Real Food through the Tube!
We are very excited because we discovered a new book about how to make "homemade blended formula" -- essentially, how to take "real" food and blend it to put through Reuben's g-tube instead of the Pediasure.
Let me start with the basics -- Currently Reuben gets 400 cc/day of 30 cal breastmilk (that's breastmilk with formula mixed into it to bring the number of calories per ounce from 20 (plain breastmilk) to 30 -- that's because it's so hard to get high volumes of liquid into someone who doesn't drink it themselves, so you need more calorie-dense foods.) He also gets 300 cc/day of Pediasure, because I'm not able to pump enough milk for him any more to make all of his food.
Yes, that's right -- our freezer stash is finally gone. At one point our ENTIRE 7 cubic foot deep freeze was filled with breast milk, but we gave some of it away and Reuben was able to use the rest, so now we have grown-up food in the freezer -- what a concept! I never really kept track but I think at some points we must have had about 15 gallons of breast milk in storage.
For those of you who don't think in cc's, there are about 30 cc's to the ounce, so he gets about 24 ounces of food each day through his tube, plus whatever he'd like to eat by mouth.
I don't mind giving him the breastmilk-formula mix, because breast milk is so good for him. But the Pediasure is thick and kind of icky to me. When he throws up it smells like burned cookies (the Pediasure is vanilla flavored), and it's making him have lots of runny poo that's hard for him to pass. I just figure that I worked so hard for so long to provide him breastmilk, the best possible food -- why would I now switch to giving him formula if I don't have to?
And we discovered that we don't have to! There are lots of families out there who are giving their kids real food through the tube, and it's not that hard to get started. You start just like you do with oral foods -- giving a small amount of a single new food for several days to make sure that the child isn't allergic, and then testing another single food. Eventually, if we want and it works for Reuben, we can work up to giving him entire blended meals of "real" food through his tube. This is perfect for Reuben since there's no reason he can't digest real food -- it's just that the Pediasure is the doctor's all-in-one, simple way of making sure Reuben gets all his nutrition. But we can do that, too, just like we would if he were a healthy kid.
So yesterday I took one ounce of #1 baby food bananas (they're pureed much more smoothly than we can with our current blender) and put it in the blender with 6 ounces of Pediasure to make sure it was thoroughly mixed. Bananas are also about 30 cal/ounce, so we can give him the same volume as we do Pediasure.
He tolerated it just fine, so today we're giving him 2 ounces mixed with 9 ounces of Pediasure. Once we know he tolerates that, we'll probably add a bit of flax seed oil to the mix to make sure he gets all the good fats he needs for brain development. I think we'll try prunes and then applesauce after that.
Other families have found that their kids gain weight better and digest food faster when it's "real" food versus formula, and also that they take to oral foods faster. It's just anecdotal evidence, but it makes sense -- they taste "burps" of the real food, and also they are accustomed to having it in their bodies and their bloodstreams, so they may be more willing to try it.
I am just so thrilled, I was crying when I read the book about how to do this, and crying when I put the bananas in his milk yesterday.
The next step once we get past the "first foods" will be to buy a Vita-Mix blender, which can liquify the food. Luckily they have a program that allows families with tube-fed kids to buy reconditioned blenders at a discount, since they cost several hundred dollars. But it will be totally worth it!
Love,
Jonna, Eric, and Reuben
Let me start with the basics -- Currently Reuben gets 400 cc/day of 30 cal breastmilk (that's breastmilk with formula mixed into it to bring the number of calories per ounce from 20 (plain breastmilk) to 30 -- that's because it's so hard to get high volumes of liquid into someone who doesn't drink it themselves, so you need more calorie-dense foods.) He also gets 300 cc/day of Pediasure, because I'm not able to pump enough milk for him any more to make all of his food.
Yes, that's right -- our freezer stash is finally gone. At one point our ENTIRE 7 cubic foot deep freeze was filled with breast milk, but we gave some of it away and Reuben was able to use the rest, so now we have grown-up food in the freezer -- what a concept! I never really kept track but I think at some points we must have had about 15 gallons of breast milk in storage.
For those of you who don't think in cc's, there are about 30 cc's to the ounce, so he gets about 24 ounces of food each day through his tube, plus whatever he'd like to eat by mouth.
I don't mind giving him the breastmilk-formula mix, because breast milk is so good for him. But the Pediasure is thick and kind of icky to me. When he throws up it smells like burned cookies (the Pediasure is vanilla flavored), and it's making him have lots of runny poo that's hard for him to pass. I just figure that I worked so hard for so long to provide him breastmilk, the best possible food -- why would I now switch to giving him formula if I don't have to?
And we discovered that we don't have to! There are lots of families out there who are giving their kids real food through the tube, and it's not that hard to get started. You start just like you do with oral foods -- giving a small amount of a single new food for several days to make sure that the child isn't allergic, and then testing another single food. Eventually, if we want and it works for Reuben, we can work up to giving him entire blended meals of "real" food through his tube. This is perfect for Reuben since there's no reason he can't digest real food -- it's just that the Pediasure is the doctor's all-in-one, simple way of making sure Reuben gets all his nutrition. But we can do that, too, just like we would if he were a healthy kid.
So yesterday I took one ounce of #1 baby food bananas (they're pureed much more smoothly than we can with our current blender) and put it in the blender with 6 ounces of Pediasure to make sure it was thoroughly mixed. Bananas are also about 30 cal/ounce, so we can give him the same volume as we do Pediasure.
He tolerated it just fine, so today we're giving him 2 ounces mixed with 9 ounces of Pediasure. Once we know he tolerates that, we'll probably add a bit of flax seed oil to the mix to make sure he gets all the good fats he needs for brain development. I think we'll try prunes and then applesauce after that.
Other families have found that their kids gain weight better and digest food faster when it's "real" food versus formula, and also that they take to oral foods faster. It's just anecdotal evidence, but it makes sense -- they taste "burps" of the real food, and also they are accustomed to having it in their bodies and their bloodstreams, so they may be more willing to try it.
I am just so thrilled, I was crying when I read the book about how to do this, and crying when I put the bananas in his milk yesterday.
The next step once we get past the "first foods" will be to buy a Vita-Mix blender, which can liquify the food. Luckily they have a program that allows families with tube-fed kids to buy reconditioned blenders at a discount, since they cost several hundred dollars. But it will be totally worth it!
Love,
Jonna, Eric, and Reuben
Nichole (Comment this)