TT - What journey do we have ahead? Success possible?

(41 Posts)
Purplelooby Wed 19-Mar-14 21:42:04

DS was unable to BF due to posterior TT and upper lip tie (long, painful story)

DD was born 5 days ago and has the same. I've been referred for a TT snip and I'm currently expressing - she is being mix fed from a bottle until the snip.

A bit of detail: she can latch (more than DS managed! But then she's bigger) but incorrectly. She only has a small mouth and doesn't open it fully and doesn't put her tongue over her lower gum, rather sandpapers my nipple with it while she clamps on it. From the outside the latch looks lovely but even after the first feed my nipples were blistered and blanched. The pain is unbearable. I spent some time with a lovely LC who gave me exercises to train her (she can get her tongue to her lip) but basically felt that the level of nipple damage was much too high for successful BF. I did BF her for 24 hours after which time the end of my nipples were fully scabbed over. A couple of times a day I try to latch her I've twice had a good latch on the left (not right) and it feels so lovely, but these come with 'bad' latches and reattaching, which puts me out me of action while I heal.

So here's the question: have you been here? What is the chance that I can successfully BF after the snip? And given that she'll have been bottle feeding for about 4 weeks, will her latch just get worse? What journey will we have once the TT is cut?

I ask because I have an 18 month old DS and if I stopped expressing he would get his mummy back, but I'm willing to continue if there is a decent chance I can BF successfully. So please be honest for my DS' sake...

And yes I've tried Lansinoh sigh

fluffandnonsense Thu 20-Mar-14 01:13:21

Whereabouts in the country are you? There's a private dentist in Huddersfield who is highly trained in lip and tongue ties and cuts them with a laser. It cost £250 but they got us in within a few days. My DD age 9 weeks had hers done there yesterday and the difference in her latch already is amazing. It's gone from feeling like a million knives to being 80% perfect and 20% uncomfortable if she's tired and latching a bit lazily. I would def recommend you get it seen to sooner rather than later.

fluffandnonsense Thu 20-Mar-14 01:14:53

The dentist is called Cote Royd Dental (google it). Also just to say they won't cut a lip tie on the NHS so just getting the TT cut may not solve your problem.

minipie Thu 20-Mar-14 13:16:54

How long has she been on bottles already and when are you currently scheduled to get the TT snipped?

I agree that the sooner you can get it done the better. If you're in London or Surrey there is a surgeon (Graham I Smith) who does it privately for �80 (poss �90 now) at Kingston Hospital, appts available at short notice usually.

The nipple damage should sort itself once the TT is cut and the latch improves but the question is whether your DD will have switched preference to bottles in the meantime and will refuse to go back.

I think this varies from baby to baby tbh so other peoples' experience may not be yours. Some babies love bottles so much they won't go back, others love the boob and are happy to go back once latch issues sorted.

Can you try using nipple shields in the meantime? Closer to BF than a bottle and would protect your poor nips. But your DD may not be able to latch to those either I guess (worth a try though?) Or maybe a supplemental nursing system?

Medela Calma bottle is supposed to be good for replicating BFing so as to reduce "bottle preference".

Purplelooby Thu 20-Mar-14 13:49:12

Hi - I'm in the NW and there is a place near us who will cut TT (not ULT) for £180 but we really, really can't afford it. I know it's well worth the money so this is a real shame, but just not an option for us.

We are having it cut at the same place as last time (NHS). Last time we waited 13 weeks for a referral shock so DS was 14 weeks. Obviously we stopped long before that! This time the LC called the place directly to check and they estimated 4 weeks. We are also on a cancellation list but obviously this depends on someone cancelling.

I've been very tearful today because I'm not coping with the relentless expressing (only making about a quarter of what she drinks now). It seems so cruel. I desparately wanted to BF both of my children. The pain and expressing contributed to PND with DS and I can feel it creeping on me now. I need to either stop or see light at the end of the (short, preferably) tunnel.

minipie Thu 20-Mar-14 14:10:21

Oh this makes me so so cross on your behalf. 4 weeks is crap and 13 weeks is just ridiculous. All this supposed NHS focus on encouraging BFing but when someone actually really wants to BF they can't get the simple, inexpensive op that will make it possible. Gaaaah.

Being honest with you - it's going to be tough to keep expressing enough to keep up supply for 4 weeks esp if you have an 18 mo as well. And bottle preference may mean she won't go back to BF anyway. In your shoes I think I would try to keep going for, say, a week, see if a cancellation comes up within that time (nag as much as you can ....) and if not I would call it quits without any guilt. You will have tried your very hardest and she will have had quite a bit of BM and colostrum which is great.

Whatever you decide with regard to feeding however, do get the tie snipped - it can cause later problems with feeding and speech so worth getting the snip even if you're FF by then.

