From Tube Feeds to Oral Feeds: Where to Start

Consider your child’s perspective on eating. Until now, nutrition has involved needles, tubes down the throat or nose, and possibly surgical interventions. Those negative correlations don’t entice anyone to ramp up their eating game. For many NICU grads, the painful feeding experiences last long after discharge.

So, how do you navigate that as a parent? 

The answer: Create memorable, positive experiences during mealtimes. That basic strategy will lead to an increased willingness to interact with and accept new foods. 

Behavior is a form of communication, especially for someone with speech delays. Pay close attention to the responses your child has when seeing, smelling, touching (or even hearing!) a new food. Tread lightly as you begin this transition from tube fed to oral eater. Think of the healing process as peeling an onion. There are many layers and each one might cause tears to fall from your little one’s eyes.

Don’t give up! Carving new pathways in the brain is difficult, but worth the effort.

 

Create memorable, positive experiences during mealtimes. That basic strategy will lead to an increased willingness to interact with and accept new foods.

 

Where to start?

  1. Always be sure to seek medical advice from the professionals who know your family’s situation the best before beginning any new feeding regimen. It's also important to note that not all children may be ready for or benefit from this transition, and that we wholeheartedly believe there is nothing wrong with your child continuing to use a G-tube. Fed is best and safety is key. 

  2. Begin with a short-term goal in mind that will make a huge impact on your family life and the life of your child. As much as possible, allow that goal to shape how you move forward with feeding. 

  3. Take note of the items your child accepts willingly. If she eats nothing by mouth, document what she touches. Categorize solids or beverages in columns based on the food groups. Even though this list might only have one item on it now, you will be thankful you began writing it down when words cover the page. 

  4. Start small and use individual likes and strengths to guide the process of what new flavors and textures to try. For example, if your child takes formula or human milk well, you might begin with adding a teeny tiny portion of a puree to the bottle assuming there aren’t any restrictions on fluid consistency. Carefully gauge her reaction. Then slowly add more puree and less milk over time, eventually transferring to spoon-feeding instead of using a bottle. If the child is not eating purees, you can try another fruit or vegetable blend in the breast milk/formula to increase exposure. 

  5. Don’t spend a lot of time wondering why any particular flavor flopped. Just add it to the list and note her response. Keep it in the rotation unless there is a significant reason not to. New tastes take time to grow on us. 

  6. Be flexible. Rome wasn’t built in a day. Your child has already overcome so much, and eating orally is no small feat. Be patient and kind. 

  7. 🎉 Celebrate success. Once the first goal you set is accomplished, make a big deal out of it. Did your tubie: 

    • get through a meal without vomiting? 

    • try one new flavor this week? 

    • consume an extra ounce at each feed? 

These might seem like small successes to some people, but we former NICU parents know the value of a small step. Be bold when you look and see what your child has done and celebrate accordingly. 

My Kiddo is Not Tolerating Tube Feeds. What Can I Do? 

Unfortunately, a lot of kids on feeding tubes struggle with vomiting. When you think about it, it makes a lot of sense. The muscles and saliva secretions work together to break down food as it moves through the digestive system. Using a feeding tube, the nutrition bypasses portions of the natural digestive process and food doesn’t get broken down as quickly.

It leaves tubie parents in a lurch because vomiting reduces the amount of calories the body has to grow and thrive, resulting in poor weight gain and often weight loss. These steps could help you to reduce vomiting and accelerate the growth you’re looking for. 

  1. Act now: If your little one throws up a feed here and there, it’s not cause for alarm, but once it becomes routine, contact her medical team. If the response is to administer reflux medication, ask for other food options that might be better on your child’s stomach. Request your provider take a deeper look into the reason for the intolerance. 

  2. Consider a blended diet: There are several brands of blended foods on the market that your insurance may cover if you have a letter of necessity from your doctor. Not all physicians are on board with blended diets, so it may require some advocating.  

Here are some packaged options*:

*please note we are not affiliated with any of these organizations and do not receive compensation or products from them for recommending them.

According to the European and North American Societies for Pediatric Gastroenterology, Hepatology, and Nutrition, “Reported benefits of blended diets include reduced GERD and infections, improved defecation, level of alertness and attention span, skin conditions, and appearance of hair and nails. Families report a sense of greater normality.”

  1. Use your resources: If your doctor will not approve a blended diet, you can ask another professional  to write you a script (such as the pediatrician instead of the GI). If not, ask for an enzyme formula, which is broken down and therefore easier to digest. You can often find these formulas in the same brand you currently use, easing the adjustment. 

  2. Take notes:  If you don’t have time to jot your observations down, use a camera or an audio recorder app to track the process (like the day you changed the formula, the response, weight change, etc.). This anecdotal information supports your position for offering a particular food even if weight gain is not as high as your provider prefers. 

  3. Use calorie boosters:  Once you know which formula your child can tolerate, you can add in supplemental foods to boost calories. 

Remember: Besides breathing, eating is the most essential part of life. If your pediatrician is unwilling to collaborate with you to find the feeding routine that works, it might be time for a change. You’ve got this!

We recently had Darla on the NICU Alumni podcast. Listen to her episode here! And if you’d like more information you can check out her free webinar - How to Transition your Child to Oral Eating Without Significant Weight Loss.

Darla Vazquez

Darla Vazquez is the momma of a former 27-weeker who was in the NICU for 203 days. She spent the first 9 years of his life navigating medical fragility, developmental delays, and an autism diagnosis. Then she found out she was pregnant again and is now learning how to manage raising two kids 10 years apart, each with their own distinct needs. Along the way she’s worked in many different areas to be flexible for her family, but enjoys education the most, specifically teaching special education which is especially meaningful to her. Darla lives in Texas with her husband, 2 kids, and a dog.

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