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Sorry so long -- Severe PTT snipped last week, baby still cannot suck. Is there any hope for us?

(28 Posts)
featherblue Mon 11-Jul-11 19:46:49

Hi there, just after some advice really as I'm feeling very low atm. Baby girl born naturally 18 days ago. Posterior tongue tie discovered at 6 days and not snipped until day 13 due to delay in referral (and only then after many sobbing-down-the-line phone calls from me). Baby has never been able to suck hard enough to empty milk from the breast, though she can latch on. Severe nipple trauma that is now healing, but still too painful to feed from left side.

Breastfeeding specialist midwife says latch looks good, but that her tt was so severe that she just doesn't know how to suck properly. That it may get better, but it may not. Her suck is just very weak.

At the moment I am feeding from the right side and pumping from the left every feed (plus right side after feeding) then topping up with ebm if I have it and formula if I don't. I'm dealing with low supply as well (can only pump 40-60ml at each feed, sometimes up to 80ml. I assume because she's never been able to empty the breast enough to stimulate it). After the snip, they weighed her before and after a 40min feed and she only took in like 2ml.

We are sandwich feeding (breast-bottle-breast) as per advice from bf midwife. Baby even has trouble latching on and sucking from the bottle. sad Midwife thinks the bottle may help her to learn to suck.

She's still almost 10% below her birth weight. She's starving and is taking in up to 120ml per feed. Being weighed again tomorrow.

I'm distraught and desperate to bf. Spend a lot of time crying atm. Just feeling like we're at the end of the line for breastfeeding and I don't want to stop. I'm taking domperidone (sp?) and fenugreek and I've just hired a hospital-grade double pump to try. Just trying to continue like this for as long as I can.

Sorry for the novel, but I'm just looking for anyone who's been in a similar situation? I've read all the past PTT threads. Just looking for some hope I guess.

japhrimel Mon 11-Jul-11 21:14:30

We didn't have TT to deal with but DD had to learn to suck after a SCBU and tube-fed start. It is possible. She left hospital mostly on bottles, then top-ups of EBM with some formula, then EBM top-ups only then we cut the top-ups out by about 6 weeks.

Get pumping - you can get your supply up this way so your LO can be getting mummy milk and if you have the supply and LO's weight stabilisese, you can then work on getting bfing itself sorted. Domperidone and fenugreek can only really help if you empty the breasts, so you need to do this with a pump until LO is big enough, strong enough and practised enough to do it themselves. It is a lot of work, but if bfing is very important to you (it was to me) it is well worth it. I'm now still bfing DD at 7mo!

Expressing is a learnt art, and IME is very affected by stress, exhaustion, dehydration, low blood sugar, you name it. You're going to need as much help as you can get and plenty of having meals made for you and people reminding you to drink, as well as doing nappies, etc so you can rest.

hang in there.

iloveholidays Mon 11-Jul-11 21:15:13

I'm afraid I can't offer any advice, but didn't want to not post.

Both my DD's had tongue ties (apparently common, so if you have anymore DC its something to look out for - my DP also had a tongue tie) but luckily both were resolved before we left hospital (Day 3), but I know how stressful it was for the first 3 days so can't imagine how hard it is after 2 weeks!

You are doing amazingly well to stick at it and should be really proud of yourself. If you can keep going for a bit longer hopefully she'll be able to get the suck technique. I think you can always get your supply back with a lot of work. Keep going back to the bf counsellor to keep checking your latch and for support!

Let me know how you get on - hope the weigh in goes well tomorrow.

Best of luck

crikeybadger Mon 11-Jul-11 21:37:31

This all sounds really tough featherblue. sad

I haven't been through the same thing I'm afraid, but I wanted to post something as you sounded so down.

Firstly, I wouldn't assume that you have low milk supply because of the amount that you can express. There's no link between milk supply and how much you can express- some people can express loads, some just a few drops. That said, as you say, your breasts may not have had sufficient stimulation in the early days to get things going so it's a great idea to try the double pump.

