please help, in agony, lip tie?

(25 Posts)
dobedobedo Fri 16-May-14 13:23:38

Hi,

Ds is 5 days old and feeding him is excruciating. Exclusively breastfed so far. I can't get the latch right. It's like his mouth just won't open wide enough to take in much more than nipple. They checked him for tongue tie in the hospital and said he didn't have it, but I've just noticed that his top lip is joined onto his gum, where his teeth would grow! Is this tongue tie and is this why feeding him is so hard?

I tried a nipple shield thinking it wouldn't hurt, but it was worse. I even saw the tip of the shield fill with blood before any milk got there. sad

I don't know what to do. I don't want to give formula, I feel very very strongly about that.

Ds seems happy and satisfied after feeds. He sleeps well, is alert a lot and has millions of wet and dirty nappies. He hasn't been weighed since birth (he weighed 7lbs 13oz).

What can I do? I feel this is urgent. All I do is cry because I don't understand why I can't feed my baby!

This is my second ds. Ds1 is 9 now and I breastfed him for nearly 3 years, also exclusively for 6 months. I should be able to do this. I'm just so upset. sad

NickyEds Fri 16-May-14 14:36:25

Nightmare.Poor yousad.
Are you seeing your midwife today or tomorrow for weighing and heel prick? If not ring the community mw and ask to be seen. Get the tt rechecked and the lip tie looked at. Please don't be fobbed off by hcp saying everything's looking good when clearly it's not.
You're an experienced bf so know that nipple shield filling with blood isn't right. LLL???
I'm really feeling for you. Please don't put too much pressure on yourself- every birth is different and your baby has to learn too. Noone "should" be able to do it, it's hard and if a lip/tongue tie is making it harder you need some support to get it sorted.
Get on that phone and rally some rl support.

crikeybadger Fri 16-May-14 14:49:18

From what I've heard, lip tie can be associated with posterior tongue tie which is harder to spot. It will need someone who really knows what they are doing-infant feeding specialist perhaps?
Of course it might not be, but when pain is this bad for you, then something needs to be investigated.

Hope you can find some real life help soon.smile

dobedobedo Fri 16-May-14 14:57:07

Thank you. I'm trying to pull myself together enough to call the midwife, at the minute I can't stop crying long enough to get a sentence out.
God I feel so pathetic.

MrsNoggin Fri 16-May-14 15:07:15

Lord, don't feel pathetic. You only gave birth the other day, being up and about enough to be on MN is an achievement! The midwife should be able to help. She should be able to watch you latch and give you advice. And they won't mind at all if you cry down the phone to them, I imagine they are more than used to it, I've certainly done it at least once in my life wink.

NickyEds Fri 16-May-14 16:08:17

Don't worry about the crying! When DS was about 7 days old I couldn't get a sentence out for crying - just managed a "yes" when she asked if I wanted to be seen. They really are used to it. You are NOT pathetic-it's really, really hard what you're doing- It was day 21 for me before the crying stopped- including one particularly bad afternoon when I cried all the way through Chicken Run.
Time to call the Midwife.

infinitemonkeys Sat 17-May-14 11:30:23

My baby had this! You poor thing - it hurts like hell. It also made him really, really windy as he couldn't get a proper seal when he latched on and so was gulping air. Oh god those days were dreadful. I don't live in the UK but it took me until he was 12 weeks to get someone to pay attention to me and cut his lip tie (no anaesthetic - just a quick slice with a cauterising scalpel and straight onto the boob) and it was like feeding a whole different baby.

Can you flange his top lip out at all? What helped me in the long interim period before getting it snipped was sort of flipping his top lip out as best I could once he'd latched on. here's a link with a pretty good picture of lip tie, so you can have a look.

I've heard very good things about Malcolm Levinkind in London - he's apparently an authority on ties.

Put lots of Lansinoh on after every feed. It got better for me when he got a bit bigger and could open his mouth more, but the first few weeks were horrific - nipple shaped like a lipstick after every feed and with white patches where he'd clamped down and cut off my circulation.

