We are proud to say that these posts are not sponsored. Our editorial team of Bobbie moms and writers personally select each featured product. If you buy something through our links, we may earn an affiliate commission, at no cost to you.
Does your child need a feeding tube? Maybe you are getting ready to take your newborn home from the NICU, but they still need help getting enough calories. Or, your child might have a condition that makes eating difficult.
You’re not alone! Newborn tube feeding or Infant tube feeding is more common than you may think. Over 500,000 infants and adults in the United States rely on feeding tubes for some or all of their calories. Tube-fed babies and children, or “tubies” — as many in the tube-feeding community affectionately call them — are everywhere! Even though a feeding tube can seem intimidating at first, they are manageable with a little practice. After you get the hang of it, you may find that knowing your baby is getting the calories they need is a huge relief.
What is tube Feeding?
A feeding tube is a small, flexible plastic tube that delivers liquid food directly into the stomach. In some cases, feeding tubes go just past the stomach into the small intestine.
I talked to Frances Pimenetel, Bobbie’s® own UX designer who is mom to Violet— a powerful unicorn who happens to get most of her calories by feeding tube. (Frances’ powerful Dragon Mom essay is not to be missed!)
“Feeding issues were the first red flag for me with Violet,” Frances said. “She breastfed, but it was barely enough to keep her alive.”
Frances and her husband would battle to get Violet to drink an ounce or two, wiping her with an ice cold washcloth for hours. She also started to wonder if Violet was meeting developmental milestones.
“My co-workers’ babies were holding their heads up in their pictures. And I thought, ‘Violet can’t hold her head up.’ And I remember Kai (Violet’s big brother) would be tracking, and smiling on purpose by now.”
After months of diagnostic struggles and frustratingly normal test results, specialists at UCSF ordered whole exome genetic sequencing— comparing Violet’s DNA to the DNA of both her parents in detail. “That was when we got our final diagnosis,” Frances said.
Violet had pyruvate dehydrogenase deficiency (PDCD), a rare condition causing lack of certain enzymes for carbohydrate metabolism. Most children with PDCD do not survive early childhood. But, after tireless research, Frances discovered that the ketogenic diet offered hope by replacing carbohydrates with ketones as a fuel source.
“We had been killing ourselves to feed her for seven months by that point,” Frances said.
Violet got a short-term nasogastric feeding tube (NG tube) in hope the ketogenic diet would stabilize her enough to have a permanent gastric tube (G tube) placed.
Violet’s condition improved. Her blood had become very acidic, but with the ketogenic diet, it approached normal and finally, she had her G tube placed.
“The G tube has been such a blessing,” Frances says. “I just love it so much. It keeps her alive. Her diet is so specific and the meds she has to take are disgusting. I can’t imagine taking that stuff by mouth as a little kid.”
Why might my baby need tube feeding?
Any time a baby, or person of any age, struggles to eat enough food to meet their calorie needs, they may need support from tube feedings.
Your infant may need tube feeding if they:
- Are premature or low birth weight, and have not developed the strength to get enough calories orally, such as a NICU “feeder-grower”.
- Are restricted from oral food— such as when healing from a surgery or infection of the mouth.
- Have a congenital facial difference that interferes with sucking and swallowing, like a cleft lip or palate.
- Have certain health conditions that cause changes in muscle tone or problems with tolerating oral food, such as Down syndrome, cystic fibrosis, congenital diaphragmatic hernia, or PDCD.
- Have inflammation of their digestive tract, such as infantile inflammatory bowel disease.
- Have an oral sensory issue or feeding aversion, such as with autism spectrum challenges.
- Aren’t gaining weight well by nursing or drinking from a bottle.
Types of tube feeding
There are many tubie journeys and there are many types of tubes. Your healthcare provider may recommend different types for different reasons.
Nasogastric (NG) Tube
A nasogastric, or NG tube leads from your infant’s nose to their stomach. It’s usually a short-term solution. NG tubes don’t require surgery for placement, but they aren’t without drawbacks.
The tube can cause irritation inside your baby’s nose and throat, which can lead to an oral aversion and more problems feeding later on. Tape irritation is another issue, as is dislodging the tube.
Frances says “I hated that thing (the NG tube) because she could pull it out. The tape on her face was causing a rash.”
