Enteral Feeding is a new world to navigate. We’re here to help you get up to speed, and fast.
The MyTubeFeedingKid site, created by Nestlé Health Science, is designed to help families and caregivers navigate the wealth of tube-feeding information found on the Internet. As you continue to do all that you can to help your child, we understand that there will be questions and concerns along the way. That’s why we’ve pulled information and resources to support you; so you can embark on this journey as comfortably as possible.
Let’s start with the basics. There are different ways to deliver tube feedings and different types of feeding schedules, depending upon what your doctor has prescribed for your child. The step-by-step instructions here make it easier to understand exactly how each one works.
Glossary of Terms
A feeding method where children are given a certain amount of formula over a short period of time (30-60 minutes), similar to a traditional meal schedule.
A feeding method that uses a pump to slowly and continuously deliver nutrients over the course of several hours.
A feeding tube that delivers nutrients to the top of the small intestine called the duodenum.
A condition that causes difficulty swallowing as a result of the muscles and nerves used during the swallowing process becoming weak or malfunctioning.
Enteral nutrition (EN)
Also called tube feeding, enteral nutrition refers to bypassing the mouth and esophagus and delivering nutrients directly to the stomach or small intestine.
A feeding tube that delivers nutrients directly to the stomach.
A low-profile feeding tube with a one-way valve placed in your child's stomach that allows feeding set tubes to be attached for feeding and removed when the tube feed is complete.
A feeding method that uses gravity to let formula drip or flow into the body by placing an open syringe or feeding set above the height of the stomach.
A feeding tube that delivers nutrients to the second part of the small intestine called the jejunum.
A low-profile device with a one-way valve placed in your child's small intestine.
A procedure used to place a feeding tube into the stomach involving small incisions in the abdomen and the use of a laparoscope, a tool to help the surgeon see inside the abdomen.
Nasogastric (NG) tube
A tube used in tube feeding that is routed first through the nose and then down the esophagus into the stomach.
Nasojejunal (NJ) tube
A tube used in tube feeding that is routed first through the nose and then down the esophagus through the stomach into the small intestine.
A foundation that offers tools, resources and support for people on home IV or tube feeding.
Percutaneous endoscopic gastrostomy (PEG)
A tube that is placed through the skin directly into the stomach or small intestine using an endoscope.
A feeding method using a special feeding pump to continuously deliver tube-feeding formula to the stomach or small intestine.
A procedure using ultrasounds and X-rays to help guide the Interventional Radiologist to place the tube into the stomach.
A hole in the skin to either the stomach or small intestine where a feeding tube is placed.
An open surgery where the stomach is sewn to the abdominal wall to place a feeding tube.
Syringe feeding (bolus feeding)
A feeding method using a catheter tip syringe to gently push food into the stomach.
Your Healthcare Team
Tube feeding a child is often a team effort. Aside from your family and friends, you’ve got your healthcare professional to rely on. Here’s a quick overview of what a typical healthcare team may be comprised of, along with the specifics of who does what.
A Pediatric Gastroenterologist is a doctor who has completed specialized training and experience in pediatric gastroenterology to be able to treat children with digestive, liver or nutritional problems. Pediatric gastroenterologists also treat bleeding, swallowing problems, or other problems encountered in the intestines. They have extensive expertise in managing nutritional problems in children, including placement and management of feeding tubes, intravenous nutrition and diagnosing and treating infants, children, and teens with liver disease.
Pediatric Gastroenterologists are medical doctors who have had:
- At least four years of medical school
- Three years of pediatric residency training
- Three years of additional training in pediatric gastroenterology, hepatology and nutrition, including medical research and treatment of infants, children and teens with digestive, liver and nutritional disorders
- Certification in pediatrics from the American Board of Pediatrics
- Certification in gastroenterology and nutrition from the American Board of Pediatrics Sub-board in Pediatric Gastroenterology
Pediatric Nurse Practitioner
Pediatric Nurse Practitioner (PNP) are Registered Nurses who have completed a formal education program that gives them additional expertise in child healthcare. National certification as a PNP requires a master degree in nursing.
