The Reflux

Whhhhhhy did you puke it?
Trrryyyy not to lose it.
Buuuuy drugs and use 'em.

The reflux is a ti-nee chi-ild, barfing in the daaaark

The reflux is ah-bove my shou-lder, hurling on my aaaarm

And wash-ing over for-ty tow-els isn't that bizaaaarre

Every little thing the reflux does

Leaves you covered with smelly yaaaarf.

Ow.

must fatten up legs
poses a big problem, though
cause then I'll eat them

Ike hits the big time
reaching new infant milestones
and the New York Times

Big Time news: Ike is in the New York Times!
(You will have to register, but it's free and it's a great article.)

Ron Lieber has a very touching article up about how people can help
their friends when Bad Shit Happens. Our part of the story talks of our
amazing community – all of you out there – reading, helping, praying,
knitting, sending out those vibes to the Universe, donating, thinking good
thoughts, making us good food… It's about how grateful and
overwhelmed we are for all of the money and support, even if we are
still processing everything.

Good job, you guys. You're all so amazing!

And in other Big Time news, we passed our first Not Freaking Out And Rushing To The ER milestone last night by performing an emergency trach change at 2:30 am.

I am not sure they make
a Hallmark card for that, but if they did, and it was online, it would be a screaming banshee one.

Last night was one of those nights. We narrowly escaped an ER trip when Ike-a-saurus started having trouble breathing. I had to pull out the O2 tank – something I've not had to do since he's been home from the hospital.

There was lots of back and forth on the phone with the pediatrician's office, lots of trial and error (is the machine working? Is the sensor working? Try it on your own thumb. Try it on his other foot. Change his position, count his respirations, etc.).

I just didn't understand why all of the sudden his o2 saturation level would go dangerously low while he'd been having such a good night. So I dragged out the effing heavy oxygen cylinder, hooked up the tube to an artificial nose thing, snapped the nose onto the trach and ta da! His o2 sat level shot up to 99 (from previously hovering around 84). That's when I knew (duh) something wasn't right.

Woke up my husband, started packing all of the fourteen million billion bags we need to go anywhere, especially the ER, and then we had a brain wave – why not change out the trach? They hammer this into you before you leave the hospital – always change the trach if suctioning doesn't help him breathe. Always change out the trach first if he's struggling. Always change out the trach. Always change out the trach.

So we did.

And his o2 went up to 95 with no oxygen. Whew! I guess there must have been some kind of mucus plug or other gross thing gumming up the works in there. Poor dude.

It's not so easy to be a mom and a nurse-ish-type-person at the same time. The mom part is yelling "Go to the ER!" but then the other side of the mom part yells, "Wait! There are GERMS at the ER!" then the nurse-ish-type-person parts says, "What can we logically fix here while remaining calm?" And the mom parts beat up the nurse part and there is riot in my brain worthy of Napoleonic models at a Tyra Banks audition.

ANYWAY.

We made it through the night by staying (relatively) calm, not running to the hospital to catch more MRSA and/or an Ebola varient, and by having a good game plan in place. Now it is another night, potentially full of other exciting thrills and chills, but hopefully tonight's thrills and chills will be related to the NYT article. I really, really want to be able to read the article, eat Little Debbie snack cakes, read my email, kiss Ike-a-saurus over and over and fall asleep with my computer on my lap.

That is my plan.

Don't mess with my plan, Universe.

Otherwise, I will send my mamas after you. And they will kick your ass so bad you will come crying back to me and I will ignore you. You will tap me on the shoulder and try to give me flowers and I will still ignore you. Then finally, Universe, FINALLY, you will apologize for ALL OF THIS SHIT and you will give me a margarita and a money tree and a healthy baby and clear skin and we will be almost even.

Almost.

O comforting boobs
yer squishiness delights us
and sustains us, too

Everyone in this whole damn family needs more boob time. For me, the wee one and the wee-er one, we need a cushy place to crash and cry and rest and lean up against. For my husband, well, I won't go into details. For Ike-a-saurus, he needs that milk.

Unfortunately, my pumping and his demand are not matching. Fortunately, we have a prescription for donor breast milk from our local milk bank. It's an incredible service and I am proud to have donated more than 200 ounces in just the few months Ike was home from the NICU. Now, though, we are on the other end of the milk continuum. Things change so fast, don't they?

We are still sorting things out with the insurance – will they pay for the donor milk? If they won't, it's $4.50 an ounce and that is a wee bit steep for us. But our doctor has written a letter stating that the milk is a medical necessity, so we'll see how it goes.

It's interesting, this breast milk vs. formula thing. I can't say that I am glad for the formula we have. I hate it. It smells bad. It feels like a comment on my boobs every time I have to mix it. But I love that it has the extra calories he needs. I love that I can put a teaspoon of it into 3 ounces of my breastmilk and he can get the best of both worlds.

Knowing that we may be able to get milk form the milk bank relaxes me so much. It takes some pressure off. Self-imposed pressure, sure, but still. I didn't even really know I was feeling it.

I am not sure why I have this breast milk hang-up. I know breast is best, but I am not against formula. I am not against anything that nourishes a baby. It doesn't matter, as long as the little one gets food, you know? I do not judge people who don't breastfeed or won't breastfeed or hate breastfeeding. SOmetimes it's just not your thing. I totally get that and I support it. Now if you're into starving babies for fun, then I have a problem.

