The post in which I describe my life as it would be written by Stephanie Meyer

I woke up this morning to the sound of gentle rain. How can it be raining again?

Padding downstairs, I discovered a stunning surprise. I was alone. But wait. There was a presence. I could feel the electric energy permeating the well-lit space of the kitchen. Cluttered countertops could not distract me from the feeling that two circles of fierce amber were boring into me as if we were the only two things in the world.

I turned. The air crackled.

"You should not be with me," the voice was low, magical, meltingly musical.

Was I imagining it, or did I hear it for real?

"I must leave you at once," the voice continued. I was pulled into the ravishing handsomeness of sound.

"I don't know what you mean," I answered, barely above a whisper. Suddenly, I slipped on an ill-placed piece of buttered toast. Arms appeared out of nowhere to clean up the toast with Fantastic and a Mr. Clean Magic Eraser.

I lay on the floor, mesmerized.

"Who are you talking to," my husband asked skeptically, wiping crumbs from my feet and putting away the cleaning supplies.

"Huh?" My mind was a dizzying array of desire and pain.

"Why don't you sit at the table for a minute?" My husband helped me up. "Here. Eat your pancakes." He put the plate down on the table in front of me and then backed slowly out of the kitchen, watching me for further signs of insanity.

"It is just us again," the underwear model voice began. "I tried to resist you but cannot. That fool with his magic eraser made me long for you even more."

Peering through the curtain of my hair, I was able to distance myself from the voice, gain some distance from my desire, steady my shaking hands.

"I don't want you to resist me," I whispered. "I don't want to resist you either."

"There are things about me you don't understand." The bass in the voice reflected beautifully off the linoleum.

"I don't care about any of that."

"Then you must take me now." The voice was low, almost purring. "Take me now before I get colder."

"Done and done," I answered, sinking my teeth into soft, warm folds.

"We cannot be discovered." It was the last thing the voice said. The melodious, movie star voice.

"We won't be." I murmured, mouth full. "You'll be gone before anyone finds out."

"Why are you talking to your pancakes?" My husband peered worriedly into the kitchen. "Why does your face look like that?"

"Why does your face look like… your face?" I retorted, wiping the last of the syrup off my plate. The most gorgeous syrup anyone had ever tasted.

"When you're done talking to your breakfast, there's a trach baby in here that needs some new polymem."

I blushed. Beautiful, ravishing polymem. You're next on my list… 

Free pass to freak out

a trach baby plus
freaking out needs no excuse
and it's expected!

Even before the trach, I spent all of a lot of my time freaking out over the kids. Does he seem warm? Does she look spotty? Is that a runny nose? Who's stomach hurts? This is sort of my MO as a mom.

So you'd think that after being faced with my Ultimate Fear, I'd have learned to be a little more easy going about the minor things. And yet… I think, if anything, I'm worse about it.

At least in the hospital I didn't have to worry about how fast Ike-a-saurus was breathing because there were monitors and nurses to either prove I was crazy or to fix the problem. But now, I am free to just go nuts staring at him. Not that I want to be back in the hospital, but I would like the ability to not constantly worry.

I'm sure this is something every mom would like – a worry vacation – and maybe that is what anti-anxiety drugs are for. Ha. Maybe I need to look into that.

Last night and this morning have been the first real tests since we've home. Ike-a-saurus is coughing a lot and not clearing anything out when he does it. So we suction the trach, but it doesn't help much. This morning we even did an "emergency" trach change. That didn't help much, either. I'm afraid that at only 5 days home from the hospital I'm going to have to take him to the after hours clinic tonight. That kind of track record doesn't fill me with confidence.

But maybe a good dose of albuterol is all he needs. We are also fiddling with the settings on the equipment to see if that helps. It's scary and exhausting. The kids are worried that he's sick again. So am I.

I am starting to understand why the hospital wanted us to have 12-hour nursing care for the first few weeks. It seemed ridiculous at the time. It still kind of does. But I can see the benefits now. Not exactly a worry vacation, but maybe a worry mini-break. We could all use one of those.

The nurses are coming

can't stop the damn dreams
brain's working hard to process
wish it would hurry

The dreams started in the hospital. Accidentally driving off cliffs, having a trach implanted in my leg, panic about being trapped in a hospital, me being a patient again…. For someone who doesn't get much sleep, I have enough dreams for the whole city.

Last night I dreamed I was compelled to walk into a dirty ocean (to show the kids it would be fun), but towering – and I mean towering – waves kept me above the trash. As soon as I started to fall, another wave would catch me and bring me higher into the sky until the people on the beach were barely visible. It was exhilarating and so scary. I knew that falling was inevitable. Then, I was in an old velvety, musty room, crowded with crap and people from high school and a tower of voice recording equipment. The equipment caught on fire. My fire extinguisher didn't work until I made it work by sheer force of will. Then I was out on a walkway at an elementary school and a toothless woman with a toothless dog was giving me advice I didn't want and don't remember.