PNPs can work in private clinics, community clinics, public health clinics, school health clinics, specialty clinics, and hospitals. Some PNPs choose to gain specialized skills that help them care for specific categories of patients; such as orthopedics, neurology or children with special healthcare needs.
Registered Nurse (RN)
You may not have a Pediatric Nurse Practitioner (PNP) on your child's healthcare team, but you will have an RN — who will likely be your main point of contact when you call your child's doctor with a question or a problem. You will likely get to know your child's RN very well, and he or she will be a valuable resource for you.
Registered Dietitian Nutritionist (RDN)
If you have a Registered Dietitian Nutritionist (RDN) on your child's healthcare team, he or she will be your main source of nutrition information. An RDN is a nutrition expert who has met academic and professional requirements, and may also hold additional certifications in specialized areas of practice such as pediatrics, renal nutrition or diabetes education. Your RDN will be able to help you understand your child's nutritional needs and goals, answer specific questions about tube-feeding formula and feeding schedules, and provide you with information about your child's growth.
A Speech-Language Pathologist (SLP)
A Speech-Language Pathologist (SLP) has a range of expertise and may be working with your child not only on articulation and speech, but also on feeding and swallowing problems. If your child is able to take any formula or food by mouth — or if that is a goal for your child — an SLP will likely be a part of the healthcare team.
Pediatric Physical Therapist
A Pediatric Physical Therapist is trained and educated to provide children with physical rehabilitation programs. These therapy programs can help assess your child's range of motion, muscle strength, neurological function, motor control and posture, and help to improve strength and movement. If your child needs help in this area, a physical therapist will likely be a part of the healthcare team.
Occupational Therapy (OT) focuses on the physical as well as the psychosocial needs of children. Occupational therapists can help with swallowing disorders, upper body strength and range of motion, sensory problems, assessment of equipment needs for your child, upper body splinting and casting, improving endurance, developmental assessments and alternative methods for pain and nausea management.
A respiratory therapist is trained in providing care specifically for children who need breathing support (such as oxygen therapy), breathing treatments or more advanced management for children on ventilators. A respiratory therapist can help manage children with asthma, cardiopulmonary disease, neurological disorders or other conditions that might impair a child's ability to breathe. They can also work with the speech therapists to help children who have tracheotomies regain communication skills.
Pediatric Pharmacists are licensed professionals with at least five years of specialized pharmacy education. They often have completed advanced degrees in pharmacy (Pharm D) and residency programs. They will advise other members of the healthcare team about which medications to use and how to use them, or counsel families directly to help them use their medication correctly. They will also make sure that your child's medication regimen will not result in any harmful drug interactions — this is especially important if your child is on many medications at once.
Remember, not all of these healthcare professionals may be a part of your child's healthcare team. Make sure you write down all the people that will be part of your child's team because each of them will be valuable in answering your questions and helping your child get the best care possible.
Questions for Your Healthcare Team
- Is my child’s growth on track (weight and height)?
- My child appears to be underweight. What should I do?
- My child appears to be overweight. What should I do?
- How and when should my child’s bone density be evaluated?
- How do I know if my child is still on the right formula?
- Why does my child need extra calories?
- Why does my child need extra protein?
- How can I tell if my child is getting all the vitamins and minerals he or she needs?
- How can I tell if my child is not tolerating the formula?
- Is a blenderized formula suitable for my child?
- Why are bolus feeds recommended for my child?
- Why is a continuous feed recommended for my child?
- Where can I find more information about feeding pumps?
- Can my child still drink and/or eat by mouth?
- How can I make tube feeding easier for my child and our family?
- Tube weaning: How will I know when it's time?
- What should I do if my child is vomiting every day?
- What should I do if my child is irritable or uncomfortable after feeds?
- Could this be a sign of feeding intolerance?
- What should I do if my child looks bloated after feeds?
- What should I do if my child frequently has diarrhea?
