What to do next?

[anne74]

DS is now 5 1/2 wks but born at 34+5 and has had Tongue tie done twice, once at 3 wks and again a few days later. I have seen infant feeding advisors (from the pct) 4 times in the last 2 weeks and now feel they have washed their hands of me as they don't know what else to advise. The last comment made was to try and persevere for 'a few more weeks' as he was prem and had the Tongue tie issues. I feel abandoned and need help.

DS is having real issues latching on. He doesn't open wide enough and so doesn't get a deep latch. His tongue feels like sandpaper on my nipples and both are agony. One nipple tends to end up lipstick shaped and the other is pinched into a ridge.

I rang the NCT line and didn't find them that helpful. I was considering seeing a lactation consultant privately but am not sure if there's something else I can do. I dont want to give up. My goal was to at least bf til his due date which was yesterday but I do really want to keep going. The lady on Thursday tried a nipple shield but it didn't seem any less painful so she said not to bother. I dread feeds as it's so sore.

Can anyone help?

Anne, I haven't got any advice, I just wanted to say congratulations on your DS and well done for bfing for this long is such difficult circumstances.

Hope you get the support you need soon

Bump.

Hi. I can sympathise. I thought getting my DS's TT snipped would fix my problems (which sound the same as yours), but it didn't help at all. I now express almost exclusively (we try the boob every few days when I'm feeling brave, and he has no problems feeding but it still kills me and I still get the lipstick nipple.

I'm hoping that one day, i'll pop him on and it'll all be fine, and my supply will be ok as have been expressing. I'm going to try yo give myself to three months like this (DS is 7 weeks), then re-evaluate.

Maybe you could try something like this so that he still gets his BM?

Try the NCT line again - you are bound to get a different person

Where are you? Is there a local LLL group or NCT or other BF drop in that you can try?

Thanks for your help. I did give him a couple of bottles but I was advised to avoid it if possible as it would make him pout rather than open his mouth wide.

I live in southwest London/north Surrey. I'm not sure what groups there are other than the bf clinic I've been going to.

The daytime feeds are mostly bearable but they seem to get worse as the day goes on. Tonight for example I have fed him 3 times since 8.30 when normally he goes 3hrs. The problem has been that I've had to take him off before he's ready because my nipples are so sore. He then won't settle until he's gone back on. He's been screaming blue murder tonight until I gave in and put him back on my already excruciatingly painful nipples. Now he's settled, for now.

I don't know if this is something that can be helped over the phone or if I really need someone helping in person. I don't know how much longer I can carry on like this.

I don't have much to add, except to say that a friend of mine had similar problems. She used nipple shields to help with the pain (I know you've said you've tried them, but it might be worth another try every now and then in case it changes?) and gave an expressed milk top up when she couldn't continue the feed any more. She'd then give a formula top up if required and then pump for the next feed etc.

After several weeks of this effort, she was able to feed for a bit longer each time, and eventually ditched the shields and reduced the top ups to nothing. I think she was back to just breastfeeding by about 6 weeks, by which time she'd relaxed a bit, the babies mouth had grown a bit, her nipples had got used to things a bit etc etc.

I'm not by any means saying that you should persevere if it is too painful or difficult to do so, but I wanted to share a story where just going with whatever worked for now, with a view to getting back to 100% breast can work out.

I really hope things improve for you soon

Just had another thought - if your supply is ok, have ou tried a dummy once you know he is well fed? My twins would never come off the boob if they had the chance, so I have introduced dummies to save my poor nipples. Worth a thought ....

anne sorry to hear that you are still having difficulties, agree with Eldon that you should try the NCT again, you will probably get a different Counsellor and they should also be able to give you details of any Counsellors that are local to you.

Thought that you might also find these links from Kellymom useful Latch and Latch Resourses Nipple Shiels and Sore Nipples.

Here are the details of local LLL groups and here is a list of Bfing Support groups from the ABM website. TBH these groups are worth going to even if you aren't having difficulties and it gives you a chance to get out of the house, have some adult company and you might even make some friends.

If you can't find a group local to you, or a Bfing Counsellor let us know and someone may have the details for you.

Keep feeding and keep posting to let us know how you are doing .

As a quick solution I have made an appointment with a lactation consultant and she is coming to see me tonight. The first appointment lasts 2 hrs and then she will visit again and provide telephone support. I was a bit desperate as my nipple has now started bleeding.

Thanks for the details of the groups. I'm sure they will be worth a try. As for nipple shields, I'll see what the woman feels tonight. Right now I'll try anything.

Will keep you posted x

Hope it goes well for you tonight anne. Like you say it would probably be worth going to the groups too, just to get out of the house and have a cuppa.

Well I had the appointment tonight. She was great and very sympathetic. She thinks there is still an element of tongue tie at play. She felt that we were both doing everything we could but that his tongue was restricted in its movements. She has given me the number of another lactation consultant who can review the tongue tie privately, hopefully in the next 24 hrs. In the meantime she has suggested that I don't even try to bf (both nipples are now bleeding) and recommended either using nipple shields or bottle feed using EBM or formula. She also suggested that I use ready made formula to make it as easy as possible for myself in the next 24 hrs.

I managed to get to Boots just before they shut and got all my supplies and we'll see what happens next.

Thanks for your support.

anne glad you are happy. Did she give you any information on helping you nippes to heal?

