Cleft Lip and/or Palette

[annemaree]

Hi there every one thank you so much for all your help i have now got a apponitment to see a s/p today at frankston hosp yeh it is great to know that im not the only one out there with this problem i feel so much better i will let you all know how i went today and i will ask if it would be quicker to go to the rch than monash i hope all your day is good thnk you so much annemaree

[Pretty Butterfly]

Oh hon thats great!!!!
They'll sort all her feeding issues for you hopefully....
Good Luck...

[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....

[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

[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