- What should I do if my child frequently is constipated?
- How will I know if I should change my child's feeding schedule?
- How can I tell if my child has a food allergy?
Keeping a Daily Diary
To help you and your doctor monitor and evaluate your child's progress with tube feedings, keeping a daily diary may help you feel more in control. Use our diary to help track your child's home tube-feeding progress over the course of each week.
Resources & Organizations
The Oley Foundation is a national, non-profit organization that strives to enrich the lives of patients dependent on home intravenous nutrition and tube feeding through education, advocacy, and networking. All programs are offered free of charge. Contact Oley today to see how they can help you and your family live more fully.
The materials presented herein are for informational purposes only and do not constitute an endorsement of the Oley Foundation.
FEEDING TUBE AWARENESS
A group of parents who are raising infants and children with feeding tubes who want to share their experiences along the way in addition to raising awareness of tube feeding.
CaringBridge provides free websites that connect people experiencing a significant health challenge to family and friends, making each health journey easier.
Feeding Matters has a mission to bring pediatric feeding struggles to the forefront so infants and children are identified early.
PEDIATRIC COMPLEX CARE ASSOCIATION
The vision of the Pediatric Complex Care Association is to unite organizations to provide a combined voice for children with medically complex needs.
Feeding tubes that are designed to help you share and learn the best use and care practices. The Mic-Key Tube site also provides online tools and resources to gain knowledge and tips from both medical professionals as well as real-life experiences.
The American Society for Parenteral and Enteral Nutrition (A.S.P.E.N.) is dedicated to improving patient care by advancing the science and practice of nutrition support therapy.
NASPGHAN (North American Society for Pediatric Gastroenterology)
GIKids is the patient outreach and education effort of NASPGHAN - the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition – an organization of more than 1400 pediatric gastroenterologists, predominantly in 46 states, the District of Columbia, Puerto Rico, Mexico and 8 provinces in Canada.
The information presented on this website are for informational purposes only and do not constitute an endorsement of Nestlé Health Science products by the above mentioned organizations.
Tube-Feeding Success Stories From Real Parents Like You!
It's often difficult to imagine what life looks like once you settle into caring for a tube-fed child at home. Here are encouraging words from parents about their children and experiences with tube-feeding:
"When we first found out that our son needed to be tube-fed, we were mostly just scared and wondering if he would still be able to eat by mouth. If he would ever be [able to] transition off the tube. Would we ever be able to leave the house? … At first, we were not at all comfortable with administering our son's tube-feedings. We only had two days of watching at the hospital, and we didn't have anything to practice with. We had no idea what we were doing. But now, I am able to train my extended circle of care … The support we've received from other parents and organizations has been so helpful. I joined all kinds of forums to get as many ideas as I could. Sometimes you are just interested in support; sometimes you are really looking for information."
— Jacquelyn F., mom of Rafael, age 6
"Tube-feeding has been a huge learning experience! I constantly think about the nutritional aspect of my daughter's diet, and wonder if she's getting enough or not. Our pediatric nutritionist has been one of my greatest resources … There are a lot of questions when your child is being tube-fed. I am in regular contact with her feeding 'team,' and I don't hesitate to pick up the phone and call when I have a question."
— Cathy R., mom of Breeauna, age 6
"When we first found out that our daughter would be tube-fed, my first thought was dread, horror, fear and anger all rolled into one. I knew our life would never be the same … I think about my child's nutrition constantly. It's a daily fear that I won't get enough in her or whether she is on the best formula for her needs … In the process of learning how to manage our daughter's tube-feeding, our healthcare team has been beyond helpful. These ladies have answered questions I had about the tube itself, suggestions for feeding routines, problem solving for vomiting, tube blockages, etc. And it is just a stress relief as well … Our healthcare team has been very helpful, but I have really found that experience is the best teacher — it's the only way to learn! I did like being talked through it, but the only way I finally understood was just do it over and over and over."
— Joanne C., mom of Evelyn, age 5