I'm also starting to question that Ainsley has to get the "perfect" amount of food. Since having a child with a feeding tube I've often thought wouldn't that be great if I could feed Adrian via tube to make sure he's getting exactly the nutrients and calories that he "should" for his age and height. Sounds silly doesn't it? All kids do not eat exactly the same amount of food. Nor do they have the same body type. Where Adrian is a somewhat picky eater, Evie is a parent's dream eater. I think they'll both be okay and neither will starve.
A huge problem is that when you're tube feeding a child you don't know when they are hungry or how much they want to eat. Perhaps this will resolve itself when Ainsley is able to communicate but until then it's trial and error. The issue is further compounded by the fact that she gets a lot of feeding at night which leaves her less hungry during the day. Until now I have been relying on nutrionist formulas and pumping in the amount they say she needs. But as time goes on I feel more brave and ready to take over the responsibility for Ainsley's "eating" and feed her like I would any other child. With food. And based on her cues about how much and when she wants to "eat".
On 2/21 I started mixing in quantities of rice cereal to thicken the Pediasure. I knew I would eventually be moving her toward real food. But my primary goal was to thicken the food. My hope was that it might help with vomiting and it did. About a week and a half later I noticed the quantities were less as well as the frequency. I had given her foods orally in the past (with limited success that's another story), and through the tube back in December but stopped when she got sick with a virus. So I decided to start the whole process over. I added a baby food one at a time for a few days like you would with a little baby, in addition to the rice. Alternating the foods at each "meal" like you would for any kid. On 3/17 I started including some frozen pureed chicken I'd made. On 3/20 I started making it into a formula for the day instead of one meal at a time. The formula included rice cereal, chicken, 4 vegetables, 2 fruits, essential fatty acids, liquid vitamins thined with Pediasure and blended very well with a stick blender until it was a consistency that would fit through the g-tube. Tody I started replacing the Pediasure with whole milk. I'm thrilled to say that she's tolerating it fine. For a few days she's been crying toward the end of her feeding. We presume because it's more filling than Pediasure and she's letting us know she's "done" sooner. So we've tried to decrease the size of the feedings and give more of them throughout the day. No doubt it will take some time to figure out what works for her.
I feel really good about this change. It feels great to know she's getting real food even if it is from a jar. She seems to have more energy. She's not vomiting as much which has helped decrease swelling in her airway. And since making this change her poop has gone from a disgusting mucousy mess to normal poop. The only down side is that it takes a fair amount more of my time. I'm hoping to eventually move toward making the food from fresh ingredients but for now this is okay. Eventually it would be great to get her off the night time drip and give her all her food during the day like you would for any child. But small steps.
One good thing about tube feeding your child. They eat lots of things they wouldn't necessarily normally eat at this age. So far the list of foods Ainsley's gotten through the tube:
peas
carrots
sweet potatoes
mixed veggies (includes spinich)
green beans
pumpkin pie (pumpkin with spices)
apples
pears
apples with blueberries
prunes
banana
peaches
chicken
refried beans
rice
oatmeal
milk
essential fatty acids (Omega 3, 6 & 9)
vitamins
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