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Thread: Cleft Lip and/or Palette

  1. #73

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    Oh Hon, I am SOOOOO excited for you both!!! Thats great news!!!!

    Sh'll be drinking from a bottle on her own before you know it!!!

    Nettie, when we started solids, it was weak Farex from the bottle too!!



    We have a surgery date now, 4th Nov. Cleft Palate repair, another Lip Repair, and grommits put in....I'm dreading it, I'm so nervous now....

  2. #74

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    PM... I'll be thinking of you hon. We'll be doing the spoon-feeding thing soon I think as Liam's getting really impatient with liquid food!

    Congrats Deanne! That's fabulous! I'm so excited for you!

  3. #75

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    Cool

    Well ladies Taj was 4 months old on wednesday...where does the time go?? And yes I am still expressing 5 times a day but it has paid off beacause he is a little buddha at 6kg!!! My aim is to still be expressing at 6 months!!!!

    Since I was on here last Taj has been fitted with a dental plate and we go up to the rch every friday to have it adjusted. Because he has is palate the plate is just to push back the protruding gum and stretch his top lip down ready for surgery. It can only move back into his mouth so far as his palate is in the way! It means he will get a near perfect lip repair result and won't be so bucky and tight looking. We already have gum movement and hopefully lip repair surgery can still go ahead at 6 months!!

    A doctor of dentistry has come over from canada to do this plate stuff as no one at the rch could do it so we are very lucky..she is so nice and very supportive!!

    I can't give any advice to the mums on here regarding feeding as Taj has his palate and it is just his lip that has the bilateral cleft (his top lip is attatched to the bottom of his nose) But we do use a haberman feeder as the teat is nice and long and he can suck the milk out himself, I have never had to squeeze the bottle. He cannot get a good seal around normal teats tho, hence me not being able to breast feed!!
    All the ladies on here are a great support and have loads of advice so just ask any questions you want!!!!

    Cleft Pals were a great help for any information and have morning tea's in your local areas so you can meet up with other people in a similar situation!! Royal Childrens Hospital Cleft Clinic are also a great help and can link you up with what you need. I think their new coordinator is called Tiffany? Phone number is 93456582!!

    Hope everyone is well and good luck PM with the upcoming surgery!! Everything will be fine! He will be in such good hands!!

    xoxoxoxoxoxoxoxo

  4. #76

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    I'm so glad he's doing so well leesha!!!
    Gotta run now, but will back to do a better post!!!

  5. #77
    annemaree Guest

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    Hi there every one,
    Went to s/p and she said i was doing the right thing by using the chu chu teat which she is drink out of great and just a normal bottle which is even better, she told me that i was lucky that her clift is not that big and only of the soft palate. She was not happy thatno one in the hosp picked it up and it has taken me 10 weeks to get some one to belive, she said she would love to know whats going on in on in our hosp. Still no word on monash hos and rch wont see me cause in s/e sub so have to go to monash. i hope every bodys elses babys are doing well and i will take later thank you for all you help

  6. #78

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    Leesh - on the expressing! You beat me - I only managed 3 months Glad you're getting good help. Sound like CleftPals really helped you too - we're about to join (have been in touch with the SA organiser). It's really interesting how different all our bubs are with their clefts! I think your Taj is more unusual in that he's got his palate, but the lip is more affected. Most of our bubs have a missing palate!

    Annemarie - that just plain old sucks... I'd be kicking up a stink if I were you and saying that you refuse to go to Monash because of their initial incompetence. Glad you've got a good speechie though - they're worth diamand dust, they are! Sounds like you're doing all the right things so far. Good luck with getting the hossy's help...

    Can everyone have their fingers crossed for us? We're about to try spoon feeding this weekend! I'm sure Liam's ready for it, but still not sure how he'll cope if he gets it in his nose (which I'm sure he will!). Will let you all know how it goes!

    Hello PurpleMamma, Deanne and Smx83!!
    Last edited by Nettie; October 3rd, 2008 at 08:50 PM. Reason: They've changed the smilies on me!

  7. #79

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    Toni - I hope you went well with the spoon feeding, big step going from bottle to spoon, I hope Liam doesn't have to much come out of his nose, poor thing. A bit delayed but . I have had a busy weekend, DP's birthday and he starts a new job tomorrow.

