Here's the receipe we're working with for those of you who have expressed interest. This is still a work in progress and might change based on Hallie's needs (a thicker consistency to prevent aspiration, as she aspirates thin liquids and penetrates on some nectar consistencies; calories; etc).
7 ounces of fresh Goat Milk (we've been buying ours at Whole Foods Market for around 6.75 a half gallon---about comparable in price to Pediasure, but less complete of a food, so we add a daily multivitamin to Hallie's diet; it may indeed be cheaper at Trader Joe's and it's definitely cheaper in the condensed variety or dried variety available on line). From what I understand, Goat Milk freezes well and this might be a nice option for those of you with large freezers previously used for breast milk and without a Wholefood or comparable health food store readily at hand. (135 kcal)
2 scoops (level) of Enfamil AR powder (80 kcal)
1-2 tbsp of karo syrup (this adds 60-120 kcal)
3/4 of packet of Simply Thick honey strength (for aspiration due to laryngomalacia/paralyzed vocal cord etc....not necessary for those who can handle normal consistency bottles).
once a day: vitamins and probiotics added to mix.
What I do to achieve perfect consistency is put the goat milk in a stick blender container, then add the AR and then blend until mixed evenly. Then I add the Karo, vitamins, etc and blend again. Finally I add the Simply Thick and blend a third time and transfer to bottles. It seems to keep its consistency very nicely in the fridge.
Each bottle is between 270 and 330 calories and you can reduce Karo syrup as desired if your child does not need the extra calories.
Bear in mind that, if your baby is not doing any additional foods, this may not be a total food replacement. While you do benefit from the added Enfamil AR powder's nutrients, you would want to make sure to check with your doctor and nutritionist to ensure that your child's daily requirements are being met by this formula. Indeed, regardless of whether your child is eating purees, it's worth checking with medically trained folks about this---in other words, this is just what we've been doing and not medical advice.
But I will say this: Hallie definitely likes the taste of this more than other stuff we've fed her, and even if we haven't had a miracle (vomiting hasn't disappeared entirely from our lives), she is a lot happier and not as gaggy/retchy/prone to vomiting on this formula as she was on the Pediasure and Nutren, Jr.
8 comments:
Fabulous - sending my husband to Whole Foods on his way home!
Seeing as its 'holiday time' we picked up some egg nog at the market. 8 oz. has 360 calories! No where near nutritional but it has calories!
We gave some to Arianna last night - she took the sippy cup out of her mouth and said: "mmmm... me like!!".
Too cute!!
Thanks for posting this. I wonder if Sydney could tolerate goats milk. I'll have to talk to a nutritionist about doing this along with Neocate (instead of the AR you're using)
I'm so very glad that things are trending in the right direction. Way to go Mommy for finding out all of this goat's milk info. You've just got to love the internet!
I was wondering the same thing that Sarah was with the Neocate.
What vitamins are you using? Are they available OTC?
We're just using OTC vitamins. I happened to be at Whole Foods, so I picked up some powdered vitamins that are supposedly more gentle on the stomach (the brand name is Nutristart). I just didn't want anything that was going to make the bottles taste funny to her or constipate her. But I suppose that you could use Enfamil vitamins or whatver you have on hand.
I also think this would work with other formulas (like Neocate). Hallie was on, and liked, Enfamil AR and this worked better than anything else we tried for her reflux. Even though it's got rice starch, it may be less binding for her than the Simply Thick is, and we definitely need to thicken her bottle.
Good luck playing around with this. I hope that the Goat Milk works for you, and yes, I think we'll try some Egg Nog (or at least Egg Nog ice cream) with Hallie, too.
Hi Abby,
I read your last post about Hallie eating purees. Has Hallie tried "table food", what does she do with it...gag? spit it out? vomit? Serena will take about 4 oz purees per meal, but would prefer table food, the last few bites of the purees are usually snuck in after she has a bite of a table food, so we do both at most every meal. I was just curious if for Hallie it's a texture thing or something else? I know sensory issues are huge with preemies, and I was wondering if this is what you think is going on with Hallie? I know we are very fortunate with S&E because I can give them puree apple sauce, then a bite of Ritz cracker, then a bite of mac and cheese and there is no gagging or refusal. I have a bunch of table foods that the kids enjoy eating, so let me know what you think Hallie is experiencing by way of foods other than purees.
Congrats on finding the formula that seems to be working well! We are going to start introducing a thickener (now we use rice cereal which has worked fine for us with Serena's aspirating...1/2 teaspoon per oz is what she takes.) There are so many thickeners. Is Simply Thick the only one you've tried? Others out there, what do you suggest? Has anyone had any luck getting your insurance company to cover the thickener? FYI she is finally a good pooper 1-3 times per day (once upon a time it was only once every 3-4 days) so I don't want to mess with this.
You guys are awesome. I don't know of many moms that would create their own recipe for formula. Hallie is lucky to have you!
Hallie's only real texture is puree. Six weeks or so ago, we were beginning to move from baby food (stage 2) purees to table purees and even snuck in a couple of really well cooked, mushy pieces of macaroni, but she can't handle those anymore and has never been able to handle anything more solid than that. She does OK now on gerber puffs if handed one at a time, but cannot tolerate the wagon wheels, teddy puffs, ritz crackers, etc etc. In the past, we were able to feed her TINY pieces of string cheese or mozarella cheese but the last few times this led to major choking or utter refusal to cooperate on her part. Hallie will put most things in her mouth (including bites of our food), and we are definitely luckier than a lot of parents given this since she doesn't have a full blown food aversion, but the second it gets back to a certain area of her mouth, Hallie panics, gags, and sends everything in her tummy back up. I know that we need to try to get her desensitized, but this obviously clashes with that other huge goal, which is growing Hallie. Sigh. But, like I said, at least she's not averse to the concept of eating altogether and maybe we can some day get to a place where she learns to chew, what food should feel like in her mouth, and how to handle it without choking. In the meantime, we have purees...
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