Monday, April 14, 2008

CLEFT parents...please HELP!

Ok....I don't mean to be dramatic here by the title of this post...but I am looking for help! It's Ellie's mom for a bit. we are NOT feeding Reid solids at this time with the exception of prunes each night. Ahhhh...yes....lovely prunes! We are having luck with them and little Reid's digestive system working hand in hand. So, we are pleased! We will actually begin true solids at 6 months of age...which as I look at my calendar is right around the corner. Can't believe that! So, on to my questions....

With our solid feeding of prunes, we began by feeding with the NAM in place. It worked ok. It seemed to prevent Reid from eating a lot. He got frustrated easily because I think he wanted to eat more, but the spoon would hit the NAM or he couldn't get a big enough bite, and be frustrated, and call it quits. It was a TOTAL mess...but he did well with it overall.

The last few times that I have fed him, I have actually taken the NAM out. Ahhh, yes. Open palate = lots of prunes out the nose. He handles it well at the start. Then, all of a sudden, this mass of prune gunk will seep out of his nostril. Usually on one side only. But, there are those instances where both sides will join forces together! here are my questions. It seems like they BURN him when coming out the nose. Yes???? He gives up immediately after the food comes out the nose. I am sure it hurts. He doesn't want me picking, touching, wiping, dabbing (you get the picture) anywhere near his nose when this happens. He seems to eat more with the NAM out, though. I also think that it is really working his tongue and he is getting the hang of pushing his foood back beyond the palate. He makes WAY LESS of a mess with the NAM out. I thought it would be opposite...but nope! So, suggestions you have. Foods to stay away from???? Burning foods? Techniques that worked for you???? Overall comments???? Since we are starting a real food menu soon with solids, I would LOVE your advice. I think he is going to LOVE to eat. He is already scoping out what we are eating and grabbing for it. I know he is going to love it....but one thing at a time here. Baby food advice well appreciated!!! Thanks for your help! Love to you all!

By the way....isn't that lip looking good? 6 weeks until surgery!


Darcy said...

I have no experience at all with the NAM, so I can't really help you out with the feeding solids with the NAM.

I think the sensation that Reid may be experiencing when food comes out his nose is that it is different, and the membranes in our noses can be sensitive. I'm wondering if it might make a difference when a new food is introduced, something like applesauce??

Sorry, I'm not much of help am I?? Hang in there. {{{HUGS}}}

Mary said...

I am going through the same thing. Ian did great with solids with the NAM, but he doesn't have that choice anymore. We tried bananas, peaches, and prunes since surgery, all of which have caused the problem you're talking about. The bananas seemed to do better, but not by much. However, he has started drinking some apple juice and does not seem to have the same issue as the food. So, maybe it's the fact that the food is so thick...

I wish I did, but I really have no advice for you. I'm right there with you and if I come across anything that helps, I'll let you know.

Wendy said...

Rylan didn't wear a NAM either. He wore a palatal obturator from the time he was a month old until his palate surgery two days ago. It basically is a prosthesis for his palate. He wore it at all times. It did not totally prevent the food from going through his nose. It still managed to find its way up there even when he started table foods. I did find that thicker foods seemed to work better and advanced pretty quickly to the stage 2 foods since the stage 1 foods are so runny. They didn't totally solve the problem, but I think it helped. Maybe it depends on the food too. I haven't fed Rylan prunes. Most of the foods that he ate didn't seem to bother him when they came through the nose. It just grossed everyone around him out! Unfortunately, I don't think that problem totally disappears with palate surgery, according to his surgeon. There is still a slight opening until they repair the dental arch. Oh fun! I'm not sure I've helped any but try thicker foods and a variety. Maybe it's just the prunes!

Fowler family said...

Okay, I totally had this issue with both of my boys. It usually would get instigated with a sneeze and then the food would come out the nose and then the screaming "I'm in pain!" crying would start and mealtime would be over.

I noticed that the foods with absorbic acid added to them (fruits) often seemed to cause this a lot more often then the ones without (veggies). Just look on the label and see if any absorbic acid is added, and if so, try to keep him off it for a week or so.

I found that mashed up bananas (not storebought) worked well and didn't cause discomfort as well as 100% applesauce with no absorbic acid.

Good luck! This stage can be so hard.

One time I had a mom that told me when the food comes out the nose- it bothers the mom more than the kid himself. Which is kinda true.

Hello, and welcome to my page! I am so glad you are here. I am going to try and show you the average life of a 5 year old from my perspective. Mommy and Daddy will help me along the way if I get stuck.

Let me first introduce my family to you. I am Ellie. I am a 6 year old. I live in Ohio with my Mommy, Daddy, little brother Reid, and dog, Sophie. My mommy is a teacher. She teaches nine and ten year olds and loves it. She has been teaching for twelve years. My daddy works with computers. He works hard everyday.

We all love spending time together. I have wonderful grandparents and a terrific extended family. I am a very lucky girl. Thank you for visiting my page. Write to me any time. I love getting mail!!!

Many blessing to you all.

Little Ski (Ellie)

Mommy and me having cuddle time at Hocking Hills.

Told ya, my hair can be wild! And you thought I was kidding!

Hmmm, Blue's Brother's perhaps?