Not a step back

we won't lose the bond
but I have lost my control
over the last thing

I am not calling it weaning. I will not wean him. I am not weaning him. We are not weaning.

The more I say it, the more panicky I feel, because we are on the road to weaning and it is not the road I want to be on. Not at all. With everything that has been happening with Ike-a-saurus, my struggle to get him to breastfeed again was the one thing I felt like I could control. I am taking domperidone and my milk supply is increasing everyday. Of course, having a baby that nurses pretty much 23 out of 24 hours a day helps with my supply, too.

So, the milk is pretty much back, the baby is nursing, things seems OK, right?

Not so much.

In the past 8 days, he has only gained 1 ounce. Before the hospital, he was nursing exclusively and gaining about an ounce a DAY. This has our doctor worried, and our doctor is not the kind of guy who worries – or lets on when he's worried. So for him to be bothered by this, I know it's a big deal. He's also bothered that I am not getting much sleep, and told me, half-way jokingly, that me not going insane is just as high a priority as Ike gaining weight.

And Ike is not gaining weight. We don't know why. He's pooping and eating constantly, but he's not emptying the newly full boobs. The theory is that he's trying, he's trying really hard, but it's making him too tired and causing him to burn more calories than he's receiving. This was a common point of discussion when Ike-a-saurus was tiny in the NICU, but lately we thought this was an ancient history thing – nothing to worry about anymore.

Obviously, the number one goal right now is to fatten him up. He needs to get big and get big fast, regardless of how it happens. The bigger he gets the sooner he gets the trach out. At least this is
what we all hope. We'll know more when he has the next bronchoscopy.

So what do we do? Mainline Karo syrup? Slather his fingers with Nutella? Coat his pacifier with Cheez Whiz? Maybe just fortify his milk to 24 calories by adding formula to it. Maybe just give him the Neosure outright. No supplemental nursing system because we're worried the nursing is too much for him. We'll revisit that idea in a few weeks, though good grief the SNS is messy and ridiculous.

The crux of the thing – the blow to my sanity, my comfort, my ego is that I've been asked to do no more direct breastfeeding. Well, not like we're used to. It's OK to nurse a little for comfort, and even a little for sustenance, but all of his feedings need to be bottles, with the boob as a supplement. I can keep pumping, and fortify the pumped milk. We can give him the super stinky Neosure. Hopefully he will pack on the pounds.

I know this is not an end of the world thing. But of all my babies, this little guy needs the antibodies and mysterious goodness of my milk the most. And he's the one it's not working for. I can't help but feel there's something I could do better or differently, even though I know it's not me. It's not him. It's our fucked up situation.

He'll keep getting my milk, fresh from the tap, as long as I can do it. Into bottles it will go, into the freezer, into the fridge. Then we'll mix it with enough formula to create the right brew of antibodies and calories, and hopefully, as he grows, we can nurse more and more. I have to be prepared, though, for that to not happen. I have to be OK if he weans completely. I don't know if I can be OK with that, but at least I can try to prepare for it.

But I need to not worry about that. Must focus on making him fat using any means possible. Must remove all guilt and sadness and silly regret from the equation.

Must teach him to eat chicken fried steak and sour cream mashed potatoes.

Must get on that.

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in case you were wondering

marble in PC
forced into DVD slot
causes much trouble

In a brief moment of foreshadowing a few weeks ago, (or frosadowing as I originally typed because I can't type anymore), after many thwarted attempts to get the Wii working, I plucked a small cardstock-ish piece of paper from the Wii disk drive. It was a game piece from a Sonic kids' meal. Hmmm. Luckily, once the paper was removed the Wii was back to normal. Whew!

In a "hindsight is 20-20" moment, I should have remembered this quaint moment of problem-solving when, two days ago, the family computer completely crapped out.

Having a crapped out family computer does not make it very easy to, oh, search for a job, or access insurance information. Sure, both of these things can be accomplished on your wife's laptop, but there is a lot of ensuing "grouchiness" and not a lot of "sharing."

So.

Today was the day my husband hunkered down to figure out what the hell is wrong with the computer. Much cursing. Much muttering. Much irritated shouting of "BITE ME" to the HP voice prompts on the customer service phone line.

After hours of This Is Not Cool! and What The Fuck Is Wrong With This Thing! the DVD drive spontaneously popped open. Inside was one light green marble.

A marble that had apparently been making its way through the guts of the computer Mousetrap-style, banging into components and bouncing on the hard drive.

In a shocking turn of events, unknown to the Haiku of the Day household, instead of the computer being completely toast after having eaten all of our personal documents – it is still under warranty! A new hard drive is on its way to the house! The info on the old hard drive is supposedly backed up to the gigantor external hard drive, so that nothing is technically lost!

What?

We'll see about that, but still. The marble did not beat us. It did not.

Do you hear me, Light Green Marble? WE ARE NOT BEATEN.

SUCK IT, LIGHT GREEN MARBLE. Ha HA.

This, I like

The wee-er one just came up to me and said, “I love you too much.”

I rewarded her with a kiss on the head.

Then she hugged me hard and said, “I love you waaaaaay high.”

I like that very much.

I love her way high, too. I love them all way high.

Even when contiunous all-night neck hole suctioning is required, and even when they force me to watch Alvin and the Chipmunks all day.

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.