Many tubie parents say that G tubes are much easier to manage. However, if your baby needs an NG tube, there are tried and true ways to make it easier:
- Make a dislodgement plan. Assume that no matter how well it is taped, it will eventually get pulled out. Plan for what you’ll do when that happens. If you’re comfortable with it, your nurse can train you to replace the tube at home. Practice with them multiple times to gain confidence.
- Stay safe by checking for the correct placement every time you use the tube. It may not be obvious that the tube has gotten out of place. Learn how to measure the tube, check the placement mark and how to check for stomach fluids.
- Ask your nurse for taping tips. Some tape products are less irritating than others. See our product recommendations below.
Gastrostomy Tube (G Tube or PEG Tubes)
A gastrostomy, or G tube goes through your infant’s abdomen directly into their stomach. To access it, you may have a low-profile “button”on your infant’s abdomen, or a longer tube with a port or multiple ports on the end.
A gastrostomy tube requires surgery to place. Because it’s invasive, there’s a higher risk of complications, like infection, or bowel perforation.
However, G tubes don’t cause irritation to a baby’s nose and throat. They also don’t need to be taped to the face. Because a G tube goes directly into the stomach, there’s no chance of accidentally putting a feeding into a baby’s lungs, which can be fatal. A G tube can also be “vented” to let extra air out of the stomach, much like burping.
“I could write a love letter to her (Violet’s) G tube!” Frances says. To care for it, she keeps it dry and clean. She is watchful for infections and does not let Violet swim in lakes or rivers. Beyond that, it’s easy to manage.
Gastro-Jejunostomy Tubes (PEG-J or G-J tubes)
A gastro-jejunostomy tube (GJ tube) goes from the abdomen and through the stomach into the jejunum— the first part of the baby’s small intestine. Usually, a GJ tube has several ports: to the gastric— or stomach portion of the tube, and jejunum— or small intestine portion.
For some children, putting feedings into the small intestine is necessary because of reflux, or other issues with stomach feeding. Ask your doctor if this is something your child needs. GJ tubes are more likely to become dislodged, and need to be replaced in the hospital under imaging if that happens. Feedings must be given gradually with a pump.
Bonding with your tube-fed baby
You may be worried about bonding with your baby if they don’t breast or bottle feed.
The good news is that babies don’t need to breastfeed or even eat by mouth to bond with their caregivers. If, like Frances, you have been fighting for feedings, you may even have an easier time bonding when you remove the stress. “It’s allowed us to focus on other things because now we don’t have to be so consumed with getting calories into her,” Frances says.
You can combine cuddling with feeding even if it isn’t by mouth. Wearing your baby, or carrying your infant in a baby carrier or sling, is a great way to bond. Hold your baby skin to skin, just as you would during breastfeeding. Laugh, sing and engage with your baby. Make eye contact and just spend time together.
Our favorite tube feeding products and tips from tubie parents
Here is a roundup of some of the most useful products to help you with your tube-feeding journey, chosen by tubie parents:
Tabeeze Zippy-Leg Romper— For easy access at the legs so the tube can go down through them during feeds. For more on Tabeeze, read below!* They’ve also just launched Tabeeze Adaptive Iron-On G-Tube Patches.
Cotton Unicorn Tubie Pads– Frances uses these adorable pads, along with triamcinolone ointment (available by prescription) to keep Violet’s G tube site clean and dry and prevent granulation tissue, a common problem.
Duoderm Self-Adhesive Dressing— A gentle adhesive to protect your baby’s skin when securing an NG tube to their cheek. Here’s a tip: Put Duoderm on the skin, lay the tube on top, then secure the tube to the Duoderm with another tape. Your nurse can help!
Shelf Organizers— This, or any similar modular shelf with bins you can label, helps keep baby formula and tube feeding supplies neat and tidy.
Clear Stackable Storage Drawers— Clear drawer organizers for small parts like slip tips, syringes and end caps
Vtopmart Clear Plastic Drawer Organizers— Keep the multitude of small parts organized, clean and easy to access. Syringes, slip tips and caps fit just right in the individual bins.
Boon Grass Patch Drying Rack— There is really no way around hand-washing syringes if you want them to last, Frances says. At least this drying solution makes it easier!
Flying Squirrel Backpack— Your baby has to eat on the go, too! Make it easier with this feeding pump holder you can hang from a doorknob, or off a stroller. Parent reviewers rave and Frances loves it, too.