Purplelooby Thu 20-Mar-14 14:22:54

Thank you so much minipie for your honesty thanks. I tried just now to latch DD and after about 8/9 times of being wrong gave up... it does seem she's getting lazier at opening her mouth which I can only assume is the bottle.

All I want is to be the best Mum I can to both of my DC. I do know that when DH goes back to work I won't be able to do the expressing.

HeyNonny Thu 20-Mar-14 14:35:32

My son had posterior TT and lip tie. Can't remember exactly but the TT was treated around 10w (after the first bout of mastitis!). LT wasn't treated, unfortunately (he has problems with his teeth now, they've grown diagonally and crossed over at the front), as nobody will do it.

It was absolute hell, especially looking after a 2yo and newborn whilst being semi-delirious and having a 40-deg fever from mastitis! Tbh the snip didn't fully solve the problem though it did make a huge difference, I had another two bouts of mastitis and had developed an abscess before we finished with breastfeeding - but I did feed him till his first birthday.

Honestly, if DS had taken a bottle and I'd not BF DD till 1 (misplaced determination to treat both DC equally!), I'd have probably given up BFing long before and would definitely not have felt at all guilty or regretful. As it was, and despite trying nearly every day, he couldn't latch onto a bottle until he was 11m3w - by which time he could drink perfectly well out of a tommee tippee sippy cup, so a week later we just gave him cow's milk in a sippy cup.

Purplelooby Thu 20-Mar-14 21:37:42

DS had a bit of bottle trouble too, although nothing that severe heynonny. He could never flange his lips on the bottle and we often had to keep re latching him because his tongue was blocking the teat. He had awful reflux and colic too. DD is having milder versions of the same so I'll get it snipped whatever happens...

polarpercy Fri 21-Mar-14 09:32:26

Hi my dd had a 75% tongue tie and we had it snipped at 18 days, she would have been nearly 16 weeks by the time our NHS appointment came around. Can I recommend the association of tongue tie practitioners we found ours on there. She was absolutely fab and was a trained midwife and lactation consultant. She helped me feed my dd straight after, and the difference was huge. Breastfeeding is now totally painfree and my dd has gone from strength to strength.

My dd also struggled with a bottle of ebm and was very windy/gassy from where she was taking in air during a feed. I had to really battle to get anyone to take it seriously though, I don't know what others have found but I found parts of the medical profession very dismissive of tt and the impact of it.

Purplelooby Fri 21-Mar-14 14:13:07

polar it's just the money we don't have sad The only one around here is £180. Even though I know we would spent more than that on formula, we don't have the money upfront plus the risk is that she still has problems because of the tt sad Thank you though.

My son had posterior tt that was not diagnosed until 7 weeks and cut at 8 weeks. He did breastfeed but also had syringe/cup/bottle ebm top ups. Bottle top ups from 10 days old to 8 weeks and as soon as we had the snip he has never had a bottle again. It didn't confuse him or stop him knowing what to do with a breast. In fact he refuses bottles now.

You can express and keep your supply up, a friend of mine who has recurring thrush has done so for 5 months as has another girl on my MN antenatal thread. It can be done.

And after the snip, feeding was easier. Not quite immediately as his mouth as numb and I panicked we had made it worse, but very soon. I then got thrush and had another bad month thinking breastfeeding was just meant to hurt a but BUT from 3 months it's been fab.

We went private as I felt we had already left it quite late, although I know two people who had it done at 12 and 13 weeks and feeding improved from there. One of those had been bottle feeding mostly. How is DDs weight? If she is not gaining well they might fast track you? (Though obviously I hope that that's not the case). Worth asking. Definitely ask for a referral ASAP. If by then you decide not to do it you can always cancel.

Good luck

NickyEds Fri 21-Mar-14 21:51:09

Oh Purplelooby- I am so angry on your behalf. The waiting time you're facing is beyond a joke. My DS had his Tt snipped after 16 days(NHS)- we started topping him up after 10days as he was still losing weight- and he's now mix fed. It wasn't exactly what I wanted and I cried so much when we first topped him up. I agonised about DS feeding constantly for the first month of his life and whilst I'm pleased I've managed to keep up some bf I'm not sure that all of the pain and anxiety is worth it.
Bf is great if it works out for you but it isn't the measure of a mother- keeping yourself and your family well is also very important. My sister gave me some advice to try and put it into perspective- she said to go to a school playground and point out the ff and bf and mix fed children. You can't.
Ds is slowly increasing the amount of breast milk he's taking now has about a bottle and a half of formula a day- down from 3/4 of his feed. So you could express until your dd get her Tt snipped and then build up to exclusive BF or you could switch ff. I'm sorry that you've been put in this position. Make the decision that's best for you and your family and don't look back- your baby will no doubt thrive either way!!! Congratulations

