BF issues from day 1 incl undiagnosed tongue tie - is it worth persevering?? I'm starting to resent feeding time

[theborrower]

My baby girl is 7 weeks old and was delivered by emergency C section (she was breech and this wasn't discovered until I was in labour). She was 5lb 4oz when she was born and was reeeeeally teeny.

She never latched on for a first feed and at subsequent attempts she just couldn't manage it, then she was sleepy, then she was throwing up mucus (which lasted a day or two) and I had to express colostrum and feed with a syringe. The paediatrician also said we had to feed her formula as she couldn't afford to lose any body weight.

Anyway, from day 1 she wouldn't latch on (she'd scream and get herself in a right state), we'd give her expressed milk and formula (I know, I know - nipple confusion and all that, but I challenge anyone to put up with syringe and cup feeding for 7 weeks) then express milk to give her at her next feed. She'd manage to latch on VERY occassionally and only for about 5 minutes.

At around 3 weeks she managed to latch on several feeds in a row, which was great, but we had to keep topping up with EBM and formula. However, she only manages a short time and it's clear that she's not getting enough milk from me. So basically feeding time is breastfeeding whatever she can manage (variable between 5 minutes and 25 minutes) then topping up then expressing - total time normally takes over an hour. And we have to feed her every 3 hours.

We've been going regularly to the local breastfeeding clinic and getting lots of support, but it was only last week when we saw 'the boss' that she diagnosed a tongue tie. Now, when we were in hospital several midwives said she had one but they all disagreed about whether it was a problem or not and subsequently nothing was done about it.

I'm glad to say that we have an appointment with the tongue tie specialist at the local kid's hospital later this week, and I'm really hoping that it makes a big difference.

However, I'm already close to the despairing stage and starting to resent feeding time. Does anyone have a similar experience and did the tongue tie op really help (and make a quick difference)? How long should I give it to see if it makes a difference or is it too late to establish breastfeeding (all the books go on about the first 6 weeks). How long should I try before I admit defeat and switch to bottles forever? Please help! All encouragement welcome

Wow you've really had a time of it - poor you. I don't have experience of the things you need help with, so I hope someone who has comes along soon...

I know if it were me I'd try and stick with it. I wouldn't say it's too late to establish exclusive BF, and the tongue tie op should really make a difference. My DS got a bit confused with his latch around 10 weeks, what with EBM bottle feeds and a dummy, but once I'd eliminated those and he only had a nipple to contend with he soon worked it all out.

Good luck with it all, and top marks for your perseverance!

Again, I've no experience of this but wanted to offer sympathy.

There was someone on here who didn't really get bf establish with a proper latch until something like 5/6 months (I think she was expressing up till then). I can't remember who it was I'm afraid. I'm not suggesting that you should struggle for months if you feel you want to stop, I just wanted to reassure you that the first few weeks aren't necessarily the be all & end all.

You have a similar situation to my DS1. He was early and weight less than 6lbs and was also tongue-tied although this was not diagnosed until about 5 weeks.

Before the birth, I was happy to try BF but had little intention of actually sticking with it. When I realised how tiny he was, my resolve increased somewhat and we stuck at it. I don't think we managed a proper feed in the hospital and the first 2 months were really a struggle, both for him and me.

After 8 weeks, I started to notice that maybe 1 or 2 feeds a day were going well, with no struggle. At around 12 weeks, we seldom had 'troublesome' feeds and it all got so much easier.

DS has a significant tongue-tie, but once we got the hang of things, it didn't make any difference. We didn't have it operated on and it hasn't affected his speech so far (he's now 4).

FWIW DS onbly ever had very short feeds - maybe 15 minutes at the most - so short feeding times doesn't necessarily mean she needs topped up. Have you tried switching sides rather than topping up right after the feed?

And well done

Hi again, thanks for the posts - this is my first time on mumsnet and it's great to get quick replies.

