Need Support and Info if someone has experience

[nancy2394]

I haven't had a chance to read all the replies, so i apologize if someone has already said this. Anyway, just because a baby has a cleft lip or palate does not mean they have to be tube fed. They actually have special bottles/nipples made especially for a baby with a cleft lip or palate. The bottle is usually a squeeze type bottle and there are a variety of different types of nipples.

In regards to eating... one of the problems with a cleft is that they are unable to create a seal/suction around a nipple to effectively suck the formula/breast milk. Depending on how bad the cleft is will determine how your baby will be fed.

If the cleft is severe enough to warrant tube feeding... it's no biggie. You can do it I do it all the time at work. They have 30 day feeding tubes that can be taped in place or you can use the regular ones that you can put in for each feeding and take out. They will show you how to do it. It might sound scary, but I promise you... it's not. They will show you how to check for tube placement, that will be the most important thing.

Another thing.... plastic surgery for cleft lip/palate has come a long way. It is truly amazing to see what they can do with them now. Sometimes they can walk away with nothing more than a teeny tiny scar It's hard not to stress about things when you know there is something not quite right, but try not to stress about it. This is a fixable thing.

Have you ever seen a baby with a cleft lip or palate before? Have you seen them before they've had surgery on it?

[NicoleLJ]

Originally Posted by nancy2394

I haven't had a chance to read all the replies, so i apologize if someone has already said this. Anyway, just because a baby has a cleft lip or palate does not mean they have to be tube fed. They actually have special bottles/nipples made especially for a baby with a cleft lip or palate. The bottle is usually a squeeze type bottle and there are a variety of different types of nipples.

In regards to eating... one of the problems with a cleft is that they are unable to create a seal/suction around a nipple to effectively suck the formula/breast milk. Depending on how bad the cleft is will determine how your baby will be fed.

If the cleft is severe enough to warrant tube feeding... it's no biggie. You can do it I do it all the time at work. They have 30 day feeding tubes that can be taped in place or you can use the regular ones that you can put in for each feeding and take out. They will show you how to do it. It might sound scary, but I promise you... it's not. They will show you how to check for tube placement, that will be the most important thing.

Another thing.... plastic surgery for cleft lip/palate has come a long way. It is truly amazing to see what they can do with them now. Sometimes they can walk away with nothing more than a teeny tiny scar It's hard not to stress about things when you know there is something not quite right, but try not to stress about it. This is a fixable thing.

Have you ever seen a baby with a cleft lip or palate before? Have you seen them before they've had surgery on it?

I have not ever seen a baby born with one but my sisters son had one in the womb that was detected on an ultrasound but when he was born it was together though a large part of the upper lip was raw looking skin. He is now 13 and has a scar there. He never had surgery. That is the only experience I have with it.

So never seen a baby with one or what it looks like after the surgery. My biggest concern when we were first told was getting breast milk into the baby. He said tube feeding would most likely be required. I hope he is wrong but in either case he did tell me that as long as I produce enough then pumping and feeding should not be an issue at all. Thanks for letting me know about the bottles. Right now any info and all info is what I am looking for. Prepare for the worst and hope for the best type thing. I am glad the surgeries have gotten much better. I am hoping that the ultrasound is wrong. No mom wants to hear that anything is wrong. But I am glad it is not a life threatening issue. Thanks agian for the info.

[nancy2394]

Originally Posted by NicoleLJ

I have not ever seen a baby born with one but my sisters son had one in the womb that was detected on an ultrasound but when he was born it was together though a large part of the upper lip was raw looking skin. He is now 13 and has a scar there. He never had surgery. That is the only experience I have with it.

So never seen a baby with one or what it looks like after the surgery. My biggest concern when we were first told was getting breast milk into the baby. He said tube feeding would most likely be required. I hope he is wrong but in either case he did tell me that as long as I produce enough then pumping and feeding should not be an issue at all. Thanks for letting me know about the bottles. Right now any info and all info is what I am looking for. Prepare for the worst and hope for the best type thing. I am glad the surgeries have gotten much better. I am hoping that the ultrasound is wrong. No mom wants to hear that anything is wrong. But I am glad it is not a life threatening issue. Thanks agian for the info.

ultra sounds are not always right. Worse scenerio... your baby has a cleft. You can do this... it might be a shock when you see the baby for the first time.. but after a few seconds, you won't see anything but a beautiful baby in your arms. You can get the breast milk into your baby.. don't stress about that. Even if you did have to go the tube feeding route, it's no different than putting formula through the tube. Breast milk is best for your baby You will have to work a little harder with your milk supply since you will rely on pumping rather than putting the baby to breast.. but it can be done. And there are compounds some pharmacies can mix up that can aid in milk production. Some mothers take reglan to help boost milk production. No need to stress, you got this

[NicoleLJ]

Originally Posted by nancy2394

ultra sounds are not always right. Worse scenerio... your baby has a cleft. You can do this... it might be a shock when you see the baby for the first time.. but after a few seconds, you won't see anything but a beautiful baby in your arms. You can get the breast milk into your baby.. don't stress about that. Even if you did have to go the tube feeding route, it's no different than putting formula through the tube. Breast milk is best for your baby You will have to work a little harder with your milk supply since you will rely on pumping rather than putting the baby to breast.. but it can be done. And there are compounds some pharmacies can mix up that can aid in milk production. Some mothers take reglan to help boost milk production. No need to stress, you got this

Thanks. Looks was not even an issue we thought about or honestly care about. Though I can imagine it will be a shock at first but it is still our baby and is perfect no matter what. We are more concerned on the feeding, cleaning, the surgery and how to prepare for that and what to do after. The idea of one of my babies having a surgery so young just worries me to no end for obvious reasons. Pumping I am used to. Did it for my last too though with breast feeding too. I also had to be on medication to keep my supply up since I always seem to dry up for no reason around four months so that is a non issue for me. We will do what ever we have to to ensure this baby is healthy as possible prior to the surgery and after. Thank you so much for your advice. Huge help and stress reliever.

[Miakoda]

My niece was born with a severe cleft lip and mild cleft palate. I'm on my phone and it's about to go dead, so I'll get more into it tomorrow. I'll post some pics pre- and post-op as well.

[puppydog]

No advice here. I just wanted to say that I'm sorry that you are going through this.

[Paige]

I have no advice either but I want to offer all my support and hugs.

[jenv101]

Sending lots of positive vibes your way - I can't imagine how stressful that news would be! Lots of reassuring advice and support in here though!

[NicoleLJ]

Thank you so much everyone for your kind thoughts. Here is the update for this morning. Just got the call from Calgary. The appointment is set for this Thursday morning at 7:45am. So we will be heading up there tomorrow after Sheena's vet appointment for her spay incontence meds at 3pm. So long day tomorrow. Got a Living Well appointment for my high glucose at 9am, see the nutritionist from Best Babies here at the house at 11am, have a doctors appointment at 1pm, have to dropped the referal note to Calgary off at the AISH office right after that and then at 3pm Sheena sees her vet. Then off to Calgary. Luckily AISH is covering the gas and food costs and would have covered a hotel but because of some very awsome friends we can bring all the dogs with us and stay with them so no need of a pet sitter at the last moment. I am nervous and stressed for obvious reasons but at least we have something to plan for and do now to get answers. That is our update now.

[nancy2394]

I'm on vacation for the rest of this week, but i'll try to swing by work tonight and snag some info for you. It's not impossible to actually breastfeed a child with a cleft lip or palate. Sometimes, they actually do better on the breast because the breast tissue helps enable them to create a suction.