Tongue tie and recovering from bad latch

[oliveroses]

Hi, my lovely son is 2 weeks old and has just been diagnosed with tongue tie. It was snipped today. Since he was born I have been on a 3 hour feeding cycle which involves skin on skin, breastfeeding (or trying), formula top up, expressing to maintain my milk supply. This all takes 1.5 to 2 hours so there's little time for anything in between. My nipples are in agony and needless to say I am very tired. My baby has lost a small amount of weight since previous appointment.

Today I had the appointment for the tongue tie and I'm just home and though I realise it doesn't offer an instant fix, the plan is basically that I continue on the schedule I am on, or a slightly relaxed version, and look out for improvement. At the same time I have been encouraged to bf more often. My nipples are still in pain when I try and bf though, & he still wanted a 70ml formula top up at the end. When will this
change? How do you relearn with your little one?

Does anyone have any experience of this or words of advice? My first week with my son was amazing but this is now really taking over. I have also received so much conflicting advice from different midwives and the health visitor: cut down on formula top ups to prioritise breast milk and production; don't cut down as he may lose more weight; use nipple shields to manage the pain; don't use them in case he becomes reliant; be more rigorous about the three hour schedule; every four hours is fine and you can even consider skipping a night feed if he doesn't wake up asking for one.

I feel at my wits end and am struggling to see a rational way through this, probably because I am so tired. I can deal with the sleep issues though, it's the pain that is so difficult. Last night I was counting the feeds until our appointment today in the hope things would suddenly change but I realise now that won't happen. Maybe I could deal with this if I was coming to it fresh but I feel exhausted. I don't even have a plan for the next feed. I would love to hear from anyone who has experienced similar in the past or who is going through it x

Use nipple shields.

I had my baby’s tongue tie sorted at seven weeks and feeding her now with a shield. No issues.

Thank you @peachypetite - he does latch much better with a shield, tongue tie aside. Do you feed with the shield when out and about? I know lockdown is probably not the best time to ask ...

Haha @oliveroses I’m barely leaving the house.

I had same issues with my son too. In the end I b.feed on one side and expressed on the other using Elvie portable pump. This was to give the very sore side a rest. I was red raw! Then fed him the expressed first then top up. They now sell a manual version of Elvie pump for 50. I would recommend the electronic pump definitely. If you can put him on with shield on one side and pump on other side that may help you reduce the time. You might find it increases the amount you get and supply too

Get a nipple shield and try it. As well who cares how he feeds as long as he does. There's a woman I follow on Instagram who has documented her b.feeding journey with shields and how she's gotten baby off them. Nomilklikemamas and milkmakingmama has lots of resources too.

If they don't help then maybe try expressing from one side and giving that to baby and trying to latch on the other.

Also I had and have issues with midwife too!

I would say that they're not actually lactation specialist. So they don't know everything. Neither are they qualified to advise about supply or top ups. I myself preferred dealing with the infant feeding team in my area. Are you aware if there is one in yours? I would ask about... Or Google it and speak to them. They most likely would be the team that has Done the tongue tie procedures.

It's horrible when this happens but you need to look after yourself too. Lack of sleep and food etc is all going to affect you. Look after yourself n sleep too.

Feel free to message me any more questions

Just to clarify I did boob, expressed then formula top up.

Thanks so much @Simskdd, it's great to hear about how you've tackled this and the idea of pumping while feeding is one that hadn't occurred to me! I just fed with the shield and it's a game changer when it comes to the pain - I'm happy to deal with the hassle and sterilising if it means I can feed without wincing, and will deal with weaning off it if/when I need. Thanks for the suggestions for resources too. Feeling much better about things today

I'm so glad to hear that. Take care and if you have any questions please feel free to ask

That's excellent news OP! My HV was completely against shields but it was the only way I was going to carry on breastfeeding. I think I used them for 4 weeks and then I was fine. They really do make a world of difference!

It sounds like you've had a rough ride so far. I'd suggest a call to the National Breastfeeding Helpline 0300 100 0212 - they can talk you through the process of reducing top ups etc.

We can say all sorts here, but it most reflects our individual experiences, and as you've found, training and experience in HVs/midwives is massively variable and usually ends up with multiple confusing strategies.

It sounds like you need skilled support with re-learning to latch, information on wound healing, and a plan to move towards increased breastfeeding - the NBH can help you with all of it.
Good luck!

As an aside - the thing about nipple shields is that they are great for transitions from bottle to breast, women with inverted nipples etc.
However in cases where a poor latch/TT is involved, there is a risk that they just teach a new (painful) latch rather than fixing the problem. They are also known to lead to less efficient breast drainage, so can eventually lead to reduced supply. That's why many BF supporters don't suggest them, as you can end up worse off. Obviously they can be great, but it can help to know what to look out for.

