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".