Our nutritionist has been advocating for making a switch to part formula for a long time now. All while saying that breastmilk is best for him, of course.
And out of all the members of our healthcare team, the nutritionist is the most likely to just walk in and issue an edict and expect obedience, not discussion.
About a month ago, she walked in with a can of PM60/40 (the formula for renal kids) and called it our new friend. She said to add two scoops to his breastmilk every day. Um… no. I mean, there was no discussion, no mention of alternatives, etc. I essentially refused and we agreed on doubling the protein powder instead and seeing if that would encourage enough growth.
I also said that I was going to start doing a blenderized diet with him to replicate what those two scoops of formula would have given him in terms of calories and fat and protein. I asked for specifics – numbers. How many calories, how much fat, how much protein, how much potassium. I was not given any. I asked what the goal was with the formula fortification. “just getting him more nutrients.” And yet, despite the incredible lack of specifics, she repeatedly said that blenderized diet wouldn’t work.
So, we came home and I looked up what would be in 2 scoops of PM 60/40 and I came up with a few recipes to give him the same calories, protein, carbs, and fat. And I made them and he had them for 2 days before the diarrhea from the CDiff got too bad and I stopped. That was end of October.
Then dialysis, which was supposed to help him grow, didn’t work out for us and I was accepting that we would probably have to fortify. I was ready for that. I can go with the flow. I know that I have a reputation among the team as being perhaps unreasonably against formula, but I’m not. I just think that it needs to stay in its proper place – as a last resort option after other options have been ruled out. Not as a first choice.
So I was ready for You’ll Probably Have To Fortify. What I heard instead, on perhaps my lowest day since Dec 6, was that they wanted me to do half formula, half breastmilk. In retrospect, they were thinking I’d need to decant with kayexalate (which is a potassium binder, his potassium had been pretty high) and you lose a lot of volume doing it that way, and it would have been impossible to keep up with him. But it wasn’t presented that way. And I was, at that point, 11 days away from my goal of 1 year without formula.
So I asked if we could just wait until the 27th. I’ll do it on the 27th, but I won’t do it before then. 11 days won’t matter that much. I’ll decant breastmilk and run through the rest of my freezer stash if I need to.
Well, then his potassium got a little better and I didn’t need to decant after all.
Then I asked if I could meet with the nutritionist and our nephrologist the next day about his diet. I asked them outright, “If Teddy were eating like a champ, would you still feel he needed formula, or would a diet that’s breastmilk and food – like a regular kid – be fine?” A diet of orally-consumed food and breastmilk would be fine as long as labs were stable and he was gaining weight appropriately. So if I can replicate that with a blenderized diet, I can actually control what he eats to a much finer degree than I could if he were eating food. If I can get him what you think he needs as far as potassium, calories, fat, protein, etc., using real food, that is my strong preference instead of something from a can.
There was some vague statements about formula followed by “understand?” to which I kept replying “no.” Then I got the discussion of how hard it is, and I told them that I’m not afraid of math and i love Excel. I got the discussion of how we’d need to blend the food really really well to get it through the tube (duh). I just kept politely pressing and finally said “here’s where I’m at. I will willingly and happily move him to a formula/breastmilk combo if that’s what’s truly going to be best for him. My goal is the same as yours. I want to grow him as fast as possible and keep him as healthy as possible to get him to transplant. I would prefer to do that with real food and I am confident I can closely replicate what he’d be getting from formula with real food instead. I’d like to give it a try.”
SO, the end result is that they ended up deciding that we can stick with all breastmilk for the time being and watch his labs. After he turns 1, my concession is that we will either add scoops of the formula to the breastmilk to increase the fat/calories, or we will move to half formula/half breastmilk. (and this will just depend on labs, and whether I comply or not remains to be seen. If we’re just adding fortification to his milk, I see no reason this can’t be accomplished through food.) In the meantime, I will get cracking with my spreadsheet and come up with a varied diet for him that replicates what he’d be getting from formula and bring it back to them and we’ll discuss. They threw out at the end something about looking at not just macronutrients, but micronutrients, too, but I think that might be a little bit of BS. You’re going to get more/more varied micronutrients from food than from a can.
I don’t understand how nutritionists seem to think eating real food is so overly complicated.