Today’s post is brought to you by basic math and frustration with doctors. So, buckle in. It’s a doozy.
We had LP’s twelve-month appointment to see how things are going with his special care pediatrician the other day. This pediatrician handles LP’s feeding tube/dietary stuff and oxygen needs. He also wrangles LP’s other specialists. It’s nice having one person as a point of contact who all information goes through. However, I have a feeling that they are not accustomed to working with numerate parents.
After LP’s swallow study in April, his team made a lot of changes to his dietary stuff. This included upping his formula calories by mixing the formula in a different water-to-powder ratio and decreasing the amount of thickener added to his bottles. (LP cannot have regular, thin liquids because he aspirates them. He’s slowly growing out this problem.) Now, I’m generally a pretty easy going mom when it comes to this stuff. Just give me the ratios and I’m happy to figure out (i.e., do the math) for the volumes that we need. Like most kids, LP doesn’t eat the same amount at every meal and the formula and thickener ratios call for different volumes. His formula is 19.2 grams (2 scoops) of formula to 3.5 ounces of water or approximately 5.5 grams per ounce. The thickener is 1 packet to 6 ounces of finished volume which comes out to 1.125 milliliters per ounce. So, if I want to make a six ounce bottle (which actually comes out to 7 ounces once mixed), I put six ounces of water and 33 grams of formula into the bottle. I also add 7.875 milliliters of thickener. Easy peasy. Although, not as easy as just pressing go on our Baby Brezza, but that’s for another day.
Side note: I prefer to use grams instead of scoops since I can use my kitchen scale to get accurate amounts and can quickly prep bottles for a couple of days.
While we were there, that day’s dietician, who had neveer worked with us or LP, kept asking so many questions about how we were mixing his formula. She could not seem to get through her head that he eats different amounts at every meal and because of that we don’t always prepare the same amount. For example, he tends to eat a little bit at breakfast, but then a TON at lunch. We’d rather not waste the formula, so we plan for that. Plus, it’s not that big of a deal to make a second bottle if he still seems hungry. I kept reiterating the formula ratio to her hoping that it would click for her. I think her confusion comes from the fact that most tubies (as children with feeding tubes are often called) eat or are fed the same amount of food several times a day. For example, when we went down to five meals per day, LP ate 149 mL every four hours (we skipped his 3 AM meal). He didn’t get a choice in the matter because whatever he didn’t eat by mouth went in via his tube. Dieticians and doctors like when you can say by rote how much and when your kid eats. Unfortunately, that’s not really how the human body works. Some of us love to eat breakfast, others not so much. There’s a lot of variablity in how much and how often humans actually eat. We aren’t algorithms to be tweaked and we’ve tried to get away from treating LP like that. It’s not easy.
She also had trouble with understanding that we aim for 110 kcal/kg to keep him in weight gaining mode. The revolving door of dieticians is getting old. It’s like having too many cooks in the kitchen. But, I digress… Kids LP’s age generally need to be between 90 and 120 kcal/kg in order to maintain their growth curve. Due to our extensive data collection efforts and our conversations with our two other dieticians, we know that he has to be on the upper end of the range to stay healthy and grow. With this goal in mind, we track his calorie intake throughout the day and then use his g-tube to top him off with however much formula he needs to get to the goal. (I know that I said we don’t try to treat him like a math problem, but there are just some truths that we have to follow.) Some days, he has no problem eating enough and we don’t have to do anything. Other days, we end up sneaking in an extra bottle while he’s asleep. Here’s the thing though… We have an Excel spreadsheet set up that does these calculations for us. There isn’t a point to reinventing the wheel on a daily basis.
So, I ended up leaving the appointment feeling like I had just taken and passed a quiz about how to care for our kid. It’s hard to describe how these appointments make us feel as there always seems to be a tone of condescension, like no matter what we do we’re somehow wrong. At least our doctor did listen to our concerns and we’re going to try an appetite stimulant to see if we can get LP to start connecting the feeling of hunger with expressing a desire to eat and then actually eating. He’s never been good about showing us when he’s hungry and getting him to make that connection will help tremendously with getting him to eat enough to grow and not need the feeding tube any more.