Residual tongue tie, lip tie, high palate. :drop

[@llli*joe.s.mom]

My second baby Maggie was born with a pretty bad PTT, upper lip tie, and high palate. Lucky me. My nipples were shredded and bleeding within a couple of days and I was in a lot of pain. Maggie also didn't regain her birth weight very quickly despite my OALD and ample milk supply.

Her tongue tie was clipped but the ENT warned me at the time that it was a very thick one and she would do the best she could, but that there would still be some tightness. She said the frenulum could only be fully clipped under general anesthesia.

The clip itself was a breeze, but Maggie didn't eat much at all for 24 hours and had me in a pretty major panic. After that clip, our latch improved and Maggie started putting on weight, so that was great. She has gone from 7 lbs at birth to 11 lbs 10 ounces at 2 months. She's chubby and thriving.

But while my nipples have healed up, the latch is still not great! My nipples come out blanched, creased (lipstick shaped), and sore. Nursing is uncomfortable, and sometimes pretty pinchy and painful. But I'm not blistered or bleeding anymore. So it feels sort of barely tolerable, but only if I think it's going to get better over the next few months. No way I want to nurse her for two years plus with this level of discomfort. Positioning Maggie perfectly helps a lot, but it's getting harder to do now that she's bigger and wigglier, and also, I have a three year old! I want to be able to nurse Maggie at the computer, in a side lying position, while walking around, in a carrier, any old place. I can't always nurse her in the perfect reclining position. I need to be able to do a "lazier" latch if at all possible. But right now, when I get lazy, it often just HURTS.

So I went back to the LC yesterday, and she had Maggie suck on her finger, felt around in her mouth, and examined our latch. Her conclusion - (a) she still has a tongue tie and it's preventing her from lifting her tongue up very much, so her tongue is rubbing back and forth on my nipple (which is EXACTLY how it feels too btw); (b) she still has a high palate and she's pressing my nipple up against it, leaving it creased; (c) the upper lip tie is preventing her from fully flanging out her upper lip, which adds to the pinching sensation. She was thrilled that Maggie is clearly getting so much milk, but commented that she looks like she's "riding the letdowns" and it's a good think I have OALD (this suggests that if my OALD calms down she might have a harder time, but with Joe, I pretty much had heavy letdowns up until the very end so I'm not so worried about that).



Despite what the ENT said about needing to put Maggie under general to do anymore clipping, the LC says I should go back and have her examine Maggie and confirm that conclusion. Maybe if she saw how tied she still is, she might be willing to clip a bit more. I'd rather suffer a bit of pain than put Maggie under general anesthesia at 2 months old, needless to say. She also suggested shopping around for a diff't ENT who might have a diff't conclusion.

And she suggested looking up a pedi dentist with a laser that might cut the lip tie. The nearest one who regularly does this is about an hour from us, but that's not that big a deal.

But with the high palate, it's possible that I could have both ties clipped and still be in some degree of pain nursing. And there is the possibility that Maggie's latch will naturally improve as she gets older. However, there is also the possibility that it won't, because the problem could be caused by the way she moves her tongue, rather than the size of her mouth.

So that's where I'm at right now. I could wait and see if things improve on their own, or I could start investigating more medical intervention. At this point, I'm pretty sure I don't want my tiny baby put under general anesthesia to clip a tongue tie that MIGHT be causing a tolerable degree of discomfort. If she wasn't gaining weight, or if I was still bleeding and blistered, maybe. But we are pretty close to a "good enough" latch here, so the costs/benefits are different. But it might be worth going back and seeing if they would clip just a little deeper? And the lip tie could be cut with a laser. It would be a massive hassle to all of this, and I'm wondering if it's worth it.

Has anyone had a badly tongue tied baby whose latch improved over time? Or does the tongue tie mean painful latching forever? I can totally handle our current latch for another month or two, it's not that bad. But I'm freaking out at the idea that she might still be latching like this as a toddler, you know? Any experiences or ideas?

[@llli*mommal]

I never found out for sure if my first LO was tongue-tied. If she was, it was a subtle tie that 2 LCs failed to detect. However, she had a very short tongue- it just barely covered her lower gum line when fully extended- and there may have been some sort of posterior tie. She also had a super-high palate. That kid tore. my. nipples. UP. My LC, who happens to be nationally known, said they were "the second worst she had ever seen". I'm not trying to brag. What I'm trying to say is that even though I did nothing about my kid's mouth, no tongue tie clip, no lasers, nada, her latch did eventually become both effective and pain-free. I know it's hard to believe, especially if you've never had the experience of nursing through continued nipple trauma before, but as the baby's mouth grows the latch just gets better. Bigger mouth = deeper latch with less effort. At 3 months old I was barely making it through each day. By 4 months I was resolved to nurse on deep cracks for exactly one year, and not one day more. By 6 months I could not believe now much better things had gotten. By 10 months I was totally revisiting my 1 year goal and my assumptions about how much fun nursing could be.

You've been such a trooper through all of this! I think you just need to keep on soldiering through, and I am sure that things will improve even if you do nothing. The one concern I have is, what if one day your supply declines to a more normal level and Maggie just isn't able to suckle well enough to boost it back up? It's concern over that possibility that might send me back to the ENT.