Nipples

So sorry you're having such a hard time. Try lots of lansinoh on your nipples and protect them from your bra by using breast shells. The book 'The Food of Love' about breastfeeding has got great advice about how to heal nipples, positions to try when babies are struggling and is funny as well as informative. I'll consult my copy and return...

No guidance about how to heal other than not using them. I just tried the nipple shield but couldn't really get it in position right so he's had a bottle of formula. As soon as I can get him to settle I'll express and maybe also get some supper!

This breastfeeding business is so much harder than I ever imagined!

Remember to take painkillers if you need to
Kellymom has good info on moist or wet healing

Best of luck

I don't have much else to add, but lots of sympathy here from me. The first 5 months were pretty gruelling for me until my DS had his tongue tie cut, and the first 3 weeks were a nightmare. BF has been way harder than I expected too :(

There may well be something in what the lactation consultant said about the tongue tie still playing a part - and LCs who have specialty in this area will be able to assess your baby's suck - very important as your DS will probably have practiced sucking in the womb and but have learned in a restricted way IYSWIM? Did they give you any exercises to do to strengthen his muscle?

The only other thing I can think of is that my DS also had a torticollis (twisted neck) and that made feeding on one side more difficult as he had a tight jaw on one side. Maybe ask the LC if there might be other issues - especially as you get a different lipstick shape on each side?

About the nipple healing - definitely try Kellymom for moist/wet healing, and also the breast shells if you can get some. Also I used to stick breast pads to the inside of vest tops with masses of lanisoh as bras hurt too much.

You're doing a great job BTW, and congratulations :)

anne how's it going today? Have you managed to see the other LC? Have you read the Kellymom link on sore nipples and have you found any of the information useful?

I have managed to get my son covered on my BUPA policy and am trying to get him seen by a consultant at Kings College Hospital in Dulwich. It's proving such a nightmare to get someone to see him quickly. I rang one consultant's secretary who told me that if it was done on the NHS it would be a 5-6 week wait! The other LC didn't ring me back but the one I saw last night has been really helpful.

One LC who I spoke to recommended a particular wound dressing for my nipples so I'm waiting for the chemist to ring me back to let me know if they have it or not.

DS was bottle fed all night with EBM and a bit of formula to make up the amount, although the LC I spoke to this morning told me he should be having 60mls per feed and he's been having between 70 and 90mls. Woops! I don't see him being satisfied after only 60mls but we'll see.

DS has slept all day today which is very unusual for him but maybe it's just because he's had better feeds and is more satisfied. I'm guessing I shouldn't worry about this...

I had a look at the Kellymom info and I'll give some of the suggestions a try. The tricky thing is having hands free to do anything. DS doesn't like to be put down at the mo and I'm on my own for a few days. will try and find a moment though.

I hope I can get someone to look at the tongue in the next day or two. I really don't want to be bottle feeding for much longer if I can avoid it. I'm worried that if I have to bottle feed for too long I'll never get back to breastfeeding.

This is all so frustrating :-(

Amount per feed depends on the number of feeds. Breastmilk-fed babies take an average of about 750ml a day from 1-6 months so divide that by the number of feeds to get a starting point for volume.

If you are finding it hard to get him to settle unless he is in your arms maybe you could try a sling. Have you got one?

I have got a sling. I probably don't use it often enough. I might give that a try tomorrow which might let me do a bit more.

I tried being strong and giving him just 60mls tonight but there was just no way. I gave him an extra 30mls (first 60 was ebm then 30 was formula) and then he was beautifully calm and is now sound asleep. I'll try and work out the maths. I am guessing that he's now about 3.1kgs but I'm not entirely sure how to work out how much he should get. He's having about 2/3 to 3/4 ebm and the rest is formula so I don't know if that alters things.

anne, I'd ring one of the helplines about the quantities if I were you. They should have all the information you need

I woke up for his feed just now with such sore boobs feeling like the pump I'm using just isn't draining them properly. I decided to try the nipple shield rather than having to express. I've managed the feed using them but it was still quite sore. I think I had them the wrong way round which may not have helped. Does the cut out bit go under the chin or nose? The worst part of the feed pain wise is now as I've got major vasospasm going on in my right nipple and it's really painful. I'm beginning to wonder if maybe that's contributing to the pain during the feed. Maybe the vasospasm is kicking in before he comes off the nipple. I'm now having to be really careful to make sure DS's legs don't brush against my nipple otherwise it's agony. I'll see how the next feed goes at 4ish.

OMG! well I tried the nipple shields again but it was agony! I don't know if it's from friction of the silicone against the areola but I couldn't continue. I have given him formula as I can't bear the thought of pumping as it rubs. I'm going to see if I can hand express bait and then I'll see if I can get a different pump asap. I'll try and hire one in the first instance. I'm hoping that I'll know by lunchtime how long this is all going to go on for. I really don't want to bottle feed for long. My worry is that the longer I do it for, the more used to it he and I will get and it'll just be easier to carry on. I have asked myself if all this hassle is worth it and would it not just be better to move to bottle feeding but I think I do want to give it this last shot. I'm not sure how successful it will be though. We'll see how the morning pans out.

Anne Really sorry youre having such a rough time of it. Which shields are you using? I started with the mothercare ones but they just didn't work at all and then bought the Avent ones which are now a dream. They still hurt for about 3 days but it wasn't quite so painful as DD directly on my nipples. I was also bleeding and lipstick nipple and know how tough it is when you just dread the feed.

Maybe try a different brand of shield and check you have the right size. Avent come in at least small and medium.

Best of luck with your feeding.