I'm also surprised that they weighed her before and after a feed to see how much she was taking as I didn't think this was deemed to be very accurate nowadays.

You could try breast compressions to get more milk in to DD (Jack Newman has a video clip).

I really think that you'll get some good support from any of the breastfeeding helplines or an organisation like milkmatters who are well respected and v knowledgeable and know a lot about tongue tie.

I know that not all babies feed easily after a tongue tie clip and it can take a couple of weeks for them to relearn how to breastfeed with their tongue in the right place.

Final thought... would it be worth considering a supplemental nursing system ?

Hope things get better for you soon and fingers crossed for the weigh in. smile

featherblue Tue 12-Jul-11 02:29:52

Thank you so much for the kind words. I'm trying to stay positive, but it's really difficult atm. I expected a magic fix with the snip last week, and the fact that it's no better is upsetting.

Japheimel- it's really good to hear that you were able to bf. It does give me hope.

Iloveholidays- I'm so upset that she wasn't checked in hospital after we had so much trouble feeding. I fed her for two hours straight, then tried to sleep for 30 min and was yelled at by a midwife b/c she was rooting/hungry. How am I supposed to know that's not normal as a first timer? And that painful nipples aren't normal? Just feel very let down by the hospital care. We might be in a very different position if they had checked. And it breaks my heart to think how hungry she was for so long. sad

Crikeybadger- thank you for the links. I am trying breast compressions and she seems to get a bit more. I will contact milkmatters for advice. I feel like no one has any idea what to do and I'm sort of fumbling along.

I will let you know how we get on.

japhrimel Tue 12-Jul-11 08:44:35

An SNS may help if LO can latch but gets bored or tired too quickly. We used one for a short while with DD. But I'd try compressions, leaning forwards and switch nursing first.

Unfortunately poor advice and missed issues seems to be the norm not the rarity when it comes to breastfeeding. DD lost so much weight when we got home from hospital because no one checked on us for 5 days - with a baby just out of SCBU! Still cross about this - and we didn't know really green poo in a newborn was a bad sign. sad

crikeybadger Tue 12-Jul-11 10:14:08

It does sound like you were really let down in the hospital featherblue. If you've got the energy, it might be worth letting the hospital know about your experience and how you feel now. I think it's PALS that you can email.

Hope you have a good day today. smile

iloveholidays Tue 12-Jul-11 20:21:11

It does sound like you were let down, but unfortunately it seems that midwifes never seem to check for tongue ties and all too common it gets missed. It took 48 hours (so a lot of wasted time!!) of a lot of different midwifes trying to get my DD1 latched on before a new midwife suggested it might be her tongue!! I couldn't believe it wasn't an automatic check. Luckily this time I asked the midwife to check as DD2's also looked tongue tied.

I hope the weigh in went well today and things are improving.

Good luck

Selegas Tue 12-Jul-11 20:29:30

My DD was born tongue tied and couldn't latch on. We didn't have her snipped. I expressed and fed her with Closer to Nature bottles for two weeks then tried breast feeding again.
It worked, she latched on and we were away. She's now 9 months and i'm still breast feeding her. I'm sure your daughter will latch on better soon.
Don't worry, you're doing great.

nolembit Tue 12-Jul-11 20:33:15

Have you thought of cup feeding?

http://www.thenewbornbaby.com/feeding-baby/cup-feeding/

nolembit Tue 12-Jul-11 20:35:18

www.thenewbornbaby.com/feeding-baby/cup-feeding/

featherblue Wed 13-Jul-11 13:08:46

Hi everyone. The weigh-in went well today. She's .092 over her bw now. Though that's mostly from formula. But at least she's gained. I think if my supply were ok I'd feel better about everything, but I'm not very hopeful about it. Still pumping constantly and hoping to reintroduce the left breast today if it's not too excruciating. Hopefully then I can build up supply in my right breast b/c I'll be pumping it for longer each time. It just never ever feels remotely full, while my left does. She doesn't stimulate it the way the pump does.

