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Feeding your Child

This is one of the most challenging issues when it comes to parenting a child with PRS. The baby has to learn to breathe, eat and swallow at the same time. Do not get discouraged. Your baby will have a tendency to wear out during feedings because they use so much energy eating.

It is important for a baby to actively suckle. Suckling can be a form of comfort for the baby. It also keeps the tongue and other mouth muscles active. This can be a wonderful time of bonding between your baby and you, the parents. Suckling will help when the baby begins to chew and speak, as well.  It will most likely be a trial and error experience when trying to find pacifiers that will work for your baby. 

You will establish a routine with your baby with regard to feedings. You need to work with the baby to keep the feeding time as short as possible. Many times babies burn up the calories they so desperately need by working so hard at feedings. Again, this might get discouraging, but hang in there and talk with others who have been through this. You will need that support from someone who has experienced the same thing. You are not alone with these struggles.

If you formula feed, your baby's doctor will work with you on selecting the best formula for your child. Sometimes, they recommend a formula with a higher caloric content to help the baby gain weight. They might even recommend or prescribe a supplement to be added to the formula.

Although breastfeeding may not be an option, you may still use breast milk with the aid of a breast pump. Contact your local La Leche League or lactation consultant for available supplies and information. You may increase the caloric value of breast milk with the addition of powdered formula if needed, discuss this with your pediatrician. Formula may also be mixed at different concentrations in order to increase the calories per ounce. Consult your physician or nutritionist for the proper water: formula ratio. Some parents say their babies feed better when the formula/breast milk is warmer.

Reflux is a common issue with PRS children, usually showing up at about 2-3 months. Some signs to be aware of: excessive fussiness after burping, arching of the back and turning away from the bottle. Your physician may prescribe medication to help eliminate or reduce the amount of reflux.

Taking regular breaks to burp may be necessary as your baby will likely swallow a lot of air while learning to feed. Stroking the baby under the chin while feeding will sometimes help the feeding progress.

Most doctors do not want the baby to use a regular bottle immediately after the cleft palate repair. Some suggest the syringe type feeders, some suggest cups and some will allow the bottles previously used. It is very important you discuss these things with your child's plastic surgeon. You need to know their rules and guidelines before the surgery, so you will be prepared. Not all surgeons are the same and once again, there is no right or wrong. Be sure you follow their instructions and consult them with any concerns or questions you have.

Most parents agree that having the baby in a well supported position will be beneficial. Nasal regurgitation is fairly common with babies. Allow time for the baby to clear their airway. If the baby is experiencing regurgitation on a regular basis, consult with your pediatrician.

Some cleft palate teams recommend an obturator to aid the feedings. This is an appliance which is fitted to your baby's mouth and covers the cleft palate. Teams vary in their approach of using the obturator. If the family lives a considerable distance away from the team or the specialist who would be fitting the obturator, then it may not be an option.

None of these suggestions are either right or wrong. Everything will depend on the baby and your approach to feedings. Most likely, you will have to experiment with several bottles and nipples before reaching the best combination. Request a sample from the hospital before you invest in a quantity of bottles.

We have a section of our site that focuses on bottles and another section on sippy cups.  Please review them to get the tips our parents have compiled, based on their experiences.  The links can be found at the left.

Sometimes, after you have exhausted all resources for bottles and nipples, it is necessary for the child to have an NG tube or a g-tube. An NG tube is usually a short term solution. A tube is inserted up the nose, down the esophagus and into the stomach. Placement is checked at each feeding with a syringe of air and stethoscope, and then gravity assisted feeding is used. The tube may be left in for up to 30 days at a time. Our moms recommend using saline after each NG feeding to clean out the nose.

The g-tube will be inserted surgically in their stomach and will allow you to "tube feed" any milk that your baby does not take orally.

We suggest you continue to try and bottle feed as much as the baby will take and feed the rest through either tube. This gets the baby used to oral stimulation and keeps the mouth muscles moving.

These are only suggestions and every child is different. Most of the time you will find experimenting with different techniques and patience are the two best things when it comes to feeding. Make sure you discuss any concerns about the formula and feedings with your baby's doctor. They are in the best position to help you and your baby experience the best possible approach to feedings.
 

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