[@llli*aphimama]

Bigger mouth = deeper latch with less effort. At 3 months old I was barely making it through each day. By 4 months I was resolved to nurse on deep cracks for exactly one year, and not one day more. By 6 months I could not believe now much better things had gotten. By 10 months I was totally revisiting my 1 year goal and my assumptions about how much fun nursing could be.

This was my experience with DD1. Mostly with the high palate. As she got bigger, the latch got better.

My pediatrician has said that no ENT worth their degree will clip a lip tie because it's what he considers major surgery for minor (and not definite) results. DD3 has a prominent lip tie and I've been going back and forth on whether or not to press the issue. So, I'll be eager to hear other responses as well.

Are you at all concerned about maintaining supply or mostly with finding a more comfortable latch? If it's the latter, I do believe that time will improve the situation. If it's the first, I'm trying to figure the answer out, too.

[@llli*krystine]

My daughter has a very high palate and had posterior tongue tie. Her TT was clipped by an IBCLC MD (breastfeeding medicine specialist) and frankly I don't think it helped that much, at least it didn't help her be a more efficient nurser. I don't think it hurts to get it clipped, though, and I would definitely ask the ENT again. I don't know why she'd need anesthesia for it, though. My daughter didn't have anesthesia whatsoever (she was in a little baby straight jacket restraint thing), the doctor said it's somewhat hard on babies to be anesthetized because then they can't nurse afterward.
For maintaining supply, I did pump a ton (8-10x/day the first 9 mos then gradually tapered off) but that wasn't just because of the tongue tie/milk removal (really more because of her 5 mo nursing strike), but I know that helped. I do think as she gets older and bigger things will get easier. Sorry I don't have a more clear answer and feel like I have been rambling.

[@llli*browncow]

BTDT twice now I think you probably know most of my story. Trying to get DD to bed but I'll be back with my thoughts!

[@llli*TimsMom]

DS had a really pronounced tongue tie that we finally had clipped at 2 years. The pediatric ENT started to ask me a lot of questions about his speech until he opened his mouth. As soon as she got a peek, she said that it clearly needed clipped. His latch looked good but hurt and was causing damage the first month. By the second month, I wondered why I'd been worried about tongue tie.

At 2 years old, they'll only clip them under general anesthesia, so it was a kind of big event. It didn't seem to bother him at all though.

[@llli*joe.s.mom]

Thanks everyone! At this point, I'm mostly worried about the comfort of our latch, since Maggie seems to be getting plenty of milk (and my supply is holding up great). But I realize that transfer could be more of an issue in the future, and I definitely want to prevent any problems from cropping up. I'm also not *that* worried about speech, because the tie is posterior and after the first clip, she can stick her tongue out and raise it up, just not as much as she should be able to, perhaps. But you'd never know she had a tie based on the way she moves her mouth and tongue.

Sometimes I latch her on, and everything is just totally hunky dory, and I think "what was my problem? this is great!" Other times, it hurts, pinches, and it's like "why haven't I dealt with this already?" So I'm constantly second guessing myself, you know what I mean?

At this point, I think I will make a few calls and schedule some appointments, probably a couple weeks out. If our latch is a-okay by then, I can always cancel. We're at 2 months now, so I figure if it's not better by 3 or 4 months, that's a bad sign.

[@llli*browncow]

Sometimes I latch her on, and everything is just totally hunky dory, and I think "what was my problem? this is great!" Other times, it hurts, pinches, and it's like "why haven't I dealt with this already?" So I'm constantly second guessing myself, you know what I mean?

At this point, I think I will make a few calls and schedule some appointments, probably a couple weeks out. If our latch is a-okay by then, I can always cancel. We're at 2 months now, so I figure if it's not better by 3 or 4 months, that's a bad sign.

I was hoping I might get to a computer to write this but it doesnt seem to be in the cards today. Hopefully this doesn't turn into a novel

I can totally relate to there sometimes being a problem sometimes not. We still get that way at 7 months. Are you sore when she's not latched? I was continually sore while nursing DS though never cracked or bloody. I'm convinced it was due to his lip tie, but I guess I'll never know for sure. I had DDs lip clipped at a couple of weeks old and was able to resolve the soreness but not the uncomfortable latch. Even after having her posterior tt clipped later we go through periods where we struggle. It's never been the easy nursing relationship I had hoped for but it is much better.

So all this rambling to say *in my experience* they don't always grow out of latch issues. As scary as anesthesia is *I*would take the literally 5 mins under general anesthesia to a years worth of latch issues again in a heartbeat and will again with any subsequent children. I think it's a good idea to have it looked at again!

[@llli*indigoelectron]

I'm sorry things are so hard for you. I have just posted a thread on here about how it finally got better for us around 4 months. Interestingly I noticed yesterday that there seems to be some degree of lip tie, but I'm not planning to do anything about it at the moment, as nursing gets better all the time. I hope it improves for you soon (and I have copied the link to my story below, in case you are interested) xx

http://forums.llli.org/showthread.ph...17#post1288717

[@llli*joe.s.mom]

Of course, now that I've posted about it, I'm feeling like things are finally getting better! More feedings are totally effortless (and painless) now than before. Maybe there is something magic that happens around 10 weeks?