The BF cilnic advised 'active management' - basically BF for up to 30 mins max, then top up then express. However, once baby appeared to be getting the hang of latching on they advised seeing what she would do if we didn't top up (but only if she had been actively feeding). We did this for a couple of days and she didn't get topped up but she lost weight, was really unsettled and her poo went weird so she had to go back to it. We went back to the clinic and this was when we saw the boss - she observed her feeding, then said it appeared that she was getting knackered out quickly and diagnosed the tongue tie. So where over those couple of days without bottles that I thought she was doing fine (coming off, not asking for more etc) it seems it was really because she was getting tired out.

Unfortunately we can't just top up with EBM as I express very little - not enough for a feed by far.

Wow - you've sone brilliantly to keep going this long. DS had a tongue tie that went undiagnosed for 8/9 weeks. He was able to get enough milk, but each feed took a long time - and it was agony!

I expressed and used bottles when things got too sore, and it has never caused an issue. It may not seem like you are expressing much, but it is worth persevering. Remember, at 7 weeks your daughter doesn't need huge amounts at a time - she only has a tiny tummy.

His tongue tie was snipped when he was 11 weeks and, although it was difficult to make the decision, I don't regret it.

I was told that because he was quite old he had developed lots of bad habits to compensate, and that it might take a while before I saw any improvement as he would need to relearn the basics.

There was a small improvement immediately, and it continued to improve over the next few weeks until it was completely pain-free. He also feeds more quickly and doesn't gulp so much air.

DS is now 6 months, and bf is still going strong. In our case, it really was worth it.

Best of luck at the clinic :)

Thanks everyone - I'm really hoping that things go well after the snip but we'll just have to wait and see. I know I should ride it out and be prepared for a few more weeks of struggling as she has no doubt picked up some bad habits too (using bottles) and I'll need to properly build up my milk supply, but I also know that I wouldn't have gone this long if we had kept to using a cup and syringes - just far too faffy and we needed to make things as easy and stress free as possible or I just wouldn't have continued - too stressful.

Re the expressing - I'm talking no more than an ounce at a time - normally about 10 - 20 ml! Apparently what a woman expresses isn't indicative of what her milk supply is like, but I've also read that with tongue ties they can't get milk out efficiently so my body is probably not making enough, even with all the expressing that I'm doing.

Part of me thinks I'm mad to have kept going so long but to be honest I didn't think it would take this long to get it sorted (and we still don't have the hang of it!) and also because with 'failing' with the labour I don't want to 'be defeated' in another way. I know that sounds stupid but I'm sure some C section people will understand what I mean.

You are doing brilliantly. I was in your position 2 years ago and DS was also undiagnosed breech (footling at that!), 2 weeks early and em CS. I "failed" at BF after a week. It took me a year to get over it. I Also stopped producing any milk. Colustrum sort of came in at 2 days - very little at that - which we cup fed. Then nothing. After a week of fruitless expressing, even bf councellor sugguested formula.

DS is 2 and fighting fit.

I know what you mean about failing though. Struggled with failing with the labour, then BF, but what had me in floods was cloth nappies - used them happily for 20 months, then DS grew out of even the longest ones on the market (he is as tall as a 3 year old) and that REALLY upset me!

There is always Baby Led Weaning though - that worked really well for us!

DD had a tongue tie undiagnosed until she was about 10 weeks when it was snipped. She'd learnt some habits (like chomping at my nipple) to get the milk that took a while to get her out of but within about 2 weeks it had improved a lot. I was told to make faces at her by opening my mouth wide and sticking my tongue out and down and she copied me.

She was a very fast feeder, and used to only be on for 5-10 (very painful) mins but luckily we never had issues with her putting on weight. I did try nipple shields for a while and we also used a dummy as my nipples were so sore and I kept getting mastitis. I was quite despairing a few times so without sounding patronising, well done for getting so far, I know how hard it is.

We went on to feed for 10 months in the end.
TBH, I am proud to have fed her for so long but with hindsight the stress and pain of the first few weeks were quite intense. My head says to me if it happens with DC2 (due Dec) to just FF, but my heart does say BF.

