cleft palate feeding probs

[wildflowers]

Hi guys,

I'm hoping someone out there might have some advice for feeding my three month old with a cleft soft palate.

When he was born we tried a few kinds of feeders, the hospital gave us a Chu Chu and it totally flooded him and eventually we settled on the Haberman Feeder. This has worked pretty well up until now but as he has grown it seems to be becoming too difficult for him to get enough. In the last week he has been becoming exhausted feeding and not able to get enough in one feed so is having a tough time at feeds and needing them every 2-3 hours 24 hours a day. Today we thought we'd try the Chu Chu again thinking it would be easier for him but it requires a completely different technique. Over a few tough goes he managed a big feed and slept well for the first time in a few days, woke up smiling at us rather than screaming for food. But gave him the Chu Chu again and he just struggled and cried and couldn't work it out, gave him the Haberman to finish the feed and he didn't do well on that either.

I just want to help him and it breaks my heart to see him so upset and not know what to do. I'll make an appointment with the child health nurse but they have never been much help in the past, Cleft Pals have also not been able to offer any practical advice.

:crying:

[dreamtobeamummy]

My friends little girl was born with the same thing.

I am not sure of all the terminology you have described (as far as the feeding) have you tried the spoon that goes onto the bottle?

Our friends girl uses this.. she doesnt need to use it now but she wont drink from a norm bottle as she is so used to it.. They dont seem to have any problems.

Its a shame Cleft Pals arn't giving you the advice you need, my friend speaks so high of them here in WA :hugs:

[Tam-I-Am]

Sorry you're having such difficulty :(

This (http://www.breastfeeding.asn.au/bfinfo/cleft.html) page from the Australian Breastfeeding Association discusses the currently available specialist equipment for feeding cleft palate babes, just scroll to the bottom of the page.

Sorry I have no personal experience to share or advice to give :hugs:

[jenpeterock]

hey my little one doesnt have a cleft palate, but due to her heart condition she wasnt a good sucker, after she had her surgery we ended up using both the chu chu and the habermann. my heart goes out to u, because i know how frustrating and scary it can be fighting with ur little one to drink.
Evie also had a ng tube in while we were establishing her feeds.

i assume u have a speech therapist and dietician??? id maybe try and contact them, or ur gp or aba, but if u think that ur bub is in any way dehydrated, then i would take him up to the hospital, because it can snow ball quite quickly.

bub works harder to take feeds - which makes them more tired so intern they take less.

anyways persevere, u could also try wrapping him up and sitting in a quiet place to feed him. evie went through a stage where she refused to suck because she was over stimulated. or maybe try and predict when he will wake up for a bottle try to sneak it while he is still half asleep? i have heard that works for some mums.

good luck:fingerscrossed: and im sure ull figure it out!

[tyesmum]

Hi Wildflowers!

Our son (now 3yrs) was born with a bilateral cleft lip & palate...he had no palate at all! We used the Chu Chu teat & squeeze bottle. It may be different for your beautiful boy having some palate, but we found with Tye that we had to give about 4 or 5 quick gentle pumps, then a break repeat & so on. The Speechies actually showed us how to do it properly at an appointment, after he wasn't gaining much weight & screaming alot, obviously hungry!

Is your little guy able to suck at all? Another bottle you could try that wasn't around when we could have used it, is a "NUBY" soft silicone-like bottle, we got it from BigW approx $17. It's easier to squeeze, has a nipple shaped teat & has a wide neck..just not sure about other teats as they get older. We have one here that our next baby used twice (he was fussy & preferred a different teat) I'd be happy to send it to you if you PM me, we're not having anymore babies (have 4 boys!) so if you'd like to give it a try & can get some use out of it great!

I don't know how to post pics on here, but if you had seen Tye's lip & palate before surgery & now...gee those surgeons can do amazing things! Just amazing!

Take care & give that beautiful boy big cuddles..you'll get there :)

Sarah :)

[wildflowers]

Thanks guys, I'll have to look into those other options. I hadn't heard of the spoon but I'll bet it's one of those things things listed on that ABA website. Which by the way gave me a boost thanks. Made me feel good for persevering with full time expressing and keeping up giving him occasional breastfeeds (by expressing into his mouth). Sarah thanks for th eoffer of the bottle, I'll PM you about it :).

The good thing is he is gaining weight, he's such a trooper he's thriving and last month gained a total of 1kg which is about 400g more than he needed to, I think he's still making up for the start when he didn't gain. He was doing what you spoke about jenpeterock, getting enough but exhausting himself in the process. Thankfully he is not dehydrated but we keep a watchfull eye. We don't have a dieticien, no-one has ever suggested that, would he need it if he's only on breast milk? We spoke to a speech pathologist from the hospital by phone once but the surgeon said we didn't need one till after surgery. The most helpful person has been our lactation consultant but as far as specific cleft advice we find that no-one seems to be the expert to ask and we are feeling our way through. i tried to keep things calm during the feeds today after reading the advice form this thread. He still struggled but one feed went really well and he got 120ml, the next was okay and this evening has been terrible but he's had heaps to drink over the time so I'm ondering if a bit of a growth spurt may be complicating things a bit?

Yes, our baby has some suck but not enough to cope with the breast (as normal anyway) or normal bottles but enough to use the special ones. We are however beginning to start him with a cup in prep for his surgery in three months. He's only had it once but he did pretty well and I'm wondering if he gets good whether we might be able to use that a bit.

Anyway, thank you all for your advice. I'm going ot try all of it :yes:.

[wildflowers]

Oh, something else I though of. I wonder whether he has a big problem with taking in too much air. i know it's common with cleft babies. We do our very best to burp him and do get burps but no matter how much we burp him there always seems to be the times (particularly during day feeds for some reason) when he'll cry in pain and i don't seem to be able to get anything up, the best i can do for him is put him in a position where it doesn't hurt him to sooth him. Any magic positions anyone has found for burping?

[jenpeterock]

wildflowers - that weight gain is awersome:)!!!! we had a dietician because evie was on ebm fortified milk (we had to add formula for extra calories) because evie was losing weight because her body was using so much energy to keep up with her heart which was working harder and she just didnt habe the energy to drink.

ur little man is gaining weight and weeing and pooing normally then straight mb is the go! our habermann teat came with a squeeze bottle so that we could squirt it in her mouth and all she had to do was swallow.

if u think he has wind, try laying him on his stomach across ur knees and patting him on the back gently.

good luck!

[BoyCrazy]

if u think he has wind, try laying him on his stomach across ur knees and patting him on the back gently.

good luck!

another good one i found was holding bubs on my lap facing out from me tapping his back gently.

what city are you in? im really shocked that cleftpals havent been helping you!! hugs