Maddie Status Check @ 26.5 Months

I don't think there is a narrative to this one; just want to brain dump a bit (maybe I'll edit before posting. Maybe not.)


The Good

When nothing bothering her, she's a very happy little baby.

Babbling lots!

Reaching for things... wants to crawl...

Good at hand (fine-motor) control.

Still no real reason to think this is permanent.**

Switched to a new formula that seems to be making her much less uncomfortable.

Rigged a "cold bag" such that we don't have to refill her formula in the middle of the night... just have to get up 3-10 times to deal with bubbles.


The Bad

Still no talking, no crawling, no sitting unassisted.

Not taking any food or drink by mouth.

24 months of crying... really wears on you. She has 2 in particular that really get me:

• Nnnnnnngggg nnnnnnggggg (sounds like she is yelling with no tongue... like nails on a chalkboard)
• Huh uh huh uh huh uh huh (this machine-gun like "I'm unhappy" thing that she can do -- literally -- for hours straight. Gasp inhale, sharp whiny exhale. Repeat x1000.)

Likes to choke while traveling in the car. Always fun.

Still not taking good naps... no sleep schedule...

The new formula is thick, so we can't "run open loop" like we used to. More work dealing with bubbles this way.

Still can't seem to handle bolus feeds, currently... so we're on the pump ~20 hours/day doing continuous drips. Makes it hard to leave the house.


The $*#@!$$#

Still retching about 3 times a day... big ones too -- face turns red, sometimes gets tiny burst capillaries on her face, etc.

The retches seem to be caused by one of two things:

• Bile; after most (but not all) retches we see yellow fluid in her g-tube... seems like whenever a bit of bile hits her tummy she feels nauseous and loses it. 
• Gas; still fighting gas all the time, and when it builds up she just can't seem to burp, and eventually loses it. Or when on her back, the gas pushes fluid up into her throat and she chokes and loses it. 

At 26 months, she seems to have the development of a 10-month old. We've been seeing signs of talking, crawling, sitting for ~6 months, but progress is glacial.

Haven't shared a bedroom with the wife in well over a year now. Thatskindafuckedupisntit?

** this one is screwed up in its own right though; we still have no real diagnosis for any of this. Just symptoms.

Nachos are Magic

Had an epiphany over breakfast (yes, this was my breakfast today):

Nachos have a magical power.

Here's what I mean.

Take a couple of big handfuls of cheese... I mean more than you would possibly in a hundred years think of taking out of the bag and just eating... an amount that would certainly make you feel sick to your stomach... and add that cheese to your chips, chili, and peppers. Melt it.

Abracadabra!

It has suddenly become a perfectly reasonable amount of cheese to consume.

Delicious magic, I tell you.

Maddie Status Check

I want to write a quick note on Maddie's medical progress/status as she approaches her second birthday.

Wow, to be honest it feels weird to even say that... kind of like how using the word "wife" sounds funny for a while, and later when you have to get used to the idea that you're actually a "daddy". For some reason it's hard to think of Maddie having a birthday, since she's sort of stuck in time...

Why post this?

Three reasons, I think.

1. Get it out of my head... clear the air. (And there is plenty of air in my head lately.)
2. For us to look back at a year or three from now, to remember what things were like behind the scenes... and also hopefully see just how far we will have come.
3. One in a million shot someone else dealing with similar issues reads this and feels less alone.

Quick Status

So as she approaches two years old, we do continue to see progress; albeit at a snail's pace. We just can't seem to get the weight on, though the last week or so has been promising. She is developing though; making more babbling sounds these days, and her face is definitely less infant-like. She's stronger too and wants to move around, which is great but also makes her hard to hold... 

Unfortunately she still needs to be tended 24/7... can't set her down on the ground for more than a few seconds, or she'll retch. Can't sit up yet, so she has to be held pretty much constantly. We just spend most of the day sitting on a pad on the ground with Maddie sitting between our legs, handing her one toy after another.  Hasn't said her first word yet, which is one of the hardest things... if we just had some real communication I think everything else would be a bit easier to handle. No crawling yet; can't really hold herself up on 4-point, though when she stands (with help) she seems really proud!

She's very interested in tasting things at the table these days, but can't eat anything... so we're still just  trying to push food in the g-tube every hour of the day and night. Stomach gas continues to be more challenging than you could believe -- if she was just not 25x as bubbly as most babies, or if she could just learn to burp I feel like we'd be on easy street by comparison... 

We're still with the CDSA program until she's 3; after that we have to transition to the school system for support, so just starting to figure all of that out. Might end up getting into CAP/C or Developmental Services. A bit nervous about all that, actually.

Our Schedule

So for the time being, we're stuck in a mode of tag-team parenting of Maddie at all times... one holds her, the other can get some work done or can play with Sydney. Tolerable, though it makes it very hard to actually get anything done -- no real time for focus, unless I force an hour or two and then take Maddie for the rest of the day...

Still splitting night shifts, so we live basically a 48-hour schedule.

