Would like your ideas Barb

I had a meeting with my LC/chn, LC/mw & speech therapist today.

I'm going to copy posts from another thread about our issues if thats ok...

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After 8 weeks I'm still cracking every few days, but only on the right side (have tried football hold on that side). Nothing is right.

Summer is clicking with every suck. So loud that when on the phone & feeding this morning my friend jokingly said 'tell that baby to latch already!'

I dunno why, but its not happening. Position, reattatching, no matter what I try we can't fix it. She slips off, gulps air & only feeds through letdown & is finished. Thats 10 minutes at the most.

She has good out put & is gaining weight ok. Could be better though. Averaging about 100 grams/week.

They think its more about the shape of her mouth. She has a high narrow palate & possibly her suck/swallow reflex is out of wack. There is no visible tongue tie, unless its posterior.

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Well, I think we are even more confused about what to do...

First of all, instead of suck, swallow, suck, swollow, Summer does suck, suck, suck, suck, suck, gulp & try to breath...suck, suck, suck, suck, suck, gulp, cough, splutter, breath...
Then, attatchment is perfect. Try to flange her lips out more & hold her in the 'madonna' hold, but other than that attachment is pretty much perfect.
She also has a pretty lazy suck, & while attatchment is fine with the way everything is lined up, she's not got the normal strong suction/seal she should have. If I let her head go slightly back, she comes off.

They don't understand whats going on. But there are some idea's floating around. Because she's sucking so many times before swallowing, she's loosing her breath & thats wearing her out. Thats why she doesn't feed as long as I think she should be. But with no off coloured poo issues, she's somehow getting enough fore & hind milk. Even though by the time my let down finishes, she's done. I feel my let down very strong, so know exactly where we're up to & as soon as it starts to ease she's done with the feed.

So they are going to discuss the idea of seeing an OT. Decide if they think it'll help or not. Try to reteach her how to suck/swallow properly if they can.
In the meantime, try to encourage sucking. They say its quite normal for a baby to suck on anything for comfort. Finger, dummy, thumb etc. But Summer won't. As soon as something else goes in her mouth she pushes it out. She gag's if I try getting more boob in her mouth!
She won't even take the boob for comfort. Its only for feeding & hunger. She rejects it any other time.

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To add to all that, she has not had a bottle once. I'm thinking maybe the lack of attatchment might be to do with her reflux & snuffyness that came with it earlier. She had trouble breathing, so always had to come off to breath. Might have got her suck/swallow out of wack too...

I also think, because I have a really hard fast letdown, maybe she doesn't need any more, so has no reason to get a good latch. She really only has to lay there & catch it iykwim...

I really don't know. I'm trying to find any info I can, but all that I read relates to a baby who's had a bottle...

Please give me any other ideas you may have...

:bump:

JIC

:D

I've been following your story for a while. You are doing such an amazing job with her. These problems are often multi-faceted - if it was simple we'd all have sorted it by now. It's likely to be a combination of things.
Just let me go back to basics for a minute - how often does she feed in 24 hours? Does she have one breast or two?
It sounds to me like her sucking pattern is to do with controlling the letdown - which is OK - it means she is managing it.
where do you live? it's going to be difficult for me to say too much without having to see what's happening

She feeds every 2 hours from about 4am til 5pm, so thats about 7 feeds, then from 5ish she cluster feeds til about 8/9pm, then sleeps through usually til 4/5am again.
So I'd average that at about 10 ish feeds a day.

She only has one breast at a time til the cluster feeds. I will still sometimes give the same one twice in a row during those times to make sure they are emptied properly, coz she's pretty fussy then & doesn't always have much at all.

I live on the mid north coast, near Coffs Harbour.

I always crack towards the roof of her mouth. Have been trying football hold on my right side. I was cracked around the side where the roof of her mouth is when laying her normally, so have changed whenever I can. Then, this morning with football hold I recracked at the top of my nipple...

I'm trying to avoid the sheilds as I think we will start a whole new set of issues with them. I don't get empited properly with them & don't want to risk blocked ducts/mastitis.

