(This post is going to be tedious; I should add that it’s mostly for me, but I hope it helps illustrate my mention of “complicated dietary considerations” in my “About” entry.)
When my daughter was discharged from the hospital, she was being treated for three things: low birth-weight, hyperbilirubinemia, and acid reflux. She ate every three hours, so there were eight feedings a day. Twice a day we mixed a prescription form of vitamin A into her bottles–it turned the milk bright orange and was a bugger of a stain to remove when it came back up. Every five hours (or every other feeding), we mixed a few drops of a compounded medication (Actigall) into about 10 ml of a formula concoction and administered the solution at the beginning of each feeding to ensure that she had finished all of the medicine–in other words, two teeny tiny bottles at every other feeding.
Okay, so here’s where it gets crazy:
Her bottles were one part fortified breast milk (or HBM, as my notes have it) and one part Enfamil Acid Reflux. The Enfamil we made as directed; the fortified HBM was a bit trickier. For every freshly pumped or thawed 180 ml of HBM, I added a half scoop of Similac Expert Care NeoSure in order to bump the calories of HBM up to 24 (HBM is typically 20 calories without fortification). Once that was mixed, I combined it with the Enfamil A.R., part and part.
Oh, and one more thing: at that time, my daughter was consuming approximately 35-45 ml of fluid during each feeding. Which meant we had to make everything in batch. Which meant we had to pay careful attention to the expiration dates. Freshly pumped HBM can sit at room temperature for 2-4 hours. Refrigerated HBM is good for about 48 hours; refrigerated fortified HBM is good for about 24 hours. Straight-up formula is good for about 5 days (according to our hospital team), but is only good for about 24 hours when mixed with fortified HBM. Oh, and because HBM can be frozen for up to 3 months, we had to make sure we were cycling through the oldest bags first.
Every ml of HBM was precious–“liquid gold” our hospital team had called it–so we were very careful about how much we thawed each day–by that time, I was hardly producing an ounce a day, so it wasn’t like I could just make more of it. Furthermore, watching her spit it all up again after each feeding was awful. She was visibly uncomfortable, but unable to keep down those little calories she very much needed. Her acid reflux grew steadily worse, and of course I blamed myself for it, because in the two weeks before discharge, I had mused to our doctors that three different medications sounded complicated, so maybe we could try something else to whittle it down to two.
So three weeks in, I was put-a-fork-in-me done. I mean, on the face of it, the cocktail recipe sounds complicated, but doable, right? Try it at six hours of sleep a day at two hour non-consecutive intervals for twenty days straight. I felt like I had been hit by a truck. So when, on day 21, we checked in with our gastroenterologist, and she asked us how the formula feedings were working out, I nearly burst into tears. “Let’s go back to Prevacid, then.”
And we did. Adding Prevacid (a quarter of a pink tab dissolved with water in a syringe administered twice a day) was the best thing we could have done. It did much more for her reflux than the cocktail did, her appetite improved, and taking one of the two formulas out of the equation made the mixology so much easier.
It wasn’t long after that the other two medications were phased out, and once our supply of HBM ran out, fortified bottles became much more straightforward. When my daughter began eating solid foods, we no longer had to use the Prevacid. By her first birthday, we had transitioned her from NeoSure (which smells like dirty pennies) to PediaSure (which smells like chocolate), and she was quite happy to make that change. The only thing was, the day of her party was the day she decided she no longer wanted to be fed with a spoon…and as challenging as that was, in the grand scheme of things, no biggie, so long as I could sip a glass of wine while we shared a cup of finely chopped blueberries.
Author’s Note: Enfamil A.R. is expensive. NeoSure is expensive. PediaSure is expensive. And Prevacid is immorally expensive.