These are the Voyages of the Uh-Oh What Did We Sign Up For

like a long party
that's the way to think of it
like Rock Band for life

My husband is upstairs right now packing for his two week business trip. His first day on the new job will be spent flying above the fruited plain. And then he'll be training and meeting clients and watching cable and eating out and sleeping in a cold, dark hotel room with no oximeters beeping or children screaming.

Yes, yes, I'm a little jealous.

Mostly, though, I'm enjoying a brief moment of overconfidence. Sure it will be just me and the three kids, alone, weeks before Christmas. Sure this means the only shopping I'll get done will be online and last minute. That's OK, because there's no money anyway. And sure it means figuring out how to bathe two kids while suctioning another, and it means keeping two kids from killing each other while the third climbs up the stairs. It's nothing other moms haven't done before me. And I won't be alone the whole time. We'll have our day nurse and our night nurse for most days, so Ike-a-saurus will be covered for a big part of the time.

I'm actually looking forward to trying to resurrect the lovely day-to-day we had around here when Ike first came home from the NICU (those pre-trach salad days). He and the wee-er one and I would snuggle in bed in the mornings and plan our day, while the wee one was off at school. We would cook and nap and cry and poop and read and write and generally it was really very nice. It's been a long time since we had that, and I'm hoping that with my husband back at work, the kids and I can find our groove again. Of course, our nurse will be here and that will be different, but not bad.

It is going to be quite an adjustment, though. Even my overconfidence recognizes that.

We've had a role reversal over here, where my husband has made sure the fridge and freezer are packed with food so we don't starve while he's gone. He's done laundry and gotten everything situated for his departure. We're as ready as we're going to be.

I am going to try not to panic, to go with the flow – all that cliche kind of stuff. When I see the colors speeding towards me – Red for doctor's phone calls, green for loads of laundry, yellow for medicaid stuff, blue for whatever blue can stand for, I'll hit the notes as best I can and aim for the next ones coming down the line. No time to look back and worry about what I missed. No time to plan ahead. Just twang twang twang, and a hope I average higher than 50%.

The next two weeks will be like Life Rock Band. Life Band? Rock Life? I think the level is probably hiked up to Expert, which is a little above my skill set, but that's OK. At least for now. I just hope I can set it on no-fail and the crowd doesn't boo at me.

Well, they'll boo at me. I just hope I don't strangle the crowd. That would hurt my score.


I was looking through my gmail archives and I found my Paypal folder. In that folder are all of the email notifications of donations people made to help us when Ike was so, so sick. It makes me weepy and incredibly thankful. You all literally kept my kids fed and clothed and sheltered and medicated for something like TEN MONTHS. Feeling thankful feels inadequate, but we are oh so thankful for all of you.

Happy Thanksgiving, everyone!

I think we might have a word!

little dude babbles
we love to hear his noises
the Balb is awesome

For the past few days, Ike-a-saurus has been wearing his PMV and dadadadadadaing up a storm. We all sort of stop and stare in awe. It's amazing and it's been a great distraction because we've been worried that he's getting sick. He had a weird baby fainting thing the other day, and has been sleeping a LOT. No fever, but the doc put him on some hard core antibiotics to try to ward off anything that might be brewing. This has put us on edge, obviously. Having a sick baby is the worst, but watching the sick barrel down on you like a freight train is even worse.

Well, so far, other than some abx-inspired barfing, he seems to be OK. Not only that, his language skills have EXPLODED over the past few days. So maybe the baby fainting and sleeping have been because his little brain was growing exponentially. You never know, right?

Tonight, he pretty clearly said the wee-er one's name and then pointed directly at her. What?! This from the baby with a trach – the baby who wasn't supposed to make any vocalizations until the trach was removed? Take THAT asshole doctors! I hope it wasn't a fluke. I hope he does it again soon, and over and over. I hope I haven't jinxed anything by blogging about it. It was a pretty exciting moment.

And why wouldn't his first word be his sister's name? He hears us hollering at her for, like, 16 hours a day! (Joking, sort of.)

Here he is babbling the other night. This time last year he was 5 pounds and snorting like goat. (Which we were very impressed with, too.)

Liveblogging the AMAs

7:48: I'm LATE! CRAP.

7:49: Jay-Z just said something about Applebees and Alicia Keys could totally kill someone with her jacket. Like, it has sheathed shurikens and shit in the sleeves. Awesome. Alicia Key's jacket is what Irina wants to design.

7:50: I don't know Shinedown. But that is what happens to my forehead as the day drags on.