I'm hoping I can at least express until she's 6 or 8 weeks, even if she still can't get anything from the breast. I'm so sad about it. And dread reading for the rest of my life how I've ruined her health by being unable to breastfeed. sad

iloveholidays Wed 13-Jul-11 14:53:05

That's fab news she's put on some weight... and there is no way of knowing whether its the formula or breastmilk but most likely both!! smile

I've haven't got experience of babies not latching on well for longer than a few days, but I know when DD2 was a newborn I fed her more frequently on my right as it was more comfortable for me. Now she is stronger (nearly 4 months) and can hold her head better she's feeding better from the left and definitely starting to build up supply in my left hand side. Others have said that you can improve the sucking so I think you should have hope that you can - its just unfortunately that these things take time, but if she is able to latch on then you'll definitely be able to up your supply.

Good luck and do what is right for you and your baby... not anyone else.

japhrimel Thu 14-Jul-11 19:33:22

Hang in there. Bfing a 4 week old baby is so much easier than a 2 week old and a 6 week old is easier too - as they get bigger and more aware, problems like opening the mouth get so much easier whatever.

If you can get your supply up through pumping, you can get the milk into LO and have the confidence in your supply to give you time to establish latching.

FWIW are you trying to insist on a good latch with bottles, not just you? We found that DD had to learn how to do a proper wide latch on the bottles before she really cracked it on me. It does require patience and only understanding caregivers giving bottles - ie. anyone who will shove the teat into a barely opened mouth shouldn't be allowed to feed the baby.

Mollcat Fri 15-Jul-11 08:27:50

There is hope. My baby was 6 weeks old when his TT (60%) was snipped. It took two weeks and three sessions of cranial osteopathy to get to the point of him latching on without pain and damage. As you know already, a lot of blood, tears and feeling like I am verging on the edge of insanity was involved in getting that far and I've spent many of the last two weeks (in fact the last 8.5 weeks) in some dark places. It'a rollercoaster, but you can get off it whenever you need to, or stick with it, or slow it down, though it doesn't feel like it at the time. It's two steps forward one step back at the best of times and often not even that.

I stopped BFing at 3 weeks and switched to feeding EBM and formula. I really had no choice and am so angry now that the TT was missed. We still have a long long way to go in terms of learning how to breastfeed, my son getting better at it and me building up supply.

Please feel free to PM me if it would help to write it down (to the extent you have time) and have someone listen who's been/is still there. Total strangers on here were kind enough to support me and it helped me feel less desperate and alone.

There are suck training exercises and tongue training you can do - put a clean little finger in her mouth and get her to suck on that. Also, train her tongue, stick yours out and try and get her to copy you. Put a clean finger on her lower gum on the right and she should wiggle her tongue over to it, then swap to the left and wiggle your finger there.

Has anyone looked at the baby's palate? High (or bubble) palate has caused us issues post-snip and often goes hand in hand with TT because the tongue isn't mobile enough to help the palate form properly in the womb.

Above all, you should know that you are doing the most fantastic job for your baby. It's taken me 8 weeks to start to recognise that. You wouldn't be here asking us otherwise.

featherblue Sat 16-Jul-11 15:03:52

Sorry for the one-handed typing.

japhrimel - unfortunately her latch is poor on bottles, too. She just can't do the wide mouth with her tongue out. Her latch on me, though she doesn't stick her tongue out beforehand, feels comfortable now and looks very good on the outside. So basically i think it's more the supply issue now. I'm just worried
i'll never have enough as she didn't stimulate them at all for the first two weeks (and still not enough?).

Mollcat you really do give me hope. How is your supply? I know nothing about palates, but i'd imagine there's a problem, with our luck. Is there anything that can be done to help?

The gp increased my domperidone. I hope that helps my supply. I tried her on the left breast 4 times, and it was horrific, so i'm back to just pumping that one and hoping i can keep the supply in my empty-feeling right breast in the meantime. Just trying to continue this way for as long as I can.

