Crunch crunch..

This sound makes me the happiest mommy ever.


A.G. just realized that he loves Cheetohs - as in actually chews and swallows them which is an incredible accomplishment.  Eating is not something that comes easy or natural for him at all.

As a newborn baby we never quite got the breast thing going.  His little heart left him very sick with O2 sats in the 70%s and feeding was difficult.  At home around 6 weeks old, I finally got him to take enough calories by doing fortified breastmilk by bottle without needing a feeding tube.  Then after his second surgery around 5 months old he developed a complication that required a special diet.  3232A formula - horrible!  When we would mix it up at home we'd have to use the blender and it would make this nasty snot/cement consistency.  We tried to get him to drink it but it was too gross.  Finally decided to put it all down an NG (nasogastric feeding tube) and give him tastes of pureed veggies and apple juice instead.  Back then, he still kinda liked eating.  He was very sick, in heart failure and had little energy. He would likely be allowed a regular diet after getting a heart transplant so that was my hope.  I pictured him getting his new heart and suddenly becoming a new boy and eating like a normal kid.
Unfortunately, it didn't go that smoothly.  He started off okay.  One day he ate some pudding and got really excited about it.  He would take some bites of purees.  One time he was on steroids for a rejection episode and the "roid rage" hunger made him eat everything in site for a day.
But over the course of a few months, he pretty much lost interest.  He still had his ng tube and was throwing up all the time.   We got him in to get a G-tube (a feeding tube that goes straight in the stomach) which helped are quality of life and his comfort but wasn't a total solution for the vomit.  He's been getting therapy which is an incredibly slow process.
Then, about 6 weeks ago we decided to try something new.  I've been reading about the therapy they do out in Graz, Austria with the goal of transitioning kids to oral eating. http://notube.at/ They consider "tube dependency" for non-medical conditions to be a pathological condition. (As in when a child is medically safe to eat but chooses not to and is fed by tube)   They say that what is important for feeding is:
1. Hunger - a child will not start eating if he/she is full of high calorie formula from a feeding tube.  These need to be decreased to encourage the child to eat, even if it means some temporary weight loss.
2. Autonomy - the child should be free to make his/her own food choices.  They should not be force fed or told to eat but should have access to food and drink and be allowed to chose it when hungry.

We signed up for webcoaching where you have the local pediatrician follow the child's weight and then correspond online as far as weaning down tube feeds and encouraging self feeding.
The process hasn't been quite as smooth as we hoped, but he is now eating enough Cheetohs for half his calorie needs and taking a few bites of other foods too.  A couple months ago, I could have never pictured this.  The traditional therapies at home had been going much slower.  Our next step is going to be drinking since he is still not taking any fluids on his own.  We have been lucky in that our pediatrician has been incredibly supportive of this process.

So, for now, hearing the crunching sound of my little buddy eating his own snacks that he chooses and enjoys makes me incredibly proud!