Last year at about this time we were faced with the possibility of a feeding tube. This is a tube placed into the stomach that you can give supplements through. A big part of CF if nutrition. Most CFers are pancreatic insufficient.This means their body doesn't have the enzymes needed to digest food. So they don't absorb the food they eat. This means they don't gain weight easily. We give enzymes with most of the food Cade eats. But even that only gets him about 75% absorption. Right now he is taking 5 capsules with every meal and 3-4 with snacks. He usually eats 3 meals and 2 snacks daily. A healthy weight is very important. Lung function and weight are very closely linked. So the healthier the weight, the better the lung function.
So back to this feeding tube. As determined as his team was that he needed this tube to help gain weight, I was just as determined he wasn't going to get one. We didn't want one more thing in Cade's life that made him different. Besides, he really likes to eat! So we started searching for ways to fatten up his food. We started him on a supplement similar to Pediasure. We add fat and protein to everything we can. Think macaroni and cheese with heavy cream and butter. Yummy! We also have a special powder we add to soft foods that is basically calories in a can.We've also discovered Hershey's chocolate Milkshakes. I am slightly jealous of the foods my kid gets to eat!
Well, after a year of fattening this baby up, we are finally seeing results. This little love has some has some thighs!!! Even got some chunky cheeks! I am one excited momma! We went back to clinic today. They were pretty excited too! Cade is in the 83% for his height:weight ratio. They prefer CFers to be above 50%. I've stressed alot over Cade's weight. I can definitely say it's been worth it. There's still a long road ahead, but at least it's starting to look a little smoother!
This comment has been removed by the author.
ReplyDeleteYay for 83%!!!! I knew those cheeks were getting chunky :)
ReplyDeleteCongratulations to you on getting Cade to gain all that weight! I commend you on all of your hard work. I can relate to all the stress, time and hard work it takes with the weight gain struggle. My 2 year old daughter has CF and constantly struggles with her weight. A few months ago, we were told about the likelihood of a feeding tube in her near future as well. Your success and determination gives me great hope and inspiration that maybe we too can avoid a feeding tube. Thanks for sharing your story, I'm glad I came across your blog and will enjoy following Cade's journey with CF.
ReplyDeleteThank you Bridget. I hope you will be able to avoid one as well. It's not that I think they are a bad thing. I just didn't want to give Cade the opportunity to become dependent on one. Good Luck!
ReplyDeleteWe are in the same boat. We are in a constant sprint away from that feeding tube. Praise the Lord that we have been able to run fast enough so far (knowing that it is constantly chasing us). Our daughter, Rachel, weighed in over 70%!! Makes a mama smile!! The work is constant to get our little CFers to eat, but so rewarding. Way to go keeping up that weight. It is a blessing!
ReplyDeleteHave a great day. And enjoy the results of your hard work in your sweet little ones chubby face. =)
heleadsus.wordpress.com