Purplelooby Sat 22-Mar-14 14:11:24

So just to update... I've been chatting to two friends who exclusive ebf and I've been put off, although I know I'm not facing that forever. The trouble is I'm just not coping with it. I feel very stuck in the house and unable to cope with my toddler - and this is with DH around! I know this is me being selfish, ffs I only have to make it for 4 weeks, but the PND last time was hell and I know I need to get out and about to sort it out. Both of my friends who ebf got PND. One regrets it and one doesn't... Thing is, the one who doesn't is the opposite type of parent to me. She's very 'let them cry, they need to learn'. I'm more attachment and that's why I wanted to bf, more for the bond which I think is invaluable to a baby than the milk itself which I know is also important, but to me it's secondary to that psychological benefit to a baby. I'm finding that ebf makes it impossible to practice attachment whereas with DS I did manage to parent pretty much as I felt right despite ff (the bond between us had been torn to pieces by our short bf experience - I could barely touch him).

Ok I'm getting myself upset. Thing is if I stop and the letter arrives tomorrow I'll be gutted, but I can't do this for much longer. Definitely not when DH goes back to work, so I'm decreasing my expressing to slowly decrease my supply. If the letter arrives before my milk goes it was meant to be. If not then it wasn't.

Please tell me whether I'm selfish.

Please do me a

OhPuddleducks Sat 22-Mar-14 17:21:06

Been there and it is possible. Briefly, DS had a big ol' tongue tie - couldn't get his tongue past his teeth and I was told it would take a month to get it snipped. I persevered with feeding and ended up with a popping blood blister that was horrendous. My midwife took one look at me and did some ringing around to get me an emergency appointment when he was five days old. TT was snipped and I hoped that would be the end of the issues. However, he didn't know what to do with his new free tongue and couldn't latch on. A different midwife told me to express and give him a bottle and then keep trying, but the upshot was that he started to get lazy and didn't want to latch. It took 17 days to sort it but he is now a bfing dream. This is what we did:
- rented a hospital grade pump - it took each pump down from an hour to 20 mins and actually helped increase my supply. My health visitor rang Medela, who we rented from and explained the situation so they gave us a discount
- pumped every three hours day and night. I have a two year old so know how guilty you must feel for your son but I made bfing the priority and, while it felt like the pits at the time, it was in hindsight a very short period of time. During those weeks my friends came and picked up DD and took her to playgroups and play dates and in the end my mum came to stay "for as long as it takes" to help us with the feeding and house and so on
- before every feed that I could face (and if I was too emotional, I just wrote it off), I offered him the Breast. Did loads of skin to skin as well and carried him in a sling as much as possible to be close to him.
- I gave as many bottles as possible so he associated feeding with me. Also we got Medela Calma bottles and teats - they simulate bfing and I think they really helped make the transition back to the boob.
- my mum watched me and helped me position him / held his flailing arms / kept the toddler at bay during the early feeds
- we went to cranial osteopathy and I think this was a huge help as well.

Basically, it took over for a bit. I had three bouts of mastitis as well, when he stopped, when he started again and when the latch still wasn't good. At the time I wondered whether it was all worth it and whether I was putting the family through a whole load of unnecessary pain but in the long run it has definitely been the right decision for all of us. It's exhausting though and feels so unfair at the time, so I really feel for you - whatever you choose to do will be right for you, but please know it can be done if you want to keep going. Big hug to you.

OhPuddleducks Sat 22-Mar-14 17:30:22

Just saw the latest update - you are NOT selfish. Not at all. It is bloody hard work feeding a baby one way let alone trying to breastfeed, giving bottles and expressing all the live-long day. Four weeks is a long, long time when you take all of that into consideration, let alone all the other elements of family life. Take it a bit at a time and see how you go. Are you under the midwives or the health visitor? Do they know how low you feel and that you need support and help sooner than the standard wait? Maybe you can get a cancellation or emergency appointment like I did. For me, I took it a feed at a time and just kept going that way. Anytime you feel rubbish about it though, remind yourself that you are doing and have done brilliantly. And that you are definitely, definitely not selfish. X

stargirl1701 Sat 22-Mar-14 18:41:32

DD had a tt. I can only suggest the following:

Hire a Medela Symphony double pump - try your local hospital and speak to the Infant Feeding Co-ordinator.

Try nipple shields - Medela do them in different sizes so it's trial and error.

Think about using the Medela Calma bottles which may discourage your LO just wanting the bottle.

I found I could latch DD using biological or laid back nursing techniques - the pain and damage were greatly reduced.

Phone the La Leche League and get help from them.

Think about cup feeding - ask your midwife to train you.

After you get the tt snipped you can use a SNS to supplement formula while you build your supply.

