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