Citrullinemia FAQ: What exactly does Jacob eat? Also, why do you have a gram scale in your kitchen?

Every day, I mix up Jacob’s formula according to the recipe provided by Erika, his metabolic dietician and guardian angel. It is Erika that maintains Jacob’s delicate balance of enough protein for growth and not enough to hurt him. Although Jacob’s medical progress is supervised by Dr. S, Erika is the one who I email or call on nearly a daily basis with questions about Jacob’s various needs. In Jacob’s two months of life, she has probably adjusted his formula recipe at least five times to account for his growth and answered, oh, about 4,733 of my questions. (I exaggerate, but not by much.) I also can tell that she genuinely cares about him. We are so lucky to have her on our team.

Erika’s recipes are carefully calculated mixtures of two different infant formulas, Pro-Phree and Cyclinex-1, both made by Abbott Nutrition, added to my breast milk and water. I have already discussed in detail my experiences as an exclusive pumper, so we won’t revisit that here.

Pro-Phree is described on Abbott’s website as a “protein free energy module” (doesn’t that sound appetizing?). Basically it provides calories and some vitamins but no protein, hence the name. Cyclinex-1 makes up the bulk of his formula. It is specially designed for children with urea cycle disorders. It does not contain the non-essential amino acids, that is, the ones that our bodies are capable of producing. Since Jacob can only have a limited amount of protein, this formula allows him to get a higher concentration of the essential amino acids that he cannot make on his own.

Each day, I measure his formula and arginine medication on a gram scale and my breast milk in 80 mL test-tube-like vials. It’s like Breaking Bad in my kitchen. pro-phree cyclinex-1 gram scale breast milk arginine

He gets more breast milk than is shown in the picture, but you get the idea. His recipe is taped to the wall and all of his ingredients are ready to go. I mix it all together in a big jug and then measure it out for each feeding. It’s very scientific, and not how I once pictured feeding my baby. But we do get plenty of cuddles even with the bottle, so it all works out okay.

I am now known in the St. Petersburg WIC office as Cyclinex and Prophree girl. I think the wonderful ladies who work there are used to having to counsel women on what and how to feed their babies, so they got a kick out of me marching in there and telling them exactly what Jacob needs, down to the gram.

When Jacob gets older and starts on solids, it will be a whole new world for me, and I imagine a much more complicated one. But for now, I’ll be the one in the kitchen measuring out various white powders.

One thought on “Citrullinemia FAQ: What exactly does Jacob eat? Also, why do you have a gram scale in your kitchen?

  1. Pingback: My Overachiever | One in Fifty Seven Thousand

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