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Please help me decide what to do. (Long)

516 Views 10 Replies 8 Participants Last post by  loraxc
I have posted here before about my daughter and her bubble palate. For those not familiar with it, it is a malformation of the roof of the mouth that means my DD cannot suck the nipple back to the "soft palate" while BFing--instead the nipple continually "bangs up" against the hard palate. This has made nursing very painful for me since day one, every time, and was not accurately diagnosed till she was about 4 months. (She's now 5 months.)

We have been checked out my two LCs and her latch is as good as we can get it. It "looks" perfect. Some days it isn't as bad, but other days I cry through feedings. She is now seemingly getting hungrier as she gets bigger (she's about 15 lbs) and sometimes pulls off and cries in frustration, clearly wanting more. She also pulls off/on, pokes, squirms, and kicks, behavior I have been told means she is trying to elicit another letdown. (She doesn't do this in the AM when I am very full.) I have tried nursing more often, even once/hour, but it doesn't help and probably hurts (very hard on my poor nipples). I don't think my letdown is very good when it hurts so much. So I have a somewhat unsatisfied baby (occasionally I resort to giving pumped milk at these times).

I have been considering going to exclusive pumping, but it worries me. I a now pumping twice a day with a Purely Yours. I pump for 20-30 minutes at a time and use the tips I've read (massage, shaking, etc) to get better letdown. I am also taking 3 capsules of fenugreek 3x/day. However, most of the time I can get only about 3-4 oz/session. Once in a while I get 6 and am ecstatic. DD drinks 4-5 oz at a feeding, so that means one pump does not equal one feed.

I am pretty sure that if I did go to exclusive pumping, I would not produce enough for her needs. I have not been able to build a freezer stash and am wary of trying since I seem to be barely meeting her needs as it is. The idea of supplementing with formula absolutely kills me, but so does the idea of continuing to nurse at minimum another 7 months through this pain. It is truly horrible and has really had an effect on my emotional state. I have tried harder than I have at anything in my life at this. BFing meant the world to me.

We did start solids about a week ago (earlier than planned, but this situation was a motivator). Just bananas and rice cereal so far. She takes them eagerly and seems very developmentally ready, but it has not reduced her nursing at all. In any case, it is my understanding that solids are not "supposed" to reduce the amount of breastmilk taken till 1 year.

I guess I wonder what all of you would do in my position and if there is anything anyone can think of to help. I guess one or two bottles of formula a day would not be the complete end of the world, but I also worry that I might gradually lose my supply completely. I have heard of that happening with EP. Maybe someone can give me hope or hints on how to improve my pumping output. Maybe there is another way to fight the pain that I have not tried. Advil helps somewhat but only if I max out on it every day and I sure don't want to do that. I have even wondered if I could inject myself with local anesthetic before nursing (I swear that would be preferable to how nursing feels). Maybe using an SNS with pumped milk would help? But the the SNS sounds like it would be hard on my poor nipples.

The physical state of my nipples is that they are not cracked and do not have sores, but the tips are always very purple and bruised-looking and they are horribly tender to touch. Lansinoh doesn't seem to do anything. I have wondered if homeopathy or something herbal might possible help, but in a way I am not clear "where" the damage is.

I know the posters here understand how important BFing can be to a mama and I hope someone has help for me. This is breaking my heart but I can't go on this way.
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I can relate to how painful nursing is when baby has a high palate. Mine has a 'high arch to her palate'.

To be honest, I had really bad to excruciating nipple pain for about 4 months (right side) and 6 months (left side). Left side is bigger and took dd longer to nurse properly on that side. I used to max out on the Motrin too - I figured BM + Motrin is still better than formula. Plus it's not like the baby is getting a full dose of Motrin - only small amounts get through into the BM. I had some Percocet left over after my c/s and I used to take them on occasion also. It really was painful.

I ended up becoming allergic to Lansinoh - I found olive oil to be better. I'm not sure what herbs would help - I mean it's mechanical trauma to your nipples - maybe things that promote healing.

I was taking 12-15 caps of fenugreek. I'd read you can take up to 6g a day and my LC also confirmed this.