Up at 6am after a night's sleep. Make formula, do chores, and wait for Sydney to wake up. Maddie starts her eating schedule at 8am... Melissa gets up after a 3 hour nap and by 10:30 we're through everyone's staggered morning routines and perhaps we can start doing something productive. 

Tag-team through the day, around her therapies (M-F, 6 times per week, currently). Maddie goes down sometime between 7pm and 11pm, and it's my turn to tend her through the night... a good night has you up 3-4 times, and a bad night you just get naps.... 6am is shift change, and I get to settle in for my own 3 hour nap. 

Rinse, Repeat.

Maybe there is a better schedule, but we haven't figured it out yet. Suggestions are welcome!

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Addicted to Money (NY Times article by Sam Polk)

I'll admit it -- from time to time I've read about the million$ that young kids are making on Wall Street and I've felt jealousy. I could have done that, I say to myself... and I'd be stinking rich by now.

Somehow it never occurred to me as a career path. After reading this article by Sam Polk I'm happy I didn't try to go down that road.

http://www.nytimes.com/2014/01/19/opinion/sunday/for-the-love-of-money.html?_r=0

I hope that link works for you (with the Times' paywall) because it's a really great read. Here's one of the money quotes:

From that moment on, I started to see Wall Street with new eyes. I noticed the vitriol that traders directed at the government for limiting bonuses after the crash. I heard the fury in their voices at the mention of higher taxes. These traders despised anything or anyone that threatened their bonuses. Ever see what a drug addict is like when he’s used up his junk? He’ll do anything — walk 20 miles in the snow, rob a grandma — to get a fix. Wall Street was like that. 

It somehow never occurred to me before that money could be that addicting -- but of course it makes so many things that rich and powerful people do make more sense, once you really absorb the idea.

In any case, thanks to Sam for giving me an eye-opening look at what it's like in that world... no doubt in my mind that Wall Street would have been a toxic environment for me. No regrets anymore about avoiding that career.

Quicky: LegalZoom Cares More About $8 than a Customer

TL;DR: LegalZoom sucks.

Slightly longer version: I used them about 6 weeks ago to set up a LLC. At the time there was some wording about "wow you also get a free trial of lame-service-you-don't-want!"

There was no way to opt out of said free trial.

I did get an email 2/3 of the way through the free trial reminding me that I had only 10 days left to enjoy these *cough* benefits... but not a word about "you will automatically be billed if you don't pick up the phone, call us (there is no way to cancel via their website, even if you try), and listen to our rep reading a script designed to make you feel silly about canceling".

Since I never agreed to automatic billing, I went about my business. Lo and behold -- without a single additional email making clear what was going on -- my credit card was recently billed for $7.99.

Now, $8 is not a Big Deal, but I'm loathe to pay for things I didn't want, didn't request, and didn't give someone explicit permission to bill my credit card for.

So I called the 800 number that was provided (again, you can't cancel via the website, only buy).

While the rep was courteous, they made it clear that company policy was that there are never any refunds for "services" like this that were added (a) without my option, (b) without my desire, and (c) without my using said service during the period I'm being charged $8 for. Even if it makes the difference between a satisfied customer and one that feels taken advantage of.

Let me clarify: LegalZoom would rather have my $8 than have a customer who feels they were treated fairly.

Now... given that these cats are lawyers, I have zero doubt that what they did here was 100% legal.

But it also sucks big hairy moose dick. And it's no way to run a business.

So if I ever have the opportunity to recommend a legal service, it will not be LegalZoom.

Shit; they're treating their customers as bas as cable companies or cell carriers, but without the lock-in effects those other companies have... it's almost like they *want* to fail.

Let's help them fail.

New year, new blog, new experiments...

I'm a huge fan of Monthly Experiments.

Try on a habit for one month, like you are taking a new outfit for a thorough test-wear... try it on, live with it for long enough to understand how it fits (or doesn't) into what you want your life to be.

At the end of the month, decide whether to keep the new habit, tweak it, or let it go. With just a little experiment every month you can create an entirely new life by the end of the year. Groovy.

For January 2014 my experiment is "write every day", and I've decided to start a new blog over at ItsAlwaysMorning.com to think out loud about living more intentionally.


Here's my current writing plan:

• Personal growth experiments, inspirational ideas I come across, experiments in work-life balance, and projects I undertake (including thinking about a lifestyle business) will live at ItsAlwaysMorning.com

• Everything I learn about startups as I try to help build Coursefork (my friend Brian's company) will be shared at SteveReaser.com.

• Personal bits and pieces that don't fit into one of those broad themes will continue to land here, as I need to get them out of my head.

So yeah, this is a bit messy, but let's give it a go and see where it takes me!

Sometimes the Little Things Are Huge

I got to thinking last night -- virtually all of the challenges we have faced with Maddie over the last 19 months boil down to the simple fact that she is gassy. Really gassy. Not "oh yeah, my baby was bubbly too... had to make sure to burp her twice after every feeding" gassy... I  mean something-is-fundamentally-not-working-in-her-GI-tract gassy.

