Hello! This is my first time posting. I have a set of identical twin girls who are 6 1/2 months old, 4 1/2 adjusted, weighing just under 13lbs each. Their weight gain and diapers are all totally normal and on track. They were born at 31w3d and spent 6 and 7 weeks in the NICU. Since birth they have been on a combination of BF and bottles of expressed BM -- at first we had to fortify their BM with formula because they were preemies and needed the extra calories, but now I work full time. We started BF in the NICU when they were still very small, and used a nipple shield because their mouths were not large enough to latch. Also, I have a vigorous let-down, so early on when I tried to get rid of the nipple shields they would choke and pull off (and get a face full of milk). In any case I still use a nipple shield with them.
We've been struggling with nursing on and off for about two months now. My girls have reflux and a lot of gas, and this past month their reflux got a lot worse. They're now on both prevacid and zantac, plus simethicone for the gas. We added a probiotic a few days ago as well. Some days they will nurse just fine, and some days they will scream as soon as the nipple shield touches their mouth and refuse to nurse, but take a bottle just fine. Occasionally I can trick them by swapping out the bottle for breast when they're not paying attention, but it doesn't always work. Usually they are more likely to refuse when they're extra gassy or refluxy, or if they get too hungry they will refuse because they are impatient for let-down. Sometimes they will nurse for a few minutes and when the flow slows down they'll pull off and refuse to go back on (I have tried breast compressions, which sometimes helps a little but not always). Almost always while nursing I have to hold their head steady so they don't pull off and turn their head away because of passing gas or getting distracted. If they have a whole lot of tummy upset/reflux, they will also refuse the bottle (suck a couple times, then pull off, thrash head back and forth, and cry) and basically just scream until their tummy calms down, then take the bottle afterwards.
Due to scheduling, at this point I'm down to nursing only once a day on weekdays and twice on the weekend. The problem is that when they do nurse, they don't take nearly as much milk as they take from a bottle. So I nurse them first thing in the morning and they nurse for 10 minutes (they have never gone more than 15 mins), but then an hour later are hungry again and will take a 5oz bottle. I don't nurse them at bedtime because if they don't eat enough they will just wake up in a couple hours.
I have so many questions I don't even know where to start! This has been extremely frustrating for us. Another mom suggested to me that they may have an upper lip tie that is causing some of these problems due to them swallowing a lot of air because of a bad latch on both breast and bottle. Is it possible for an upper lip tie to cause gas and reflux? We took them to the pediatrician and she said their frenulum was low but that typically it is not a problem and they only do anything about it for dental reasons later in life. She suggested we try some wide-base nipple bottles to stretch it out. Up until now they have always been on the regular Dr. Brown's bottles because that is what they used in the NICU to help reduce their reflux.
They can't really latch without a nipple shield, and with both breast and bottle we've observed the following:
- clicking sound while nursing: NICU nurses and hospital LC told us this was normal
- upper lip rolls under while latched on instead of flaring out: we have been trying to pull their lip out while giving bottles lately but I don't even bother trying when they're nursing because it's a miracle if they'll even nurse without fuss and I don't want to mess up their flow
- they do a lot of tongue thrusting
In any case, for their reflux and gas I tried going on a dairy-free diet but didn't seem to see a difference. Then someone told me yesterday that dairy-free isn't enough and I should have eliminated soy too. I have a freezer stock of breastmilk to supplement with when I don't produce enough but I've been using formula instead lately because of trying to do an elimination diet. We also tried giving rice cereal or thickening their milk to help with the reflux, but after we tried it they didn't poop for a week so we went back to just BM and occasional formula.
I'm concerned about losing my supply due to the reduced number of nursing sessions. I was barely keeping up as it is, and lately we've had to supplement with formula for one feeding almost every day. I pump 3x while I'm at work, plus once at bedtime and once in the middle of the night, and nurse once in the morning (unless they wake up more than twice overnight) and once in the afternoon if they happen to be hungry when I get home from work. Since my morning nursing doesn't satisfy them though, they end up getting 4 bottles while I'm at work even though I only pump 3 times. I tried fenugreek a while back on the advice of a LC when they first went on a nursing strike and while it helped my supply and seemed to make them nurse better, it gave them terrible gas so I had to stop. Right now I'm pumping about 46-50oz/day and they are each getting 6 bottles of 4-5oz, plus the 1-2 nursing sessions.
I kind of rambled a whole lot here so here are my questions:
1) Could an upper lip tie cause reflux and gas?
2) Any advice to help convince them to nurse more?
3) Any advice to help get rid of the nipple shields?
4) Any advice to help keep up my supply without taking fenugreek?
5) Do I need to be doing an elimination diet or is that totally irrelevant? There doesn't seem to be much scientific evidence for it.