Wednesday, November 16, 2011

Lily's New Diet

The one thing that has always bugged me about Lily's g-tube is that it's just so. . .unnatural.  Sure, the button itself is obviously unnatural, but the formula that she gets is what bothers me the most.  I know it's developed to meet Lily's nutrition needs, but when funky ingredients that sound alien litter the ingredient list, I cringe.  Plus, it kills me that Lily has no idea what she's missing when it comes to eating the good stuff like peaches and strawberries and cantaloupe.

For the past year, I've been wanting to try a more natural diet with Lily.  Her nutritionist gave me information on what is called a blenderized diet.  I did some research, and then put it all aside because I wanted to read the book Homemade Blended Formula Handbook before venturing out onto this road less traveled.  But I kept putting off buying the book because it seemed rather expensive, and I didn't know if it had the information I was looking for.  

I had read a post from the mom of Lilly, a little T-18 friend of Lily's, and how she was starting Lilly on a homemade blended formula diet.  We exchanged a few emails, and I must say. . .I was inspired to get moving!  So instead of purchasing the book, I decided to get it via interlibrary loan at our local library.

One of the supplies I kept hearing we'd need for this type of diet is the Vitamix blender.  My mom works at a restaurant supply company, and she was able to get us one for free!  It's quite an expensive blender, so that helped a lot; however, I hear that the company that makes the Vitamix offers a discount to families with children who have special feeding needs.  This blender will come in very handy once we get to the point where we're blending Lily's food.

But, finally, I've taken that step and started the process.  We're taking it very slowly:  week one consisted of one tablespoon of Stage 1 baby food applesauce mixed with her morning feeding.  We're in week two, and Lily is now getting two tablespoons throughout the day--one in her morning feeding and one in her 4:30 feeding.  She's tolerating it very well.  Next week, we'll move on to squash probably.

I've read wonderful things about this diet, and I hope that I can be yet another one to add positive comments about it.  Since Lily nursed for about 13 months, she's not been solely formula fed.  Still, I do worry a little whether or not this new diet will shock her system.  But I'm recording a lot of information--feeds, calories, weight, how she's tolerating, how much she's going to the bathroom, etc.--and watching her closely.

Since she's been on this new diet, Lily has not vomited, and she's not been on any of her medication, including the erythromycin (spell check!!!) for motility.  I can't necessarily credit the diet, though.  When Lily was sick a few weeks ago, the doctor put her on a steroid and an antibiotic.  I'm wondering if the steroid reduced some swelling that might have contributed to the vomiting in some way.  We may go back to the Miralax--Lily did have a bowel movement FOUR times today, but they weren't the consistency I like to see--but we're first going to try to increase her liquids before going back to that.  I may even try a little prune juice and see how that works.

As for physical improvements, Lily was down to 18 pounds, 8 ounces (with clothes) when she was sick.  That was on 10/28.  Last night we weighed her (without clothes), and she was up to 20.5 pounds.  Keeping that food down really helps!  Her hair seems to be growing, and she's now trying to get into a crawling position.  She's just having trouble straightening out her arms.  She's getting her behind off the floor, though.  Maybe all of that is coincidental.  Only time will tell.

I'm excited about this diet, though.  I can't wait to introduce peaches and strawberries and cantaloupe to Lily one day.  Like I said, we're taking this very slowly, but one day, she'll get a chance to have in her belly things I have no trouble pronouncing.  It sounds healthier that way.


  1. A son of a friend of mine has trouble digesting (kidneys?) regular store bought formula. She is looking into raw goats milk formula. Maybe that would also work better for lily? The websites i checked included the recipes, there a few things that have to be added to thw goats milk, but it doesn't seem difficult to make. So glad to hear that she's doing well!!

  2. I really believe my Lilly is thriving on this real food diet. I hope your Lily will too! It just makes more sense, doesn't it? Real food - like our other kids (and we!) get. If you have trouble pushing the plunger through the syringe - dip the plunger in a little olive oil. :)

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