NOTE

The information and opinions on this blog come from parents, and the blog is not associated with Primary Children´s Medical Center or any other institution.

Welcome!

This site is specifically for parents of kids with clefts being treated at Primary Children's Medical Center in Salt Lake City, Utah, but I hope that there will be information that is helpful to all parents of kids with clefts. If you are just starting to learn about clefts, I would suggest starting with the "General Information" topic and going from there. To find information on a specific doctor or topic, click on one of the links on the right. You can also search the blog using the box below the topic list. If you have information or experiences to share, please leave comments or contact me to do a guest post at kidswithcleftsblog@gmail.com. Thanks for visiting!

Sunday, January 10, 2010

How do I soothe my baby after surgery without a binky?

Here is a conversation from the Kids with Clefts group that is typical of one that pops up periodically:

Question:
My [baby] is going to have his first lip surgery in two weeks and they said no binkies after that. I'm wondering how people have dealt with this. It seems like such a traumatic time for a child, yet you can't comfort them like they were previously used to. Does anybody have any suggestions? All of my other children have always used binkies or thumbs so I'm at a loss.

Answers from Parents:

"My son wanted a binky after his first surgery so bad, but it hurt him when he even tried. We had a special blanket for him that he cuddles up with that soothes him now that worked the same - but really good luck! If you can get him started on a soft blankie or something else that would comfort him before the surgery, it won't be nearly so traumatic after to just take the binky away."

"We went through the same issue with our son at 4 months--the way he always went to sleep was with a binkie snuggled right into someone's chest. . obviously he couldn't do that after surgery. We started him getting used to a snuggly bear before surgery that we always gave him to help him calm down and started using the binkie less--trying to comfort with rocking, etc.. He couldn't chew or suck on the bear, but I think just having the comfort object helped him through.

"Now, we're 1 month out from the surgery and our little boy doesn't want the binkie now that he can have it. . .he loves that bear, though :)"

"My reply is similar to he others who replied to our post. We found something to try to replace the binki right before surgery. With [our baby] it was a special blankie (that I took with us to the hospital) and I would sing to him to soothe him. It was hard the first few days without the binki. I would let him have his Bottle in his mouth just to suck on someimes. But he really didn't want it much because of the pain in his mouth.

"Now, he is 2 months post-op and he can have a binki. At first he didn't want it, but now he loves it again and can even keep it in his mouth! (which he couldn't do before). I hope this helps. Good luck with the surgery!"

"It is really hard for a little while to get them to be able to relax and soothe themselves without something in their mouth. I just held [my baby] a lot, sang to her, and loved her. Obviously it is very hard on you too, and you won't get a lot of sleep but at the end of a month, it seems to get much better. The process is just hard, for both you and your baby, you just have to keep loving them and fight through with them. They are resilient and will figure something else out, it just takes time. Hang in there!!!"

Pacifiers

Facing a new baby without the help of a binkie can be a daunting thought, particularly, it seems, for those who have relied on them with previous babies (I'm only on my first, so I wouldn't know, but I had the feeling that it wasn't quite so bad since I didn't know what I was missing...). It seems like a lot of parents have questions right away about pacifiers, including:

1. Will my baby be able to use a pacifier at all?
2. Can my baby have a pacifier after surgery?
3. What pacifiers work best for cleft babies?

I'll share what I know, then include a few other parent comments on the topic.

1. Will my baby be able to use a pacifier?

From my experience, this is another "it depends" answer (fully unsatisfying, I know). Babies with clefts generally don't have good suction or lip closure, so they have trouble keeping a pacifier in without help. However, after the lip repair, babies can often take a pacifier and keep it in reasonable well (though you may have to try a few different kinds to find what works best for your little one). Lots of babies with clefts love the binkie.

2. Can my baby have a pacifier after surgery?

Again, it depends on your doctor and on which surgery. Here is my experience:

Dr. Morales was our surgeon, and after the first surgery to put in the prosthesis, he said he didn't have a problem with us using the pacifier occasionally. We weren't sure if it would be allowed, so we tried to use it only if we were out in public where we needed our little guy to stay quiet (and, to be honest, to cover up his cleft if I wasn't up to having people stare) in the hopes that he wouldn't get hooked on it. So I'm not sure how Dr. Morales would feel about heavy usage just after surgery, but it wasn't out of the question at any rate.

After the lip repair, we weren't allowed to use the pacifier for about a month (with good reason; I'd have been afraid to use it!). However, at the one month check-up, Dr. Morales actually encouraged using a pacifier because he said the plastic phlange on the pacifier would massage the scars and help stretch them out. So after that we did some binkie shopping and our little guy was hooked until his next surgery.

After the soft palate repair I think we could have gone back to the pacifier after a short time, but our little man wanted nothing to do with it. I tried lots of times over the ensuing months, but he wouldn't have it. And I've heard of other kids that just didn't want anything in their mouth after surgeries.

3. What pacifiers work best?

As with most baby products, this differs with each baby. Here are some things that I have heard/found:
  • Some people like the Soothie pacifiers because they are all one piece, which helps some kids get more suction on them. I found them impossible to keep in, and friend told me they were designed so that babies can't keep them in. Confusing! Since these are the ones they usually give out at hospitals, you will probably end up with at least one free one that you can try out on your baby
  • Others like "Wubbanubs," which is basically a soothie pacifier sewn onto a little stuffed animal so that the baby can hold it in more easily. Here is a link to the site (though they would be really easy to make, and much cheaper!). You could use this idea with other pacifier brands, too.
  • Someone suggested getting pacifiers for older babies, since they are bigger and thus easier to hold in. My little guy didn't go for it (too much of a mouthful?) but I know others have.
  • What worked for me were the Playtex orthodontic pacifiers with the curvy neck. Since the neck was long, the baby could close his lips around it and hold it in. He got fairly good at it after a while.
Any other suggestions or thoughts? I'll be glad to add them!