The clicking she makes, its hard to describe. Its clicking with every single suck, but most of them you can tell its not your normal tongue clicking iykwim? (DS used to click very quietly & it was never a problem) Its like a losing suction click. Like if you put your tongue to the roof of your mouth, suck with it & let go... does that make sense? Might be something to do with her tongue not curving under the breast the right way.

She even makes the clicking noise when making the little sucking motions they do with nothing in her mouth.

She is happy, content & sleeping well with good wet nappies & probably 3 dirty nappies a day at the moment.

Can't think of anything else to add right now. Only that I don't see any lines/lipstick shape/whiteness, anything at all when she detaches & they also saw that yesterday.
The only thing they thought was that there is not enough breast in her mouth, but if I hold her chin to get more in she gags & spits it out anyway.

I'm thinking maybe size is something. I had issues up to 6 weeks with DS. just after 6 weeks it all resolved & we fed for just under 2 years. She isn't quite at the weight DS was at 6 weeks yet. He was 5.25kg at 6 weeks, she just tipped 5kg at 8 weeks last friday.

I've just ignored everything thinking if I can just get through the first 6 weeks everything will fix itself.

Just recieved a call from the chn/lc. We're going to try using the sheilds for an extended period, say a few weeks to see if that gets her to start curving her tongue & she's going to loan me a pump to use after feeds so I don't get any blocked ducts & to keep up my supply.
Sounds like loads of work, but lets hope it helps...
Now to find something to store the milk in in the freezer for later on. Don't want to waste it & don't want to confuse the poor kid more by introducing a bottle.
Will also be getting a bare weigh again tomorrow to check how things are going, but with the little roll starting to appear on her thighs, I'm sure it'll be ok :lol:

:hugs:

I use sandwich bags to store my milk, they freeze flat, don't take a lot of room, and easy to write on.

Wishing you the best.

Hi,
It might be worth offering her both breasts at every feed - she's probably ready for that now, at this age.

That sounds like some progress Clover. Are you feeling better about things? I hope the shields go well for you. You might find this time that she is able to drain the breast better with them as she's a little bigger.

The best thing I found for storing EBM was the Avent resuable cups. Before that I'd been using breastmilk bags but they were getting hard to find and very expensive as they can only be used once. Sandwich bags are not recommended as there is concern that chemicals can leach from the bags into the milk.

Best of luck hun :hug:

Thanks Barb, I will try that. She usually is a wake, feed, play, sleep baby, so I've been offering it on waking & to get her to sleep. She's usually too fidgety & fussy when tired, but will often have a little bit.

Will have a look around for them MR. I'm feeling ok. Having everyone tell me its her, not me makes me feel a little better.

We'll get there. If I hadn't been so successful with DS, things might be different. I know there's light at the end of the tunnel. I know we'll get through this :)

Good on you hun. You will get there :hug:

About another 100 grams from Friday last week to today :)

Woo hoo hun!! Great work!!

Got 70 mls on my first effort, after her night time frenzy :lol: Not too bad.
Bottles are ok in the freezer aren't they?

Well done! And yep bottles should be fine, I do it if I've run out of the avent storage cups, just remember not to fill them right up a the milk expands
Keep going, you're doing a wonderful job :hug:

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Got 70 mls on my first effort, after her night time frenzy :lol: Not too bad.
Bottles are ok in the freezer aren't they?

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THey're fine - teats can shrink and leak though, so better to use the sealing-lid thingies.

I was just wondering - the combination of baby with bad eczema and nipple-mangling talents is something that Belfie had years ago too. From memory the diagnosis with the benefit of hindsight was that the eczema was symptomatic of allergies in general, and these allergies made it hard for her little guy to breathe through his nose - meaning that he would be constantly slipping and sliding and coming off and on and generally being rather mean to his Mum.
Do you think S's nose is blocked at all??

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I was just wondering - the combination of baby with bad eczema and nipple-mangling talents is something that Belfie had years ago too. From memory the diagnosis with the benefit of hindsight was that the eczema was symptomatic of allergies in general, and these allergies made it hard for her little guy to breathe through his nose - meaning that he would be constantly slipping and sliding and coming off and on and generally being rather mean to his Mum.
Do you think S's nose is blocked at all??

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Umm... it is at times. But not often. & no other signs of those types of allergies iykwim? No watery, itchy eyes etc that I've noticed. Food for thought though...