What can I do

So because dd can't latch properly she has to over compensate a lot with her suck which she does quite well because she is thriving. However her having to suck the way she does causes her to have really bad sucking blisters. With the colder weater her lips aren't just getting sucking blisters but getting red raw like she's been out in the wind and licking them all day. I have been putting cream on them but it isn't really helping and this morning her lips were so bad that they were bleeding.

I don't know what I can do for her. She doesn't want to feed because her lips are sore and even when I do attach her she isn't sucking the way she normally does so she isn't even managing to get let down to happen. I have to do it for her but once it has happened she is just sucking and not swallowing.

I have another weeks wait before I can even get into my GP to get her referral to the oral surgeon. I have tired calling, they say too bad. And then when I finally get the referral who knows how long the oral surgeon will be booked out for, not to mention the fact that we have to travel so far to see him. I am starting to get really scared that he won't think her tie is bad enough to snip. She can move her tongue quite a bit, I honestly think its something she will grow out of as her tongue stretches so I am afraid we will go to all this effort to be told there is nothing they can do and we are left still with the same problem. I actually think her extensive lip tie is what is making the whole problem worse and without it she might be able to manage her tongue a bit better, I don't know. I just feel so defeated right now.

I hate living in the middle of nowhere where it is so hard to find help or the people you need. It's such a stupid thing to feel like giving up on the whole breastfeeding thing when its something that could be possibly so simple if I could only find the right help.

We have been through 10 hellish weeks, by the time we even manage to get it sorted so much of her suck will be habit and it could take us months to retrain her how to suck. I'm feeling so frustrated and I don't know what to do for her in the meantime.

:hug: Argh, that sounds so frustrating for you...
Have you tried calling the ABA helpline? (1800 mum 2 mum) They have some counsellors that know a lot about tongue tie, so could perhaps give you some advice?

That must be so frustrating for you :hug: I wish I could tell you how to fix it

Do you have a particular paed oral surgeon in mind? If so make the appointment now, don't wait for the referral. You can always cancel it if circumstances alter in the meantime.

MumOf2Boys - which state are you in? I'm in NSW. I went to a surgeon for DD's mild TT after getting the referral from my GP. He refused to snip it and told me to come back when she was 3mths (no way) and it cost me $120. I went back to the LC and she organised for me to go to Westmead Dental to have the snip done for free. She rang them and the registrar there said if it was causing feeding issues then she has no worries snipping it. By the time we went DD's TT had actually split a little itself but was still causing nipple damage so they still snipped it no worries. I was freaking out that they wouldn't snip it as it's a 7hr drive to Sydney for us but they did it no worries. It was the smallest thing. Also after the LC who is also a MCHN faxed a referral i got in within the week. Have you got a free LC or MCHN who could refer you?
I know it feels all too hard at times. DD had her snip about 4.5wks ago when she was 4.5wks old. It has been hard. She is still learning to attach properly but we are getting there and we have whole feeds now which are pain free (woohoo).
If you want more info feel free to PM me.

oh hun sounds like you are going through so much :hug:

While her lips are so sore could you try expressing into a cup and putting that to mouth and feeding her that way? just so that she is actually getting a good feed and giving her poor lips a chance to heal. I would also put breastmilk on her lips to help with the healing. Maybe also using breastmilk to moisten your breast and her lips before a feed might help with the friction. Paw Paw cream might also help her lips.

Is there any other Dr in a near by town that you could get into see, or go into your GP's and demand an appt? I know what its like not to have access to a good GP its so frustrating but surely if you turn up and show them just how bad your DD's lips are they cant refuse. Or try the A&E, you might have to wait it out for a few hours but at least you would get seen.

Sorry that you and your princess are going through this, I hope that it gets better sooner rather then later.