Mollcat Sat 16-Jul-11 17:12:33

If the latch is comfortable then I wouldn't have thought there is a significant issue with the palate or anything else going on physically with her mouth. If you were still getting wedge-shaped nipples and lots of pain (similar to tongue-tie symptoms) then that could indicate a palate problem. Some of them grow out of it (please let that include mine, and soon), we're also having some osteopathy to try and sort it out (among other things).

Really difficult to know on the supply because I've no idea what he's getting when I do manage to breastfeed him. I guess I'm producing around 60% of what he needs but who knows really. The lactation consultant thought it would be OK and I should make it to EBF with frequent feeding and gradual withdrawal of top-ups but that was when the tie was snipped 2.5 weeks ago. Fenugreek helped me but I've stopped taking it now because it's possible he's struggling with the flow on the left and that's what's causing him to bite down on that side. Or of course it could be some totally different issue.

What was horrific about trying her on the left breast?

featherblue Sun 17-Jul-11 19:02:09

60% is so good! I think that she maybe gets 20mls from my right breast, at most. She almost always finishes a full feed top up after. sad Which is why I worry.

My left nipple was significantly more damaged from her latch before the snip and it's still way too painful to feed from it. But my supply is much much better in that side. I think my last chance is seeing if I can make it work when I can use the left side as well. Then maybe my pump will increase supply in my right (as will pump for longer on that side while she's feeding on the left). But we'll see. I think the left probably needs another week to heal.

I hope your palate problems start to ease as he grows. So it's still painful now?

Mollcat Sun 17-Jul-11 21:48:44

Yes, unfortunately it's still painful now, however... I've confirmed today that we have thrush. I ought to be "Oh no" but in fact I'm a bit "Ooh, good, that could explain why I've had different pain since the point at which I thought the latch had improved a bit". There was an initial improvement immediately in that he could actually latch but it was still painful, then another improvement after 2 weeks plus osteopathy. I'm hoping that if I can clear the thrush it will turn out that things are less painful than I thought. It still won't be perfect as we had 6 weeks of bad habits and he's still largely bottle-fed. I think we've had the thrush for weeks and I just didn't realise because of everything else which was going on. After a while the different types of pain all sort of merge into one and mask each other as you'll no doubt know!

I'm sure my supply was less at your stage than it is now and we were giving mostly top-ups, but the pump + even limited breastfeeding increased it. Fenugreek capsules really helped me (3x3 daily - health food shops should sell them or you can order online from Holland & Barrett). I have also noticed now we're back at the BFing again that just BFing lots (or trying to) ups the supply hugely. I have had a lot of days trying to BF, damaging the nipples, then expressing the next day to let them heal and noticed an increase in supply from all the skin-to-skin and stimulation.

Have you looked at the kellymom website for advice on supply issues? There is a section on how supply actually works and you'll see there that your supply won't settle down for a while yet - up to 12 weeks or so I think. There should be plenty of time to build it up again. I didn't ever really get mine established properly (milk didn't come in for a week) and didn't BF at all for 3 weeks (just expressed) and I can still get 200-250mls pretty easily first thing (and I'm not at the stage yet of really actively increasing my supply as I need a baby who can get it back out again efficiently first - the pump doesn't quite do the job enough). But I know the first time I pumped I got 10 mls and at the time I was pretty chuffed with that.

Mollcat Sun 17-Jul-11 21:56:44

And for the sore side, you could try Jelonet dressings (ask your chemist - supermarket pharmacies should stock them). They're quite large so cut them into four to make four nipple area-sized ones. They worked better than Lansinoh for me. Dead cheap - I think each sheet was 68p from the supermarket. They're paraffin gauze dressings designed for burns but recommended to me by the BF support group I went to.

