New Here!

[jacksmom]

Hi! I recently stumbled across this site, and I have already been so inspired by all of your stories! On June 29, I delivered a beautiful baby boy. Shortly after he was born, my best friend, who was also my L&D nurse, told us that Jackson had a cleft palate. My husband was also born with a cleft, but his mother was told that it was caused by a medication she had taken during her pregnancy, and that it was not hereditary. My first son was born completely healthy, so we were shocked to learn about Jackson's cleft. At first I was actually not very concerned, after all, my husband shows no signs that he ever had a cleft, and he doesn't remember anything about it. I guess I was just clueless about all of the things Jackson would have to go through! At the hospital, they told us to just feed Jackson with a normal bottle, but by the time we went home, he had a lost over a pound, and was almost dehydrated. So, we met with the cleft team at Children's Hospital in Birmingham and began using the Haberman feeder. It was only after that visit when I realized what an impact this was going to be on all of our lives! I still can't imagine my precious baby having SURGERY! Since then, he has already gotten tubes in his ears, and we are having quite a bit of trouble with reflux. He is also still only sleeping about three hours at a time. I know we have a LOT ahead of us, and I look forward to getting all of your tips when surgery time gets here! Right now, we are scheduled for surgery in April 2007, but we have an appointment scheduled with another surgeon who operates at 6 months instead of 10. Does anyone have any feedback about doing the surgery sooner? Also, we seem to be having a HORRIBLE time learning to eat with a spoon. Does anyone have any suggestions? Sorry to be so long, but thank you for looking! You can see pictures of Jack at
www.babysites.com/sites/astand/
Thanks again!
Allison

[Mum from down under]

Welcome to you group Alison. Wow a little boy how wonderful!! The Haberman Feeder rocks It was the only bottle Evan would take after his 1st op. We have yet to face our Palate operation. Evan will not have that repaired until he is 15 months old. Every doctor is different every country is different. We feed Evan solids with a great soft spoon by Heinz it was recommended by our cleft clinic. Not sure if it can be purchased overseas though. Sorry I have to cut this short Evan is calling for me & I cant make him wait. Good luck and once again hello & welcome. And a big hug to Jack. I love those baby blues.

[hatchedk]

Welcome!
We have only had our lip surgery so I can't give you any advice about the palate surgery. Except surgery sucks but you get through it. We are having our palate surgery between 9-12 mos, and he's 6 mos now.
We have had challenges eating spoon food, he really loves it but it slides out and he prefers to put his fist in his mouth to push it down. I think it is because of his obturator. It's really slick and I think it makes lip closure difficult. But that's my unprofessional opinion.
Welcome to the group...it's a great resource!
Karen

[heather]

Congratulations on the baby boy! I recently gave birth to a beautiful baby boy myself on November 8th. He was born with a unilateral cleft lip and a bilateral cleft palate. Obviously he isn't old enough to have his surgeries yet but I thought that I would tell you that my little guy was switched to the pigeon bottle and is doing extremely well. He went from only taking 1/4 oz. at a feeding to now taking 3 oz. at just 3 weeks of age. The pigeons are so much less expensive than the Haberman. But not every baby is the same. If the Haberman is what your baby can take then that's what you have to use. Try all your options though. We have seen Eyson's, that's my baby's name (pronounced eye-sun), surgeon and he will not do the palate surgery until he is a year old. There is another surgeon who will do all the surgeries sooner, but he's under quite a bit of scrutiny for his methods and drugs. So I'm not real sure about doing the surgery sooner. Just make sure you weight all your options and choose only what's best for the little one. Good Luck! Heather