New and confused!

[Rfilippone]

Hello- my name is Robin and I recently gave birth a beautiful baby boy- he is 12 weeks old and shortly after we returned home from the hospital we found out that he has a cleft palate in his soft palate- because it wasn't detected in the hospital and because my pediatrician is not really educated on the subject- we really have so many questions- we met with a plastic surgeon but it seems that he knows only how to fix the problem- my questions are regarding what to do BEFORE the palate is fixed- I hope that someone can help me here. Here are some of my questions/comments-
Joseph is extremely colic- I cant put him down - he cries all the time unless I am holding him- is this because he is getting too much air when he is feeding? By the way- he has been nursed with the exception of one night Dr. Brown bottle that his Daddy gives him before bedtime(what that means!) Anyway- what can I do about this and is there a possibility that he is truly gassy or just a little spoiled?
Secondly- what about solids- i tried to feed him cereal and he just cried- he didn't know how to swallow it.
Thirdly, is it normal that he only drinks 3 ounces at the most?
I need help! We live in NJ about 40 miles west of the NYC- is there a place I can get answers?
Thanks in advance!
Robin

[chicka-monkey]

Hello,

I think you should see a plastic surgeon that has a cleft team. They usually have one or two in each city. They specialize in children with cleft. They have a team of people that can answer your questions and tell you what you can expect. A speech therapist can also help with eating problems, which would also be on a cleft team.

Does it take Joseph a long time to suck the formula down? If so, he may need a special bottle that most children with cleft palates need. When a child has a cleft palate, it is difficult for them to suck, so he may be getting all kinds of air. Two out of my three children had colic. I had to change their formula to a less harsher one for a few months until they grew out of it. Joseph will grow out of his colic about 3-4 months of age. I would also try the mycelin drops (spelling) that they have especially for babies with gas problems.

Why do you feel you have to feed him solid food already? It doesn't sound like he is ready for solid foods. I didn't seriously feed Skylar solid foods until about 12 months of age, due to her cleft palate. She has done great, now that she has the repair. She is 13 1/2 months old now.

Joseph sounds like he may like the comfort of your arms & may be gassy also! With all three of my children, I had a hard time setting them down. I didn't get anything done around home for the first year. Even now as I am typing Skylar keeps trying to sit on my lap and type with me.


You definately need to find a cleft team as soon as possible! They will definately help you!

[Mum from down under]

Hi Robin welcome to the group I agree you need to find a cleft team to help you & explain everything to you. We found the haberman Feeder the best to feed our little boy stops them from taking in to much air & help reduce colic. We didn't introduce solids until he was 5 1/2 months old over here they do not recommend solids until that age. I wish you luck & hope you can get in contact with a cleft team to answer you questions.

[pkett2]

Robin,
Congrats on your baby!
I agree with the reply about feeding the baby solids. I don't feed mine until 6 months, 4 months at the earliest. The sooner you feed them, the greater risk they have with food allergies. Also, when you first start feeding them solids, they don't know how to sallow. It takes a good week or two before they get the hang of it. They pretty much just get it on their face.
My second daughter had colic. You can never spoil a baby by holding them too much. I remember she was on my hip turned out for the first 3 months. Just relax, they will grow out of it. Don't worry about keeping your house clean. You have plenty of time later.

[Rfilippone]

Thank you for your replies- I am meeting with the director of the cleft here in North Jersey (Paterson) anyway- when I referred to solids- I meant cereal and then baby food- how and when did you feed yoour children? I switched his nightly bottle to Nutramigen and he is now eating 3 ounces- it just doesnt seem enough?

[chicka-monkey]

We are also talking about that kind of solids like baby cereal and baby jar food. You can also try Nestle Good Start. That is really easy on the stomache and not as expensive as Nutramigen. As I said, I didn't feed Skylar baby cereal and baby jar food until 12 months. We actually just skipped the baby food and went to regular food. As everyone else said you shouldn't feed your baby anything but formula until at LEAST 4-6 months, especially if he already is going to have a feeding problem, due to the cleft.

Babies with cleft also are proned to ear infections which are explained at a cleft team meeting. They will probably want to put ear tubes in. Do you think Joseph may have earaches? You can ask your pediatrician about how much Joseph should be eating by now.

You didn't answer my previous question of; Does it take a long time for Joseph to eat his food? Do you think he has a problem with sucking? It is hard for children with clefts to get a suction. He may be getting tired out before he is eating the formula he needs, due to working hard on sucking.

Good luck. I'm glad you are meeting with someone.

[Daddy's butterfly]

Congratulations on the birth of your son! I didn't start my daughter on solids (cereal) until 6 months. We used a special bottle called a Mead Johnson --the makers of enfamil make it. I asked my pediatrician about it and they were able to provide me with samples. Its a really good bottle-you can squeeze the bottle and help your little one get more formula down without them getting fatigued. I have extra bottles if your interested. I could always mail a couple to you , so you can give it a try. On average, Gabriella would eat about 3-4 oz at a time. I don't think theres anything wrong with some extra TLC-- so don't be afraid to hold your little guy frequently. FYI- I live in NY and Gabriella just had her soft palate repaired in Albany, NY about 2 weeks ago. Hope this helps. Happy Holidays!
Kristina

[heather]

Congratulations on your baby boy. Three ounces isn't bad. What you need to focus on is whether or not the diapers are being soaked and how often they need to be changed. As long as he is gaining weight and staying hydrated, a baby will only eat what makes them feel full. I don't think that it is too early for cereal. Not every baby is the same. If your baby needs more substance, then give it to him. My son is six weeks old and he gets just a little bit of cereal in every bottle. This is because of his reflux. It really helps. Try putting the cereal in a bottle. I'm assuming that since you are breast feeding he is able to suck a bottle. If you think that the formula is too much for him, try Alimentum. It is very easy on a baby's stomach and digestive tract. It's also a formula designed for colic. It's expensive, but worth it. My first child had colic. He however did not stay quiet at all, even when he was being held. Try warm baths. That always helped when I couldn't take the crying anymore. I know it is said that you can't spoil a baby, but that is just something grandmas say so that they can hold their grand babies as much as they want. It's totally fine for him to cry. Let him cry himself to sleep. It's not going to hurt him at all. If he knows that you will pick him up every time he will continue to do it. If you do think that gas is the problem, he may be getting too much air. Burp him more often. My son uses the pigeon nipples. This allows him to feed himself so that I don't have to squeeze the formula into his mouth. And relax...cleft babies take a lot of attention. My son was born with a unilateral cleft lip and a complete bilateral cleft palate. He's taking up all of my time. If you need any other questions answered, feel free to email me. I would love to help. Heather