7:52: I don't actually know half of these people. It's a good thing I read Entertainment Weekly. It's also a good thing that my sister is here. She is filling me in on things. Example: "Shinedown sings that song. You know! With the [here she shakes her head and pounds her ears with her fists]." Very good.

7:57: If my name was Ram, my voice would be masculine.

8:00: Fergie and I are wearing the same thing right now. Weird!

8:03: Seth Green sighting! The tiny leprechaun is grooving.

8:05: A Boom Boom Pow, Smells Like Teen Spirit mash-up. Courtney is
going to kick.Fergie's.ass. Unless Fergie is dressed in shurikens like
Alicia Keys. Maybe that's what's holding her boobs up. Ouch. But kind
of awesome.

8:11: For real you guys, Keith Urban has awful hair. He must have Kramer's low-flow shower head. Dislike.

8:15: Oh, Beyonce, what's got you so busy on a Sunday night that you can't come to the AMAs? Gloss on your lips? A man on your hips?

8:17: Ooh. I'm huge a fan of Rihanna's boobie electrocution there. Kind of like if Tool were girls. Kind of.

8:19: I'm liking how the back-up dancers on this show are dressed as boxy things. Stereo speakers and aquarium heads so far. Or TV heads? Maybe TV heads. Whatever. People dressed as squares on a show where people are doing everything they can to not be squares… I dig it.

8:27: Carrie Underwood is wearing Carol Hannah's dress! With old-fashioned underpants. Or very short shorts. Her front looks like my back whenever I try to wear a skirt and tights. This is why I wear jeans.

8:30: Lady Gaga! Very blinky! Very pantyhosey! Very trilobite helmeted! 

8:32: Shhh. I think I can see her Spanx.

8:33: The piano is on fire! But on purpose. I saw the Butthole Surfers do that by accident once. Me:1, Lady Gaga: 0.

8:35: There is a bug on my TV and it's making it look like Lady Gaga is a married Indian woman.

8:37: Perez Hilton looks like a GIANT GROSS oompa loompa.

8:38: The haircut that Sarah Jessica Parker has in this movie coming out… it makes her look like a dude in drag. Not a pretty dude.

8:41: Mary J. Blige has opted against boobie electrocution. I approve.

8:43: My sister, who is not paying attention, just said, "Wow, Whitney Houston sounds a lot better now." We would all sound better if we were, in fact, Mary J. Blige.

8:47: I don't know who these people are, these breakout artist people. Gloriana? Loriana? There is a guy up on stage with a GIGANTIC head. Like if James Dean was allergic to peanuts.

8:50: I am going to take a page from J.Lo and every time I say "lovah!" (which is a lot, of course), I am going to give a big heave-ho with my hips.

8:51: Nice save there, with the falling on the ass but then getting back up and everything. I am endeared to J.Lo. now. I fall on my ass all the time, but not after jumping off of a hunky dancer's back. I will have to work on that part.

8:57: Whitney Houston is a international star, if by "international star" you mean "crazy ass train wreck I used to listen to on my boom box in the backseat of my parent's Buick while we were driving to Jacksonville for the GA-FL game."

9:01: It's a good thing "crack" doesn't rhyme with "I did not crumble".

9:03: At any minute Whitney's going to go into the Smells Like Teen Spirit mash-up.

9:04: Waiting.

9:05: I gotta give Whitney credit. She is sweaty up there, and giving the award a wank, but her sweat is very sparkly. She has Edward Cullen-ized sweating on stage. THAT is impressive.

9:11: Taylor Swift looks like Nicole Kidman, but after a giant squished Nicole Kidman's face from either side.

9:14: Alicia Keys is back! She has traded shuriken for tiny tiny lady balls.

9:16: Seriously. Tiny tiny lady balls. Like Truck Ballz, but tiny tiny.

9:19: Sorry. Truck Nutz.

9:20: Piano bench seat belt! In case Alicia pulls a J.Lo. Too bad the hunky dudes didn't have a seat belt.


9:27: I'm gonna blo** li** emini** sings o** tv. Lots of silen** spa**ses. Fiddy i** wor**. Somehow even the instrument solos are getting blipped. Who knew a percussive beat could spell out a curse word? Maybe it's morse code. I mean mor** c**.

9:30: Am I the only one finding all of these subliminal Project Runway references? First Alicia Keys Irina-esque outfit, then Carrie Underwood's rip off of Carol Hannah. And now Timbaland is auf-ing people. 

9:32: I like Timbaland's shiny pants. I hope they do not chafe.


9:38: Hey! Morena Baccarin! That's the haircut I want! Almost went crazy enough to get it, but instead I went a little less "severe". More hair, less lizard.