    Leesha - There is not much difference between the age of my DD and Taj, my aim is to express until Matilda is one or longer , I will just concentrate on 6 months for now hey?! She was weighed last Wednesday and was 6.3 kg - looks like we both have buddha babies! Can I ask how much EBM Taj drinks in a day/feed? Matilda is on 175mls every 4 hours (we increased it as she was sleeping through 1 feed) our problem is now she is sleeping through 2 feeds - she only wants 4 - 7.30am, 11.30am, 3.00pm and 8.00pm then she sleeps through until morning again... she is gaining weight nicely but surely a baby should be drinking more often then that?
    Maybe I should start her on some farax soon.

    Annemaree - I am glad that you finally got in to see somebody, and congratulations that you were doing all of the right things. I find it very strange that the RCH will not see you, that is who is taking care of my Matilda and we live in the SE suburbs (Hampton Park). We would prefer to be seen by Monash or something closer but they insist that everything has to be done in at RCH. I think it is no matter what you want you get the opposite! Best of luck I hope that things get easier for you now that you have a professional team there to help.

    PM - Congrautlations on the date for Kanes op, it will be great once it is all over and done with, I have a long wait until Matildas Palate repair and grommets, she has to be 18 months old, because of her jaw they are doing it a bit later.

    Well we had a bit of a slow day on the bottle yesterday, taking 30-50mls per feed, however she only slept about an hour all day, it was Daddys birthday so a bit to much going on for her I think. Today however she has had ALL of her bottles orally - we haven't had to use the pump once this is the first time ever that we haven't had to use the pump. Yippee!!!

    Deanne.

    ETA: Sorry for such a long post!
    Last edited by DaintreeDream; October 5th, 2008 at 07:55 PM. Reason: Sorry for such a long post!

  8. #80

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    Deanne- our two DD's are the same age and roughly the same weight so they are on par with each other!! Taj will be weighed again next week so I will let you know what he is then!!!
    He is feeding 180ml bottles....7am, 11am, 3pm, 6.30pm,then 2am so roughly every 3 to 4 hours. but then he can go from 6.30pm till 2am(6hours) He was sleeping from 7pm till 2am for about 2 weeks but now the last few nights he hasn't wanted to sleep until 9pm! Just when I think I have him worked out he changes his patterns. So I guess he still has 5-6 feeds a day.
    Because of the plate in his mouth we had a rough time for a few weeks but now he is used to it and feeds really well...Great news you she fed from her bottle without the pump! Makes life much easier! I was thinking farax soon too but everyone keeps telling me he shouldn't need it if he is taking EBM? So i'm not sure about that!!
    Is your surgeon David Chong @ the rch? If it is he is great to deal with isn't he?

    I found out on friday while we were at the hospital that Taj is the first baby in victoria to have this plate procedure and his surgeon is very excited..it makes the surgery only 10% and the plate 90% of fixing it.. He is different to all the babes on here because it is just a bilateral lip and no palate!
    The cleft coordinatro is Stephanie not Tiffany..I got the name wrong in my last post!!

    Toni I hope the spoon feeding went well too..not too much coming out of his nose!!! Should take some photos for the 21st birthday tho!!!
    I try and find the funny side to all this stuff..it helps me deal with it alot easier!!

    anyhoo better go and clean up a bit while Taj is sleeping...maybe I will have a nap too!!!

    Leesha
    xoxoxoxox

  9. #81

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    Just a quick one...

    He went ok - except he didn't seem to like the taste, so will try him on some veggies tomorrow!

    And just for info - none came out the nose! Although I didn't load the spoon up much...

  10. #82

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    Where is everyone? Noone has posted for awhile...hope you are all ok and just busy!!!
    xoxoxoxoxo

  11. #83

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    We had our first success tonight with solids. We baked a sweet potato in the oven & mushed it up. Then I put a bit on my finger & he happily stuck my finger in his mouth (whereas he hated the spoon). he loved the taste & kept coming back for more.

    That was until he put my finger in too far and I think it hurt. He was tired anyway, so we gave up then. Will try more tomorrow.

    He only had a little dribble of orange water come out his nose - so I call that a big success! I left my finger in as long as he liked, and I could feel what he was doing with it. He seemed to press it against his gum (which is complete) and use his tongue to get the food off! I think this will help him not get it in his nose!

    PM - how you doing girl? Not long to the op, so I'm already thinking of you and sending you 'goodluck' and 'calming' vibes...

  12. #84

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    Am trying to upload some pics of Taj so you can finally see what he looks like!
    Having a bit of trouble but I finally worked out how to get a ticker up so there is a small pic of him on there!!