I am afraid this blog is going to start being a record of my quick descent into full blown nutjobbery.

Maybe, though, as things settle down, the dreams will too.

Tonight, the wee one is in a play at school. Chicken Lickin. Our first home health nursing visit coincides with the play, so if we are comfortable with the situation we can leave Ike-a-saurus at home with the nurse while we all go up to school. I don't know.

This whole home health care thing is kind of weird. I like the idea of a nurse being here to kind of spot us while we're getting used to the equipment and everything, but it's strange to think that someone we don't really know will be in the house with us everyday for four hours. As a hermit, this is something I will have to get used to.

The doctors at the hospital want us to have someone here for 12 hours a day, but the insurance only pays for four hours. I might be naive, but I think that's enough. We can cluster some of his specific needs for when she's here. Though I am starting to see how a night nurse would be helpful. Suctioning a trach every 30 minutes all night long, plus breastfeeding does not allow for much sleep.

Damn. I just remembered he hasn't had his Prevacid today. And we know that elixir of unicorn tears and golden monkey butts is not to be wasted. I guess a nurse will help me remember those things.

After the elixir of unicorn tears and golden mokey butts is administered, I need to fill out my author questionairre for my publicist at Random House.

Has my life taken a turn for the surreal or what? I don't even need those fucking dreams. Things are weird enough as is.

Calling all makers…

a construction zone
building us a new normal
with noise and plastic

The equipment is here, the supplies are on their way. Thankfully, the nurses at the hospital helped us stockpile a bunch of stuff to help cut costs. It's all tucked stealthily away in the closet under the stairs; the Harry Potters of suction catheters and artificial noses.

We are trying to get organized, but we can barely hear each other over the noise of the air compressor for the trach collar. That's nothing compared to the suction pump, though. The suction pump is so loud, I expect to see plumes of black smoke rise from its coal-powered steam engine as it putters off the table on its way to Promontory Point.

For real.

Imagining the suction pump chugging off to Utah makes me wish I had some maker skills. Can you imagine how BAD ASS a steampunk trach care set would be? Steampunk air compressor and humidifier? Steampunk suction pump? Steampunk emergency oxygen? Someone could even turn the ambu bag into an airship. Aaaaawesome.

Just think. If Mal had a trach on Firefly, what would the accutrements look like? Serious bad assery, folks.

Even the tubing on the trach collar lends itself to a certain steampunk sensibility. Kind of Karl Kroenen Hellboy-esque (except he didn't actually have any tubing, so I guess kind of not).

Anyway.

The stuff is here. It's weird to be home from the hospital and still have all this equipment, but at least we're familiar with how it works for the most part. We are all going to go deaf and I am going to turn into officially the nerdiest mom of a trach baby ever, but, really, neither one of those things are a surprise at all.

Anyone know how to brass-i-fy an air compressor? How cool would it look if you lifted the outer casing and inside there were all of these shiny gears and parts and buffed mahogany doodads running the machine? And maybe a real steam engine on the suction pump would make it quieter. Though I hazard a guess it would be considerably less child-friendly.

One day the wee one will be old enough to do this. I can say, "Wee one! Steampunk this breast pump for me!" And he will roll his eyes, write a mental note for his upcoming memoir about what a nutjob mom he has, and get to work. Of course by then I won't need a breast pump, or hopefully a house full of air compressors and suction devices, but a girl can dream can't she?

Sure she can.

Homecoming haiku

Buckled into seat
Riding home on a sunbeam?
Cam’ra so hopeful

Don’t tell insurance
No coverage for sunbeams
Only pay for rain

Next stop the sofa
Amenities included
Free entertainment

An analog guage
Meaures how much to suck it
You’re next, universeHomecoming haiku

We’re going home!

My amazing husband stayed calm and professional and totally side-stepped case management. All day on the phone and he did it.

We have the equipment. We have the training. We have the sleepy baby. We are almost out the door. And we didn't have to do it AMA.

How many days has it been? 25?
And this party is just starting.

Still no solution to the problem. Still no answers for the months ahead. But for now, we're going home.

We'll be back in two weeks for another bronchoscopy. But for now we're going home.

Home.

Home!

Today is a Xanax day

Except I don’t have any Xanax.

We have been cleared for release from the hospital. Yay, right?

Well, thanks to the collective bumbling of the case management team, we don’t have the equipment we need to go home. Specifically, we don’t have a suction pump. I find it exceedingly fitting that a thing that LITERALLY SUCKS is causing such a fucking nightmare today.

We may not be able to leave until Wednesday now. It is inconceivable that the insurance would rather pay $4000+ a night rather than expedite us getting a $500 suction pump. But I am through trying to be rational.