9:40: shoutout to Courtney for pointing out that Carrie Underwood was indeed wearing a Carol Hannah dress. Cool!

9:41: I am so bored by this Green Day song. Does this make me old and out of touch? Snore.

9:43: Green Day has made fire on stage boring. Unacceptable.

9:45: What is the giant safety pin for on Jay-z's lapel? Cloth Diapering Awareness seems like a strange cause for him. But maybe I am stereotyping.

9:51: Two guesses who wins artist of the year and your first guess doesn't count.

9:52: Finally, the Adam Lambert extravaganza is upon us. They've been plugging this thing all night. It's like a James Bond song. In a gay bar. FROM THE FUTURE.

9:55: In a minute the scaffolding is going to morph into a giant Transformers-style Grace Jones.

9:56: Some keyboard player just got its face eaten off by the Lambert. Yikes.

9:57: That shit will smear your eyeliner if you're not careful.

9:58: And it's over. Whew. That was super boring and kind of weird. Much like this liveblog.


And what a Friday it was…

blogging is writing
it should count for something, right?
no royalties, though

Today was a day. I blame it all on the blog post from Thursday, about how things were quiet and blah blah blah.

Ike-a-saurus had a weird thing this morning, where he kind of keeled over just before naptime. Like he fainted on the nurse's lap. No good. After a bit of oxygen, an extra breathing treatment, and a new trach, he seemed much better. But I am leery. And weary. After a flurry of phone calls, we didn't take him into the ER, but we did get a script for some Bactrim in case he has something weird brewing.

Then, the milk bank was out of milk. No good. They are so wonderful and fantastic over there, though, I just don't have enough super happy fun words to describe them. They have done SO MUCH for us, and have worked SO HARD to make sure Ike keeps getting breastmilk, it renders me nearly speechless. Today, even though they are pretty much out of milk for outpatients, they worked extra hard to have milk shipped to our doorstep tomorrow from a milk bank in California. Wonderful!

After that good news, I pressed my luck and called the Caremark pharmacy to see why the Synagis didn't show up yesterday (like it was scheduled). Synagis is the crazy monoclonal magic serum to help preemies avoid (or avoid a serious case of) RSV. Usually, you get this shot once every 28 days at the pulmonologist's office, but because we're under GERM LOCKDOWN, and because we have nurses at the house, we can get the synagis shot at home. If they deliver it. Which they weren't going to do, even though we had already called them and placed the order. No good part the third. So it was lucky I called to check on the delivery. "We don't have a record of that order" is something that will make a mama GO BATSHIT when she knows the order was placed weeks ago. There was a long pause and then "Will Monday be OK?" Yes. Monday will be fine.

Plus messages for the Cincy docs to see if they've seen the latest chest x-rays and growth charts and can give us a more specific date for our next trip up there. No call back yet.

Sometimes I wonder if we need an executive assistant around here to take care of all our day-to-day phone calls. Someone figure out how to get Medicaid to pay for a secretary to come to my house to take care of Medicaid. An ourobouros of bureaucracy. 

Now it is time for a snack. And a little whisper of thanks that tomorrow is Saturday and that the FedEx man will become a 21st century milkman. And that we didn't have to go to the ER. And that the Synagis is on its way.

Hey, Friday! Nice impersonation of Monday. If you do it again, though. I will kick your ass.

Just sitting here

baby on a train
aiming for the kitchen wall
a calm evening

Right now, I'm sitting at the kitchen table watching Ike-a-saurus chew on a toy drumstick. Best parent ever, I know. The wee-er one is wearing her bike helmet, my sparring gloves, no shirt and pj bottoms. The wee one is watching Star Trek (the new awesome movie) instead of doing his homework.

There is shit everywhere. But less than normal, which is weird, but OK.

I am sitting here my resting my damn foot that I dropped a damn jar of mayonnaise on two damn days ago, which not only still hurts, but has somehow created the mother of all bruises which has spread from my toes, up the side of my foot to under my ankle. It's like a bruise trying to be a Maori tattoo.

This was a good time to drop a mayo jar on my foot, though, because there is a lot of help around the house. My husband hasn't started his new job yet. Whew! When he starts, you guys, it is going to be CRAZY around here. He has a trip out of town coming up that's gonna last for approximately forever. We've been working frantically with the nursing agency to try to have day and night nursing for the entire time he's gone, but it's proving difficult because of the holiday season. Alas. I guess it will be a good boot camp, getting me back into the swing of being home "alone" (with Ike's nurse for 8 hours on most days, thank goodness) with the kids.

