Continuous Feeds

We see a lot of questions from parents about continuous feeding and really wanting to avoid it at all costs. When you start tube feeding, no one wishes for continuous feeding. But, if your child needs it, it is actually a lot easier than you may think. You can try other techniques like switching formulas, trying a blended diet, or feeding slower to maintain bolus feeding. But, more often than not, changing feed schedules to continuous feeding can help tolerance, especially in children with motility issues. You adapt, just like you did to tube feeding.

Continuous daytime feeding is made much easier with a small, portable feeding pump and backpack. Even if your child is not able to wear the backpack, it is handy for carrying and hanging (with a carabineer clip) on strollers, park swings, and grocery carts. In the home, it can be clipped to high chairs.

Parents have also put backpacks on toy shopping carts, plant carts, or other inventions with wheels, so that the backpack can either be pushed or followed by the child.

With a small portable pump and backpack, even toddlers can wear their own backpacks.

You do need to secure extension sets and tubing more securely with continuous daytime feeding. Try taping the extension set to your child’s tummy or pinning it to her diaper, shirt back, or underwear, especially if your child has a GJ-tube so it doesn’t spin. If there is a possibility that your child could move away from the backpack and drag it, you may want to consider a heavy duty tape like durapore to secure the tubing to clothing. It will leave some sticky residue, but it can withstand dragging a backpack and not pull the tubing at the tube site. The 24-inch extension sets work best in this situation. Any extra tubing can be coiled and tucked into the backpack.

If possible, schedule feeds so your child is not tube feeding during the most active times of the day. This gives the child a break from wearing the backpack, or you a break from following the child around with the backpack. For information on continuous feeding at school, see Feeding at School.

Frequently Asked Questions about Continuous Feeds

Active children really need a backpack for the pump and food bag. Even if your child is not able to wear the backpack, it is handy for carrying and hanging (with a carabineer clip) on strollers, park swings, and grocery carts.

Try taping the extension set to your child’s tummy or pinning it to her diaper, shirt back, or underwear, especially if your child has a GJ-tube so it doesn’t spin. The 24-inch extension tubes work best in this situation. Any extra tubing can be coiled and tucked into the backpack.

If possible, schedule feeds so your child is not eating during the most active times of the day. This gives the child a break from wearing the backpack, and you a break from following the child around with the backpack.

  • A change of clothes for your child, and maybe yourself.
  • An extra button kit. You never know when it might get pulled out.
  • Medical tape. It comes in handy for your child and a number of on-the-go emergencies. One momma taped up her car bumper!
  • Syringes. Larger ones (60 mL) are good for flushing and entertaining your child. Smaller ones (10, 5, 3 mL) are helpful for giving meds.
  • Venting supplies. A bolus tube and syringe for venting.
If you were not given a backpack already, check with your DME supplier to find out if your insurance will cover one. The Moog Infinity Enterlite pump has two backpack options appropriate for children: the Super Mini (holds 500 mL bags) or the Mini (holds 500 or 1200 mL bags). The Super Mini is the right size for a toddler or small child. The Kangaroo Joey also has bags designed specifically for it.

If your insurance doesn’t cover one of these backpacks, you can modify a child’s backpack, a lunch cooler, or purchase a parent-made backpack. Click here to view backpacks in Useful Products.

You can feed on-the-go, no matter where you are or where you are going.

You can pack it with ice packs for the overnight feed and leave it hanging for 8-10 hours, or pack it with ice for day trips.

You don’t have to attach the feeding pump to the IV pole. You can just hang the backpack up.

Your child can continue to be an active kid.

It is possible to orally feed while doing continuous feeds. Kids on continuous feeds, however, often are not very hungry because they are being fed continuously. Sometimes a slight reduction in tube feeds, either by reducing the length of the continuous feed by an hour or two, or reducing the amount fed, will help a child feel hungry. Oral feeds should be kept small at first. If oral feeds are being tolerated well, your child may be ready to try some bolus tube feeds during the day as well.
If your child is showing signs of readiness, such as excellent tolerance of G-tube feeds or the ability to eat a bit orally during the day, it may be time to try going back to bolus feeds. Of course, ask your doctor first.

First, you can try to condense daytime feeds a bit. For example, if your child normally is fed 8 hours during the day and 12 hours at night, try doing 8 hour-long feeds during the day instead, with 30 minutes between feeds. You can program the pump using the interval setting, so it should not feel any different than continuous feeds. Slowly, over a period of weeks, speed the feedings up until they only take 20 or 30 minutes.

You can also split the daytime feeds into 3 to 4 “meals” that are initially given very slowly, over two or more hours. Gradually, over a period of weeks, speed up the rate of each meal until the feed is completed in 20 or 30 minutes.

The most common cause of failure is being too aggressive by speeding up the feedings too quickly. Expect the transition to take weeks to months.

