So, this is something that has been eating away at me for the past two months or more.
Samson’s blood sugar control lately has been really terrible. We went from an average BG of about 127 and an average SD of about 40, to an average BG of about 133, with an SD of 52!!! Tons of high highs (over 300), lows below 60 that last hours, missed site changes, tons of overcorrections with low treatments, tons of rage boluses. Everything feels pretty out of control with his numbers.
Well, we had another baby. We bought a house. We moved into a new house. His sensors have been flaking out at the same time as we’ve seemed to have some absorption issues. We had no Internet of cell reception, so his artificial pancreas has been non-functional.
But also, we’ve been really, really tired. Because of nursing difficulties (a tongue-tie, clipped twice, which still prevents efficient feeding), I have to follow a punishing schedule of pumping and nursing 12 times a day, which pretty much ties me to the couch or the bed most of the day, at the same time as I don’t have Internet access to BG data. Which means I am not looking at Samson’s numbers. The new house also means the kids are running across a much vaster distance, which also means Samson’s out of range of his receiver a lot more often. Those 15-minute data blackouts add up.
And because I’m up at night at least twice for an hour to nurse the baby, my husband (or my MIL) has been monitoring Samson’s numbers at night. But my husband is just not as vigilant as me and, quite simply, does not wake up to the alarms, and my MIL doesn’t fully understand the rules for insulin delivery, so she can’t do much when he’s, say, 300 and my husband sleeps straight through or yells in his sleep “he’s fine.” Ironically, his control is at its best when he’s at school, under the care of minimally trained but vigilant teachers who are being more attentive lately than we are able to be.
This has been making me feel pretty guilty. Every time Samson wets the bed because he’s been high all night, or every time he has a horrible low, I feel like it’s because I’ve let him down. But I also feel like it’s important to at least try hard to nurse the little one, because of the (admittedly weak and unconvincing) hint of a connection between feeding method in early infancy and the risk of developing T1D. (This is particularly ironic because Samson got mostly breastmilk whereas my first got none, but I’ve now convinced myself that the increased risk may be more prevalent with a mixed feeding strategy versus exclusive formula feeding because of its effect on the microbiome.)
On one hand, controlling Samson’s BG in the here and now is going to concretely affect the risk of long-term complications in the future, whereas there’s really no good evidence that feeding Colin a certain way will ward off this disease. On the other hand, I’d never forgive myself if I didn’t do everything possible to prevent this disease, now that I know the increased risk is there. And from a practical perspective, one of the things that will definitely allow me to keep my focus on Samson’s disease management is if his brothers stay relatively healthy.
So I’ve really been struggling with how to balance the needs of everyone, and sometimes I wonder if it was foolhardy to bring a new life into the world when I know that it directly impacts Samson’s well being.
I know this season of craziness will pass. Kids grow up and babies stop nursing. Technology gets better and we get better at juggling things too. And while I’m dreading the A1C reading Samson will get on Monday, I know it will just be a blip in the long life of his disease. But still, I can’t help feeling conflicted and guilty about things right now.
For those who have multiple kids, how do you balance the T1D child’s management with the needs of everyone else? We had a routine, and now it’s all blown up. I’m hoping to get back to that routine soon.