I would also support using a nipple shield. My eldest had a long journey to successfully breastfeeding and that was with the in-house support of my MIL who is a lactation specialist. They don’t tend to recommend nipple shields in the early stages, but she was at a loss and in the end we did try them and they are what successfully got my daughter feeding. We used them for 2 weeks or so before trying without. So if they work for you I would hundred percent support you continuing to use them. My youngest had tongue tie and it was incredibly painful to feed him before that got sorted, to the point I was seriously considering giving up, so I really feel for you. Once he had it snipped it wasn’t an instant fix but it did gradually get better and the pain did drop by a good chunk almost immediately. Over time we got round to normal feeding with no pain. Midwives and health visitors are very fixated on a baby’s weight. Rightly so in many ways of course, but it does quickly lead to suggestions of schedules and top ups if they don’t see the progression their charts expect. If it were me I would probably feed on demand, when the baby seems to need it, rather than tying yourself to a schedule. That may see you feeding what seems like non-stop for some time but that is how breastfeeding gets established in the early weeks. Even when it is straightforward, as it was with my middle child, it is still pretty all encompassing and exhausting in the early weeks. So don’t feel that you are doing something wrong if it feels like that. But pain in addition makes it infinitely harder and hopefully that will lessen now his tongue tie is snipped. Feeds gradually space out and you get into a rhythm. But of course if top ups seem necessary then you are his mum and do what seems best. Re the feeding position, when my babies were v little and struggling they always seemed to find the rugby hold easier to feed in.

Hi @oliveroses

I don’t usually post on mumsnet but felt compelled to reply because I had gone through exactly the same thing and know how hard it is.

I was hoping to share my experience so you know there is an end to this. My DS had tongue tie too and was snipped at 3 weeks. I was also doing a crazy 2hr feeding cycle, night and day. No sleep and a lot of pain with no end in sight. He was a very hungry boy and I couldn’t express enough milk, so topped up with formula. I persevered and by week 8 he didn’t need topping up anymore, and was EBF until he was 20 months old. In fact, he refused formula as soon as he could feed well. From about week 12, there was zero pain and he didn’t need help latching at all.

Some things that helped:

• Google the flipple technique. I had to help him latch on properly but he eventually got the hang of it.
• Microwavable breast therapy pads and lots of Lanolin nipple cream to ease the pain
• Try feeding before he starts showing signs of hunger. This helped as my DS wasn’t desperate for milk and sucking really hard. Or you could try and give a bit of expressed milk first to ease the initial hunger if you catch him too late.

This too shall pass! Hang in there and it will get easier! You are doing a great job! xxx

Thank you sonmuch for the further replies - it makes such a difference hearing about the experiences of others and I don't feel quite so alone with this!

@RockCrushesLizard you are right; I should give the helpline a call. Thank you also for the info about shields, which is good to know. I did suspect there must be something other than reliance which put some people off them!

@Himawarigirl Thank you for writing with your experiences, and sorry to hear you've had a bit of a bumpy time with it all, but it's encouraging to hear the success stories! My son was weighed yesterday and he's now above birth weight which is welcome news. Because of that the midwife who has now discharged us from hospital care said I can be more flexible with the schedule, much as you suggest, and do what seems best since we seem to be on the right track. I am keeping an eye on times and quantities of top ups but she said it's fine to let him sleep longer at night, and I'm going with his mini feeding frenzies in the evenings. The adjustment I'm making isn't huge but it's made a big difference in terms of feeling a bit more in control of the situation.

@MumofBoysBexley it's great to hear your advice, thank you! I will look into the breast therapy pads as they are new to me. The flipple sounds like it fits with the way I am holding him so will give it a go. Congratulations on getting there ~ it must have been so rewarding and such a relief! The feeding schedules are brutal.

I confess that when I went to my midwife appointment yesterday I was planning to tell them for the sake of my sanity that I was going to give up on breastfeeding ~ the day before last was awful, him just crying all the time and me persevering for hours and us both having a meltdown. But they watched me breastfeed and to my surprise said I am doing everything right and am almost there, which gave me confidence. They taught me a new hold where you hold the baby lengthways up your body, square on with the breast, and that's working at the moment and the pain dies down after the first minute. They said part of the reason he is having trouble is that my breasts are too full of milk and he cannot get a hold, so even that basic info is something I hadn't realised. I will hand express a bit first and hope that makes it less frustrating for him.
@Himawarigirl I am terrible at the rugby hold! I can see how it should work really well but for us it seems to be all legs and arms...

The midwife also advised that I should stop being so hung up about how much he is taking in the way of top ups. I had been so dismayed when even after an hour of breastfeeding he'd take the same amount of formula as if he'd had a ten minute feed. They said that though the ideal would be not to top up, my focus should be on the breastfeeding for now and everything else would follow; or, that he might always need topping up (he's quite big) and that was okay and to be accepted if it were the case.

