Helping baby with facial paralysis latch properly?

[greenluv]

Moms, I really need your wisdom!

My baby girl was born with a syndrome that has caused her to have facial paralysis on one side of her face. Because her mouth is affected, she's never had a good latch. I'm not sure how to help her with this and now at 3 months of age, we're having supply issues and can't stop the supplementing.

I could probably deal with the supplementing but dd can't. Formula affects her tummy and because of her syndrome she can't easily pass the formula poops. I believe this problem is physical structural problem, rather than a tummy that doesn't like formula.

I believe if we solve the latch issue, we can quit the formula easily. I hope this makes sense. If not, please forgive the sleep deprivation.

[greenluv]

Anyone have any ideas where I can find info? MDC has NEVER failed me!

[Llyra]

I would imagine what you need is some in-person experienced help. Do you have any good lactation consultants in your area? A midwife's office might be able to make referrals, or perhaps a supportive pediatrician might know of somebody. Or if you have a good children's hospital in your region, they may have specialists that deal with this sort of thing. I actually found my LC on the search engine for "breastfeeding professionals" on Medela's website-- that might be something to try.

Are you pumping, between feeds? I'm assuming you are-- that would be the first thing I'd try, to attempt to reduce the amount of formula needed and help maintain your supply. Also, have you asked your doc about alternative formulas that might be easier to digest?

I'm also thinking maybe that you could look up about cleft palate and cleft lip-- I know that's not what you're dealing with, but I think they have devices that help babies with those challenges to latch, and maybe something like that might be helpful.

Good luck. It's awesome that you're working so hard to get her the breastmilk that's best for her. I hope you find some solutions soon.

[PatioGardener]

nak

sorry, no ideas for the latch, but for her tummy, if you aren't able to pump to supplement, have you considered donor milk? that would mean less or even no formula.

good luck - hope you get some ideas!

[greenluv]

I went thru the whole pumping thing when my 7 yo was born and ever since then haven't been able to pump enough to make a difference in my supply. I can't get more than an ounce when I pump and it's so disappointing.

I did chat with the childrens hospital and I believe they misunderstood because they sent me a Pigeon bottle so dd "doesn't have to work so hard" to nurse. The bottle was on the recommendation of the speech therapist.

I am ready to give up trying altogether.

[Caittune]

Aww! Don't give up. Have you tried the LLL? I found a IBCLC through posting on finding your tribe when I was having supply issues with my youngest. It was so nice to have someone come in and give reassurance and have some real good ideas about what to do.

Have you tried any of the galactagoges? I take domperidone (luckily I'm in Canada so I get it prescribed easily) I do find they help with increasing the supply.

Oh yes donor milk that would be something else to try. If I could get my DD to take a bottle I'd be looking into it.

Good luck.

[CrystalCloud]

First, I'm sorry that you're struggling with this.

I understand that you have a problem with pumping... Have you tried pumping one breast while you're nursing from the other? Or being in the same room as your DD while you pump?

Reason I ask is because I had difficulty pumping with my first DS when I went back to work. What helped was having pictures of him and watching videos of his to stimulate my body to "nurse".

[KSDoulaMama]

My best advice is to find an IBCLC who is experienced with helping babies nurse in special medical circumstances AND to have them check your pump fit... the size of the flanges and their fit on your breast can make a huge difference in how much milk you get in a pumping session and that definitely impacts supply.

Here's a good page from KellyMom too if you haven't already seen it:
http://www.kellymom.com/bf/pumping/p..._decrease.html

[greenluv]

Thanks for all the support!

I'm happy to report that we're doing better. The milk supply seems to be picking up and baby is taking half the amount of formula she had been taking. All in all, I'm more optimistic than I had been.