My foot and I are enjoying the calm before the storm. Well, I'm not so much enjoying the squished foot, but the calm is nice. Let's see if it lasts longer than the bruise.

August Thanksgiving

Look who's one today!
technically, already one
now we're official

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.


Dear Universe,

I'm sorry you make me call you an asshole all the time.

Today, you are not an asshole. Thanks for helping my husband get a great new job! I mean that, Universe, you did good.

I would say we owe you one, but actually, Universe, you owed US one. But I'm willing to let bygones be bygones (as long as we can work out a deal with this trach thing, too).

Let's still be friends,

I know you shouldn’t put any stock in those growth charts

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.

The clinic-ing and the trach-ing and the pigg-o-stat-ing and the eyelashes

trach clinic over
all day at the hospital
hands still smell like soap

Today was trach clinic. Once upon a time, we were told we had to go to once a month. But then, after the first time we went and found trach clinic to be pretty harrowing and ultimately useless, we stopped going. No big deal. We just make appointments with our various doctors and see them when we need them. This bucks the system in that we don't see everyone in one day – but improves the system in that we only see people when we need to, not on some arbitrary day.

Boring. I know. I'm getting to the fun part.

So today we went to trach clinic for the first time since April. It took about one million hours just like it did last time. But this time I didn't have to worry about pumping, and I remembered to bring food, and our nurse came along for the ride, so that made things much better.

We saw the pulmonologist, the ENT, the RT, the ST, the trach nurse, the dietitian, the case worker, the social worker, the x-ray guys, and Mary in the lab who is a bad ass.

It was a busy day.

Ike-a-saurus tolerated the first two thirds of the day very well. By the last third he had HAD IT. He totally hulked out in the Pigg-o-stat (look it up. I call it the Baby Can) and tried to climb off of the little bicycle seat, thus requiring me to hold his arms and another dude to hold his legs. It turned into an impromptu baby rack/iron maiden combo created out of clear plastic, a leather strap, two adults and an unwilling baby. For real. It was that fun.

But now we have chest x-rays to send to Cincinnati.

"Sending Chest X-Rays to Cincinnati" sounds like a Butthole Surfers song.

I digress.

Pigg-o-stat was unfun. But other potential unfunness was thwarted by a little heads-up our nurse gave us. "Psst," she said, without moving her mouth. "A nursing student wants to practice drawing blood on Ike. Maybe you want to go to the lab?" No words needed uttering. Just looks of gratitude and then several brisk strides to flee the scene.

I will take a moment here to say hello to any nursing students who may be reading this blog: Hello! I just want to let you know that I think your chosen profession is noble and selfless and it is something I could never do in a million years. While I was in the hospital, and the past few times Ike-a-saurus has been in the hospital, I have always agreed to let nursing students have a look at the trach, and ask questions, and practice taking vitals, etc. But after a long day of trach clinic today, we needed someone who was going to find a vein, get that vial of blood, and do it quickly, assuredly, and without any talking.

So no offense, nursing students. We have helped train many of you. But not today. Today was not a good day for that.

I digressed again, didn't I? Alas.

So we made it through clinic today, and now we're on the week-or-so  watch of "dammit, what kind of asshole germs did we pick up this time?"

And by "asshole germs" I don't mean germs of the asshole. I means germs that ARE assholes. Big difference. Though, to be honest, we don't want any of either one.

Lots of tangents in this post.

Hopefully, we did not inhale any critters while in trach clinic today. Hopefully, the folks in Cincy will see the chest X-Rays, fall in love, want to marry them, invite us to the wedding, and then announce over cake and champagne, that they will perform a laryngotracheoplasty with an anterior graft, free-of-charge, to the person who introduced them.

I'll let you know how that works out.

Until then, no more trach clinic until March, unless I just jinxed it. And if I did, then DAMN IT.

Oh, I forgot about the eyelashes part of the title. Yes. Eyelashes. Ike-a-saurus has very long eyelashes. Everyone thinks so. They also think it is unfair that boys get the long eyelashes. I am going to start carrying a flask with me, and every time anyone at any doctor's office mentions Ike's eyelashes, i am going to take a shot. Except this will require taking a taxi home, or asking our nurse to drive, which I think is against the rules. Not that taking shots at doctors' offices is part of the rules.

I'm really tired. That is probably evident.

Also today, we saw a flat bed tractor trailer hauling bundles of flaming paper. Actually flaming paper. I don't know what that means, other than it was kind of awesome and it offered a one-of-a-kind distraction from the still simmering trauma of the Pigg-o-stat.

I can't figure out how to end this post.