Upcoming lip/palate surgery

[2boyzmama]

My son has two surgeries next month, the first is a frenulumectomy. His labial frenulum (what connects the upper lip to your gum) is extremely thick and tight, makes it so he can't flare his upper lip to latch correctly. It also wraps all the way around and connects to his hard palate (which is high and arched, and his soft palate dysfunctions causing loads of associated problems...) He also has two side "ties"...the surgeon said he's never seen side frenulums like that.

SO...on to my question... Breastfeeding has been a HUGE struggle for us so far. (he also has Pierre Robin sequence which makes latch difficult, plus suck/swallow/breathe coordination issues, plus dysphagia with aspiration, plus severe reflux, plus food allergies...really you could write a text book on just his breastfeeding issues) Because we've worked SO HARD to keep breastfeeding, I don't want this surgery to be difficult.

I don't want him to have a bottle post-surgery, I want him to BREASTfeed. I know that it will be painful for him, though. He needs to re-learn how to suck/swallow now that he'll have free movement of his lip. His lip will have a lot of stitches on it (lots in the front middle, and probably a couple on each side) and depending on what the surgeon decides when he gets in there, his hard palate may have some stitches on it, too (not sure if he'll cut that part of the frenulum or not, will have to see how it looks after he cuts the other parts)

I've already called the hospital's LC and asked her to be on "standby" in case we have problems. And I plan to be absolutely adamant with the surgeon that I intend to breastfeed...not bottle feed. If he says that he thinks cup feeding or dropper feeding might be better for the first day, then I'll go with that. But not a bottle. (He takes a bottle now, I work during the day, so I'm not opposed to bottles...I just don't want him to learn to suck on a bottle right after surgery and then we go home and have breastfeeding problems)

Any suggestions??? Anything I can do to help him out? Has anybody else's baby been through this??

[PatioGardener]

s and a whole bunch of support coming your way through the internet!

Are they doing both the sugeries at the same time? Has the sugeon spoken to you about post-operative pain management? I can imagine as the healing process takes place, his mouth could hurt a bit, which won't help with breastfeeding. I know when I get a cut in my mouth I get those mouth ulcer thingies that are really painful and feel huge even though they are small. The only suggestion I have is to make sure you have good pain control. Oh - and to be proud of your commitment and keep that "absolutely adamant" attitude!

[Martha_2sons]

My DS2 had a much more simple "snip" of the lip frenulum and under the tongue but he healed very well. I gave him homeopathic arnica and hypernicum. Hope your little one has an easy & speedy recovery!

[bri276]

hang in there

after my dd's palate surgeries she was completely averse to anything in her mouth. she never could bf due to bilateral cleft palate but she wouldn't take her Haberman or syringe, or any other way, we had to force feed her for two weeks straight each time. not trying to scare you, she's the only child I've heard of that reacted this way to palate surgeries, and I'm not sure why other than she had pretty extreme surgeries each time. The pain just made it not worth it for her to eat, and the IV made it so she wasn't thirsty.

There is absolutely no reason they should say no to a breast and yes to a bottle. A syringe is perfectly doable if he's willing to take breastmilk by mouth. The only situation where I would consider trying the bottle is if he refuses the breast even after 2-3 days- at some point, the IV isn't enough, they need nutrition, and I really credit the (forced) breastmilk with my DD's very quick and clean healing both times. So at some point just getting the milk in there is more important than how, long term, and at this age he's at much less risk of developing nipple confusion or preference. I know when you've gone through hell you don't want to do anything to risk it!! just listen to your son and he'll let you know what he needs, as far as the doctors-they can make their suggestions, but you're the mother. I'd try to think positive, plan for the best, but have a backup plan in case he refuses the breast.

[momuveight2B]

Well I suppose things may have changed but when my daughter had her surgeries they did not want any sucking at all for the week after. She got a cup only. We fed her with a syrofoam cup that you can find anywhere. As soon as the swelling went down she went back to eating as before.

[Aubergine68]

I also imagine that there would be concern about sucking (breast or bottle) and the effect of the vacuum that would create on the surgery sites. The swelling could also get in the way....

I know someone who had palate surgery as an adult and was told not to even use a straw, but to syringe or spoon feed for six weeks after surgery. Perhaps that might apply, here, too.

I can't imagine anything better than breastmilk for healing. I hope it works out just exactly the way you want it to, and good for you for being so determined.

[2boyzmama]

His second surgery is 2 weeks later, and is on his ears (he has congenital conductive hearing loss from malformed external ears and ear canals, plus so much fluid in his ears (from his palate dysfunction) that a cat scan was read as "soft tissue or fluid" in his middle ear and mastoid area)

The surgeon hasn't said much at all, when we met with him it was for evaluation of a submucosal cleft palate, this frenulumectomy was kind of an afterthought, so I didn't have questions ready for him. I've sent a list of questions to the nurse and expect to hear back with answers Monday.

What other questions should I be asking?? Pain relief, eating, what else?