  13. #85

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    Ok I now have photo's of Taj under my user name in the gallery!!
    Just a few for now and will upload more as I go!!!!
    He is 5 months old this wednesday! We are going to get a surgery date real soon for his lip repair!! YAY!!!!!! Still going every friday up to the royal childrens hospital but the plate they fitted has done wonders so it has been worth it!!!!
    Where is everyone these days?? You must all be busy!!
    xoxoxo

  14. #86

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    Hi all,

    Hope all is going well with all your bubs! Finally got a confirmation for Taylor's cleft to be repaired....9th Dec so am glad it's all falling into place although am a bit nervous about it all...!

    Have been giving Taylor solids and it was a bit hard to start with cos she kept getting it up her nose but then I found out why...she was storing it all in her mouth!! Ah well am learning now to wait a bit before I shove some mashed veggies in her mouth now!

    Lots of Love xxx

  15. #87

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    Hi all....just wanted to let you know we got a date for Taj's lip repair surgery yesterday...11th Dec so only 6 weeks to go. He was born 11th of june so its 6 months exactly to the day!!
    Very exciting but very scary now it's real!!!
    Just wondering what you thought about me starting Taj on solids...do you think I should just wait till after his surgery or start him now ? (he is 5 months) Not sure what to do??

  16. #88

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    Leesha - He's gorgeous! Love the photos... I would let him decide. Do you think he needs the solids? Is he satisfied with milk? I reckon it would be easier on you if you waited as he'll only have to re-learn how to eat anyway. But I'd go with your gut instinct...

    Wow - looks like it's all happening in December!! We've got a 'cleft clinic' appt on 1st Dec to decide the surgery date for Liam's cleft palate repair. Probably March 09.

    Smx & Leesha - to you both! Courage and strength. At least we've got each other for support, hey?

    Liam's doing really well. He's a bit on & off with solids. One day he'll really take to it and the next he can't be bothered. So we're going slowly there. Unfortunately he seems more interested in sweeter foods (banana) than the veggies.

    Got to go.. he's making noise (and supposed to be asleep!!)

  17. #89

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    Leesha - He is so cute. Yippee on getting a date, scary but a great step forward for you. Matilda is the same age as Taj and I have had her on solids for two weeks now as she was ready, is Taj showing any of the signs? If not it may b worth holding out until after the surgery as Nettie said.

    As above I have started Matilda on solids 2 weeks ago, she was on rice cereal for 2 weeks and done really well and we are on our 3rd day of sweet potato and she loves it too! I was scared of it coming out of her nose, the first day she ate it all and then 10 minutes later I picked her up to change rooms and it all came out her nose, she must of stored it up there! But since then we have gone great, she eats it and swallows, no more out of her nose, except yesterday when she had a sneezing fit after a mouthful and she has sweet potato come out .

    On the bottle vs tube feeding we are going ok, we haven't come off the tube yet, she takes about half and half, the morning feed she takes orally then the next 100mls oral 100mls tube, then she gets slacker and slacker! It must be tiring for the bubba girl!

    Nettie - I am holding off on the fruits for that reason, want her to like her vegies I love banana and I know once she gets that she won't want anything else.

    PM - Not long now...! I'm excited for you.

    Hello to everyone else...

    Deanne.

  18. #90

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    HI All My name is Adele and I am from Cairns Qld. My son Alex was born with a complete cleft lip and palate. He had lip and hard palate repair at 3 .5 months and we are due for soft palate repair on 27th November. We have the ops in Brissy as they don't do them here. Seems there are MANY different opinions and ways of doing things with cleft repair, depending on where you go/who oyu see. Have any of you found that??

    Nettie - thanks for putting me onto the site and for the 'spare parts'. I have not had a chance to get in and actually read/join up until now. Wish I had taken your advice and looked into this site sooner as you guys are all going through same as us. How are the solids going? Alex has been on solids since about 4.5 months. He loves them but did the same out the nose thing for about a month or so. Mostly not too bad now but does store up sometimes LOL.

    Leesha - NOt sure if this helps but if you think Taj needs to start solids, maybe get him used to soup-like sloppy stuff . Not sure what your cleft pals recommend for the feeding but the 'witches hat' we used would allow for 'soupy' solids (runny custard or that type of consistency) . Alex was not on solids then and actually preferred runny milk but following Cleftpals advice we did try thickened formula and if he had liked it, feeding time may have been a little less messy They told me custard (or at least a bit in with the formula)is often a hit after the op and helps with sustinance as they do often cut back on feeds for a few days (Alex lost 1kg and he was a hungry baby).

    If anyone has tips for the palate op please let me know.

    Thanks

    Del

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