Monday, December 14, 2009

Who knew?

Well, we officially get to try Maddy on yet another new formula. They (yes, the infamous they who are always helping to make decisions about all things medical) think that putting on her Nutramigen AA (the AA stands for Amino Acids)might just help us get her on a "full strength" formula. We are finally all in agreement that Maddy's protein processing issue was a tad stronger than originally thought, and that by giving her an amino acid formula, we may not need to water down the formula with pedialite all the time.

I want to take a time out and explain how we usually prepare Maddy's food. The first thing that I, as a parent, must decide is; am I making food for Maddy's mouth or Maddy's pump?

Maddy has a very sensitive mouth. (Think a bloodhound, but instead of a sensitive nose, her mouth can tell even small changes in texture or taste.) So, if you I am making something that is going in Maddy's mouth, there must be no formula involved in the mixture at all. So, if it goes in her mouth, then it must be breast milk that has been freshly pumped. It cannot have been put in the fridge and then warmed up (this changes the texture ever so slightly) and it must not have been allowed to separate. It can have pedialite added to it. Maddy prefers that the mixture be half pedialite and half breast milk. And with all things that will go into Maddy's system, it must be thickened with HydraAid to nectar consistency. Once this has all been mixes, then it can be put into a 3 ounce bottle for Maddy to eat. (She has to have a small bottle that she can get her hands around and hold up by herself.)

If it is going in Maddy's pump, it is a little easier. I start with four ounces of water, add two scoops of Nutramigen and shape vigorously. I then add the thickener and shake it up before I add another four ounces of pedialite. All of this then gets put in her pump, and it goes in at 48 ml per hour. (That is an ounce and a half an hour for all of you who are not expert baby feeding chemists.)

So, while nothing would change with the milk Maddy gets by mouth, if the Nutramigen AA works, we would simple add four scoops of powder to eight ounces of water, and then add the thickener. It would make one step easier at least. It would also mean that we could cut in half the amount of time that Maddy has to be on her pump. With only needing to be on nine hours a day, she could have most of that time when she is sleeping. That is a huge advantage as Maddy is starting to walk around tables, and she is already crawling backwards for longer distances than her cord can go. It is only a matter of time before the weight of her pump pack would affect her ability to be mobile.

So, we start the new experiment tomorrow. Wish us luck!


Kathy Haynie said...

Yes, good luck. I certainly never knew that feeding a baby could be so complex!

JuliaKoponick said...

Neither did I. I figured once a baby could latch on that you were pretty well there. Maddy has certainly been a challenge. I am glad that we live in a time when it is possible to do all of this. I doubt Maddy would have survived this long if she had been born 100 years ago.