Feeding / Nursing Questions (Soft Cleft Palate)

[HollyBee]

Good Morning, I'm always on a mission it seems trying to find a better way to feed Graeme (soft cleft palate). We use the Mead bottles but have been trying different nipples and now too the Playtex bottles with the plastic liners. I've tried them before with Stage 1 nipples and just pressing on the liner to feed him but I made a discovery yesterday that is working, as he's getting bigger and stronger his suction is getting a little better I find. I bought the Natural Latch nipples in Stage 2 for babies 3-6 months, Graeme is 8 weeks now, well it worked... he takes the bottle without the assistance of us squeezing it into him. So I'll play with that some more and see what's better. I just figured if I end up switcing to formula that the Playtex system is more portable. I also had a better attempt at nursing him yesterday, so maybe I need to work on that with him and getting him comfortable eating that way, maybe there's still hope that he'll nurse.

What has been the success of anyone with nursing their babies with a cleft of the soft palate only??? Any helpful advice? Also how are the Pigeon bottles? I've looked those up too?

A lot of what I could find on nursing is that it isn't very successful with soft cleft palate (even in the La Leche information). I have dedicated all my efforts to pumping my milk and I would like to see if I can't give nursing another shot before I give it all up and go to bottles.

Graeme's surgery will likely be in May at 6 months old.

Thanks
Holly

[Heide]

Good morning Holly, glad to hear that your little one is able to suck a little on his own, hopefully nursing will work out. I know when I had our little one with the bclp the cleft team said nursing was not a viable option, we tried though but to no avail. I did read in some books that it was possible for babies with small clefts to nurse- I think trying to contact La Leche is a good resource and may I also suggest that you ask if there is a speech therapist through your health-care system that specializes in baby feeding issues, if so, maybe he/she may be able to give you advice. happy new year and all the best, Heide

[jacksmom]

Hey Holly! I don't want to be discouraging to you, but no one I've talked to with a cleft baby has been very successful nursing. Keep in mind that the most important thing is that baby Graeme is eating and healthy! That is a huge blessing with a cleft baby! We have used both the pigeon feeder and the haberman, I liked both, but we stuck with the haberman. I kind of wish we would have kept using the pigeon nipples, as they are cheaper and look more like a normal bottle. I would suggest at least trying one of these. The easier time he has, the more formula you can get down him at a time and the better he will sleep! We always had the issue of Jackson falling asleep before he was full, so he would wake right back up in 30 minutes wanting more to eat! Just keep trying! You'll get it all worked out!!
You can probably get a pigeon feeder or a haberman from your plastic surgeon.That way the insurance usually pays and you don't have to pay the bill! Habermans cost about $27 a piece!!!! Hope this helps a little!
Allison

[HollyBee]

Eating isn't his problem, he's eating very well, I guess it's me that's discouraged that I can't nurse, and I should just let it go. I've been sitting on the fence to quitting pumping and I've decided to go for it and I'll be switching him over in the next week as I hopefully dry up. I've been decreasing my domperidone and I should be off it within 4 days. Graeme takes formula just fine so I'm not worried that he won't be nourished. I am so sick today, I've got fever and I'm dizzy, good thing I'm at my mom's so she can look after him while I'm out of it. I miss Graeme though so much when I'm not looking after him!!!

P.S. we've been using the Playtex Nurser all day today with the Stage 2 nipple and he's been doing really well on it.

Holly

[Cindy Hecker]

My son Austin...he wil be 4 in Feb. Has a UCLP which was very wide. WE used the playtex Ventaire bottles with a stage 2 nipple from about 10 weeks until we stopped using bottles. Cleft bottles were too expensive (haberman!!) or too slow (MJ). We did trial and error with several nipples & bottles before finding the Ventaire. It was great for us. I did find that the nipples got worn out...and I had to buy new ones regularly then stretch the new ones a little. But the nipples were only $1 a piece.

As for nursing, I cried more over not nursing my son than his cleft. I had nursed my 2 older children and wanted too again. I became a pumping mom and pumped for 7+ months until It was just too hard. Every bit of breast milk is wonderful and 8 weeks is great!

Cindy
Mom to carissa 8, Tanner 6, Austin 3 and twins robert & steven 9 months

[HollyBee]

Thanks, that has been the hardest, I wish I could nurse him so bad and now I'm down to the last 3 feedings of breast milk and we're on to formula. Thanks for the replies and advice, it's all welcome.

Happy New Year!

[Mum from down under]

Holly Like Cindy I too cried more about not being able to nurse Evan than over his cleft. I would get even more upset when people asked if I was nursing him ( oh how I wished we could ) I pumped up until 8 weeks old when my milk just dried up & then I cried some more. I sometimes think this would have been different if we had come home soon after his birth instead of living with my parents for 9 weeks. But that is life. I tried my best. good luck with Graeme & the feeding

[heather]

I use the pigeon nipples with my son. He has a unilateral lip and a bilateral palate. The pigeon nipples work great. You can also use the nipples on many generic bottles, like the parents choice from WalMart. That way you only have to order the nipples and not the whole bottle. It saves a lot of money.

[tkebino]

My son was born(5/18/05) with a cleft of the soft palate only and since it was not discovered until he was 2weeks we did not have the bottles from the hospital. We use the Vent aire bottles from Playtex with the large natural shaped nipples and use the stage two or three. That worked the best. Good luck.

Cleft palate babies have a hard time breast feeding but remember you can pump.

PM me if you ever want to talk.