Sunday, November 24, 2013

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.

Saturday, September 28, 2013

Sept 25 -- A Whole New Chapter for Madison

Feels like a brand new day!
While it's only been three days since the procedure, I think we will look back at September 25th as the inflection point when things finally started to really get better for Maddie. And by extension for all of us. 

Since then, she's had several retches (usually when trying to lay on her back with anything in her stomach). She tries to throw up but can't, and unfortunately that gets uncomfortable... her face turns red and she gets hot and sweaty... after a few minutes it subsides and she's back to her normal happy self. Usually.

Last night she woke at 2am with intestinal gas... 45 minutes of screaming and thrashing until she got some bubbles out and passed out. Followed shortly by us passing out.

She able to tolerate being on her back for a short time; a few minutes, it seems, without getting gaggy. Sometimes we wonder how she manages to sleep on her back at night (her crib is inclined, but still).

And all day long we're still venting her... about hourly she'll need to push out a bubble of gas from her tummy, even though we're not putting food in her belly anymore.

Cute new GJ button!
Still -- this is all WAY better than it was before we changed from the G-tube to a GJ tube. Really. It's not night and day... but it feels like a whole different and more level of insanity.

Before, she could generally only take a few seconds on her back, not minutes. The gas was at least 20 times as prolific; so we spent 12+ hours a day holding her and venting her. Couldn't set her down and couldn't leave her unattended for a minute because she was so prone to retching... all day you were on pins and needles vigilantly listening for the warning sounds of a bad gas bubble brewing.

You know that feeling when you step out of the car into a really cold wind and you just grit your teeth and mostly hold your breath until you get into the house... yeah it's felt like that for the last year or so.

So while we still have a long ways to go and while we're still figuring out a new schedule and the mechanics of GJ feeding, I'd say this is finally on the solid upswing.

Gotta go... time to feed her again...

Tuesday, August 20, 2013

Baby Formula Calculator

We have had to experiment with different concentrations of baby formula; oddly enough I could not find an online calculator to let me easily figure out how much water and formula to mix to obtain the concentration (calories per ounce) that I wanted.

So I made this -- I hope you find it useful! (Use arrow keys to navigate.)

This formula calculator assumes that your formula follows the same "standard" that I've seen on every formula I've checked; that is, 1 scoop of formula per 2 oz of water to create formula with 20 calories per ounce.

On the formula cans I checked, this "caloric density" was stated in the nutrition area as 100 calories per 5 oz serving. They also stated that each scoop of formula added 0.2 oz to the final volume; so that's what I used in the calculations.

This calculator lets you run the numbers 3 different ways:

1) If you are trying to hit a particular total number of calories with a particular caloric density -- for example if you are making up a pitcher for the day -- the first row should do the trick. Just enter your calorie target and desired concentration in the green cells.

2) As a variation on #1, if you have already figured out that you plan to use a particular number of scoops of formula and know the caloric density you need, try the second version.

2) If, instead, you want to find out what caloric density a particular combination of water and scoops would yield, the third row has you covered.

If you find this useful please drop me a comment! (Also if there are any other calculation variations that you would find extremely helpful, let me know and I'll improve the calculator if I can.)

Thursday, August 15, 2013

4/3 years old!

Thank goodness I'm cute...
Our "Maddie Maddie" is 16 months old today.

Hard to believe. The last few months have been a blur as we've doubled down on trying to get her back on track; it's still been impossible thus far to get all of her prescribed therapies in, and she's not finishing her pitchers of formula these days... which just means we have more work ahead of us.

She's 16 months; but in many ways is the equivalent of a 6-month-old. She's responsive and interested in people, toys, etc... but is stuck in a body that just hasn't developed yet.

We'll get there -- and today things are still far better than they were just a few months ago -- but just for posterity here's where we sit today:

  • She can't yet walk, crawl, hold in "4-point", or even sit unassisted.
  • Still waiting for that first real word! (by now Sydney had a 250+ word vocabulary)
  • Spending ~20 hours/day tending to Maddie, one way or another...
  • Fighting constantly to get enough food in her g-tube
  • Alternating nights "on duty"... she is on the pump all night, so you need to change the bag once around 1-2am, and also need to vent Maddie between 4 and 10 times a night. We tag out at 6am so the night person can get a three hour nap, at least...
  • In theory, we're supposed to have her in her ankle braces at least an hour in the morning and in the afternoon.
  • Should be putting her in her stander at least twice a day...
  • Should be practicing eating purees 2-3 times/day...
  • Floor time -- she needs as much as she can get. But with her tummy it's a challenge to get 10 minutes/day.
  • Poops and baths are generally a 2-person job, due to the vent tube.
  • Bubbles vent gurgle vent bubbles vent vent vent... aaaaaarch!... vent...
She clearly wants to move and do things, which means everything. And at least we are, perhaps, done with the retching at last! Nothing we did; she seems to finally be growing out of that... and it's been a few weeks at least since the last non-stop full-volume inconsolable thrashing and screaming fit at 1am. (Wow gas pains are fun, right?)

Still things are progressing, albeit slowly. One day this will all just be a memory. The day we get to purge our house of all the medical supplies that currently occupy her room and the kitchen -- well, that will be a beautiful day.

"We put one foot in front of the other..."

Saturday, June 29, 2013

What a year (Maddie's challenges)

Sydney is the best big sister ever!
Playing with Maddie in her "stander".
Whew... what a year... 

June 29, 2012 was a bit of a turning point for the ol' family... that was the day we had to check into the hospital because Maddie wasn't eating like she should.

Since then it's just been one foot in front of the other, as we help her work through these issues and get to the point where she can hit the ground running (at this point we'd settle for crawling) and keep growing naturally.

So FWIW we've been through these phases:
  • Two weeks in the hospital, trying to get her breastfeeding, supplementing nutrition everywhichway.
  • NG tube putting formula into her stomach, to supply calories to reverse her wasting...
  • Some success eating formula from the bottle, and we are discharged from the hospital with some work to do.
  • Settle in to life with a food pump more or less around-the-clock.
  • Cut back on outside activities, responsibilities...
  • Just not gaining weight like she should... do we do surgery or not? Really an agonizing decision for parents to have to make.
  • Surgery. When well. OMG huge sigh of relief... should all get better from here, right?
  • Recovery, eating through the g-tube...
  • Slow slow slow slow weight gain while spending about 18 hours/day tending to her intestinal needs. Gas, coughing/gagging, retching... but at least she's gaining weight! All will be OK, right?
  • Oh crap she lost weight... yes only 1/2 pound, but that's 3% of her weight so still -- yikes.
  • Refocus. Shed still more external responsibilities/activities.
  • Back on the weight gain train. By now it's pretty much the only thing we can focus on. No work, no friends, and unfortunately not enough Sydney attention... but we're going to get through this no matter what.
  • Glimmers of progress. She's gaining weight, getting less prone to startling, and getting stronger... still can't crawl or do what a 14-month-old would normally do, but it does seem like things are heading in the right direction.
  • Settled in for the long haul. One day at a time. One foot in front of the other. We're marching on.
At this point it really definitely like we'll get through this, but it's taking everything we've got. Someday we hope to be able to say "wow do you remember when..." and in a way it's a blessing that both girls are young enough that they probably won't remember a single bit of this...

Not sharing this out of a need for sympathy or anything; just wanted to put words to what we've accomplished over the last year. This is the kind of thing that you can't plan for, can't prepare for, and until it happens you don't know if you can handle it... but part of being a parent is that when it *does* happen, somehow, you just do.

Here's to the next 12-months going "up and to the right".