And in a way, the fact that it is such a simple, basic thing makes it all the more frustrating.

(aside: I don't really intend for this blog to be all about Maddie's issues; I have other fun stuff to write about, actually -- but might as well make it three in a row and then hopefully back to more interesting stuff.)

Gassy from Day One

Even back to the beginning, when we were trying to breastfeed, gas was probably the biggest problem. Yes Maddie had some trouble taking food in, but she was determined and generally took enough in. But then the gas would hit, and she'd lose it all... she was never good at burping (that continues to today) but mostly I think it was the sheer quantity of gas in her tummy that made keeping food down nearly impossible.

At age two-months we gave up on breastfeeding, and used a NG-tube plus bottle to get the formula down. Tried a few different formulas; never found one that seemed truly easy on her stomach. Several months of this... constantly feeding, then holding her ever so carefully hoping to avoid any jiggle that might cause her to lose it all; and generally failing.

Throwing up everything she ate... all because of gas.

G-Tube + Fundoplication 

She was seven months old when we had to make the call to go with surgery. Everything in us wanted to avoid this step; if she could just get over this hump, we felt, then better to press on through and avoid permanently altering the geometry of her insides.

But sometimes toughing it out just doesn't cut it.

The fundoplication surgery essentially makes her incapable of throwing up. It also might make it harder to burp; which we're still paying for today. The G-tube allowed us to push more formula in than we were able to get her to take by mouth, and with less swallowing of air. This sounded like it should do the trick, then, but instead what we ended up with was a pressure cooker inside her tummy.

We use a pump to push formula into her tummy... in theory you can do this all day long, and just tend to her a bit (change the bag, vent the stomach) every few hours. But in our case, venting was basically a constant thing... every 5-10 minutes at times -- sometimes things built up such that we had to turn the pump off and spend an hour venting, holding, and rocking to try to get all the gas out before resuming feeding.

~20 hours per day trying to feed, and several bad retches per day; all because of gas.

Gas Bloat Syndrome, they now say; which literally means "Wow, this is one gassy baby... and now it's harder for the pressure to escape. Hmm that ain't good. Sorry about that!"

GJ Tube... Well, it Was Worth a Try!

The weight gain continued to elude us; she was getting about 600 calories/day rather than the 800 she needed, and it showed.

Another surgical procedure, and now she essentially had an input tube and an output tube... the way they described the venting port was "and in the unlikely case that she has a bubble, you can vent it". So of corse in practice, we had to keep her vented 24-7, even though we weren't putting anything at all into her tummy.

Much of the gas ended up shifted lower, leading to hour-long inconsolable screaming fits a couple of times per night. Still, it got her the calories she needed, and we would have stuck it out with the GJ if she hadn't suddenly developed a complete intolerance to the tube in her jejunum.

Our best guess is that the gas in her intestine started pushing bile back up into her tummy, causing retches about every hour.

Lots of pain and lost sleep for everyone including Maddie, and again, all because of the gas.

Back to G, Blenderizing

So we went home, and got to play home surgeon -- took the GJ-tube out and popped in a G-tube again. We're back to a single port to push in food and get out gas... but we're determined to get her the calories she needs if at all possible. (There is a surgical plan B, but let's not go there.)

We're trying to move away from formula, since she doesn't seem to be able to really tolerate it. Experimenting with different blends of food during the day -- and still feeding formula all night -- it's all trial and error because nobody really has any answers on this stuff.

In brief, it seems like this is going to work, but we have a lot more to figure out and a long slog any way you cut it... this would all be so much easier if it weren't for that one thing.

Such a Simple Thing -- Just Gas?

It sounds so innocuous. Just some gas; how big of a deal can that be? Right:

• Net net: 19 months old; development of a ~9 month old.
• She can't really handle being on her back. Which means you can't set her down like any other baby... have to hold her pretty much all day.
• When you do put her down for a nap, within minutes she'll start coughing. Not a little "tickle in my throat" cough mind you; but a red-faced-trying-to-hack-up-a-lung cough that she can't recover from without help.
• Working nearly 24-hours a day to get food in her and keep it inside... yep, night shifts.
• When we do stop for a couple of hours, for PT for example to see friends, that cuts into her calories for the day.
• Hasn't learned to crawl; in part because she can't tolerate tummy time (and is contending with a vent tube, as well). Even sitting seems to upset her stomach.
• Any time you put her in a chair, get her up, etc you have to deal with the tube. Tape things in place, make sure she can't get at them, etc... "tucking her in" means tucking in the tubes.
• Inconsolable screaming fits; still hasn't spoken her first word so she can't tell us what she needs.
• Still retches ~ once per day... poor little girl.

And really, this all stems from the gas problem.

Now the point of this isn't "oh, poor us". It does feel good to write this out... but the thought I started with is the main point that I wanted to end with:

It's such a simple thing... tummy gas. Most people just burp it out without thinking; it's just amazing even to me that such a simple thing could cascade into so many serious and life-changing results.

We're in a little domino-effect loop... and it's all because of the gas.