Do you think her fussy behaviour is due to a growth spurt? You know I had this tendency to think all of dd's issues were due to my low supply. But really if you read though some of the kellymom stuff,
it's obvious all babies get fussy at some time or another for many different reasons. And evening fussiness is so very common. The problem I found was when you do have/have had low supply, you always think it's because of that. Or I'd think dd's pulling off the nipple and squirming was due to her poor latch and inability to get enough milk - then I found out she had silent reflux at 6 months. After some Zantac it got a bit better. I was so sure it was latch/low supply, I never investigated other causes - she probably should have had the Zantac earlier.

If her fussiness is due to a growth spurt, then increasing nursing is important for upping your supply. I know NOT what you want to hear when you're in so much pain. So what I would do is increase the pumping (add 1 or 2 more sessions) and supplement instead of nursing. I didn't like having to use formula but I figured that dd mainly got BM so topping up with formula was no big deal. Plus the way I thought about it, she needed to GROW out of this high palate problem so the last thing I wanted to do was delay her GROWING. It was a bit of a balancing act between preserving nursing and making sure she grew well.

You know at 5 months, you must be nearly out of the woods. I do remember at about 6 months realizing that the pain was gone. It was kinda gradual, snuck up on me until one day I just realized it didn't hurt.
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Good luck & hugs!

pak (pumping at keyboard)

You might try pumping more frequently for shorter periods of time, most women get better supply improvement this way than from fewer pumping sessions with longer duration.

I hope Wombat is right and you are almost out of the woods, but in fairness I have to tell you that my lactation consultatnts have seen some babies with high palates who never grow out of nursing being painful for mom. Keep trying but consider giving some bottles of expressed milk to give your nipples a rest--especially if continuing to feed breastmilk is your highest priority.

My ds #2 also has a high palate, and because giving him breastmilk is my highest priority, when faced with a time crunch or sore nipples, I'll pump and give him a bottle because I can't count on his ineffective nursing to drain my breasts or stimulate my supply. It's hard sometimes though because it's so counter intuitive to choose pumping instead of nursing when your baby wants to nurse. But it's even worse to nurse and two hours later realize that your breasts hurt, baby hasn't gotten any milk, and your breasts have neither been stimulated or emptied...

Good luck,
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Originally Posted by sarahwebb
Good luck & hugs!
, but in fairness I have to tell you that my lactation consultatnts have seen some babies with high palates who never grow out of nursing being painful for mom.
I would bet most moms of babies with high palate issues don't get beyond the first few weeks. I mean without a lot of support, education about BF and sheer stubborness, the majority of these moms would give up. Gee moms without this kinda pain give up. So we don't know how long it would take most babies to outgrow this. It's a small group of moms who stick it out for as long as we here have.

I wonder what your LC considers "never grow out of it" to be? 3 months, 6 months, or just the time when the mom gave up?

Also if we assume most moms would have given up, then of the remainder, most of those babies will grow out of it, then the number of babies who 'never grew out of it' would be almost miniscule. Ok that miniscule number is still "some" but I just wanted to make the point that the odds are really in your favor of the baby outgrowing it. Am I making sense?
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wombat--I remember you posting before when I initially wrote about this. I cling to your story in hope! I CAN say that my left breast is (pretty noticeably) smaller and that the pain on that side is not as bad. So maybe...just maybe...

I am interested to hear that you did supplement and things worked out okay. How much formula would you say you were giving?

I have been trying to bottlefeed her twice/day as a break for me, but usually it ends up being only once/day, with the milk I pump when she is sleeping in the evening. The issue is that if I get less than 4 oz, I pretty much have to nurse anyway, or she screams, AND then she is frustrated because I'm pretty dry, so she is extra hard on the nips. (This is when formula would help, I guess. Or a freezer stash. If I just had a freezer stash. I have actually considered asking a nursing friend who has abundant supply if she would consider giving me some milk, but I suspect that's over the line--and theoretically a health risk, of course. *sigh*)

I think I will try more frequent pumping. I also wonder where I should keep the suction on my pump. Too low and I don't get as much; too high and it hurts and I wonder if I am sabotaging myself.

