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All mummies and daddies with beautiful cleft palate babies - c'mon in! Rss

Hi Bec,

That's great to hear things have gone so well. Would you mind me asking who your plastic surgeon was at Westmead, you can PM me if you like. From the little so far we have seen of the team at Westmead, they really do seem wonderful.

It's great to hear such positive things. Good luck with the palate repair, let us know how it goes.

hi i'm mum to a 13mth old DD who was born with a cleft lip and palate. she has had lip and palate repair but still more to come when she is older.They did an awesome job on the lip repair but she will know have to have a nose job when she is older due to stent problems. She did great with everything since the moment she was born speech pathologist have even videoed her to educate others I'm so proud of her.

mum of Jessica and Krystal !!

Hi all,

Just thought I'd drop in and say I had my little bundle of joy two weeks ago. Lachlan was born on the 25th at 4.03kg! He's doing well, we had the plate put in on Friday so we've had a bit of a rough weekend. We've met with the plastic surgeon, ortho and the cleft palate clinic so they all know us now, oh and audiology for hearing! All this and only two weeks old!
He's a little cutie and we fell in love with him the moment we laid eyes on him. We went back to playgroup yesterday, it's funny explaining to 3 and 4 year olds when they ask 'what's wrong with his mouth?', I tell them and they just accept and say, 'OK'. My other son doesn't care in the slightest, didn't even ask about his lip, just why we had to go to the Dr so much. He thinks his little brother is the bees knees!

TJK Congratulations on the arrival of Lachlan, While things sound like your living in a whirlwind, seems like your coping as well as you can..
Hello to all the other mums with kids with clefts..
My daughters prep for surgery has started but it will be another 12 months until it happens, she has had numerous x-rays, and will need to have another set of braces on her top teeth again for twelve months before her surgery..
With her PRS her jaw is very tiny and while its grown somewhat over the years, her bottom front teeth sit well back from the front top ones.. thus having the jaw surgery. Its not too noticeable unless you really know what your looking for. We have been in contact with other kids who have had this same op and the differnce is staggering even though to look at the before pics you wouldnt think much was wrong until you see the after shots..
Anyway take care all and for those bubs having surgery comming up I wish them a speedy recovery... Take care karen

Hi Karen,
Thanks for the congrats!
I wish you all the best of luck for your daughter's surgery. It's always a little scary, although I've only gone through one with my other son I'm sure I have lots to come. I hope all goes well, you'll have to let us know.

Regards,
TJK

Hi there

Congrats TJK, its so exciting when your baby finally arrives. I was just wondering if anyone has used both the haberman feeder and the pidgeon feeder? We used the haberman with our two older children and had no issues with it but now with baby number 3 the speech therapist is pushing us towards the pidgeon feeder. I don't have any issues either way but all the reasons she outlined for using the pidgeon feeder over the haberman feeder, seem silly to me personally. Has anyone used both and has any comments/feedback etc.

Cheers
Juanita
Hey ladies sad
Good note my lil girl had her surgery on thursday it went well its perfect aparently but life so far has been anything but...
We didnt get out of hospital till today (tuesday) mainly because i think she was getting to much for them. She wont drink we have to syringe her is this normal does this stop?? it breaks my heart having to do it. Iended up in tears last night fully overwelmd by her not eating or drinking and having to battle her even for a mer 50mls from a syringe sad bottles are the no goes she throws them now its like she is terrified of drinking. I know she has to relearn it all but does it get better?? sad I dont know what to do anymore doesnt help that nurses gave me two different options in regards to her feeding 1 force it by syringing it in or starve her till shes hungry enough to take a bottle sad I feel mean about both those senarios and cant really do the later one because it seems cruel.
sad any ideas on how to get her to eat or drink?? Shes never had solids and the stupid nurses seemed hell bent on trying to get her eat all the stuff they tried to give her she ended up just spitting it out balling her eyes out. It reminds me of an ad on tv awhile back with the lil boy shaking his head from side to side when being fed. sad I feel like crying now as i write this im just at my wits end sad

Jess - http://www.playtimemagic.co.nz

Mum2threegirls...

When my daughter had her first surgery, I started feeding her milk from a sippy cup... I tried the one's with the teat shape, but it wasnt as good as a soft spout, with the soft spout she was able to get the milk out more or less by chewing the spout..kind of like clamping down on it with her gums, and sucking..she used this from 4 months of age..I am sorry things are a bit frustrating for you.. but as you know its all trial and error and it does get easier...keep up the good work..

TJK Thankyou...DD is getting braces on tomorrow, she has these back on for 9 months then surgery...so counting down..

Hi all,

Juanita, sorry I didn't see your post earlier. We haven't used the haberman feeder but our cleft nurse said they try to only use it when really necessary because otherwise the babies get lazy. I've tried the pigeon bottle but hated it, had to change halfway through a feed because just couldn't get much out. The best bottles I've found are through cleftpals, the qld bottle and chu chu teat or the Mam soft bottle, not sure where you can get them, our nurse at the hospital gave us one. They're must easier to squeeze.

Mum2three girls,
My little one also just had his first surgery, our was yesterday. So far I've found the best way for him to have his milk is make sure he has panadol (or by prescription oxycodone) before a feed so he's not so sore. Do you think she's in pain? Our Dr has us back on our normal bottle straight away.

Good luck.
[Edited on 16/12/2008]

Thanks TJK, you reminded me that I also used a chu chu teat with a soft squeezable bottle prior to the cup... the chu chu teat is similar to the sippy cup spout I used..actually I still them as a momento..
The hospital got mine for me from Cleft Pals..and I wish your DS a speedy recovery... ,

Hi! Its nice to find a group that all understand the cleft babies!

My son, Jyden, was born in april 2009. He had an unilateral cleft lip and a cleft palate.
He has just had his 3op (lip, palate). He had a pharyngoplasty and oronasal fistula to help his speech. The pharyngoplasty went really well, althought the oronasal fistula procedure didnt work at all. We are now looking at a plate for him.....back to townsville we go :-s
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