Now diagnosed with "bubble palate". . . still not at the breast

[homemademom]

Here's our history, here and here.  

The short version is that our ds just had his lip and tongue tie clipped 10 days ago.  Afterward, he still wasn't latching or transferring milk properly, so I found another local LC with TT experience.  She diagnosed him with a bubble palate and said that I would need to use a laid back nursing position (lying over me, with his head above my breast) in order for him to latch deeply enough.  

When she was at my house, I hadn't pumped in almost 3 1/2 hours so my breast was pretty firm.  Ds managed the position alright with her help. However, after she left and all the next day, we just could not do it. My breasts are normally really soft and my nipples are large, so ds's face would just get buried in my boob and he wouldn't be able to latch (he still has issues with opening his mouth wide). 

The day after that, I tried the cross cradle hold again, and while he could latch, I ended up (again) with sore, ridged nipples and a hungry, fussy baby.  I have a baby scale, so I was monitoring his transfer, and he was getting 1/2 ounce after 10-15 minutes of nursing--essentially, whatever he could gulp down during let-down.

So, I'm still EPing and supplementing (I'm waiting on my first shipment of Dom and hoping it will work). We're also going to a CST (a different one than before), and while she thinks we'll see some improvement, she's wants me to be realistic about how much CST can do.

So does anyone have any ideas? At this point, I'm reading all about EPing and feeling very weary, but also out of other options.  

Edited by homemademom - 3/19/11 at 8:14am

[PatioGardener]

I have seen some success with the "bullseye" latch and bubble palates. You go straight in with the nipple, unlike the typical 'asymmetrical latch'.

Will try to find some info for you.

[homemademom]

Thanks, PG. We've tried the bullseye latch, but it's doesn't work for us, unfortunately.

Ds has a true bubble palate, in that there is a large hump between the hard and soft palate and no way my nipple is going to get over that.  I was reading http://www.mother-2-mother.com/nipplepain.htm#HighPalate and it stated that these often resolve themselves "spontaneously" between 8-10 weeks. I'd love to know if this is the case. I can't find any references for it.

[chasidyz]

I was just wondering how this was going for your. My DD was born March 4, and we've had very similar issues. She has a bubble palate, but we didn't know that until about 2 weeks ago. She was in CHOP for failure to thrive at 6 weeks, she was a pound below birth weight. Those docs didn't figure it out, but lactation consultants that I met with at a nonprofit did.

My baby is 11.5 weeks and has only latched without a nipple shield maybe 6 or 7 times ever, and just randomly at that. She only got 20ml in 20 minutes while nursing with it (and my supply had taken a HUGE hit, but I've now been able to get it back up  by EPing).

It's soo frustrating. I see people nursing their babies and it literally makes me cry that I can't. 

Please let me know how it's going for you :-) 

[homemademom]

I so feel you!  (((HUGS))) Amazingly, we are nursing! Let me try to remember. . . when he was 9 or 10 weeks, I gave up hope that he'd ever get back to the breast.  I stopped trying to latch him all together for a week when a friend of mine (who'd given up bfing for other reasons) said that she'd randomly latched her baby on and was successfully nursing him to sleep at night. I got the idea to try one more time

and latched my ds that day.  His latch was still poor and it definitely didn't feel exactly right, but it wasn't excruciatingly painful like before.  

We just kept at it at every feeding. I'd give him a bottle of formula when he didn't get enough at the breast (was dealing with low supply and eping only produced so much)). I was taking the max dose of domperidone and nursing him all day.  I'd latch and relatch until he got used to having my nipple pulled far enough back. I had to pull his chin/jaw down to get him to open wide. We could only use the bulls eye latch, too--not asymetrical.  Little by little and week by week he got better.  

We're now nursing almost problem free. His latch is still a little touchy, so I have to make sure it's deep enough and his mouth is open wide, but otherwise, we're good.  My formula supplements have gotten less and less, too. Just the past 2 days, I've only had to give 4 oz each day, where I was giving 8 or so daily for the past few weeks.  Maybe we'll be able to ditch them all together eventually. Ds is now 15 weeks old (so, 5ish weeks since he started bfing).  

From 5 to 10 weeks we saw a cranial sacral therapist which I really believe helped mobilize his palate enough so that it could come down.  When you look at and feel my ds's palate now, it is SO different.  Again, I don't think cst cured it or made it move, but the small manipulations she did helped it to be mobile enough that it dropped on its own when my ds's  head/jaw was big enough.  Since you're dealing with slow weight gain, my guess is that this "big enough" size is still in your future!  Hang in there and don't give up hope!  If you want to pm me, feel free.

[ShwarmaQueen]

We never could get a good latch (even bullseye, he would push the breast out every single time). DS would only latch onto the end of my nipple (it hurt like hell until the end). One thing that we did to help him was to create an oversupply so that the letdown was plentiful for him. Then it just took so much time for him to nurse, double or triple even the normal amount. He nursed almost hourly until the end in order to get the ounces he needed. I also took more milk plus (actually double the amt on the box) for the first 6 months and powerpumped when my supply dipped as recommended by my LC http://www.lowmilksupply.org/powerpumping.shtml .

[homemademom]

Originally Posted by ShwarmaQueen 

We never could get a good latch (even bullseye, he would push the breast out every single time). DS would only latch onto the end of my nipple (it hurt like hell until the end). One thing that we did to help him was to create an oversupply so that the letdown was plentiful for him. Then it just took so much time for him to nurse, double or triple even the normal amount. He nursed almost hourly until the end in order to get the ounces he needed. I also took more milk plus (actually double the amt on the box) for the first 6 months and powerpumped when my supply dipped as recommended by my LC http://www.lowmilksupply.org/powerpumping.shtml .

ShwarmaQueen, I was meaning to ask you, did your lo have trouble opening his mouth wide and/or clenching his jaw?  I wonder if this is common to posterior tt babies or not. Thanks.
 

[ShwarmaQueen]

Originally Posted by homemademom 

ShwarmaQueen, I was meaning to ask you, did your lo have trouble opening his mouth wide and/or clenching his jaw?  I wonder if this is common to posterior tt babies or not. Thanks.
 

I'm not sure if he didn't like to or couldn't because of all of his issues, but he refused to latch wide open. I just gave up the hope after a while; it infuriated him when I tried to make him...so it's hard to say definitively what/why he wouldn't open up wide. He did clamp down by breast between his gums in the beginning (before we discovered he was tt, I even commented to DH that I felt like he was "teething or something"!), apparently that is a common thing among tt babies.Since he had/has so many compounding problems, he never fit the 'norm' for anything! lol