Breastfeeding pain and how to keep going?!

[JuliaBD]

Hi all,
Looking for some advice if possible. My little girl is 7 weeks old today. Breastfeeding has been a disaster from day one and I am very close to giving up! (even though I really don’t want to)
Baby was born via ELCS, we tried to get her to latch in recovery room/ward throughout the hospital stay and she was having none of it. Milk didn’t come in until the end of day 5 so this whole time she was formula fed. Eventually I managed to get her to latch after several attempts but she would just come off the breast and get VERY frustrated as if she didn’t know what she was doing. I ended up buying nipple shields and that improved things slightly. The problem is the feeding itself, she always falls asleep on the breast (within 5 min I would say) and never quite finishes the feed, which means that I’m stuck to the sofa feeding for least 12- 14 hours a day (yes I dont even have time for a shower or to have something to eat as I’m always trying to feed a crying baby)
To cut a long story short, I googled her symptoms and it looked like she may have tongue tie. I asked several midwives including our HV and they all said they that cannot see a tongue tie despite the classic symptoms (clicking sound, bleeding and misshapen nipples, windy baby, reflux etc)
Now, I managed to find a private LC who came around and indeed confirmed a very wide and tight tongue tie and referred us for a division on the NHS. Since the appointments are taking ages I decided to reach out to another private LC/tongue tie practitioner hoping to do the snip on the day. Having checked DD’s mouth’s several time she said there is not tongue tie, just a high palate and very tight muscles around the jaw area which stops DD from latching properly. She recommended cranial osteopathy instead.
Has anyone had any experience with lactation consultants saying different things? I’m really confused as who to believe, I’m trying to breastfeed but it’s causing me a great amount of pain and nobody seems to be helping!! (i’m currently expressing/FF but it’s driving me nuts)

Hi, I am sorry I don't have any experience of lactation consultant's I am sure someone will post soon. but I just wanted to offer some love and support. Breast feeding can be so so hard ( as well as rewarding when it goes well)You are trying your best for your baby and that's all you can do. Please don't be too hard on yourself if it doesn't work out or you end up mix feeding. You will eventually find your groove. It can just take some time.

Congratulations on your baby!

Bf is hard. And this sounds really unsustainable for you.

If you think it seems like TT, keep going with the referrals. Also, try the Kelly mom website for general bf support.

I know you'd love to keep on bf, but there's no problem or stigma with formula. Just wanted to throw that in, in case it's a guilt thing.

Hopefully, you can get the tie snipped and everything becomes a whole lot easier!

First of all, congratulations, and well done for getting this far.

If she's having problems latching, there are things you can do.
A good way to secure a latch is to make your hand into the shape of a letter C, thumb up, fingers under. Grip your boob tightly with your C shaped hand back a bit from the areola, and shove the firm nipple plus areola into her mouth as far as it will go. The trick here is not to have a floppy areola. Your nipple should go quite far into her mouth.

If you find she's constantly trying to feed but falling asleep at the wheel, so to speak, you may need to try spacing out feedings. Start with half an hour between feedings and use a pacifier. You can stretch to an hour, then 1.5 hours and up to 2 hours. The pacifier should help soothe her a bit. Take that shower and have something to eat and drink.

If you think she may be losing weight or just maintaining (not gaining) you may need to try breastfeeding first and then supplementing. Weight gain is important.

I would say if 2/3 LCs have said no tongue tie then it's not a to guess tie problem.

I would get her checked for thrush though.

It sounds very similar to by DD. I have also had a load of conflicting advice from different breastfeeding experts. We have had the tongue tie fixed but it’s not a magic fix and I was told it might take another month for her to learn how to move the tongue muscles properly. I would get her seen by someone who specialises in TT and doesn’t discount posterior tongue ties like some doctors. It could be tongue tie and the high palate - that seems to be the case for my DD. The midwife who did the tongue tie procedure also recommend we try cranial osteopathy so I have made an appointment to see one although I’m a bit sceptical about it.

You have been much better than me at persevering with the breast feeding. I got so discouraged by my DDs poor feeding the I’ve mostly been pumping and just putting her on the breast occasionally to check for improvements. It’s so tough and I really feel for you! I have seen a slight improvement in her latch since the tongue tie division but it’s slow going to get back to breastfeeding without risking her not getting enough as I never managed to get my supply high enough by pumping.