I feel i have what I need to try and make this work for us now, not least I will be a bit more forgiving on myself but try to make small steps every day to get there. I expect I will have setbacks on the way but for now I feel I can take on the feeds without dreading them, my mood has improved, and my son seems more relaxed again. Thank you again for all your replies xx

I’m really glad you were able to get some support, and in person too, which makes such a difference with feeding. And great to hear the midwife was so supportive of helping you breastfeed, as attitudes can vary widely. Funny what you said about the rugby hold as someone showed me the hold you mention and I never got the hang of that one! Good luck.

Hi @oliveroses I have just read your post in my own desperate search on here to find similar experiences with tongue tie.

In fact, your post sounds so similar to my story I could have written it myself.

My baby was diagnosed at 6 weeks, had it cut, we are now 3.5 weeks on and although there has been some great improvement, it has been slow and in a bit of a 2 steps forwards, 1 step back fashion! As a tired mum the emotions do get to you and I spent most of today crying!

I too spend an age feeding and, even when I think it's been a good feed, he will still take the whole bottle of formula (breast milk or formula depending on how much I've managed to express). At those times I feel like "what's the point, I may as well have just given him the bottle in the first place and saved us both a hour of feeding"

I wondered how you are getting on now? Are you still topping up and has his latch improved?

Hi @123456789sw , sorry for the delay and also so sorry to hear you are going through this too. The news from here is good so I hope will be encouraging! After my appointment with the midwives I carried on with the slightly relaxed plan of breastfeeding, topping up, expressing and then I had a weigh-in with the health visitor. At that appointment it turned out my baby had put on a lot of weight and I said that I needed to just do one thing or the other - breastfeeding alone, or formula - as it was exhausting. My baby's latch had really improved and the pain was a lot less by this point. That was about a week and a half after the TT was snipped.

Luckily my HV was great and really understanding, she told me to stop killing myself and to do whatever worked. With her advice I decided to give exclusive breastfeeding a go - it felt like a bit of a plunge into the abyss but she said I'd know if he was not getting enough milk. Since then I've been breastfeeding on demand without top ups after feeds and to my astonishment it seems to be working and he's gaining weight still. It was quite nerve wracking and there were a couple of days when I had more pain because of the increased feeding, but it was very different and was manageable- it's died down now. He is cluster feeding in the evenings but I have just stuck to my guns and kept him on the breast even when it's felt like there is nothing there. Recently we introduced one formula feed in the evening which my partner does, to give me a break/sleep and to keep him used to the bottle.

I never thought it would work but I think that last appointment with the midwives, when they told me I was almost there, gave me the confidence I needed, along with the HV encouragement. The only thing I'd add is that about a week in my son started going through a developmental leap, according to the wonder weeks app. He's been really fussy, forgot how to latch one night (but was fine the next day) and fed for eight hours one day. If my switch to breastfeeding has coincided with this i would have assumed it hadn't worked. Things are now settling back into fuller feeds at regular intervals, which is a relief.

I'm not sure what to offer in terms of advice - I did spend a lot of time looking at and working on the latch to check it was right at each feed, and I also fed lying down a bit at the start as that worked better for me at first than the cradle position. One day it just seemed to click, and it may well have been after I decided to try breastfeeding with no top ups rather than before. I spent those days in bed or on the sofa doing skin to skin and nothing else but feeding. Along with that, though, I think that giving myself a bit of a break made such a difference. Those last two appointments plus the advice and support I received here from my original post made me feel so much better about everything. I realised for myself that making this work wasn't the be all and end all and that I needed to take a bit more control as the feeding schedule was getting me down.

I really hope that one way or another things work out in a way you are happy with, but my HV said if that means feeding formula, that's also fine! Don't worry about the top ups you are giving and how much is in them.?On reflection getting hung up on this was not helpful for me. Getting through this has been so tough and I might not be there yet, but I feel as though I can enjoy being a new mum again. That's so important so I hope you feel you can make a decision soon about how to manage the situation - sometimes that might be carrying on with the plan, but sometimes it might be saying enough is enough, and coming to peace with the work you've already put in and the great start you've already given your baby. I was ready to switch to a full formula diet if breastfeeding didn't work - I gave the breastfeeding three days as the HV said it might take this long to get established. My mental health was suffering and by then I'd decided it was make or break.

I wish you all the best! I was going to contact the National breastfeeding support line, my local nct councillors, and/or LLL for help but in the end it took off before I needed to. I would recommend that, though. NCT has a lot of support avails for breastfeeding over the pandemic I believe, so definitely worth trying a zoom appointment or one in person if possible. It could be just a tiny adjustment that is needed for you and you may be just about to turn a corner xxx

Sounds like things are heading in the right direction OP - I'm so glad to hear it. I think the advice not to get hung up on the volume of top-up is sound. I realise this is hard, with all the pressure to try and EBF, but in your situation you should really view formula as your friend - a tool that enables you to keep breastfeeding if you want to. It sounds like you may well be on the road back to EBF, but if not so what - your baby will be getting the benefits of breasmilk all the same.