Thank the tiny baby Jesus with his tiny balled up fists that I married a rational man. He is politely getting after people. I am impolitely writing lists in my head of people to kick in the ear.

Boooo. Boooo. We are being held hostage by idiots and a true manifestation of suck.

Thanks

I was up here at the hospital and not able to get down there, but my spies tell me that the Ike-a-saurus Rummage Sale was a hit yesterday.

I know I keep going on and on about it all, but really – we are just so lucky to have a community lift us up like this. We are just incredibly fortunate for the generosity and love and support we have. We've had it since before Ike was born, and the more I worry about fatiguing everyone with our string of crises, the more everyone outdoes themselves to help us out. It is truly phenomenal.

Thank-you, thank-you, thank-you.

Ike says, thank-you, too.

IMG_0999

P.S. There is a rumor around here we may get to go home tomorrow! Fingers crossed that the medical supply company has everything we need despite the machinations of the Case Manager Who Deserves A Punch In The Nose. Otherwise, we may be kickin' old school in the Respiratory Penthouse for a few more days.

What does Ike say about that?

IMG_0012
Sorry I farted in your purse, Case Manager Who Deserves a Punch In The Nose. I hope that doesn't prejudice you in any way.

spaghetti noodle boobie tubes

I don't smell that great
am covered in stinky milk
good problem to have

The doctors here on the regular floor are obsessed with Ike-a-saurus getting fortified breastmilk. Because he was a preemie they want him to have extra calories. And, initially, instead of listening to me, they were filling his belly with formula-fortified expressed breastmilk, via gavage through his nose, all night long. They wanted me to give him bottles at night, even after I explained he is not so much a fan of bottles, even less a fan of the gnarly Neosure formula they're fortifying the ebm with, and even less of a fan of being woken up and force fed. So when he refused the bottles – like I knew he would, everyone freaked and put the tube back down his nose. Actually, I got to drop the tube, in case he has to come home with it.

Ever done that? Ever snaked a tube down your infant's nose and into his stomach? Not fun.

So last night I said no tube. I asked them to give me a chance to breastfeed at night like we do at home. They could measure his weight in the morning and see if there was any big deal. They said OK to the no tube, but they still wanted me to do the fortified bottles despite my protests.

Well, we tried. A kick ass nurse got us a bed to share, so that helped with the breastfeeding, but because of doctor's orders (so many different doctors with different orders here – ugh), the night nurse had to wake us up every two and a half hours so that I could try to get my sleeping infant to take a bottle of fortified milk. Milk that he hates even when awake and starving. That was fun. And – surprise – he lost a little bit of weight. Maybe because after being constantly woken up he was too tired to eat. Sigh.

I also tried a supplemental nursing system, which was hilarious and messy and worked fairly well – but I tested it with non-fortified pumped milk because I didn't want him to suddenly start associating the yucky milk with my boobs. That would cause a whole new world of terrible.

They are going to make us bring him home with the NG tube I think. And that makes me crazy. This whole milk fortifying thing doesn't even have anything to do with the trach, it's just because he was a preemie. We've been going through this since the NICU – where they gave him my hindmilk instead of fortified milk because he tolerated it better.He has always followed his own curve with his weight gain – a curve that has pleased his pediatrician and never caused a problem. I would also like to ntoe that even though he has lost negligible amounts of weight pver the past three nights, he still WEIGHS MORE than he did when he came to the hospital. So there's that.

I could go on and on ranting and raving about this, but the more worked up I get, the sillier I feel. This is a problem I want to have. This is a problem I would have climbed mountains for 22 days ago when he was sedated and paralyzed in the ICU, with an extremely critical airway and plummeting vital signs.

This is a good problem to have. It is a welcome problem. I still want to punch some people in the face, but that's OK. I think for the next, well, forever, I might have some short-tempered anger issues to go along with my PTSD and anxiety. I will worry about that all later. Right now I need to worry about filling a tiny belly with as much mommy milk as it can take. I also have to worry about making enough milk to do that. (The domperidone seems to be helping, by the way.)

Having well-meaning doctors turn every night into an Amazing Race eating challenge for Ike-a-saurus is my main worry, though. Gonna have to get them to stop that. Otherwise I might jump on the them, put a trach in their throats, force feed them Neosure and see how much THEY like it.

This time last year

Last year on this day, at about this time, I was on the phone with my best friend FREAKING OUT.

On my lap was a little white stick with two pink lines.

Surprise!

What a year it's been! I knew a pregnancy was going to shake things up but wow.

And even with everything that's happened… it's been a great year. Really.

The wee one has a little brother to make the butt of his fart jokes, the wee-er one has learned how to be a great big sister, my husband and I have learned so many things I can't even list them here.

It all started on this day last year.

Three kids. It still shocks me.

But in a good way.