I hope you get the situation sorted.

You are a hero for getting this far with BF/FF and expressing, it's a total nghtmare:)
Totally symapathise with BF/Csection thing - felt exactly the same. I also had a baby with tongue tie and had to reestablish my supply. I used a supplementary nursing system (maybe that's what syringe feeding is as well, I'm not sure??) and hand expressed after feeds.
The hand expressing removes more milk than the pump and cuts down on cleaning/sterilising time.You can also do both sides at once. I don't worry about how much milk I collect just use it as a way of maintaing/building supply.
Have a look at Jack Newmans website as well if you haven't already, as it has lots of useful info.
I really wish you all the best

Oh my goodness you are telling my story!
I am still VERY angry at the numerous midwives and health visitors who did not spot DSs TT until he was 5 weeks old and my breasts were in tatters.
We had it snipped at 7weeks, and once my nipples recovered (about 2 weeks) BFing was pain free. We had by then started to top up with formula, which reduced my supply.
We now happily combination feed - DS gets all the benefits of BFing, and the comfort of a full tummy from a bottle a couple of times a day.
I don't know why TT is not routinely checked for when it makes such a huge trauma of BFing and all the professionals are trained to make you feel like a failed mother if you FF.
GRR!
Good luck borrower, I really hope it turns out well for you xxx

I've been through a similar experience and well remember how gruesome it was. The endless round of expressing foremilk,breast feeding, then expressing, then topping up with syringe. You can't imagine anything more exhausting.

I persevered until 11 months, and tbh in retrospect wish I hadn't. However- big difference this!- unlike your dd's tongue tie, my dd's problems were not fixable and she was losing weight. So in our case, formula would have been a safer option. Having said this, dd survived, it got a lot easier once she started solids (which in those days was at 4 months) and I did get to enjoy breastfeeding in the end.

I think for me if someone with enough insight had said: 'your dd has a permanent disability and you will never be able to parent her in the same way as other people, you might as well get used to it'- then I would have cut my losses and gone on to formula and my life would have been a lot easier.

But if someone had said (as they may well do to you): 'this might be fixable', then I would have said, 'right I'll give it one more chance then and if it doesn't work, then I'll think again'.

It was the stumbling in the dark that wore me down. As I imagine it has you.

Just to add, my best friend had a baby girl just over 6lbs who had a full tongue tie, diagnosed 2 or 3 days after birth, and she couldn't even come close to latching on. They gave her the op and although it was a nightmare of nipple shields, expressing and syringe/spoon feeding for weeks and weeks, (during which time my friend had to go into hospital with an infection she picked up at the birth, AND mastitis after that) she managed to get her daughter latching on with nipple shields when she was about 5 or 6 weeks old, and had weaned her off the shields by the time she was about 12 weeks. It was really, really hard going, but she persevered and was so glad not to have given up (her Mum was constantly pressuring her to give up and give her formula, so unhelpful!). Also to add, as soon as her latch was sorted my friend's milk supply was ridiculous (daughter was a keen feeder :) ) and she didn't have any trouble after that. Hope you get through it, and well done for persevering this long, it really is worth it in the end, and I don't see any reason that you should have to continue with formula once your baby girl can latch on properly, although it might be a couple of days of frustration for your baby while she's suckling a lot and possibly not getting as much as she wants, but once she is stimulating the nipples more your supply will very quickly catch up.

Two things I wondered reading your posts...

Have you tried hand expressing and/or massaging when pumping? Apparently it can double the amount you get.

newborns.stanford.edu/Breastfeeding/HandExpression.html

Can you feed more frequently? I'm no expert, but every 3 hours seems like quite a big time gap with a baby who can't feed for long at each session. Are you feeding on demand?

Good point Japh - that reminded me that I had to increase to 2-hourly feeds (during the day) which bumped up supply and kept DS' weight steady.

Hi theborrower I was thinking about your post and wondering how you got on at the hospital appointment?

