May
2008
Good Eats0
Feeding and digestion issues are as common with micropreemies as respiratory problems, and Dorrie has been no exception. From day one, where her esophagus was perforated, making her unable to eat anything for 2+ weeks while it healed, she has had her struggles with food and feeding. We haven’t faced the nightmare of gut-related issues that some have (and believe me, after watching what Dorrie’s ICN buddy and his parents have had to face, we dodged a real bullet there), but even with good growth and regular pooping, it hasn’t been easy for her.
After finally starting to get breastmilk in mid-August, her calories were slowly bumped up from 20Kcal/oz (regular breastmilk) to 24KCal (breastmilk + HMF), to 27KCal (breastmilk + HMF + NeoSure), to 30KCal (breastmilk + HMF + NeoSure + Olive Oil). She stayed on that concoction until around Thanksgiving, when we first dropped the olive oil, then replaced the HMF with more NeoSure, then finally dropped back down to just 24KCal (breastmilk + NeoSure). Around that same time we also added SimplyThick to help with her reflux. That’s what we came home on.
She’d always had a lot of gassiness, and she’d always occasionally thrown up a feed, but right around the beginning of April, while she was still in the PICU after her tracheostomy, she started throwing up a lot, and the gas attacks started to get worse — she’d be more upset by them, and for a longer period of time. When we finally came home at the end of April, we started keeping track of the pukies in a Google Spreadsheet (also linked in the sidebar) to see if there were any trends. The first trend that emerged was that her worst feed was the one at 9am/9pm. For some reason the combination of meds in that feed were making her throw up way more often than the others. So we tinkered with that and improved it a bit. But the gas was still horrible and was having other consequences: a gas attack will cause her to hold her breath while she tries to push the gas out, leading to desats and needing increased amounts of O2 to hold her sats at a reasonable level; it wakes her up from even the deepest of sleeps and makes it difficult for her to rest properly.
After reading about other preemie parents’ struggles with throwing up and feeding issues, I really didn’t want to keep going until this became a bigger problem than it needed to be. I thought part of the issue was probably the NeoSure — maybe she was having a reaction to the cow milk in it, or maybe there was something else in there that her body just couldn’t tolerate any longer. So we discontinued using the NeoSure to fortify the breastmilk.
Since then, we’ve seen a decrease in the amount of puking, though not a complete elimination of it. The biggest change is that the gas is no longer as awful as it was. She still has the attacks, and they still bother her, but they seem to be less frequent and they don’t last nearly as long. I consider the experiment a success.
Unfortunately, to keep her getting the proper number of calories to grow, we’ve had to increase the amount of breastmilk she’s getting, causing us to whip through the frozen breastmilk even faster than we had been. That means in the next couple of weeks or so, we’ll be out of frozen altogether, and since I had to cut back milk production due to storage issues way back in September, I no longer produce enough in a day for all of her meals.
So we’ll be having to switch her over to formula soon. Dr. Optimist immediately suggested we use NeoCate, much to my relief, since that’s what I was going to ask for us to use. I’m worried about how she’ll tolerate it, but cautiously optimistic that she won’t have a bad reaction. If she does tolerate it well, it will mean an end to pumping for me. And after 10+ months, let me say that getting back that 2-3 hours I spend doing it every day will be a HUGE relief. (And not just for me.)
On other fronts, we’ve also started trying Dorrie out on some solids. She’ll be 7mo. adjusted next week, and though she probably is not really ready for solids (she is nowhere near able to sit up on her own, and she hasn’t really shown any clear interest in eating), I think it’s a good idea to start trying to get her used to having food in her mouth. The goal right now is not for her to consume massive quantities (To get all of her calories from solids, Dorrie would need to eat about 15 jars of baby food every day) but to stimulate her mouth and make her more receptive to food. While she doesn’t seem to have an oral aversion, I have noticed that she is cautious about putting certain things into her mouth. She loves her pacifier, she’ll chew on Blue Hippo or her caterpillar, but when her fingers come up to her mouth? She makes a hideous face and moves them out again.