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[Anita Nebeling]

hello
I am the mother of Frederic Nebeling born 8-17-99 he has a complete bilateral cleft lip and palate he was born month early he had problems feeding the speech people used the haberman but he would tire easily we were then talked into getting a g-tube put it which we did boy I have not found many people who have had success we have this problem of him spitting up most of his formula at each feeding seems to be worse with the very first bottle of the morning he gets his last bottle at 10:00 at night he sleeps thru the night so he does not get another one til 6:00 in the morning we are starting to think we may need to feed him continously thru the night is there anyone out there who got a gtube for the cleft you can email me at
anitan@jacksonville.net


thanks Anita Nebeling

[Melanie - mom of Savanna]

Hi! My name is Melanie. I'm the mom of a 1 yr old girl who also was born with a cleft palate. Savanna had Pierre' Robin Syndrome (PRS) which is a small bottom jaw. Her tongue sat upright in her throat and caused the cleft. She could not breath well on her own and received a tracheostomy tube when she was 3 wks old. She lost 2 1/2 pounds in the first 3 wks of life and was given a g-tube at 4 wks of age. I know EXACTLY what you're going through and think I can help. The spitting up is because you are most likely feeding the baby too fast. Its hard to regulate the speed, I know, but the same thing happend to us if we fed her too fast. You really have to go slow. Try to remind yourself of how long it takes to bottle feed and keep that pace. Even adults get sick if they eat to fast. Savanna was fed continuously from 10 p.m. to 6 a.m. the entire time we used the tube. Its at such a slow rate that they do not spit up at all. It really helps them gain weight also. Please feel free to email me at gopredators@excite.com I'll help in any way I can. God Bless!
Melanie