Hello - we were at the hospital this afternoon and she had it done! They asked about my worries and what had been happening ("My goodness, you must be exhausted"), looked in her mouth ("Oh yes, she's got a tongue tie") and she got it snipped it there and then. They swaddled her up, told me to turn around and not look(!), and then when it was all over we went to a private room for a quick feed to calm her down and stop the bleeding. She seemed to latch on fine. Since getting home we've had another feed and she managed 25 minutes of active sucking before she pulled herself off. We still topped her up (since the advice of the BF clinic for now is to BF 30 minutes max then top up then express) and she still drank a lot of formula. However, we're back at the BF clinic on Monday to update them and see what they say - I'm hoping their advice will change.

However, in the meantime I think we're going to have a whole weekend in bed, skin to skin, offering the breast at every opportunity and see what she does. I'm hoping that this (along with expressing) will up my supply and we get somewhere - I guess as my supply ups she'll need less FF - I think that's the idea of 'active management' anyway.

Japhramil - Yep, we do breast massage before and during pumping. I often get the hot compresses out, I've tried pumping in the bath, and I'm even trying fenugreek and milk thistle (does anyone think those work???). They referred me to Dianne West's Low Milk Supply website - good tip for any others reading this.

just5more minutes - yep, I'm raging in a way with all those midwives that spotted it and said it wasn't a problem and didn't do anything. The nurse at the hospital said that there's often disagreement about whether these things matter, but because they see so many problem breastfeeders at the hospital(and then they hear that it's made a massive difference once it's been done) they know that it really can help. It's certainly worth a go anyway. So if anyone else is reading this - DEMAND that you're referred to the tongue tie specialist ASAP if you suspect one!

PS - I'll keep you posted on how things go! Fingers crossed...

Glad the procedure seems to have helped. Your weekend plan sounds like a good one too. One further thought: given the length of time taken to divide the tongue tie, I think it is worth discussing a course of Domperidone with your most skilled BF supporter, basically to complement all the other things you are doing to support your supply. It is a drug sold over the counter for indigestion (known as Motilium) but also stimulates milk supply.

hth

Oh, glad procedure went ok and helped. I used fenugreek to boost my supply for expressing when I went back to work and I found it made a noticeable difference, although it took a few days to kick in. Never tried milk thistle though.

Hope you have a good weekend and enjoy all the snuggling.

So pleased the division went well, and that there is an improvement :)

Your weekend plan sounds excellemt - I recommend packing yourself little 'picnics' so you don't have to get in and out of bed for food. Lots of bf will also help your daughter's tongue to heal correctly.

The disagreement among HPs re the treatment of tongue tie is so frustrating. I was furious that it took so long to get DS diagnosed/treated.

Best of luck with your supply - now that the TT is sorted, I'm sure the rest will start to fall into place :)

Ok, the latest is -
Spent lazy weekend with Baby and breastfed at every feed (and in between if she wanted it),lots of snuggles etc and I think latch is good. However, Baby is taking same amount of formula top up (is absolutely not satisfied after 30 mins sucking).

Went back to the BF clinic today and told them the update - they said her latch looked good. They did some 'sums' (worked out how much feed a Baby her size needs to grow at her rate, or something) and basically it seems that she is not getting much from me at all, if any really. They said that after the 7 weeks (now 8) of active management (which is about ensuring you build your supply while at the same time ensuring Baby is getting the nutrition they need to grow and get stronger etc), coupled with the breast massage etc, I should have expected to see an increase in the amount of milk I'm expressing or a decrease in the amount of formula that Baby drinks as a top up. Neither has happened at all. She seems to think that I'm just not making enough milk - that perhaps there is something going on in my body to prevent it (or something).

We discussed domperidone (another lady at the clinic suggested it before) but I'd already mentioned this to my Doctor who was reluctant to prescribe anything (she said that putting baby to the breast, expressing and getting enough rest etc was far more important and successful) so it seems that my last option is to go to another doctor at the practice and ask them.

As the woman said "it's one more avenue - you need to make the decision that's right for you and your family" and basically asked if I'd be happy with whatever decision I take, knowing that I'd pursued all avenues or not.

