C, our 3-year-old son, had a feeding tube (g-tube) placed in August 2013. He had essentially stopped eating and was only consuming gummy bears and graham crackers. After becoming lethargic, he was admitted to Children’s Hospital of Wisconsin to receive an NG tube. His g-tube was surgically placed two weeks after that. After months of researching, advocating, and testing, he was diagnosed with delayed gastric emptying/gastroparesis in October 2013. You’ll find all my posts about our g-tube life below.
C had his emergency trip to the hospital in 2013, where he received his NG-tube and later a G-tube. I never imagined that he would still have his low-profile g-tube button 2.5 years later. The g-tube has become so much a part of daily life that it’s just normal. The only time I really think about it being different is when I’m asked the most common question of the past 2.5 years: “When do you think he’ll get the tube out?” Or, the less P.C. version, “So do you think he’ll ever eat by himself?”
That question used to sting a bit. Now, I just smile, shrug and say something about the amazing strides that C has made, adding that he gets the rest of his calories via his tube – and that is okay. Something that I’ve always wanted for C is for his button to be just another part of him. It’s not something to hide, whether at the pool or when it’s time to eat dinner. Body confidence, y’all! The day he randomly lifted his shirt at a family function and proudly announced, “I have a tube,” I knew that we were doing it right.
Different, not less.
Different, not other.
My son’s feeding tube has allowed him to live, grow and thrive. During Feeding Tube Awareness Week® 2016, I’m celebrating 2.5 years with C and his g-tube!
I am no longer concerned about the timeline for g-tube removal. It will happen when he’s ready and if it doesn’t, that’s okay, too. The feeding tube gave us the gift of watching our son grow and experience his childhood. Nothing could make me more grateful than that.
Do you know someone with a feeding tube? Here is an excellent resource to help you learn more about tube feeding.
Look at this photo from two years ago! I can’t believe my baby boy has had two years with the g-tube button. He had the surgery more than two years ago, then they inserted the button three months after the surgery. He has come so far since that day.
Yesterday, his lead therapist told me that of the people in her picky eaters program, he is the easiest. The easiest! I couldn’t believe it. Images from the past two years of therapy and struggles popped into my mind. I am infinitely thankful for the therapists that he has had, both past and present. The early therapists really laid the groundwork for him, providing him and us with tools to overcome his anxieties with food. His current therapists are gently pushing his boundaries, allowing him to grow and change.
If you’re just starting this process and your child doesn’t have a physical limitation for oral intake (or has gastroparesis that he may potentially outgrow, like C), I want to encourage you. It seems like such a terrifying process. Progress is slow and painstaking at times. Sometimes it may feel like you took one step forward only to take two steps back. But it is worth it. Progress, no matter how slow, is so very worth every appointment and battle of wills that we go through.
Wishing you all a wonderful rest of your week!
This shop has been compensated by Collective Bias, Inc. and its advertiser. All opinions are mine alone. #HorizonLunch #CollectiveBias
During a recent strategy session with my 4-year-old son’s therapists, they mentioned a train method. I was amazed by the simplicity of the idea and decided to put a twist on it to make it our own! C has always had feeding challenges. Over two years ago, he had his g-tube (feeding tube) placed. We have been through years of feeding therapy and received three diagnoses: gastroparesis, sensory processing disorder and autism. We often switch up our strategy as he grows and changes. Right now, we’re all aboard The Lunch Train!
I found Horizon® products at Walmart while shopping for all of C’s favorite lunch foods. Horizon® products make my hectic mornings a little easier and contain ingredients that I can feel good about. The whole family can enjoy Horizon® milk on-the-go in lunchboxes, snacks, traveling and more.
The Lunch Train is easily adaptable to work with any foods you want to present your child. I line up C’s foods on the track. The first food is slightly challenging. I ask him to take one bite of the first food before it leaves the station and he moves onto the second food. C’s first food is cheese, followed by fruit. He likes the sweet taste of fruit!
C’s second food presents less of a sensory challenge for him. It’s a Horizon® Squeeze Pouch, which is an excellent source of calcium and contains 5g of protein per pouch. He has no problem taking two squeezes of the fruit pouch before moving on to the third, “train car.”
I line up his, “train cars,” in order from most challenging to least challenging. It provides an incentive to try a new item or something he is still getting comfortable with before moving on to things he enjoys. C loves crunchy textures, so his third, “train car,” on The Lunch Train is crackers.
