Help! tongue tie and diminishing supply?

[Wingdingdong]

Apologies in advance this is long - I'm desperate.

DS is now 15w. I had no problem feeding him at first; it hurt but then you'd expect that in the first few days. He was 8lbs 9oz at birth (39w, ELCS). By day 5 he was 9lbs, by day 13, 9lbs 11oz. It continued to hurt, I knew there was something wrong with the latch but couldn't figure what.

Eventually after a bout of mastitis at 6w which I could feel coming on but couldn't avoid, I found a BF counsellor with some experience of tongue tie who thought he had a posterior one and recommended a lactation consultant. She diagnosed 65% posterior tt and we had it snipped - he was about 10w by then.

The snip was partially successful - he has more movement but still restricted. I am still in agony with most feeds, my nipples are blistered, cracked and bruised. DS still can't latch efficiently - still slips off, leaks milk out of the side of his mouth, clamps/compresses, etc. He is still tracking just below 90th centile though, and whilst the HV/GP have been very sympathetic to me, I get the impression that they're at a dead end just because he's not losing weight.

That's because I have always had fast let-down (interestingly he swallows well at the beginning of feeds and only chokes/gags after the halfway mark) and a lot of milk, and I feed him frequently. I fed DD for a year, she had severe reflux so it was constant feeding, I pumped for the freezer and I also donated to the NICU. I had intended to pump for the NICU again this time and started off doing so - around 3-4 oz from each side from 8 days on. DS also has reflux, also on omeprazole though I'm wondering how much of it is genuine reflux (DD still has at 2.11, so definitely not related to BFing) and how much it could be due to tt issues. Again, I don't think let-down is a factor for him, if anything that seems to be what's allowing him to feed.

The problem now is that I think my supply is diminishing. I had to stop expressing for the NICU because a) mastitis and antibiotics and b) time - DS's feeds are now around 90 mins apart beginning to beginning, and I spend half the intervening time slathering lansinoh and hydrogel patches on my nipples... I'm still pumping for DS in the vain hope that one day he'll take a bottle - we try daily but he can't seem to close his mouth, he usually gags. The other day he took 2oz, then gagged and vomited the lot back up. However, whereas I used to pump 3-4oz, I'm now getting 1-2oz each breast. I've just tried again and got 1/2 oz. By this stage with DD I was getting 7 or 8 oz each side.

WTF is happening and how can I do something about it? DS is still piling on the pounds but the time between feeds is decreasing, his poos are explosive and watery dark brown (but not quite green yet), and I think he's probably not draining the breast - but I can't bear to touch them after he's finished, so pumping afterwards is not an option.

We've been referred to Southampton Hospital now, just waiting for an appt, but in the meantime, what to do? I HURT and the milk's running out!

if you've managed to make it to the end of this epic, thanks...

Your supply could be settling down hence being able to pump less. Do you express any where near as much as you did with your DD?

I've had similar issues - TT, reflux and over supply. Once I got to 4 months I felt that Dd wasn't taking enough milk but her weight was fine so she was. I just felt fuller. It was a bit worrying even though she's my second. She fed less than DS, got very distracted and took ages to get used to feeding post TT snip (hers was at 12 weeks). Even now at 27 weeks she's still not great but my massive oversupply and letdown mean we can get away with it.

Nowhere near. 7 or 8 oz each side, each time with DD. I'd pump once a day, in the evening - two 3-4 oz bottles for the hospital and two for DD.

The amount he's now feeding, if he was feeding efficiently, my supply should have increased

Sympathies - I have first-hand experience of a baby who's thriving despite being tongue tied, and despite having a mother in agony with nipples in shreds! Putting aside my own story:

For the immediate future - can you hand express? That way you might be able to work around the pain. The suction cups on manual/electric pumps can do as much or more damage than a baby. Using your hands means you're in control of the area and pressure. Have a look at video about the Marmet technique. Try to express at least 8 times a day (including overnight). Exhausting I know. Bear in mind though that the amount you express doesn't really have any bearing on the amount DS might be getting. Some days you might find you can express more than others.

Get someone to pick you up some moist wound dressing from the chemist (something like Jelonet - others are available!) - stick it on between feeds. It can work wonders. If one side is worse than the other, try hand expressing from the 'bad' side while continuing to BF from the other, to give it chance to heal, then swap over. It can take a while for severely damaged nipples to heal, but 24-48 hours can make a heck of a lot of difference.