Now, do I go to another doctor and ask for domperidone, and presuming he prescribes it, stick it out for another few weeks to see if this works?? I'm not sure I'm happy about taking some drugs that happen to have a lactation side effect and trying again for several more weeks to see if they work, when really it seems that I've tried my damndest in all the other 'normal' ways and it hasn't worked.

Does anyone have experience of domperidone?

I'm thinking that I accept that I've tried (and tried) and it hasn't worked out and move to bottles, but express milk twice a day to give to her. I know it won't be much milk but I think I'll feel a little easier with my full time FF decision if I do this.

What do you think? I've been in floods this afternoon weighing up all the pros and cons (Baby needs a happy mummy, and the prospect of weeks and weeks more of trying doesn't fill me with delight, plus FFing frees up some time for mummy and daughter fun and play time) and I just don't know what to do. My head is saying "FF, but express twice a day and give what little I have for her" but I sooooo wanted to breastfeed that I'm just so gutted it's not working out :-(

Read your post last night and it has been on my mind.........given that your dd is now ?8 weeks and has only just had the tongue tie division done, it sounds like you are in a tough space emotionally and physically.

However, given how long this has been going on, three or four days is a pretty short period in which to move from offering expressed/formula top ups regularly to no longer doing this. I hesitate to say much more as you don't say how much she is taking in top ups over the course of the day. After many weeks of feeding that were affected by her tongue tie, she will need to relearn her feeding technique, and your body will need a little time to respond.

Re domperidone, it is worth asking either another doctor and/or ask your BF supporter to provide a referral if you have had difficulty getting a prescription?

If you are considering mixed feeding, given all you and your dd have been through, perhaps consider breastfeeding some of the time, but without expressing? But equally, if you prefer expressing and seeing how much she takes, then that is an option too.

Good luck with whatever you decide, it is not easy. Keep posting, none of this is easy.

Hi, yep Baby is now 8 weeks old. She had her check up and jags this morning (and passed with flying colours!) and we had a chance to discuss it all with the two Health Visitors and Doctor (a different one) there. Doctor hadn't prescribed it for BFing before but promised she'd look into it for me and get back to me.

Baby drinks approx between 1 ounce and 3 ounces top up at every feed - but this is what she'll also drink if she's not been on the breast at all (for whatever reason - she doesn't latch on, she's sleepy etc). It all totals about what she would be expecting to drink in FF day if she was solely FFing. She's now 7lb.

So I guess it could be because either she just doesn't BF effectively or I don't make enough milk - ??

And yes, it is all been very tough physically and emotionally. I'm sure this must have an effect too.

However, we also had a good discussion about mixed feeding - perhaps BFing in the morning and evening and cutting the expressing back to only a few times a day (rather than at every feed - up to 8 times a day, as previously advised). For example, I managed to express 50ml this morning - the most I've ever gotten and this was after a 12 hour break of no BFing or expressing. I know it seems backwards as BFing is supposed to be about supply and demand, but when I express regularly I get hardly anything out - whether I've just BF or not (although I also know that apparently expressing will never get out what a baby can). If I leave it for ages I get more out.

Argh - I feel like I'm going round in circles, I don't know what the real issue is! Part of me suspects that it is a supply issue though - we never managed to BF at all in the beginning and I've never felt my milk 'come in', never had big swollen boobs, never managed to express more than teeny amounts etc

However, I do think I'd be fairly happy with mixed feeding - just doing what I can without putting lots of pressure on myself to aim for exclusive BFing which I think would be a long way off anyhow. That way Baby (and me) still get benefits of BFing and I still get the emotional satisfaction of feeding her, but also ensuring that she gets the food she needs. I think we'll give it a go for just now anyway. The Health Visitor is going to come and visit again soon to see how we're getting on. She said just taking a bit of a step back for now might end up helping supply in the end anyway - again, it sounds a bit backward but I guess I'd be more relaxed.

Thanks for the support - it means a lot.