the hospital.
The mist collar set-up really isn't that big of a deal. You have an air compressor with a big water-filled nebulizer tank. This is hooked to a little water heater via some plastic tubing. More tubing hooks from the heater to a little mask that you put over the trach. This way, the trach gets warm mist blown into it all night so that it doesn't dry out and get plugged up. Simple enough.
The tubing fills up with water from all of the condensation, though, so you have a little water catch attached in the middle that allows you to drain the water out. This stops the ka-thunking noise, and gives you a cupful of water to dump in the plant on the sideboard when you are too tired and/or lazy to dump the water in the sink.
Except that, when you do this night after night your plant will overflow onto the sideboard, drench several library books with plant water, drip onto the carpet, and make your husband go, "WTF? Who's been drowning the plant?"
In case you were wondering.
Now I am going to go empty the mist collar tubing. But not into the plant. Because I want to stay married. And I want to go to sleep.
Now that we have H1N1 checked off the list, we can check off strep, too. Well, the wee one has strep. Ike-a-saurus' strep test isn't back yet. The tiny man also enjoyed a pertussis swab today. Ever had one of those? The (apologetic) doctor has to ram a flexible metallic q-tip apparatus so far up your baby's nose you begin to worry that maybe there is a brain jar sitting on the shelf and that your (apologetic) doctor is actually a skilled ancient Egyptian.
Two weeks until the pertussis test comes back, though we all agree it's a huge shot in the dark. No one was pleased to hear the sound of a wounded dog coming from Ike-a-saurus' trach this morning as he coughed, though, so we figured it was better to be safe than sorry as far as testing goes.
Not so much fun around the Haiku of the Day household over the past few days.
As exciting as it is to see your pediatrician gown up and try to see how far up your kid's nose he can get before touching brain, it is not something I would like to repeat. I think Ike-a-saurus is with me on this.
Something else we've learned today... Ike enjoys drinking thickened chicken broth mixed with olive oil from his bottle. Weird kid! But I'm glad he's eating.
In other news: the wee one will not eat any chicken broth, thickened or no. He, in fact, will only eat strawberries and goldfish crackers with the occasional pain reliever tossed in for good measure.
In other, other news: that sound you just heard was me falling to the ground in an exhausted heap.
This is going to be bitch of a cold and flu season, isn't it? And word on the street (or rather, word from the Infectious Disease doctor with the awesome cowboy boots) is that RSV season hasn't even started yet.
Anybody have a bubble handy? Preferably sanitized from when John Travolta was in it? I don't have any money, but I can trade you some hand sanitizer and maybe a N95 face mask. Let me know.
Hello. I know I already wrote you a Dear, Swine Flu, You Asshole letter, but I thought it would be nice to follow up. Cool? Cool.
Listen, I know we've said some harsh things to each other. And I know, at the time, we meant them. You meant to make my trach baby as sick as possible and laugh in our germophobe faces, and I meant it when I said I want to punch you in your tiny dick.
There's no denying we aren't friends. However, I'm a little worried about you.
I know that sounds weird, but really, how is your state of mind these days? I feel a little bad because our family was able to kick your ass with so much more vigor than you were able to kick ours. I mean, at first you definitely had the upper hand. I'll give you that. Making me rush my baby to the hospital via ambulance in the middle of the night because he's unresponsive gives you some points. Asshole points, but points.
Having the pediatrician tell me that we are the worst case their practice has seen of the flu to date... gives you more asshole points.
Having my little dude be one of only a handful of people in town who have been hospitalized because of you - even more points.
And yet, he was only in the hospital for two days. And not even in the picu. BURN.
The other two kids had it and were only sick for a couple of days. BURN.
The pediatrician is telling all the freaked out moms not to worry because if his former 28-week preemie trach baby patient can be OK, their kids should be fine. BURN.
And so, while it seemed like you had the upper hand there for a few days, and I was busy freaking out in the hospital with Ike-a-saurus, we were actually teaming up to defeat your ass. How about that? Sneak attack!
I know your ego must be in shambles right now, and I feel for you, I really do. Or maybe I do. Or really, no. No I don't. But still. I just want to make sure there are no hard feelings. Please do not think you have to prove anything by causing a relapse or mutating or any of that mess. Please just move along. There's nothing to see here anymore. No one left to infect. You tried your best, you gave us a run for our money, and we prevailed.
But I mean that in the nicest possible way.