It's weird that I feel guilty for wanting breastmilk for him so badly. Why can't I just relax, give him the milk I pump and then give him The Formula for the rest? Why do I even torture myself with pumping anyway? Why not just go 100% formula and forget the whole tedious, painful pumping thing? I don't know. But I can't do it. I can't.

I still make sure he latches on a couple of times a day, even if he's not getting much milk (we don't want him to because of the aspirating). I still cling to the idea that the trach will be gone sooner rather than later, he will remember how to suck and swallow correctly and we can get back to nursing all the time. Maybe I will be able to let this go one day. Maybe I won't need to. It's clearly an issue for me.

We had a trip to the pediatrician today and he had only gained an ounce this week, just like last week. We only have another week of that before we're going to have start giving him a feeding tube at night. Maybe a full week of thickened, fortified, breastmilk bottles will finally pack on some pounds for the little guy and we can continue to stave off the tube.

Or maybe I should say screw both those options and just start feeding him actual milkshakes.

In case you were wondering, when you have to feed your baby milk augmented by thickening slime, the thickening slime also augments other things.

I could probably sell his thickened poo as a) an alternative to Chinese-made drywall b) pothole filler c) material to stuff inside those bouncy floors that gymnasts use.

Also, I might need some dynamite up in here. This shit does not come off the changing table. It is worse than dried up grits. And if you don't know how hard it is to clean dried up grits off of things (namely floors, highchairs, eyeglasses) you do not embrace your Southern heritage.

Seriously.

When your baby's poop resembles a high dollar clay facial mask you know things are just.not.ordinary in your house.

It smells really bad, too. In case you were wondering. Probably the gymnasts won't like that.

barium breakfast
a side of radiation
and a wake-up call

Yesterday, Ike-a-saurus had a nice breakfast of barium for his swallow study. He had to fast for four hours before, so when I wrassled his slobbery fingers out of his mouth and popped in a bottle of green apple (wtf?) flavored barium, he was like, "Best breakfast EVEH."

You know how when you go in to the doctor, or you go in for some kind of medical test, and you tell them all about your ailment, going on and on, and then the doctor finds nothing wrong with you? The tests come back normal, or can't reproduce the problem? Well that did not happen with the swallow study, no sirree.

Good ol' Ike-a-saurus put on the full show.

He guzzled, aspirated a little, got tired fast, sucked wonky and then performed an admirable imitation of Mount Vesuvius. Out came the barium from his mouth, his nose, possibly even his ears. The look on the radiologist's face was priceless as he saw the mess all over the seat and the machine.

And I would like to point out, when a baby does that – spews forth like the Bellagio fountains – everyone in the room – doctor, speech therapist, radiologist, mom, dad – everyone goes, "WHOA!" and stands there, frozen momentarily.

We learned a lot from the swallow study. Obviously, his reflux is not under control. And we weren't even there to test for reflux. He is indeed aspirating when he eats, but only trace amounts. This is cumulative, though, and can settle in his lungs causing increased secretions and possibly pneumonia one day. He aspirated when he drank, but is actually at more of a risk from aspirating with the reflux, because it's so forceful.

So now we have a vat of slime to feed him (thanks, Christina!). We mix it with his bottle to thicken the milk to a "nectar" consistency. This is supposed to help prevent him from aspirating, with the added benefit of maybe helping with the reflux. We have instructions on how to feed him (sitting up, in quick burst intervals so he gets less tired), what to do when he's done (keep him upright for 45 minutes), etc.

We are pretty much forbidden from breastfeeding now, because my milk is obviously not thickened and it's easier to aspirate thin liquids. It could be dangerous for him. Really dangerous. However, if I pump first, keep an eye out for letdown, and keep him upright-ish, he can nurse for comfort. As soon as I feel like he's getting much milk, though, I'm supposed to pop him off. I really want to keep doing this, even if it seems crazy. The trach is the only reason he's aspirating, we think, so when the trach is out he can nurse again for real. I don't want him to forget how.

(I would like to note here that when he was exclusively breastfeeding, he never did the Vesuvius thing. He did it with bottles, but not with me. He was probably silently refluxing, though, so I should let that rest. Well, not probably, we know he was. The ENT saw evidence of it before the trach, before any of this.)

So. So. So. The study was a spectacular success, in that we saw everything we needed to. Now maybe we can help him eat more successfully. However, because of the impressive reflux, we have to take him for a GI study. If that study shows any physical problems, or anything weird, or shows that the reflux is just too severe, we'll have to do the G-tube.

He did so great yesterday, still smiling even though he was hungry, only vaguely grouchy when he had regurgitated barium smeared from one end of him to the other….  He was just hanging out, all, "What's up you guys? You would barf chalk, too, don't even front."

Yesterday was not easy, though. It was actually quite frantic, and the household was filled with gruffness and yelling and hurt feelings and miscommunication. We were tired and stressed out and not happy with science experiment feedings. Not a great day. But through it all, Ike was happy. And today, with a little bit of sleep and some Simply Thick slime, we are all in a better place (side note – doesn't Simply Thick sound like an Alan Thicke album of the early 80s?).

I wish I could say the calmer feeling is permanent, but I'll certainly take what I can get.

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.

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.

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.