Hi, kinda new here also.

[karleysmom]

Hi, I'm Karen. I was born with a complete cleft palate 33 years ago. I have had about 12 surgeries to repair it. I've had jaw realignment and also have a donor bone in the roof of my mouth. I still have a tiny hole in the roof of my mouth and at 19, I decided enough surgeries for me.

On November 30, 2006 my husband and I welcomed our daughter Karley Daytona into the world who was also born with a complete cleft palate(hard and soft). She weighed 7lbs and 4 ozs, 20 inches long. We didn't find out about it until she was born but had some ideas of a possibility of it since I had way too much amniotic fluid throughout the pregnancy. We also noticed her recessed chin in alot of the sonograms. When my husband told me she had a cleft palate once I was in recovery from my c-section, I can't say I was really upset or devastated. I have it, I know what I'm dealing with and things could have been worse. To me and my husband she is beautiful no matter what her birth defect is. Plus with all the new medical technology these days compared to when I was born, I know we'll be in good hands. I will admit though, I've had my moments of crying, wishing she wouldn't have to go through what I did, especially when the formula is pouring out of her nose and she gets frustrated. Those are the times I wish I could make it all go away for her but then I realize she'll be okay and it will be repaired and she'll be as good as new. Right now our biggest struggle with her is her formula intake and her poor weight gain. She is only at 8lbs 10 ozs. They have raised her to a 24 calorie formula and it seems to be working.

I absolutely love this website and look forward to meeting and making new friends.

Here is a picture of her at 1 month. Sorry it's so big.

[jacksmom]

Hi Karen! I am also the mom of a six month old with a bilateral cleft palate. My husband is 35, and he also had a cleft when he was born. His was repaired successfully and his speech is perfect. He recently had reconstructive jaw surgery, so our stories sound very similar! Jackson was also having trouble gaining weight at first, and we switched him to the haberman feeder. After that he did SO much better! With the mead johnson bottle, he was getting tired of sucking before he got full. So you may want to experiment with some different feeding methods. There is also a lot of positive stuff on here about the pigeon feeder.By the time we heard about it, Jackson was already doing so well that we didn't want to switch! He also started eating even better after he got tubes in his ears at 12 weeks. We were told that all of the fluid build-up was probably making it painful for him to swallow.Anyway, just thought I would say Hi! PM me if you need anything!Hang in there!
Allison

[HollyBee]

Welcome Karen... your baby is darling.

[hatchedk]

Welcome! My name is Karen too, and my son is 9 months! Your daughter is such a cutie!
I feel your pain about the milk coming out the nose. When Andy gets cereal up his nose and he makes all the funny faces and sneezes, I feel so bad and would give anything to fix it for him, but I just have to sit there and watch.
You are going to be such a great resource to your child, you will know and understand her feelings so much more than I ever will!

[Hilla]

Welcome

I have struggled with mixed feelings for 8 months now. I guess it is part of the picture.

I am confident that everything will go fine, since the plastic surgery has developed SO much in these past years. Our little darlings are in GREAT hands.

-Laura

[sodapop]

Welcome! Karley is gorgeous!

[heather]

Welcome! I must say she's a cutie! My name is Heather and my son Eyson was born with a unilateral cleft lip and a bilateral cleft palate. He is three months old now and has yet to reach 10 lbs. So I know how you feel about the weight gain. I also have a four-year-old with a congenital heart defect. He faces open heart surgery more than likely before he's a teenager. You are absolutely right that things could have been worse. Hang in there. Any questions just ask. Heather

http://i142.photobucket.com/albums/r117 ... months.jpg

[karleysmom]

Thanks to everyone who welcomed me

Allison- Before I ever posted anything on here and kind of lurked on here (yes, I know, shame on me, lol) I thought our stories were very similar. I went to your website and Jackson is the cutest, actually both of the boys are cute About the Haberman feeder, I haven't actually tried it before. It was given to us at the hospital and my husband tried it but he got frustrated with it and found that the Mead Johnson bottle worked better for him so that is what I have actually been using ever since. I kind of feel like she gets tired from the sucking also. We go to a Cleft Clinic on February 15th and I think I'm going to ask them if they can properly show me how to use the Haberman bottle. I'm willing to try anything to fatten her up at this point, lol. So far, so good on her ears and no infections or problems that I know of. I'm looking forward to the Ear, Nose, Throat doctor from the clinic to weigh in his/her observations though. I look forward to talking to you more and sharing stories about the kids

Karen- Hi I'm not sure I'm looking forward to the cereal coming out the nose too, lol. I feel so bad for them when this happens. Karley has gotten a little used to it and doesn't get quite as mad but you can tell it still irritates her.

Heather- Eyson is also a cutie I'm glad I'm not the only one struggling with weight gain. I hate feeling like people think I'm starving her because they comment on how little she is. Hang in there with the two of yours too

[Carrie]

Hi. I thought I would let you know that my son Hunter struggles with weight as well. He is going to be 3 in April and is almost 23 pounds. I think he was just under 15 pounds at his 1st bday and just over 20 at his 2nd. It has been a very long struggle of him gaining slowly and losing quickly but we are finally seeing a steady weight gain. You are not alone.
Carrie

[heather]

Have you tried the pigeon bottle? This is what Eyson was put on and he does wonderfully with it. The bottom of the nipple is softer so that it can be pushed with their tongue. When they push with their tongue the formula squirts into their mouth without your assistance. There is a valve in the nipple that keeps the nipple full. I think that it might be worth a shot. He was on the Mead Johnson nurser and was hardly taking anything at all. We were lucky to get an ounce in him. He just tired himself out having to work so hard. Once he was switched to the pigeon he immediately started taking 3 and 4 ounces. He's now up to 6 ounces every feeding. Another thing about the pigeon is that you can buy just the nipples and they fit on just about any bottle you feel like using. Right now I'm using the pigeon nipple on a Ventaire bottle. It's much cheaper than buying the whole bottle all the time or the Haberman. Just a suggestion.

[karleysmom]

Heather- Is there a place or website I can go to so I could buy them? I'm willing to try anything at this point. Right now she will only get about 3 to 3 and half ounces in at a feeding and that's if we're lucky. Usually she gets no less than 2 and half ounces but to me that just doesn't seem like alot. In the meantime, I'm going to see if I can find those nipples. Thanks so much for the suggestion

[heather]

Go to https://store.childmed.com/
Then type in the product number 98073 and search
This will bring up a page that will have just the pigeon nipple to buy. I think they are $3.60 for each nipple. But it's alot cheaper than buying one Haberman for $25. Especially when they can be used on other bottles. I hope this works for you. Just remember than when you feed her, keep the air hole(the notch in the nipple)to the top at all times. If it leaks, just take the lid off, dry the notch off on the top and inside the lid and put the lid back on. She'll be good to go. Let me know how things go. I hope this works for you. Heather