But really, I came on to add my two cents (hopefully not needed), having gone through something similar - TT snipped at four weeks, unfortunately had to be redone at 11 weeks. Latch still terrible, but very luckily for me I never had nipple pain. Miraculously still EBF.

With the benefit of hindsight, my two cents would be to think about how much you value breastfeeding (or EBF) and decide now how much time and effort you want to put into making it happen. Because in this situation it is very easy to get stuck in a pattern of always trying a couple more weeks for the next procedure/to see if it sticks etc etc. In my case, feeding only started going well around week 10 and up to that point I felt like the process of trying to make it work dominated to the exclusion of all else. If I have another, I plan to set a deadline for breastfeeding to be working well enough after which I'd switch to formula if not. As I said, hopefully you don't need this advice and everyone else's tips will stand you in good stead - but I wish someone had said something like this to me while I was struggling, instead of the blanket assumption that I would want to breastfeed above all else and regardless of the cost.

Oops, sorry OP - just saw your last post and great to hear things are going better (and in fact sounds like you were more sensible about it than I was at the time!). Will leave that last message though in case it helps someone else!

@123456789sw just to add (in addition to my post above) - the thing that finally made bf work for me was not either of the two TT snips, but starting on domperidone. My supply had really taken a hit due to lack of demand in the early weeks resulting from the TT and domperidone sorted us right out, got my daughter gaining well and dramatically improved the experience of feeds despite her still having a terrible latch (obviously if I'd had nipple pain it would have done nothing for that). I had been pumping to try and get supply up but that felt like running to stay in one place and I was finding it very draining to pump and feed.

Not sure from your post if supply could be an issue for you or not but if you feel it may be, then it could be worth looking into and discussing with your GP (Breastfeeding Support Network have a good info-sheet on it)

@Etherealhedgehog thank you for writing! That's amazing that you didn't have any nipple pain. Your advice about setting a time limit is excellent and spot on! 😀

Thanks so much both, I have just woken up to these posts this morning and find them incredibly useful.
I have managed to get domperidone from my GP and tried to increase supply by feeding every 2 hours between 8am-8pm and pumping after each feed also.
I'm unsure what my supply is like and have requested to increase the dose but my GP is reluctant to do so.
I have an appointment with the infant feeding team this morning for more advice. I wonder if trying to go EBF for a few days and feed on demand might be an option. I will ask for advice this morning.
I really appreciate your help
Sophie

Sorry to keep bothering you @oliveroses.
I went to the feeding team this morning. Turns out Raphael is just lazy (I blame my husbands genes!) and likely just waiting for the bottle after breastfeeding.
So I mentioned trying your plan and cutting down m:eliminating bottles, which they agreed with and I'll try over the next few days.
They said to cut out completely might be a bit much, so I'll give a bottle but separate from breastfeeding so he doesn't see it as a reward/dessert!
I just wondered if you have any tips for how you went about this?
Did you find you were just feeding constantly until your little one figured it out?
Thanks again

It sounds like a good plan and great that they are supporting you! Yes, I wondered if mine was lazy too 😀
I didn't have a strategy other than I made sure I was glued to him all day so that whenever he started rooting I could feed him as soon and as often as possible, so that he'd get milk but also to boost my supply. I don't think he fed constantly but definitely more often than with formula, but it was a constant commitment. I dropped everything else so no walks for a few days and no laundry (I was lucky as I didn't have any obligations!) and just went all out. I also drank loads of water and ate porridge for breakfast (no idea if any basis to this but apparently oats are good), and I made sure I snacked a lot to keep my energy up and calories going in. The midwives said you need 500+ extra calories a day! Lots of cake was involved.

I used lansinoh after every feed and bought the breast therapy pads too when I was sore. I used a nipple shield for the night feed for about a week which did help him latch and made sure he had a good feed at night - but sometimes these are not recommended as the baby can become dependent on them. I just made sure I limited use to give myself a break so that my boobs could heal a bit overnight and make it sustainable in the long run.

I did find his latch improved after skin to skin - I was quite surprised but it made a big difference! Whenever I feel we've taken a bit of a step back I go back to this. I also tried out different positions - the koala hold or biological hold, I think it's called? worked well for me and lying down in bed as long as I didn't feel too sleepy. I finally managed the rugby hold which was great for me but he hated it! The cradle hold is worst for his latch but most convenient - I do this most often now, but not at the beginning.

Did the feeding team say anything about paced feeding with the bottle, which I think can be useful for babies who favour the bottle?

@123456789sw meant to tag you in that last post so that you get the notification