Cleft Lip and/or Palette

[Smx83]

Hi Matilda's Mum,

The particular teat that I am using is called a Traz Chu Chu Easy Feed Teat, that is the name of the teat I am using....not aware of any other chu chu teats but I'm sure there are some....like you said every baby is different and while some may pick up on it, others may not and prefer the pigeon teat....it is definately worth trying it if you are still unhappy with the way her feeding is with the feeding methods...have not used the Habermann but would have been the next option if this teat did not work....I used the Traz chu chu teat on Taylor when she was about 4 weeks old and she picked up on it straight away...like purplemamma was saying she can use the chu chu teat with any bottle, not necessary just a squeeze bottle, I find that so much milk comes out easily without squeezing the bottle so you could use a normal bottle, just replace the "normal teat" with the chu chu teat and should be fine, the only thing is that sometimes it leaks but I have not had any problems with our bottles.

Yes, give Cleft Pals a call or those numbers I gave you on the previous blog, they should be able to assist you

Annemaree - I really understand how you are feeling, Taylor's cleft was not picked up until a few days later when I was in the hospital, none of the midwives picked up on the cleft palate, because it was so far back in her mouth I guess they just never noticed it or considered that was what it was, it was not until I contacted a breastfeeding specialist in the hospital who tried to assist and then a speech pathogist was contacted after Taylor had no food after her 3rd day....it's amazing that you had to go through that much time before her cleft was picked up! I remember feeling very nausous when they told me what she had (I had the 3rd day baby blues badly) but at the same time was relieved that there was something we could do....

I am so glad there is a website like this where we can all support one another and everyone has been really helpful to me and I'm sure to all of you's too! I'm very thankful!!

Have a wonderful week and hope Anne Maree that your appointment was successful today!

[Nettie]

Annemarie - you poor thing! It's enough of a shock to get a cleft diagnosed - without it coming so far after the birth! We waited 3 hours to find out - that was bad enough! I thought I was doing something wrong with BF!! Hope your appt went well - can't wait to find out!

MM - yes, we use Habermann (haven't even tried anything else - but it works so well for us that we don't need to confuse the poor fella!).

He's doing great. We've started feeding him rice cereal via the bottle (1/4 recommended strength) and hope to start spoon feeding in the next week or so! Wish us luck!

to everyone!

PM - Got a surgery date yet?

[Pretty Butterfly]

No date yet....

Will be calling on Thursday, clinic day, to find out whats going on. Last time we had a about 6 weeks notice.... So it looks like Kane will only be done just before christmas, or maybe next year.....

He needs his grommits SOON, so I'd better find out whats going on....

[DaintreeDream]

Hello Ladies.

I can bearly contain my excitment

Matilda has been drinking between 120-130mls per feed orally for the last 2 days leaving 45-55mls to go through the tube, this was great, but this last feed she had 175mls - the whole bottle - orally

I really do have to thankyou for your support as it seems to have all happened since I spoke with the lovely cleft mummies in here that my DD has started to feed better orally, PM your advise was especially helpful

Thankyou everyone

Deanne.

[Pretty Butterfly]

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....

[Nettie]

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!

[leesha]

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

[annemaree]

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

[Nettie]

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!!

[DaintreeDream]

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!

[BabySummer]

Hi Ladies,


My name is Nicole and I just found this site and love this blog. I have a 11 week old baby girl who was born on 19th March 2009 with Pierre Robin Sequence (cleft palate and small jaw). We spent almost 2 months at RCH but are now home and happy. Her only issue now is feeding. She has a NG tube and has been struggling with the Haberman. She has about 50ml once a day if lucky(total feed is 150mlx5). Yesterday we had a check-up at RCH and speech dept gave me the chu chu cross cut to try. She likes the teat better but is not getting a lot of milk out of it. I was thinking of getting a squeeze bottle or the trying the pigeon teat. There is also a chu chu easy feed teat which I may try.

I really want the NG tube out and would love any advise or to speak with other mums of PRS

Regards,
Nicole

[DaintreeDream]

Hi Nicole,

My daughter has just turned one and has Pierre Robin Sequence, she also has a chromosome deletion, she was in the RCH for 3 months and had jaw destraction surgary performed at 9 weeks. She is still, unfortunatly, being fed via NGT, it is very frustrating. We went through a stage at about 4 months were she was feeding really well on the habermann and she went 2 and a half days on oral feeds only, she then became sick and went backwards, now I am lucky to get 20mls a day into her. She is starting to eat solids though and we are working with speech and dieticans at the childrens to try and get rid of this tube. Matilda is currently on 3 milk feeds a day and our next plan is to cut out her lunch time milk and hope that she will get hungry and eat (I know it sounds mean, and I hate the thought), once she is eating solids properly they seem to think the drinking will follow, as with us it has not stepped to the next level.

My dinner is ready so I have to go for now but if you would like to talk more feel free to email me: dee_joint@ hotmail dot com
I am happy to talk on the phone also but I do not want to put my number in here so email me if you like .

I am in the RCH fortnightly for physio and speech, we have proberly crosses paths!

Best of luck.
Deanne.

[BabySummer]

Thanks Deanne,

I would love to talk more and have emailed you. If you don't get it let me know because it said invalid address. Sent it to dee_joint@ hotmail.com

I did forget to say in my email to not feel bad about letting Matilda go hungry. I often wanted to let Summer demand feed in hospital but they said no. To me it seemed she was never hungry enough to feed via a bottle. You need to do what you need to do and if she was really hungry she would let you know.

Regards,
Nicole