Posterior tongue tie, recessed jaw/ small chin, high palate, disorganised suck - any stories of hope?

[mrsjohno]

DD2 seems to have a range of physiological issues that are making breastfeeding nigh on impossible and I am desperately hoping someone might be able to give me some hope.

Had difficulties feeding DD1 in the beginning (couldn't latch due to my inverted nipples) but she latched after a month and she's still breastfeeding (2.5 yrs)

DD2 latched on straight away (stretched out nipples thanks to toddler) and we sighed big sigh of relief. However, became clear all not well when she started clicking, was unable to stimulate let down by herself so I would have to do constant compressions etc and LLL friend confirmed posterior tongue tie which she had snipped at 3 weeks.

She's always been sleepy but got worse, GP sent us off to a&e, she was admitted as they were concerned sleepiness due to insufficient intake, had gone down 3 centile things, ended up being tube fed expressed milk (by that point my milk supply had regulated and I think was fairly low). We were discharged 2 days later bottle feeding expressed ebm.

Have been trying to breastfeed before each bottlefeed/pump but she can't really manage it (6weeks tomorrow); she just can't sustain a nutritive suck presumably as not enough stimulation of high palate and can't get the milk flowing herself. It's worse now my milk has regulated (though I have plenty - pumping about 900mls a day) and my boobs feel like sandbags, so she doesn't have engorgement against her tiny chin and the milk pouring easily into her mouth.

Anyway, has anyone any similar stories? Am determined to breastfeed her somehow (not least as it should help strengthen her tiny little jaw). Any recommended techniques/ bf specialist who could help? And how long did it take to get back to bf'ing if you had success?

Sorry, long post ...

[Monikita]

I know what you're going through. Both DD1 and DD2 had/have the same plus an upper lip tie (preventing them from creating a seal).

DD1's issues finally resolved around 23 weeks after getting her tongue and lip ties lasered at 21 weeks (she'd had 2 previous botched snips before then).

We did a lot of suck training, which I'd do before each feed - there's a video of it on vimeo if you google luna lactation video.

We went on to bf until she was 14 months. She self weaned then as I was around 20 weeks pregnant - so it can happen!

You may want to get her tongue checked by an IBCLC who is knowledgeable about ties to make sure it hasn't reattached (if you're in London, I've heard good things about Katherine Fisher).

Currently going through it all over again with DD2. We got her ties lasered at 11 days old, then she had breast refusal for another 3-4 weeks. Finally started making progress and got her to the boob a couple of weeks ago and then her latch suddenly deteriorated - she does have a cold at the moment so am desperately hoping she hasn't reattached.

Hope you can make progress. The suck training really helped DD1.

[Monikita]

If you can get in touch with an IBCLC, nipple shields may help to stimulate your DD's palate.

[mrsjohno]

Oh my goodness, thank you for your reply! But sorry you're going through it again. And yes - we have an upper lip tie too (I hadn't thought that important as DD1 had one too and didn't seem to stop her, but it obviously is all part of the problem with DD2)

Did/ do yours have small chins/ recessed jaws too? Is it a matter of growing? Had looked at suck training (am inspired to do now) and taken to an osteopath but never sure if it's a load of crock ... And yes, we're going back to see Katie Fisher as she was the one who did the original cut.

Are you pumping/ topping up too? With every bottle my heart sinks as she's getting used to a whole new way of feeding not on the breast but her weight has stabilised and she's perky and smiling so I can't not do obviously. Hope we can go less and less on the ebm top ups as she grows ...

Good luck with yours - and thank you for the inspiration!

[Monikita]

Yes, both recessed jaws. Took DD1 for lots of osteopathy -have no idea if it worked.

Took DD2 for 2 sessions and saw a difference after the second session - again, not sure if this was a coincidence.

DD1 stopped having a recessed jaw about a month after the final revision.

Unfortunately I'm pumping full time but offering the boob at every feed (except at night). She no longer has an aversion and is quite happy to try for a while, bless her but like you can't get a letdown.

It's so frustrating because last week she was getting 3-4 letdowns on my left boob and then her suck suddenly became disorganised.

[LionWings]

Have you tried the flipple to get a deeper latch?

Also instead of bottle feeding you could consider a supplemental nursing system which would keep her interest in bf.

Hope things improve for you soon

[madwomanbackintheattic]

Was also going to discuss supplementer.

I contacted the nct breastfeeding counsellor locally who was able to put me in touch with their national experts on breastfeeding babies with additional needs. All sorts of magical help. There will be an answer.

Good luck.

[ZingOfSeven]

posterior tongue tie and highly arched soft palate here (DD).

TT was sorted by small op and she had 2 cranial osteopathy sessions to sort the palate problem.

