June 20, 2010
Feeding Update: Ambrose
Last we posted about Ambrose, he had just discharged from the hospital after having his G tube replaced by a G/J tube. He did not tolerate formula any better with that configuration. He continued to vomit continually, the only difference was that he couldn't bring anything up except mucous and foam since we were bypassing his stomach with his feeds. So after a week and a half of that misery, we went back to the goat's milk and the G tube.
We let his GI specialist know that we were not interested in trying any more commercial formulas. We realize that a full goat's milk diet is not appropriate for a child his age either, and would like to pursue more creative, if not alternative solutions.
At the doctor's suggestion, and with the help of Marsha Dunn Klein's Homemade Blended Formula Handbook, we've introduced Ambrose to a blended foods diet. The trickiest part is getting as many calories into as little volume as possible. His little tummy can't tolerate large volumes yet and since the homemade formula is quite thick and will clog the tubing in the feeding pump, it has to be manually pushed through the G-tube with a syringe. This requires quite a bit of attention because right now he's getting a 1-ounce bolus every half hour, in a few days maybe 2 ounces every hour, then 4 every other hour, and so forth until he can tolerate meals again. At night, so Mom can sleep, he gets goat's milk by drip feed, which is half his volume and about 35% of his calories.
The GI doctor doesn't prefer homemade formula to the commercial, and frankly neither do we, but we have to do what we have to do. At least she is open to it and supporting us in this. We had an appointment Monday, but the NP had to fill in for the doctor. This was very frustrating and a complete waste of our time. She wondered aloud with a hint of disdain why we would go to all the trouble of making our own formula when there are dozens of commercial formulas out there. She then went on to relate to me an ordeal she underwent to nurse a puppy to good health after the vet told her to let him die - now he's a show dog! If only Ambrose were canine I might be able to get her to help us.
Ambrose is still receiving feeding therapy twice a week - once as speech therapy and again as occupational therapy. He has showed very poor progress with oral feeds, however, he's still traumatized from all the vomiting he endured this Spring. He won't let you near him with a spoon, but will help himself to some Cheetos or pretzel rods, so long as he's the one putting it in his mouth.
He also gets two visits from a developmental specialist every week and his back and legs are getting stronger. If you'll remember he was in a body cast for 12 weeks last Fall, during which time Charlie learned to roll over, sit up and crawl. Ambrose is now doing all those things plus kneeling, pulling up to standing, and climbing stairs.
Charlie finally got the nerve to walk. He's had the skills for some time now, but lacked the confidence. Of course, it may have had something to do with his enormous head. It's in the 90th percentile for 15 month olds, and his weight and height are 3%and 28% respectively. Ambrose is under 10% for weight, 17% for head circumference and still on the preemie chart for weight. He is around 16 lbs and Charlie about 19.
Ambrose is the happiest of the four and Charlie is starting to rival Josef's appetite, they split a Grand Slam breakfast at Denny's Saturday and Charlie finished his half.