Here's video of Kate's decannulation, July 4, 2008 at CHOP. You can see, after all the buildup, the actual process is very anti climactic.
I've said before that Kate's trach proved to be a far less formidible force than the feeding tube, and over the course of Kate's first year at home, it became readily apparent that getting rid of the feeding tube would take far longer than we anticipated. Her first forays into eating were right after birth, just as any baby. She did ok, but the cleft in her palate was an obstacle that prevented her from having the strong suck that a typical infant does. A child with PRS works really hard to get a fraction of the liquid a typical newborn does, and because of this, they get tired more easily. Forcing them to eat will only cause them to lose the calories they are working so hard to get in. Some pick it up right away, some eventually, and others take longer. Kate was doing alright initially, but when her airway started to become an issue, feeding took a back seat. Kate spent 5 weeks in CHOP being npo (no food by mouth). When we offered her a bottle finally, after she got her trach, she ate from it, but it was clear she'd need to work hard, and be fed more often in order to get the calories in. Coming home, we were told of course Kate could eat normally, things would be different at home, more normal, blah, blah, blah. Well things were more normal home, just not Kate's eating.
It's hard to think back on that time and not want to reach back into time and strangle myself, and every doctor and nurse who stuck to procedure. If I was to pinpoint an emotion that explained my behavior, it would be fear. I was afraid to go outside the box and trust myself, and my daughter. Instead, I followed the orders that read, "allow to po (feed by mouth) feed 3x/day 45mls". Kate took to the 45mls and sucked them down almost everytime we offered it...but we never hooked into that, and we simply stopped the feeding after that amount and pushed the rest through her n/g tube. One of my greatest and most profound regrets is that we didn't try harder, because what ended up happening was Kate got used to that, and later on when we tried to push her, she refused. I'm a firm believer that we did wrong by her, and though I can't change it, I'd never want another parent to make the same mistakes we did. It all comes down to this:
IF THEY WANT TO EAT, LET THEM EAT!!!
Here's Kate, June 07 eating her first cereal. The snorty sound you hear is classic trach baby noises.