This isn't you doing anything wrong - it's bloody hard to BF a lip-tied (or tongue-tied, which he probably has too as the two go hand-in-hand) baby, and you're doing really really well to have got so far. Please get some RL help - La Leche League are fab, as are milk matters in Yorkshire.

My LO is 13 months old now and his lip tie has actually re-attached, but his mouth is bigger now so it causes no problems, and we're still going strong (he's never had a bottle), so you can get through this. It's just going to be a bit harder than last time!

infinitemonkeys Sat 17-May-14 11:31:27

Ooh - also - try the flipple technique. It worked for me before I got DS's tie snipped. Wishing you lots of luck!

Jellybellymummyofsix Sat 17-May-14 12:39:47

How are you today op?

I've had 2 babies with lip tie & tongue tie.

With ds i didn't get help & ended up expressing.

With dd 13 weeks I realised within a day of her birth. She was able to latch unlike ds. Everyone said dd didn't have tongue tie only lip tie. It's very unusual to get a lip tie but no tongue tie. I went private in the end. Your an experienced mum. Don't doubt yourself!

Let us know how you get on.

TwoPerfectGifts Sat 17-May-14 20:46:29

My sympathies.

5-week-old DS had his (anterior, so they said) tongue tie divided at two weeks old at the hospital. They confirmed he has an upper lip tie as well but they won't divide these.

I've emailed a doctor and a dentist mentioned on MN; I have yet to hear back from the dentist, but was told by the doctor's secretary that he no longer divides lip ties as it goes against NICE guidelines.

I think it'd be a good idea for an experienced specialist to check your DS for tongue tie - midwives missed DS's and my older DD's went undiagnosed even though I thought she had one and asked a lactation support person and my GP about it.

dobedobedo Sun 18-May-14 05:24:40

Hey. Thanks for the advice!

I've Google the flipple technique and it does help a bit. Also am leaning back so as to try and stop him slipping off as the feed progresses and let down kicks in. It's helping. That first minute of feeding though is just blinding.

The midwife came out and she said yes he has definite lip tie but she can't see how that affects feeding and they don't really do anything for that. She didn't see tongue tie until he started crying and then she said that it seems he does have tongue tie as well, but it's not "too bad". (tell that to my nips!)

Anyway, she referred us to the ENT tongue tie specialist for him to have a look and to treat it if it requires.

When ds had his five day check yesterday he'd actually put weight on! So it's obviously not bothering him. I collected some milk and tried to cup feed him, but he just kept giving me a "what fresh hell is this?" face, before spitting it out or choking and crying. I couldn't stand it so I just had to bf him.

I hope the appointment from the referral comes through soon though. I won't even complain about the no sleep if we can just get this sorted.

McBaby Sun 18-May-14 05:49:33

It is v difficult to tell if a tongue tie is bad or not from just looking at it. As it depends how tight the frenulum is ad how it restricts the movement of the tongue.

DD1s tongue tie was missed till 8 weeks as it was hard to see and I was told by numerous people it was only minor. I was in agony and her tongue function was so poor she couldn't cover her bottom gum when feeding so bit through every feed which was why it was so painful.

DD2 now four weeks tongue looks similar to me abd the lactation consultant confirmed she has a tie but she has good movement including v good elevation and forward motion and it doesn't hurt me so it doesn't cause us a problem feeding.

minipie Sun 18-May-14 20:20:58

What everyone else said. Lip tie probably means posterior tongue tie is also there. NHS won't cut lip tie but will cut posterior TT. Can't tell how "bad" a TT is by looking as as the effect depends on mouth shape and size, nipple shape and size, etc. TTs can also cause problems longer term with feeding, speech, dental development if uncut.

Sounds like you are on the right track with referral to ENT - hope it comes soon, and don't let them tell you it's not "bad enough" to cut. The cut is a minor minor snip that takes 5 seconds, if done at young age.

Frusso Mon 19-May-14 18:34:34

My ds has a very thick upper lip tie. He also had a submucosal tongue-tie that was missed in hospital, but finally cut at 12 weeks.
I had to really pester them to cut it because he was gaining weight.
His latch isn't brilliant now, but it's not agony anymore.