Some info here:

kellymom.com/health/baby-health/bfhelp-tonguetie/

NickyEds Sat 22-Mar-14 18:46:06

You are not being selfish. Say it after me..... You are not being selfish. expressing breast milk then topping up with formula is by far the most labour intensive way of feeding a baby. You must be shattered on top of all the hormones and emotions a new baby brings. You've said that it's the bond that you believe bf will bring and the psychological benefit to the baby bf engenders. I have no idea at all if my mum breast fed me!!!- I know she loved me.
I'm sure some people will go to extreme lengths to bf and if you think that might be for you then LLL might be of help. If not then ff and start to get out and about . If there is something you can do to keep the PND at bay- do it- it will be better for you and your family.
I can completely understand your upset and guilt at this. I was told several times that mix feeding is the path to ff and I felt terrible guilt. I remember thinking all I had to do was feed my DS and I couldn't do it so I was a failure as a mum. My regrets now are about missing my baby's first Christmas feeling guilty. Not enjoying his first smile but dreading his next feed. Crying on the phone to(another) midwife when I could have been kissing his little feet! You sound like a great mum. Carry on expressing until it becomes too much of a ball ache or the letter arrives- whichever comes first. Cry for 5 minutes then go give your babies a love. Good Luck

DrownedGirl Sat 22-Mar-14 18:53:56

My 4th child had a posterior tt.. Snipped at 3 weeks
He was 6 weeks before he could really latch
Expressing for him was one of the hardest things I have ever done (had 2 yo twins as well at the time)

One thing that made a real difference to my emotions through it all, was reading some blogs about 'love my boobs'
I went through a process of grieving that we weren't going to be able to bf (I honestly thought we wouldn't get there) but those blogs, written by a woman who was exclusively pumping, really spoke to me about how I could replicate some of the intimacy of bf while using bottles

Totesamazeballs Sat 22-Mar-14 18:54:07

You have my sympathies. I have been there with my first, in the same pain you describe. In the end the lactation specialist told me it was a no go so I expressed until I got a massive infection at six weeks. I am due my next in a few weeks and braced for the same probs. endless people telling me the latch is great when I know what is going on inside. This time I am going to give up a lot earlier as I have a 22 month old and I am going to have to balance his needs with the baby's. It's not your fault. It sucks but formula is fine and v nutritious these days. Colostrum is the most important and anything over and above is a bonus in my opinion. Sorry I can't offer more advice.

DrownedGirl Sat 22-Mar-14 19:06:41

www.mamaandbabylove.com/2011/08/05/why-penelope-couldnt-nurse/

If you look here, there are links to two pieces about making boobs a happy place and a baby who won't nurse

Lots of it is not relevant, but the stuff about bathing together and bottle feeding lying skin to skin really meant a lot to me and kept my spirits up

Purplelooby Sun 23-Mar-14 20:38:39

Drowned thank you so much for that. I feel very sad about my boobs at the moment... All that lovely milk there and DD will gum at them through my top - just one bit of skin preventing them from meeting. I think I'll feel better when my milk stops and I can let DD love my boobs without the guilt...

Purplelooby Sun 30-Mar-14 15:34:05

Just an update - so we did get our referral through with a total wait of 5 weeks. I felt a bit sick when it arrived because it felt like decision time. I gave up pumping because my breasts were getting very engorged and over-producing (I have a fast let down but I've never got far enough with feeding for it to be much of a big deal!) and after 3 days of ff i caught a rummy bug. Since my milk was still there i started giving dd one or two feeds a day to stop her catching it and that's where I'm at. I cant face the breast pump and the engorgement (it means I end up pumping more and more which makes it worse) and the general feeling of being tied to it, but dd's latch is slightly improved so as long as i leave some time for my nipples to recover i can manage. Sadly i don't know whether my milk will last to the referral, but every feed from me is a bonus to her I guess...

Totesamazeballs Tue 01-Apr-14 21:10:45

Hi,
My number 2 just arrived an I have exactly the same problem as you, as I also had with. Umber 1. Just wincing my way through the colostrum and then going to express and bottle feed with formula top ups. It's so frustrating when people say the latch looks fine...it's bloody not!

Purplelooby Wed 02-Apr-14 10:31:16

I think that's what annoys me the most totesamazeballs, that people say 'breastfeeding does hurt at first! They have no idea! Plus tt babies don't actually transfer milk properly. My first was readmitted to hospital because of this (which no one spotted...) and was ill for a while. He had been small at birth and couldn't cope with the dehydration. As a first time mum that was the worst thing I'd ever been through. The pain was secondary really. This time I'm managing some feeds but now we've both got thrush sad Also she's gone very lazy sucking and after the fore milk drowns her (fast let down) she doesn't stimulate the hind milk. When is your referral? Good luck with the expressing hon - I hope you have more luck than me.

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