I would just say be careful of those who diagnose a posterior tongue tie and charge money to fix it.especially if others have said there isn’t one present.
I had 3 different people diagnose my baby with a posterior tongue tie and then when we got to our appointment at the tongue tie clinic at Alder Hey Children’s Hospital they said he didn’t have one and their stance is cutting ptt is actually cutting normal anatomy.
They said to us baby had small jaw and only time for them to grow bigger would help things and improve the latch.
unfortunately after a traumatic birth and no at home support (partner had to go back to work) I couldn’t carry on breastfeeding to see if they were right but if you have the time and want to continue, definitely speak to some breastfeeding professionals, try different latches etc before resorting to surgery. People say it takes further time for them to relearn after fixing a tie and to do exercises but how do you know that latching didn’t improve simply from baby’s mouth growing bigger anyway?

Honestly I would get a second opinion. My baby had both tongue tie (not diagnosed for weeks despite me saying feeding was impossible) and high palate. The NHS doctor and the feeding specialist said the tongue tie was "so mild" it couldn't be causing our problems. The private lactation consultant said it could absolutely be contributing so I had it done privately.

It took about two weeks for baby to learn how to latch and we were able to stop pumping and formula top ups. The pain stopped instantly! A year later breastfeeding is still going strong!

You've got this mumma!

I saw two different IBCLCs - one said my daughter definitely didn’t have a tongue or lip tie. Like @Pizzaandsushi, we went to the tongue tie clinic at Alder Hey but they agreed that she has (had) both. She had the tt divided and we were referred to paediatric dentistry for the lip tie.

Is there breastfeeding peer support in your area? We have a charity called Koala in my area and without them I wouldn’t have been able to breastfeed.

if it’s hurting then there’s something wrong. You’re the one who is there for every feed, who hears the clicking, who experiences the pain. Although you spend all of your time feeding, keep pushing for support. Don’t space out feeds - if there’s a milk transfer issue then baby is just going longer between feeds that already don’t sate.

Full disclosure - my daughter’s tt meant that my milk never came in sufficiently, even with domperidone, so we combi fed in the end, but the top ups at the end of feeds were the difference between an angry, hungry baby who wasn’t gaining and a happy baby who finally met the 0.4th centile.

There are lots of IBCLCs on instagram. I particularly use Olivia Hinge, who talks a lot of sense.

We had the PTT cut by the NHS in Norwich so it does seem an area where there are a lot of differences in opinion. Our local trust in Cambridge doesn’t do it but there is a private practitioner who does whom a lot of people speak highly of on a local parents Facebook group. Of course it’s hard to rule out feeding also getting better as the baby gets bigger. It might be the same with cranial osteopathy where there is little hard evidence it works but lots of positive anecdotal evidence. I believe high palate is often connected to tongue tie so the two might not be independent of each other.

I never feel bad about formula top ups as the most important thing is that DD is getting enough food and growing well. I’ve come to see advantages of combination feeding while waiting for the tongue tie assessment as your partner can help out a lot more with feeding and you can sleep for longer than 2-3 hr at a time.

@tithead22 What sort of combination feeding pattern did you end up with? I think we are also heading that way.

@trrk under the guidance of an IBCLC and a paediatric dietician, we ended up giving a 90ml top up after breastfeeds at 6am, 10am, 1pm and 4pm and a 120ml bottle before bed. She was only little and never progressed beyond a 150ml feed! I was able to make enough milk to keep her sated at night. After weaning I was able to cut down the bottles instead of the breast milk, so I’m still feeding and she’s almost 10 months.

Before the top ups she was always falling asleep at the breast and clearly exhausted because she wasn’t getting enough milk from me 😭 poor baby. I’d exhausted the breastfeeding peer support options and did the increasing maternal milk supply pathway (feeding and pumping every two hours day and night) which sent me west but made a difference. I already had PND though so it was tough and I couldn’t hack it.

ANYWAY @JuliaBD my supporter always used to tell me that breastfeeding shouldn’t hurt and I didn’t believe her until after the tt was done. Latch suddenly improved and continued getting better for a few weeks and then feeding was finally comfortable.