2.5 now and perfectly fine. good luck to you

[ZingOfSeven]

I live in Surrey, if you live near PM me and I can give you contact details for both the surgeon and the osteopath

[mrsjohno]

Sounds like we're in very similar situation, Monikita. Am finding am prob not pumping enough with trying her on each time and then by time have given her a go, fed her top up, pumped, am about 4 hours after last pump, so panic about long term supply and pump again in between times so she then doesn't have much to practice on next time if that makes sense ... Plus desperately need to have time to spend with toddler who is basically motherless at the moment ...

Interesting about the osteopathy, will PM you, zing, thank you. Our osteo (who is v good one) has said he thinks it's more to do with her needing to build strength and vigour (she's still quite a sleepy, chilled out baby)

Have tried sns but as she can't suck strongly she doesn't get anything so I have to squeeze the bottle constantly and she doesn't get much over a long period of time. Then miss a pumping session etc. Also quite a pfaff to use each feed but can see how would avoid the dreaded bottle ...

Aaahh go through periods of feeling 'we can do this' and then periods of utter despair and exhaustion!

[Monikita]

Am extremely lucky Mrsjohno as my parents live a 5 min drive away - my mum helps feed DD2 while I pump, although to be fair I'm still pretty immobile 7 weeks on from a difficult birth. DD1 also goes to a childminder. Do you have family who could give your toddler a bit of fuss?

I also have an sns and ended up in tears every time I tried to use it - extremely frustrating and I end up with milk everywhere except in the baby!

Think I'm going to have to bite the bullet and face up that the tt's reattached. If I wait a bit longer I'll be able to give calpol so hopefully she won't be so sore afterwards and won't have breast aversion again.

Totally understand the switching from optimism to despair. I know people think I'm mad for persisting as well - probably on the cusp of pnd. The thing is that when the feeding was improving, that's what helped my mood and also coping with physical pain.

It's a bloody nightmare.

[mrsjohno]

Oh Monikita, I completely totally utterly understand. When DD2 manages even some swallows I have this feeling of contented bliss (and I think she does too) and I think I can keep going. When she doesn't then I feel utterly dejected and also verging on depressed.

My mum is over staying with us to look after toddler so it's a juggling act of keeping toddler entertained (along with her constant requests for boob) and helping feed/ hold/ sterilise etc.

I think it's amazing you did this for your first too, though, and that must give you some hope? I'm hoping it's all about them getting stronger, mouths and chins growing etc. - to be honest I'm thinking about just pumping exclusively for now and giving up on the boob (so I don't lose supply with all this haphazard expressing I'm doing) and retrying when she's older. But then there's the risk she won't be having any of it after a long break ... Gah.

If you'd like to stay in touch, please do - I feel so much less isolated knowing I'm not the only one doing this x

[Monikita]

Of course! Feel free to pm me. Forgot you were tandem feeding - that is extremely difficult.

I think you can relax a bit about the pumping now that your supply is well established. I read that 6 times a day including a night pump keeps you going. If I miss a feed I do a mini power pump at the next one (normal length pump, rest 5 minutes, 10 minutes pumping). If I really want to boost my supply quickly, I do proper power pumps in the evening (10 pump, 5 rest, repeat twice).

Even though it's a faff, it is good to keep trying her - even if she doesn't suck well, the oxytocin will help your supply (and she gets to practise).

Yes, knowing I managed it before with a much older baby does give me hope but it also means I'd feel really guilty if I didn't work through this with DD2 - like I was treating them unequally. I know that's daft - is what I'd say to someone else in my position but I can't accept my own advice!

[bazzaS123]

Just reading these posts-I'd love to know the outcome as I am really struggling to BF my 8 week old boy. No trouble with first 2 kids which makes it all the more frustrating! DS has a recessed chin and high palate. Had post Tt snipped on day 13 but I don't think it made a real difference. He's never been able to maintain a latch, on and off all the time. Weight gain is poor and he's now on the 0.4th centile having been born on the 25th. I'm feeding but expressing at night as he's too sleepy to BF then. Also expressing 2x in the day after feeds to top up. It's doing my head in! Just not knowing if he'll ever learn! I'd love to know whether you ladies managed to continue EBF and whether your babies learned to latch in the end?

[feelinginthedark]

Just read thread as had similar experiences with 2 DDs and wanted to say that a IBCLC gave me the okay to give 2 week old DD 1ml of calpol after her TT snip. I didn't have to, but my sisters DS had severe latch aversion after his TT snip and never got back to BF and I always wondered was it because he was in pain and would a smidgen of calpol have helped. So don't delay getting it re snipped if you think that is what it needs! (Long winded!)

[Kttttt]

Just wondering what your outcome was? I’m am experiencing a similar thing at the moment…