I would also bet that most moms of babies w/palate issues don't last beyond the first few weeks. Actually, my LC told me that was probably why there is so little info out there on dealing with nursing with a bubble palate--because hardly anybody does it.
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Originally Posted by loraxc
. I have actually considered asking a nursing friend who has abundant supply if she would consider giving me some milk, but I suspect that's over the line--and theoretically a health risk, of course. *sigh*)
Not much to add, but as for this: I think you should ask! Lots of moms here with supply problems have done this and many of their freinds are thrilled to help. If you know her well, you should already know her health history, right?
I don't have any information about the palate and the nursing, but have been pumping for my baby since she was 5 weeks old when her cleft palate was diagnosed

Something keep in mind about the pumping. You said you are still nursing? That means you are producing quite a bit more than your babies requirements.

It takes your breasts a little time to adjust to the pump. If you were pumping exclusively, you would probably see a dip in supply, followed by an increase.

It took me about a month to get to a full supply, but I started with a very compromised supply. If you decide to pump full time, give yourself a couple of weeks to adjust to the pumping schedule. I would pump at least 4-5 times a day. And I would consider renting a hospital grade pump to start with, at least.

Good luck

mama, I can't tell you what to do, I can only offer sympathy!

You can definitely up the fenugreek, and add blessed thistle - a very effective combination. You can try 3-4 capsules of each, 3 times a day. Or another great combination is the herbal tincture from - much easier to take than swallowing all those pills.

At this point, when you're already introducing solids, I personally don't think you have to worry so much about the "one bottle of formula will destroy her gut flora" thing. So if you really can't keep up with her by pumping, I would not feel guilty about a bottle or so of formula daily (but making sure it doesn't impact nursing by replacing it). I would use organic formula tho.

Hang in there, you're doing great.
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I too had a baby with an abnormal palate. I strongly recommend avoiding bottles. Babies with abnormal mouths have a difficult enough time breastfeeding without adding bottles to the picture. If you must supplement you might try cup feeding or finger feeding. Solids are probably better than bottles. Babies don't need 'baby cereal' but bananas are a good first food.

I know fenugreek is recommended as a 'natural' way to increase milk. However, it is a drug and many doubt it's ability to substantially increase milk. I was lucky that I was nursing a toddler so I had plenty of milk for my challenged baby. You might try pumping one breast while you are nursing the other to increase supply.

I do have good news! My son's mouth was so abnormal that a series of surgeries were planned. He nursed until he was almost 4 and breastfeeding enhanced his oral development so much hat he didn't need any surgery. He is now 21, didn't need braces or anything, and has perfect teeth.
What about a nipple shield? I used one with DD because of flat nipples and it makes them stick out a lot more. They would help with the soreness and maybe with the palate issues too? I know I've read that they can cause problems with low supply, but with pumping and nursing, maybe that won't be an issue? (it never was for me, I could have fed the whole neighborhood :LOL)

Anyway, it's worth asking your LC what she thinks. Good luck!
Thanks for the continued replies. I have in fact tried a nipple shield. I use it only when I am desperate, because although it provides some relief, it seems to screw up her latch and cause her to want to latch more shallowly. I am also worried about the bottles messing up her latch. They do seem to affect it slightly. She also is quicker to be impatient with slow letdown these days. I may buy a Lact-Aid.

Her gut flora is no longer "virgin" anyway because she was supplemented briefly a few days after birth on an LC's orders. We acquiesced out of fear. I don't think it was necessary.
: I guess I wonder...aside from the obvious issue of losing supply, can anyone tell me clearly what the risks are of supplementing a little at this age? Do I increase her risk of diabetes, etc or is that only with NO breastmilk? She seems to have wonderful immunity, btw; has never been sick.

I would love to ask my friend for some stashed milk, but I sense that she is not the type to agree. She is very hygiene-oriented and I think it would freak her out. I wish there was a way to buy breastmilk from clean-living mamas. Wouldn't that be something?
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