Once your child finishes the requested bites in his last, “train car,” the train makes its way around the track and you start again. If you want to give The Lunch Train a try, you can find my free printable here. I love the simplicity of this idea!
C’s lunch beverage is a Horizon® Kids Single Serve Milk Box. The milk box is an excellent source of calcium, contains 8g of protein and no high fructose corn syrup. The chocolate milk is flavored with organic cocoa and the vanilla is flavored with organic vanilla extract. C loves vanilla! The Horizon® Squeeze Pouches come in three different flavors: Mixed Berry, Strawberry and Orange. Check here to see if there will be a demo at your local Walmart between November 5-8 and you can give this product a try! Did you notice the adorable Peanuts Movie packaging? The Peanuts Movie comes out on November 6!
Which flavors of Horizon® Squeeze Pouch and Horizon® Milk do you want to try?
Today marks C’s 2-Year Tubie-Versary! Two years ago today, he had his g-tube surgically placed. He was a 2-year-old who was off the bottom of the BMI chart and now he is a healthy, happy 4-year-old. He is in the 20th percentile for weight – the best he has been since birth. He is in the 35th percentile for height. He’s small, but mighty!
I am so proud of how far my boy has come. He’s fought gastroparesis, acid reflux, sensory processing disorder and autism. He has taught me so much about life, motherhood and love. I am so lucky to be his mommy.
Happy 2-Year Tubie-Versary, dearest C!
I’m sitting here in silence after my children are in bed and it hit me: it happened two years ago. Two years ago, I called the doctor and the pediatric GI because C stopped eating and drinking. He was lethargic. We were told to get him to Children’s Hospital. I rushed around, packing and making arrangements for 3-month-old Baby Jo.
I spent the entire month of August 2013 robotically going through the motions of inpatient hospital visits, learning to use a NG tube, g-tube surgery and the learning curve and insurance calls that come with it. I’m thankful that I was on Zoloft for my PPD, because looking back on it now I don’t know how I would have done it otherwise.
Two years ago, I almost lost my son.
One year ago, we experienced another inpatient hospital stay because we thought he was experiencing seizures. They discovered abnormal brain activity without epilepsy. We have medicine in the bathroom in case of an emergency, because he is at high risk for seizures.
Will I be holding my breath every August for the rest of my life?
Right now, it certainly feels that way. I’m on edge, stressed, emotional, overwhelmed and holding my breath until August is over. There’s something about August.
He was so tiny and frail, his energy gone.
We held him down as they inserted the NG tube. He screamed and fought and cried.
My tiny, sick child.
We helped him put on that tiny hospital gown, laughed with him as he got loopy from anesthesia, and watched as he disappeared with the doctor behind the doors to surgery.
I hate August.
It is Feeding Tube Awareness Week 2015 and this year’s theme is, “The Truth About Tube Feeding.” I’d love to tell you about our lives with C’s g-tube. A feeding tube saved my son’s life. In August 2013, he was slipping away from us. He essentially stopped eating in July 2013. By the beginning of August, he had become weak and lethargic. We were told to bring him to Children’s Hospital of Wisconsin, where he was admitted and given an NG tube.
An NG tube is a feeding tube that is inserted via the nose and placed down into the stomach. My son has sensory processing disorder and hated the feeling of the NG tube, the tape on his face to keep it in place, and the fact that we had to measure the outside of the tube before each feeding to ensure that it was in its proper place. We lasted two weeks with the NG tube before his g-tube was surgically placed.
It wasn’t until October 2013 that we received a diagnosis for C. He had delayed gastric emptying (gastroparesis) and his motility was severely delayed. That means that his stomach doesn’t contract to push food into his intestines. This diagnosis explained so many things about his childhood. I felt like I finally understood my child. At once, I was elated to know and devastated that we had spent nearly two and a half years not knowing this about him. He was in pain and discomfort that whole time. Food would sit in his stomach, causing discomfort and reflux. He came to associate food with pain.
In the next few months, we changed from formula feeding to an organic blended diet. We saw him grow physically and cognitively.
The truth about tube feeding is that it saved my son’s life. Our son is with us because feeding tubes exist.
It’s not always convenient or easy, but the fact is that it is just a different way of eating. You and I eat with our mouths; my son eats with his tube. The next time you see someone with a feeding tube, there’s no need for concern or stares. The truth about feeding tubes is that they are simply another way of eating.