Rather than wait for a referral (or while you're waiting at least) - can you go back to the lactation consultant? Tongue ties can grow back, or as you say, it may not have been fully snipped in the first place. If feeds are still taking 90 mins it would definitely suggest he's not transferring milk as effectively as he could (add in the refluxy symptoms etc and it's almost certain).

Be bothersome - go to drop-ins, see BF counsellors, ask every person to can to watch a WHOLE feed.

Feed in a reclining position so your milk has to flow uphill, (have a look at Biological nursing - this sometimes results in a deeper latch as baby is in charge.
You could also feed lying down so he can let excess dribble out the side of his mouth. Try catching the fast flow in a muslin after DS has triggered your let down.

I'll continue to think on, but this is an epic reply to equal your epic post. Keep your pecker up and stay on this board as there are some fab folks who'll come along with more advice I'm sure!

The expressing might just be your supply settling down. But it is common for tongue-tied babies to gain fine at first due to oversupply/fast let-down and then tail off at 3-4 months once your supply settles.

I was in a great deal of pain for the first 10 weeks till my daughter's tie (also posterior, not even visible, only found by palpation) was cut but fortunately was done right first time.

Nipple shields aren't great long-term, and I didn't need them after the first week (only used them to help her learn to latch as she was born early, without her final suckling reflex) because my nipples weren't externally damaged, but maybe you could use them till they can resnip it just to protect yourself a bit?

Medela Contact ones are the best I heard of, very thin and have a cut-out section so they can still smell your breast.

The thing is, he's ok. So your supply itself must be fine. So I wouldn't worry there. You said that DD had severe reflux - so her extra feeds little and often would make a huge difference.

The explosive poo - could he be reacting to something in your diet? Or the antibiotics?

Thanks everyone who replied. I did read them all but have been busy chasing hospitals and being passed from pillar to post, not really getting anywhere... Also bizarrely, after a few days of virtually zero milk from pumping, it was back to normal, 4 or so oz per side per pumping session. I have absolutely no idea why. I managed to squeeze in one extra expressing per day for two days, simply didn't have time to do more between feeds, nappy changes and looking after both kids. I don't think one extra pumping would have made such a drastic difference, especially as I got so little I didn't even bother to keep it . Then 2 or 3 days later, the bottle just kept filling...

To clarify (in case somebody else is in a similar case and stumbles across the thread) the feeds aren't taking 90 mins, they're 90 mins apart start to start. I tried nipple shields (lactation consultant advised, even provided/supervised) but DS absolutely refused. Even the LC admitted it was no go.

Since then we've made some progress. Some days we go a couple of hours between feeds - even three hours if he has a long nap or at night. He has taken a bottle a couple of times but it's hard work. He's happier to take it AFTER a feed, ie when he's not hungry; seems he needs a lot of time to work out how to get the milk out. Mostly you can see that he's flicking the teat out of his mouth sideways with his tongue tip and then getting very frustrated. However, now he's 4m, he's literally grabbing the bottle with both hands and shoving it into his own mouth. It's really hard and time-consuming though. Breastfeeding is still painful and he's still choking towards the end of feeds. The pain's not as bad as it was, 7/10 as opposed to 10+ (I normally have a high pain threshold, didn't need painkillers after c-sections, walked around for weeks with slipped discs, etc - this is almost certainly the worst pain I have ever experienced). The latch seems to be improving. The fact that he sticks his hands into his mouth at every opportunity and pulls his tongue around is probably helping, he seems to be loosening his tongue himself.

The hospital's being useless - got referred back to Kings, who won't see us (with GP referral) unless we also have letter of summary/diagnosis of continued tt from LC (though the team leader did ring after hours and offered to arrange an appt at a private clinic elsewhere without documentation for £130... ). LC won't provide this so it's stalemate. However, she is coming to see us again next week. I can see her POV, she wants to finish the job - but from our POV we can't afford to keep calling her out for assessments, frenotomies and then follow-ups. I also wanted somebody else to confirm it was absolutely necessary before doing it again. She's obviously going to say that it is because that's all she can do - and it may well be the case but for my peace of mind I'd rather somebody with no interest has a look and says that's the only solution. I really can't bear to put DS through it again .

Come and join the tt babies support group on fb.