TwoPerfectGifts Mon 19-May-14 20:47:05

Any joy with the referral, OP?

dobedobedo Mon 19-May-14 20:56:28

No, I haven't heard yet but I expected to hear Tues or Wed of this week. A postnatal support worker came out to give me some latch advice which helped a bit but she really thinks that the hospital won't do anything because she thinks his tongue tie isn't bad enough sad She thinks when he gets bigger and his mouth gets bigger, it will sort itself out.
There is a midwife coming out tomorrow so I'll get her to chase up the referral. Even if the midwife or support worker don't think it's that bad, I still want it looked at by a tt specialist, to be totally sure.

I gave the worst damaged nipple a day off (just hand expressed to help engorgement on that side) and it's helped a bit. Also the flipple thing helps if I can get it right. It's a skill to get right!

TwoPerfectGifts Mon 19-May-14 22:02:40

Have you thought about taking a pic of the damaged nipple? Obv you need it to get better, but they need to see how bad it got.

I think you need to emphasise that, however the tie might appear, your subjective experience is one of agony.

They are supposed to be supporting BF and one important way of doing that is to ensure you don't quit because of intolerable pain. The baby gaining weight doesn't alter that.

Could you go private if needs be?

mawbroon Mon 19-May-14 22:20:14

Urgh, all these HCPs who judge a tie by appearance sad angry It gives me the rage!

It is bugger all to do with how it looks. It is all about function and anyone judging on appearance does not fully understand about ties.

Is going private an option? To someone who knows what they are doing, rather than risking an incomplete revision (it happens)

It's what I would do if I had DS1's baby days again. Where are you based?

MoreBoober Mon 19-May-14 23:22:58

I don't know where you are but Mrs Lawson at the RVI in Newcastle upon Tyne divided both lip and tongue ties on my DS and DD on the NHS. In both cases it improved very poor latches to ok ones. I still rely on shields though. I use a mix of Boots and Medela shields which helps.
I too still get the misshaped and white nipples. I also had a blood blister which bled badly with my DD at the start. You do need to be very bloody minded to persevere. I fed my DS till he self weaned at 11 months and I'm currently feeding my DD who is now 18 weeks. Push hard for help in my experience there are not many knowledgeable professionals on the subject.

TwoPerfectGifts Mon 19-May-14 23:40:07

How recently did you manage to get a lip tie divided, Boober?

infinitemonkeys Tue 20-May-14 11:46:32

Just popping back to this thread to see how you're doing, dobedobedo. Glad to hear the flipple technique is helping. I've been having a think about what else helped DS's latch a bit with his ties, and biological nursing (daft name for it) helped, too. Link here: www.llli.org/faq/positioning.html

Hope this is vaguely useful!

dobedobedo Tue 20-May-14 16:32:15

Thanks everyone! I will also check out that biological nursing link.

Private is an option if necessary - can't really afford it but this is very important to me so we'd make sacrifices if we have to. Thankfully I have been referred to tt specialist (someone called Mr Lee, I'm in Northants) so hopefully that will come through soon.

Feeding continues to hurt like a bitch, especially on latch. And it does take a few goes to get an acceptable latch. The midwife today did tell me that my flipple technique is getting pretty good grin

MoreBoober Wed 21-May-14 23:21:24

Good to hear your persevering OP and have got an appointment on the cards grin

TwoPerfectGifts
My DS had TT divided at 14 Days Jan 2011 and lip done at just over two years in Jan 2013.
My DD had her TT done at 3 weeks and her lip at about 8 weeks (start of March 2014)

TwoPerfectGifts Thu 22-May-14 01:30:17

Yes, OP, 10/10 for sticking at it! I've been there with the 'grit your teeth and count to ten' latch and the minute of suffering; it takes great fortitude to go through that several times a day smile

TwoPerfectGifts Thu 22-May-14 01:46:55

Oh, and Boober, thanks. That's interesting that you got a lip tie done this very year on the NHS. (I'm looking at £400 to get it done privately as that's seemingly my only option.)

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