Here's a link to kellymom too:

www.kellymom.com/bf/supply/index.html

kw13 Mon 18-Jul-11 12:30:22

My DS was a tongue-tie and I didn't discover for 5 weeks - by which time I'd given up bfing. And couldn't get a referral until he was 8 months old. However, bfing isn't everything. It is important - but so is the relationship with your baby and those few months. I'm glad that I bf for as long as I could (and you are doing a fantastic job) but it is easy to lose perspective. Formula isn't evil (and it may allow your partner to become more involved - that was a huge benefit that I hadn't foreseen) and you have bf those all important first few weeks. I hope it all goes well!

featherblue Mon 18-Jul-11 13:40:05

Mollcat- hopefully the thrush treatment will bring you some relief. I can't imagine getting 200-250mls. I pump at least 6-8 times a day and only get 40-80mls each time, and out of that only around 10mls from the right breast after she feeds. And that's with taking the highest dose of domperidone I can plus fenugreek. It makes me wonder if supply has been the issue the whole time, and if my supply had been fine she would've been able to get enough (though very painfully) even with the tongue tie. I never got engorged; I never feel a let-down. But I'm trying to increase supply and will give it a go when my left nipple is healed. That way I can do switch nursing, etc. I have read the Kelly mom stuff on supply, but I feel I can't really move forward much until it's healed.

I have some gel dressings from my GP that definitely help. I think the nipple just needs time.

kw13 - thank you. I know that you are right, and I am coming more to terms with the fact that I will more than likely not be able to breastfeed. And I even think many of the health benefits are exaggerated/not as cut and dry as everyone would like to believe. But she loves to breastfeed. sad It breaks my heart when she feeds and gets nothing out. And the thought of not being able to offer her the breast when she obviously wants it breaks my heart. I don't know how I'll comfort her without breastfeeding, though obv people do it all the time. She just loves it, and I'm so so sad I can't make it work for her. sad

lucy101 Mon 18-Jul-11 16:28:21

Hi there - I have been trying to find time to post as my experience has been similar to yours but now at 5 months this week I am BF about 70% (BF 5-6 times as day and formula top ups at 3 of those feeds). I won't post my whole story as it will take ages (if you search my posts you can read it) but my baby had a TT that was snipped twice in the first 10 days... but he refused the breast completely for the first three weeks (I think from being repeatedly shoved onto the breast in those first few days). My milk also never seemed to come in and I had a LC and I started taking Domperidone, Fenugreek, Blessed thistle and using a hospital grade pump etc.. BF was painful (the gel pads saved me!) but gradually got better and at around 10 weeks I realised that BF was finally working.

I never could get to 100% (I tried three times and each time he started to lose weight) and was devastated for some time that my baby had to have formula. However I now think the TT/palate/milk transfer/supply problem is really rather complex (and sometimes however hard you try it won't work) and am just glad that my baby is fit and well and is getting the BM that he is getting.

I hope this gives you hope that things will get better, stop hurting and with any luck you might be able to fully breastfeed even if it takes a few more weeks to get there - I was pretty discouraged by all the people who said that once the TT was snipped it would be OK and it wasn't in our case.

featherblue Tue 19-Jul-11 17:23:26

Hi Lucy. Thank you for this. It does give me hope. Do you have to pump to keep up your supply, or does your baby stimulate it enough? I would be so happy if she could get that much from me. Just feel she gets nothing now. 10 weeks is a long time to keep up this punishing regime, though. But I can't imagine stopping, at least before I can give it a proper go with both breasts. But it is really taking it out of me.

lucy101 Wed 20-Jul-11 11:59:03

Hi there - it was a punishing schedule of BF/give expressed/give formula/pump and then all over again (which was hellish to keep up, I really don't know how I did it sometimes) so I gave up pumping at around 12-14 weeks (I did take off the odd week before that when I thought my supply was going to be ok and it wasn't sadly). However my supply hasn't gone down since then and has probably gone up as I haven"t increased my top-ups.

I offer the breast a lot and as he has got bigger and stronger he has definitely got a lot better at breastfeeding so I think some of the problems with palate/milk transfer do naturally resolve if you can hang in there.

It has taken me a while to get over the fact that we have had so many struggles (and it is hard to think clearly about things when you are so exhausted and hormonal) but we really are there now.

I think as you need to be in this for the long haul it is so important to get healed and then just do the best you can and hold onto the fact that you have given any breastmilk at all.

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