Nathan enjoying the beach!
The Story of Fred
by Heather Meyer
by Heather Meyer
Right now, our family consists of my husband, our two daughters, me, a dog, two frogs...and Fred. We couldn't survive without Fred. So are you wondering who Fred is?
He is my younger daughter's backpack. What is so special about a backpack? Well, Fred carries around Lindsey's food and her feeding pump for her so that she can get her nutrition through her feeding tube. She is hooked up to feeds almost 24 hours per day, and Fred gives her the freedom to move around and play just like any other kid her age.
Growing to Accept and Love the G-Tube
by Amy Eaton
To all the moms and dads out there who have been told their child needs a G-tube, I wanted to share our story with you. We lived a total of eight months in the PICU because of our son's heart condition. I have so many memories from it. Scary times, happy times, surgeries, first smiles and first hugs. I'm sure many of you can relate to that. Life was a roller coaster of events! But taking a step back, I want to share the experience of one of my son's very first surgeries: his G-tube surgery.
by Amy Eaton
To all the moms and dads out there who have been told their child needs a G-tube, I wanted to share our story with you. We lived a total of eight months in the PICU because of our son's heart condition. I have so many memories from it. Scary times, happy times, surgeries, first smiles and first hugs. I'm sure many of you can relate to that. Life was a roller coaster of events! But taking a step back, I want to share the experience of one of my son's very first surgeries: his G-tube surgery.
My Irrational Fear of Feeding Pumps Explained
by Rachel Nichols
I have an irrational fear of feeding pumps, which has perplexed many of my fellow tubie mommas. This fear is fueled by the horror stories I have heard from those very parents! While support groups such as Feeding Tube Awareness and Babies and Children with a Feeding Tube have given me unlimited support and advice, they have also filled my head with many possible, but highly exaggerated, scenarios in which the pump is the key culprit for disarray. Before I get into my illogical reasoning, let me tell you about my son Spencer.
by Rachel Nichols
I have an irrational fear of feeding pumps, which has perplexed many of my fellow tubie mommas. This fear is fueled by the horror stories I have heard from those very parents! While support groups such as Feeding Tube Awareness and Babies and Children with a Feeding Tube have given me unlimited support and advice, they have also filled my head with many possible, but highly exaggerated, scenarios in which the pump is the key culprit for disarray. Before I get into my illogical reasoning, let me tell you about my son Spencer.
Focus: Feeding Tubes
Feeding Tube Product Roundup
by Traci Nagy
The first product that comes to mind when I think feeding tubes is MyButtonBuddies. It is the "Kleenex" of G-tube pads. There are lots of G-tube pads out there and some mommas have taken to making their own. But MyButtonBuddies has users in 48 states and 12 countries and are preferred by several major hospitals.
by Michelle Doty
My husband and I were given the choice of whether or not to tube feed our daughter. Hers was not a clear-cut case of requiring a feeding tube for survival. However, feeding had been an issue since the moment she was born, and had become the central focus of our lives.
A Journey through an Intensive Feeding Tube Wean
by Daria Mochan
In a few days I will stop feeding my child.
I will do it slowly, dropping meals over a week's time. I will not give in and feed her the way she wants to be fed. She will be upset. She will cry. I will be upset and cry. Our world will be turned upside-down.
In the end, I hope she eats.
(Read More)by Daria Mochan
In a few days I will stop feeding my child.
I will do it slowly, dropping meals over a week's time. I will not give in and feed her the way she wants to be fed. She will be upset. She will cry. I will be upset and cry. Our world will be turned upside-down.
In the end, I hope she eats.
by Courey Elliot
Not quite a year ago we were faced with the need for a separate J-tube placement for direct feeds into the small intestine for my son. A jejunostomy was something I had staunchly opposed for the previous six months, so when a scan finally showed that there was an anatomical reason for the complications he had with the GJ-tube, we were told that it was no longer an option but a need. I felt defeated and laid my head down on the fluoroscopy table right there in interventional radiology and cried. I was absolutely terrified of doing a separate J-tube, and now, only a week later, he would have to have that and a revision of this G-tube. It was the stuff my nightmares were made of.
Specialty Article
Update on Fundoplications and Feeding Tubes
Children who receive feeding tubes sometimes also receive a procedure called a fundoplication, in which the stomach is partially or wholly wrapped around the lower esophageal sphincter to prevent reflux. Over time, opinions have changed within the medical field as to when this procedure should be performed and on which children. In many cases, who gets the procedure and who doesn't very well depends on where in the country you live, whether your child receives care at a teaching hospital, and the surgeon's personal opinions.
In past articles, we have taken a look at questions to ask before getting a fundoplication, the problem of retching after a fundoplication, and fundoplications in children with neurological impairment. In this piece, we will answer some questions based on the most current available research.
Feature Articles
by Shannon Gonsalves
When Rhiannon Merritt-Rubadue's daughter was a toddler with a feeding tube, she could not find any books featuring children with tubes. To fill this void, she created the My Tubey storybook series, intended to help children with feeding tubes feel not so alone. As she states, her daughter, "was beginning to notice that she had a 'tubey,' and mom, dad, and big brother didn't. Nor did grandma, grandpa, cousins, or friends." Currently she is in the process of creating a series describing all the various stages of tube feeding, which in her words, "gives children with feeding tubes a character and story they can relate to."
Whether your child is on bolus feeds, partial oral feeds, a blended diet, continuous feeds, or a combination of these, it can be really difficult to keep track of what he or she has consumed over the course of the day. To help solve this problem, Karen Prante, mom to Nathan, began to develop what has now become Nathan's Chart, a free online meal-planning application for tube feeding. This application allows you to plan feedings in advance or as they are given throughout the day to ensure that your child meets his daily caloric amount or tube feeding volume.