Julia

 From a struggle for survival to pure joy of life: How Julia finally became tube-free after 1.5 years

Julia is a cheerful, pretty, and bright girl who, after a long period of worry, stress, and the physical effects of tube feeding, has successfully made the transition to eating on her own. Through the Netcoaching program, she learned to increase her oral food intake, and drinking is no longer a problem either. Her parents were very supportive throughout the process; their initial concerns quickly gave way to trust in their daughter and joy at her newfound quality of life. The entire team is very proud of Julia and her parents, for whom the world of Kaspressknödel is now wide open!

Tell us about your experience with your child’s mealtime situation (with or without a feeding tube). What was it like before, during, and after treatment? How did you feel during the program? What was difficult; what was easy? What kind of changes did you notice in your child? Share what is important to you with other parents…: 

February 27 is no longer just an ordinary date for us. It’s the day our daughter regained her freedom. After a year and a half with a feeding tube, this chapter is finally closed—and the PEG tube the hospital had already announced is history for good. Today, we’d like to share our story—unvarnished, with all its ups and downs—to encourage other parents in the same situation: Give it a try - it’s worth it!

Our daily Life “Before”: A Life in a Constant State of Emergency

When your child is fed through a feeding tube, every second of the day revolves around that little piece of plastic. Our daily life before (and to some extent during) weaning was marked by fear, tension, and exhaustion:

• The constant worry about the tube: Is it positioned correctly? Is the tape still holding? How often did we fear that it might be accidentally pulled out? A significant portion of our little Julia’s face was hidden behind tape.
• The drama of feeding: Every meal was a battle. Stress, tears, and the absolute drama surrounding the bottle turned mealtime into a source of anxiety for all of us.
• The daily vomiting: It was part of our daily routine—often several times a day. It was extremely stressful, both physically and emotionally, to watch our own child suffer.
• Isolation instead of family life: Spontaneous outings? Not a chance. Every time we stepped outside, it was a stressful ordeal, accompanied by mountains of equipment and the constant fear of the next bout of vomiting.
• The fear of the hospital: Every follow-up appointment at the hospital was preceded by great tension and nervousness and left us with an uneasy feeling. The doctors saw no way out and had already told us we’d need a PEG tube (a permanent tube inserted through the abdominal wall). A nightmare for us as parents.
• Developmental Delay: Due to the constant stress and physical strain, our little one was making only slow progress. She often seemed listless and withdrawn.

We were just going through the motions. The constant stress had us firmly in its grip.

The Turning Point: Tube Weaning with NoTube

When the PEG tube was brought into the room, we knew: We had to try a different approach. We decided to enroll in NoTube’s tube weaning program, which took the form of online coaching.

Let’s be honest: It wasn’t a walk in the park. Anyone who claims that tube weaning is easy isn’t being entirely honest. There were moments of extreme uncertainty. When your child’s weight keeps dropping and you have to overcome your own doubts about whether she can really manage without help—that takes strong nerves. For example, when Julia got sick after two months, we were overcome with real doubts because of her significant weight loss during that phase. On top of that, at that point, it felt like we were still a long way from our daughter being able to drink on her own—and that’s at least as important as eating.

But the NoTube team was our rock. They gave us the reassurance we needed to place the trust in our daughter that she so desperately needed. They showed us how to take the pressure off and were always there with tips and encouragement whenever we felt uncertain. After some initial skepticism about whether an online coaching program—one with absolutely no in-person contact—could actually work, it quickly became clear that we’d made the right decision.

Life “Afterward”: A New Life Full of Ease

Today, four months after the nasogastric tube was removed at the end of February, we look at our child and sometimes can hardly believe it ourselves. The change in our quality of life is indescribable:

• A face without bandages: Finally, we get to see our daughter’s pretty, unobstructed smile around the clock!
• Relaxed mealtimes: She’s eating! And she’s eating solid food—with joy and at her own pace. Mealtimes have gone from being a source of stress to cozy family moments. Instead of a bottle, she now uses the “Drinking Bear” (a plastic bear with a straw). She still isn’t particularly fond of porridge or milk-like foods—but hearty cheese dumplings are her absolute favourite!
• Physical stability: The daily vomiting is gone. In the last four months, she’s thrown up maybe twice—and even then, only because she choked. That’s a completely normal amount for any toddler. Her gastrointestinal tract has finally settled down.
• Joy of Life and Social Interaction: Our daughter suddenly loves being around people, playing with other children, and discovering the world. Outings are finally fun and mean freedom, not stress anymore.

• Calmness at Doctor’s Appointments: We go to appointments today with a whole new sense of confidence. The pressure from the doctors has largely disappeared. Although she’s still a lightweight at one and a half years old and weighing about 7 kg, since she eats well and is usually in a good mood, doctors hardly ever—if at all—bring this up anymore.
• A huge developmental leap: Since the feeding tube was removed, her development has literally exploded. She’s making significant progress every day, which simply amazes us.

Our message to all parents who may be having doubts right now:

We know exactly how you’re feeling right now. We understand the fear, the exhaustion, and the worry that reducing the amount fed through the tube might harm your child. But we want to encourage you: Go for it! Trust your children and trust the NoTube team. You’ll be fully supported by a team of experts—we promise.

Weaning off the feeding tube was one of the most important decisions of our lives. It not only taught our daughter how to eat and drink, but it also gave us, as a family, back the joy of living. The PEG tube is history—our future has only just begun.

Thank you to the entire NoTube team for your support, your patience, and this new life!

Do you have any questions? Please contact us!