Newsletter

I want to thank everyone for your prayers during and following Savannah's alveolar bone graft surgery. I apologize that I don't always get to my newsletters each month. Savannah is doing very well. She's still "recovering," although we've been cleared to allow her to gradually get back into physical activities. I know that's been a tremendous relief even just to let her run outside again! She missed nearly 3 months of P.E. and recess at school, and what a trooper for staying in her classroom while all of her friends got to go out and play.

We won't find out how successful the graft has been for another 3 months or so, when they do an x-ray. It takes 6 months before they can see whether there is any new bone growth, and we're praying that everything comes along well so she can get her braces on to start straightening out those front teeth.

I've gone in the last couple of months to be a guest speaker at the University of Nebraska-Lincoln and University of Nebraska-Kearney for the undergraduate/graduate speech-language pathology programs. This is always a great opportunity to help students learn as much as they can about the emotional and physical aspects surrounding cleft lip/palate, and for me to provide much-needed training in the area of early feeding delivery methods. It also gives Savannah the opportunity to help answer questions as well, and makes her feel very important to be the topic of discussion!

I'm going to focus this newsletter on feeding, since it's a topic that I visit often as new parents visit with me about how feeding is coming along. As many of you know, when Savannah was first born, nobody really knew much of anything about how to feed her. In fact, breastfeeding was pushed from the day she was born, with 0% success. We went home with a Mead Johnson Bottle and I had requested a Haberman, but nobody was able to teach me how to use either one, and each person felt they knew a little more than the person before them...so the information I did receive was very inconsistent. As a result, I have a passion for this topic! I am a firm believer that NO BABY should ever have to struggle with getting enough nutrition and that parents should not have to struggle in this area.

I am a proponent of pumping breastmilk, then using a feeding system that is both effective and efficient for the baby. Feedings should last no longer than 30 minutes, and the baby should be consuming an amount consistent with their gestational age. If babies are consuming less than normal for their age or the feedings are taking longer than 30 minutes, chances are they are getting fatigued before they're getting full. This is the time to look at changing your feeding delivery method, or seeking out help from a professional with experience in feeding babies with cleft palate. As always, I provide free help with feeding babies with cleft palate. I have a significant amount of experience in this area, and am happy to help out with anyone who needs it.

There are options for feeding babies born with a cleft lip and palate, and there is no one feeding system that is successful for all babies. There are things to consider when choosing a feeding system! Not every hospital has access to every available nipple system out there, so many parents from rural hospitals in particular, go home with limited options and often very limited information.

One of my favorite nipples to use for babies with a cleft palate is the Haberman Feeder made by Medela. It's now known as the Special Needs Feeder. It's a one-way valve system with an adjustable rate built into the nipple. All the baby needs to do is to be able to bite down and compress the nipple to deliver milk. You can adjust the rate of the delivery by turning the nipple to the appropriate rate. There are 3 lines on the nipple barrel: the shortest being OFF, the medium is SLOW and the long one is FAST. In order to select the proper rate, you line up the appropriate line with the baby's nose. You adjust the rate by turning the nipple anywhere between OFF and FAST until you get a rate that the baby handles without flooding. I like this system, because it's a DEMAND system. The baby controls the feeding by continuing to compress the nipple...and can stop at any point. The flow rate is easily adjusted, and the nipple lasts nearly 3 months when cared for properly.

There is also a Mini-Special Needs Feeder, but this one is typically only indicated for babies born prematurely or sometimes with babies with Pierre-Robin Sequence, who have an underdeveloped lower jaw.

The Special Needs Nurser is a Medela product, and will fit onto any Medela bottle. Because the threads are straight and not angled, it will fit onto any type of bottle with the same thread design. Gerber has a straight thread design, so it makes an excellent bottle to switch to once intake exceeds 4 ounces. Replacement parts are available for this product, and when you know where to shop...it makes it much easier. If you're looking for parts or a replacement, feel free to contact me so I can get you information about where to get your products. The only downside that I feel makes this nipple less attractive is the price. The entire system costs around $24, and just the nipple alone is at least $9. However, I like this system because it's very effective and because it significanty reduces the amount of air babies swallow during feedings.

The Pigeon Cleft Palate Nurser is another one-way valve system made by Children's Medical Ventures. It's also adjustable in flow rate by tightening or loosening the collar...but the rate adjustment isn't significant like it is on the Special Needs nipple. This system has a Y-cut nipple and a soft side feature. When you place the soft side of the nipple down, it allows the baby to effectively compress the nipple by using the tongue to "milk" the nipple. As milk is removed from the nipple, milk behind the valve automatically flows in to replace it. This nipple is a good choice for babies with a very wide palatal cleft. As babies get older, some parents have even removed the valve altogether to increase the rate and decrease on the amount of nipple collapse. This nipple typically only lasts around 3 weeks before it needs to be replaced, and has to be replaced even more often as teething begins. This nipple is more readily available online, but is not available in all rural hospitals. Again, this is one that not everyone is trained on how to use, so it's best to speak with an experienced professional or another parent who has used this system successfully. The cost is less for this system, but the rate of replacement is typically higher...so it really works out to be about the same in the end.

The Mead Johnson Cleft Palate Nurser has been one of the most commonly recommended systems in the past, but as more and more hospitals are becoming educated on other feeding delivery methods, it's not always the one recommended. This system has an x-cut nipple, which allows milk to be squeezed in while the baby is compressing the nipple. The bottle that comes with the nipple is a very pliable plastic, which is designed to be squeezed, and effectively "force" milk in as the baby is eating. The downside to this system is that as milk is squeezed in, so is air...and reflux can be a problem when too much air is taken in. This is an inexpensive system that is readily available both through hospitals and directly through Mead Johnson and other companies that offer it online. It typically is sold by the case. Oftentimes the x-cut is too small to allow a sufficient rate of milk, so inverting the nipple and enlarging it carefully with an Exact-o knife is the easiest way to increase the rate. However, it's easy to over-cut and ruin a nipple. Just ask me...I've done it numerous times!!

Since these three systems are the most effective for babies born with a cleft palate, they are the ones I most commonly recommend. The more complex the feeding directions, the more frustration parents typically feel. That's why finding a system that is simple and effective is so important. Parents feel a lot of anxiety at the beginning! Not only because of the shock of the cleft itself, but from a feeling of helplessness, guilt, feeling uninformed and unprepared. Any way to reduce anxiety is going to have a great impact on both parents and new babies. We want these babies gaining weight from the very beginning, and establishing a good method for feeding is critical!

I didn't leave the hospital until 8:30 at NIGHT, because I was afraid to go home. I didn't know how to feed my baby, and was extremely frightened to take Savannah home to be on our own! I think this is a tragedy, and if I can make a difference for even one person...then it validates the work I put into this group.

I want to thank everyone who has donated gently-used nipples to the group when you're done with them. You never know who you're going to be able to help, just by donating your specialty nipples to the FOCUS group! When supplies get low, I buy more to have on hand. However, because I don't charge a fee for parents who are receiving free consultations for the cost of the nipple, we are always in need of more. I ask you to prayerfully consider donating to help keep our Pantry of nipples full, or even sending a monetary contribution to help cover the costs of this free service. All donations receive a receipt for you to be able to use as a tax-deductible donation.