Back whe Kate was 3 weeks old, she had what's called a tongue/lip adhesion to try and solve her airway difficulties. The procedure basically pulls her tongue forward and stitches it to the inside of her lower lip in the hopes of protecting her airway. It didn't work, and Kate ended up trached, but the plastic surgeon didn't want to take her back into the OR just to take it down, so we waited. The original date for the takedown was May 6, but the illness that was April made that impossible, so we rescheduled for June 6. Kate had her tongue released on 6/07/07 and B and I waited patiently to see her tongue in action. As an infant, her tongue was quite recessed and when it was stitched she looked normal, but we knew better. We couldn't even tell if her teeth had started to come in yet. We stayed one night at CHOP for the surgery, which Kate came through with flying colors. She slept most of that day, was slightly swollen, but no worse for the wear. We came home the next day, Kate with several stitches across the edge of her tongue. You can see them in this picture.
In spite of all the hospital stays, Kate continued to thrive at home and was everything we hoped for in a daughter: beautiful & smart. To our eyes, she looked normal, like the boys but still her own person. You can see here, her jaw doesn't really look any different than a typical child, and I doubt very much anyone would be able to tell she had PRS, if not for the accessories that accompanied her everwhere.
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.
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