New to the board.. Story inside

[06SIXLITER]

Hello all. Let me say I am so glad there is a forum for parents to come and listen and talk about there babies.

My name is Matthew and on 11/07/06 we had a beautiful baby girl 9lbs 4 oz. She was born at 12:06 pm and everything was fine.. At 3am the nurse practitioner came in and said that our sweetheart has a birth defect known as a Cleft Palate.. Up until that moment in time I had never heard of such a thing but we are so quick to learn. 6 days old and she still is eating just over an ounce 40mil.. every 3 hours We are seeing the Craniofacial team at UNC (in NC of course)

They have us using the Pigeon Nipples bottles. They have said that she has a small chin. and a cleft palate. Not sure if it is related??
below is a pic of our EMILY..

[Jeff Alterman]

Your little girl looks very nice. Thankfully she does not have a cleft lip so that is one less thing you have to deal with. Does she have just a cleft soft palate or is the hard palate also affected.

Jeff Alterman

[SONIA]

Welcome Mathiou,
Your princess is beautiful!
Your story is soooooo similar to our! We have a girl born on the 4th of June with exactly the same defect!
Don't worry, in this forum you will have all the answers you need!
Enjoy your little girl!!

[06SIXLITER]

They feel like it is the soft palate only but it could be a little bit of the hard

since I first posted she has begun to eat more and more with every feeding she is up to almost 2oz's!!!

my concern is how she will talk when she gets older?? they already said that they will put tubes in her ears as well when they operate in 9 months on her palate.

[Jeff Alterman]

It is very likely that your daughter's speech will be fine as long as the palate is repaired. If experience is anything, there is probably less of a chance for speech issues in the case of a cleft soft palate vs, a complete cleft lip and palate. I know of a woman who was born with a cleft soft palate only and her speech is fine.

Jeff Alterman at alterman@bestweb.net

[06SIXLITER]

Thank you, that is very comforting...

She is eating better now then she has been she is now up to almost 2 Oz's every 2.5 hrs. The Pigeon Nipple and bottle system seems to be our feeding solution..

[Z-Pup]

Matthew,

I just wanted to say hello and congrats on your beautiful baby girl! As I was reading your post I was actually holding my lil boy who his a unilateral cleft lip and palate. Then I got to the part where you said you were going to UNC, and then I looked over to the left under your name and saw you were in Sanford! We are also going to UNC, Dr. John Van Aalst is awesome! We are in Fayetteville! It is crazy sometimes how small the world is! Zach, my son, has is lip/nose repair Jan. 8th and then he too will have his palate repaired when he's 9 months old. We are also using the Pigeon Nipples, but were using those before we even went to UNC, I already had one ordered and it went with me to the hospital when he was born, we were lucky (in my personal opinion) to know about his cleft lip/palate before he was born.

I just wanted to say hello and wave to you from down the road. Everythign will be fine!!

[06SIXLITER]

thank you so much. and good to hear from a neighbor. I hope all is well and your trooper is hangin tough. We were totally unaware and we couldnt even feed our baby girl in the hospital. WakeMed is where she was delivered and they all were SOO GOOD! They didnt have any special bottles but they managed with a pre-mee nipple until we saw the specialist @ UNC


The doctors luckily have said hers is small and only effects the soft palate and it should be an easy fix. 2.5 hrs and they will go ahead and insert tubes in her ears at the same time.