Command Adhesive Hooks— Hang your pump on these around the house, wherever you need them!
Tiny Tubie Shop— Ever wish there was an Etsy shop that just got you— and your tubie? Look no further. From stickers, to car decals, to belts that hold tubes in place, they have all the accessories.
Feeding Tube Extension Cap— Keep the end of your extension tubing clean and minimize leaks with this parent-designed 3D printed extension cap from Esty store Adapted Design 3D. Shout out to Dad, Greg, at Adapted Design! He created Let’s Adapt for Everyone!, a first of its kind guide to adapting devices, bringing forward his mission to make adapting accessible for everyone by providing step by step adapting tutorials.
OhSewSummer— Cleverly designed backpacks for tube feeding on the go that fit your pump and formula bags.
Caribeener Clips— So many uses, from hanging tubes from strollers, to keeping things organized. Keep a handful of these clips with you at all times.
Ziploc Variety Pack— When you have to keep clean and dirty syringes straight, nothing is handier than a Ziploc bag and a sharpie to label it.
Dr Brown’s formula mixing pitcher— Many tubies have specific formula needs. Violet follows a strict ketogenic diet using Bobbie® Organic Infant Formula and added fats. This pitcher lets you mix once and dispense tube feeding formula through the day.
The Able Fables— Does your tubie have siblings? Teach them all about people with diverse needs and physical disabilities with these inclusive stories. “Abled” kids will love seeing characters like themselves, too!
Tabeeze Adaptive Clothing*
Founded by Carrie Shaltz Haslup, Tabeeze is a line of accessible clothes for babies with shoulder snaps that make access for feeding a breeze. Tabeeze lets you dress your baby without risking a tube coming out while pulling clothes over your child’s head. It’s great for skin-to-skin bonding, too! Although not originally founded as an adaptive clothing brand, parents with medically complex babies share that the ease of Tabeeze’s patented shoulder snaps for bottom-up dressing made a significant difference in their lives. Tabeeze is specifically helpful for G Tubes + NG tubes, PICC lines + Implanted ports, Oxygen therapy, Cranial Orthotics, Cleft Palate Surgery, sensory processing disorders, and pre+post pediatric heart surgery.
Resources for tube-feeding caregivers
One of the best resources for caregivers is other tubie parents. Frances loves the support she has found from others in the tube feeding community. “There is a feeding tube group on Facebook where we exchange supplies and help each other. There are moms on Instagram that post videos of their morning routine preparing baby formula,” she says.
Here are some more useful resources:
- NG Tube: Care at Home— Video training on caring for an NG tube from Primary Children’s Hospital
- UCSF Pediatric Surgery Gastrostomy Tube Teaching— Video training on caring for a G tube from UCSF
- Oley.org— A non-profit group that advocates for people living with feeding tubes and intravenous nutrition.
- Dysphagia Outreach Project— A non-profit that provides dysphagia supplies to those in need. Also a good source for advocacy and education.
Infant tube feeding
“I thought a feeding tube was the worst case scenario,” Frances told me. “But it turned out that It’s not a sign of weakness or failure. Some kids just need that support to get that extra nutrition.”
Are you a tubie parent? Do you know and love someone who gets some of their calories from a feeding tube? The battle you are fighting to make sure they are fed, healthy and thriving is something to be proud of. You are not alone, and you can do it!
Sources:
FACT SHEET. American Society for Parenteral and Enteral Nutrition.
Outcomes of Infants with Home Tube Feeding: Comparing Nasogastric Versus Gastrostomy Tubes. American Society for Parenteral and Enteral Nutrition.
The limitations of gastro-jejunal (G-J) feeding tubes in children: a 9-year pediatric hospital database analysis. American Journal of Gastroenterology.
G/GJ tubes: Making the decision to get a feeding tube. About Kids’ Health.
Gastrostomy feeding tube – bolus. MedlinePlus Medical Encyclopedia.
Feeding tubes in children. Current Opinion in Pediatrics.
Decision-making around gastrostomy tube feeding in children with neurologic impairment: Engaging effectively with families. Canadian Pediatric Society.
The prevalence of feeding problems in children formerly treated in a neonatal intensive care unit. Journal of Perinatology
Gastrostomy tube placement in infants with congenital diaphragmatic hernia: Frequency, predictors, and growth outcomes. Early Human Development.