I was also wondering if you could spread the word to your friends "RSV" and "Seasonal Flu" and "Parainfluenza" and "Viral Pneumonia" and all those other beasties you hang out with. Can you please tell them the embarrassing ass-whopping they face if they dare to come into this house? I would appreciate it.
Now tuck your hemagglutinin between your legs and scurry away from here. We are done with you. I will lob nasty language and threats at other germs now.
Be gone, swine flu! And take your damn aporkalpse with you.
a cool, rainy day
brain tries to comprehend it
this requires noodles
So "requires" has two syllables, right? My southern heritage is telling me that it has three. I think my southern heritage is misleading me, so I'm sticking with two. But feel free to argue.
Anyway, hello cool weather! It was so chilly this afternoon that Ike-a-saurus was out on the porch, sitting on his nurse's lap, legs covered with a blanket, hocking loogies on the concrete. Just like an old man.
In my imagination, it could have been a scene from Annie. With Ike playing FDR, his nurse playing the wheechair, and with more loogies than I remember seeing in that movie.
Inspired by Ike's old man-ness, the cool weather, and my husband's hacking swine flu cough, I made some soup. Like actually made it - I chopped up carrots and celery and everything. What the what? I know! It was good, too, with chicken in it, and egg noodles. Also, there were some bones that I didn't manage to fish out, and I burned my finger, but overall it was a surprisingly successful foray into the kitchen.
It's hard to believe fall is here, and yet, it feels like it's been about a thousand years since last fall. In the beginning of October last year, I was going to the NICU everyday, scrubbing my hands and arms raw, and teaching a four-pound Ike-a-saurus to breastfeed.
I take back the thousand year thing. It feels like a MILLION years ago. And a million years before that was the last time I made soup.
It's nice to make soup again. It's nice to feel a cool breeze. It's nice to see lungs strong enough to splatter mucus on the ground.
If Daddy Warbucks was here, I might even burst into song.
1. You'll never know if you actually have the swine flu because no one will send the test off for it. Well, you might know if you are dead, because they test post-mortem.
2. The ER and our pediatrician said all type A flu in Austin right now is H1N1 because there is no seasonal flu yet, so I guess 1 doesn't matter.
3. Boy howdy am I tired
4. Boy howdy has it made Ike-a-saurus puke a lot (the flu, not me being tired)
5. We are going through oxygen tanks like they're, uh, oxygen. Those tiny little lungs are not pleased with the swine situation right now.
6. When you have home nursing care, it's required for your case manager to make a visit to your house no later than 48 hours after a hospitalization. When your case manager arrives, she will gown up and mask herself in the parking spot by the house, so that all the neighbors come out on their porches to go W. T. F.
7. The dude mowing his lawn will go inside when he sees 6.
8. You will laugh at how funny and alarming 6 is, and take secret pictures (as seen in exhibit A below)
9. You will wonder if someone is going to put a quarantine sign on your front door
10. Mostly, you will want to take a lot of tylenol
11. And naps. You'll want those, too.
12. Pedialyte, thickened to nectar consistency looks like candle oil
13. Not everyone with the Swine gets a fever
14. And, yet, I can't stop sweating
15. They make tiny, tiny, baby-sized surgical masks
16. It's a good thing Clorox has that bleach spray stuff, so we don't have to get all Velveteen rabbit up in here
17. We are the first "flu family" our nursing agency has had so far. WHERE IS OUR DAMN PRIZE?
18. Cross-contamination with our primary nurse, FTW. At least she could still come this week.
19. Cross-contamination with our night nurse, FTL. She wasn't allowed to come this week.
20. I know. Confusing.
21. Hospitals? Still suck.
22. The Emmy's are on Sunday to cheer us all up.
23. Should 22 be a joke? I'm totally serious. If everyone is up to snuff around here, I'm going to liveblog the shit out of that show.
24. Imma let you finish, but this list is getting out of hand
26. Tamiflu makes Ike-a-saurus a) sleep so heavily he doesn't breathe right b) stare into space with his mouth open c) cry randomly. Same side effects as methadone. Fun!
27. Tamiflu make me say things like, "The vice principal of your school is the sheriff and the principal is like the parent. I mean like the principal. I mean the parent. I mean the president."
28. There is no 28
29. Avoid the children's hospital ER at all costs. Seriously, I expected goats and chickens to be milling around. Hooray for trachs earning you priority. Well, and ambulances earn you priority, too.
30. Swine flu is too tiny to punch in the dick. But if I could find it, I would totally punch it in the dick.