Do you know a child with a feeding tube? Are you curious about feeding tubes? Are you new to the tubie community? If you answered “yes” to any of these questions, then, My Belly Has Two Buttons: A Tubie Story by Meikele Lee is the book for you. Follow Nico as he tells you what makes him special and why he loves his button. My Belly has Two Buttons is about a little boy named Nico, who tells what makes him special…his 2nd button (Feeding Tube) and all the things it does for him.
This guest post is written by a young mom of three children. Their youngest child has a feeding tube and hence some call such a person a “tubie”. Meikele Lee wants all the tubies out there and their siblings and friends to know more about the life saving use of feeding tubes some need to use each and every day in their homes. My Belly Has Two Buttons: A Tubie Story by Meikele Lee can be helpful to a young child who needs a feeding tube and as a resource to teach awareness and acceptance in schools and librairies.
An estimated 340,000 people living in the U.S. use feeding tubes in their homes. According to the Feeding Tube Awareness Foundation, 20 percent of the tube fed population are children 18 and younger. The 7th annual Feeding Tube Awareness Week® was celebrated worldwide February 6-10, 2017!
Tube feeding is often misunderstood, and parents can face negativity as a consequence. Hundreds of thousands of infants and children are able to live, grow, and thrive because of tube feeding. Books such as this one can make the lives of Tubie children and their families easier.
What is a Pediatric Feeding Disorder?
A pediatric feeding disorder is a condition in which a child does not eat enough to provide adequate nutrition, calories, or hydration. Behavior deficits or excesses that inhibit the intake may result in an infant or child being characterized as failure to thrive (FTT). FTT itself is characterized by being under the third percentile for weight.
Feeding problems are considered to be pediatric feeding disorders only if a child is safe to eat by mouth. If the child is experiencing physiological issues that make eating or drinking unsafe, the feeding problem is not considered to be a pediatric feeding disorder, but rather a medical issue.
Guest Post by Meikele Lee
My Belly Has Two Buttons: A Tubie Story
About My Belly Has Two Buttons: A Tubie Story
It’s about a 2 year old boy named Nico and he wants you to know what makes him special. His feeding tube! In his own words he tells you how cool it is because it keeps him healthy with the support of his parents and medical support, and some of the reasons why he has it. At the same time he wants you to know he is happy and can do most things boys his age do.
I wrote this when I heard from his medical team that his journey with the feeding tube was going to be a lot longer than anticipated. His skills were stalling and adaptability to new techniques for hydration not being accepted well because of oral aversions and his own lack of ability. I was sad, angry, and thinking why? Why him? Why did our family need to go through this? What would his future look like? Would he ever be like other kids?
I cried my tears; over what I thought was a loss, and the next night I worked I was unable to sleep because of a string of thoughts that wouldn’t stop. This continued into my graveyard shift and I started writing them down as they were kind of driving me crazy. The next eight hours between checking on clients I wrote what turned out to be a story about a boy like my son, Nicodemus “Nico”. A boy who was proud of his feeding tube, and hopeful for his future even if he still had it. And I realized that was because I wanted my son to feel this way, and I hoped all kids like him could find their “new normal” and be happy being a Tubie no matter how long.
My target age for the book was 1-5 years old children with Feeding tubes, but since launch we’ve seemed to reach a much broader age span. Parents of smaller and older Tubies are using it to educate schools, daycares, and friends or family members. This is up to and including Grandparents with feeding tubes who want their children and grand-children to understand why they have it in an easy way.
What Is Being Said About the Book:
This book is a very sweet and informative story about a 2 year old with a G tube. It is perfect for parents of children with feeding tubes to read to their children. My son had a big grin on his face when we read it together. It is also informative of some of the struggles a Tubie baby faces as well as some of the care involved in protecting the Mic-key button. It also serves as a reminder that children with G tubes can still have normalcy in their lives and participate in everyday childhood activities. This book was published in a timely manner for our family. I’m so thankful we have it to share with our son!
Great book! My tubie is only 6 months old but I have a two year old son and it has helped him understand about her g-tube.
ALSO think this would be a great book for teachers who have a tubie in their class!!
I have to say that I have read the book – This morning in fact. But I am also the Proud momma of the Author and the Illustrator. I love this book because it will make so many more people aware of the life of a child/adult who need these devises. It also brings us out of our comfort zones to accept everyone for who they are. I also love this book because it shows how strong mom’s and dad’s are and can be when they face life’s issues head on. Meikele and Nico are so strong and loving it seems so natural now. Read the book and share it with others it will impact your life. ~ Mom of the author and illustrator
Rebecca Robertson is our book illustrator and my youngest sister.
Excerpts from My Belly Has Two Buttons: A Tubie Story”
“My Mic-key is unique as you can see.
I’ve only met two kids with 2 belly buttons like me.”
The Doctor’s and Specialists aren’t sure why, my
body struggles to let me try.
When I attempt I cough and choke.
Because of this, I drink like a slow poke.
I am hooked up all night long, it helps me grow big
and strong. Slowly, I am learning to eat new foods
but like all 2-year-olds it depends on my moods.
When I play, I have to be careful my button doesn’t
snag. It’s held in my tummy by a water balloon, but
don’t worry, I can still play tag.
My protective belt keeps it safe, but it’s
hot and can make my skin chafe.
“My Belly Has Two Buttons” book trailer
Meikele Lee is the author of the children’s book “My Belly has two Buttons” and lives in Helena, Montana. She is a wife and mother to 3 amazing children, one of whom has a feeding tube. She has been in cosmetology for over 10 years, but became passionate about blogging when her youngest child’s oral aversions became life threatening. She used blogging to try and understand her son’s condition and how he can relate to others with or without a feeding tube, and to help educate the public about these life saving devices
Follow Meikele Lee:
Rebecca Robertson Born in Carthage, New York, now age 26 resides in Bellevue, WA with her Husband Adam of 6 years. Since a young age she has always had a flair for creativity and passion that led her to many artistic hobbies. Among these have been oil canvas’, specialty painting’s, henna and now illustration. She plans to continue along her very eclectic path and share her many talents in hopes to bring positivity, excitement, and genuine understanding of the unique and beautiful things in this world that can only be expressed through Art. Sister of author
Meikele Lee, author of the children’s book, My Belly Has Two Buttons, explains her experience as a mother of a child that has a feeding tube.
For more information on Eating/Swallowing Disorders
- Feeding Tube Awareness Foundation
- National Foundation of Swallowing Disorders
- Feeding Clinic of Los Angeles
- Kennedy Krieger Institute