You can start by getting your child used to wearing the backpack empty. Then you can start to add some weight to it by adding some small toys. Next, you can include the pump alone. Finally, you can add the feeding set with formula. You may want to start with just a couple of hours’ worth of formula, rather than several hours until your child gets used to the additional weight.

Overnight Feeds

Overnight continuous feedings are typically used for children who need additional calories beyond what they can take orally or by feeding tube during the daytime hours. In addition, children who are fed around the clock, especially children with GJ-tubes or J-tubes, are typically fed continuously during the night, as well as during some or all of the daytime.

Parents are universally concerned about tangling of tubing around a child’s neck during overnight feeds. While this is a widespread concern, we haven’t heard of infants and children becoming hurt as a result of tangling. Tangled lines are far more likely to result in line occlusions and feeding pump alarms.

favicon_57Tip: To prevent “feeding the bed,” use an AMT clamp to keep the tubing and extension set together at night.

There are steps you can take to reduce the amount of tangling. The key is to keep the tubing away from the child’s head.

  • For an NG-tube, you should tape the tubing down the child’s back, then down the pajama leg. If the pajamas are two piece, you can run the tubing inside the pants leg.
  • For G- or GJ-tubes, you can tape the extension to your child’s stomach using a gentle tape like micropore or hypafix. Or you can use a tape tab and secure the extension set to clothing. Then run the tubing down the inside of a pajama pants leg. Some parents have used baby legs, which are like leg warmers. Others have found that sleep sacks with a hole at the end are also effective.
  • If you use an IV pole, place the pole a few inches from the foot of the crib or bed. If your child gets tangled or pulls, you will hear the pole crash against the bed.
  • You can use a section of a pool noodle, pipe insulation, or even an empty paper towel roll to tame tubes and prevent tangling, especially if you have multiple tubes or wires. There are also line tamers to corral multiple lines.
  • Never run the tubing through the spindles of the crib. Run the tubing over the railing, so that when you go to pick up your child, you do not pull on the tubing if you have to pick them up quickly. Be careful taking your child in and out of the crib. The extension set can get caught between you and the crib/bed when you are leaning over and you can pull the button out. Often it is easier to “plug” them in after they are in bed, and to “unplug” before getting them out.

Children who can climb out of their cribs at night should be corralled using a crib tent over the top of the crib. Older children may be able to be taught how to unhook themselves to go to the bathroom or how to carry their backpack when they get up.

favicon_57Tip: You don’t have to refill the bag in the middle of the night. Standard formula can hang for 2-8 hours without spoiling, depending on the type of formula. Check with the manufacturer. If you live in a warm climate or are concerned about spoilage, place an ice pack in the feeding backpack, or rubber band it directly to the feeding bag.

Children who are fed around the clock or just at night might need special adaptations to help them sleep safely. The following Frequently Asked Questions address the common issues that arise in Continuous Overnight Feeding.

Frequently Asked Questions about Overnight Feeds

If you have a backpack, you can hang it using a link or carabineer clip off the side of the crib or bed. Your home health care supplier may provide an IV pole for you to attach the pump and hang the bag. In either case, be sure to drape the tube over the top of the crib rail, and not through the side of the crib to avoid pulling the tube out.

You don’t need to refill formula in the middle of the night! Most formulas, as well as breast milk, can be hung for 4-6 hours without refrigeration (check the label). But with an ice pack tucked in the backpack or rubber-banded to the feeding bag, you can likely go at least 8-10 hours. The formula will be about room temperature by the time it makes it to your child’s tummy.

Two piece or snap-up jammies are the easiest. For infants, sleep gowns also work very well because the tube can go right out the bottom, and they allow easy middle-of-the-night diaper changes. Zippered sleepers will work, but you will have to cut a hole for the tube to go through. Sleep sacks work well since most zip top to bottom, and the tube can just run out the bottom.

If your child rolls around in bed, you will probably want to secure the extension down a pants leg. There are also products to adapt clothing, or special clothing made to be tube-friendly. Click here to see adaptive clothing in Useful Products.

You will likely experience periodic vomiting, accidental “feeding the bed,” or diaper leaks. Keep extra bedding nearby for a quick overnight change, or you can layer bedding and just peel off soaked layers as needed. Reusable chux pads work great under sheets to help protect the mattress and another layer of clean bedding. Some also choose waterproof mattress covers for added security.

Overnight diapers are a must for children who are not toilet-trained, especially if your child sleeps (mostly) through the night. They start at size three. There are also diaper boosters, cloth options and hybrid options. You may choose to use an overnight disposable diaper and a cloth outer layer.

For more suggestions, see The Pee Soaked Bed: Options for Super Soakers from Complex Child.

It is often recommended that children who are fed overnight, especially if they have reflux, be elevated to a 30 degree angle. You can elevate a crib or bed by putting large soup cans or books under the feet on one end. You can also elevate the mattress by placing items under the mattress. Examples include pillows, blankets/comforters, and towels. Do not put these directly under a baby or a child for safety reasons, but rather under the mattress.

Use rolled towels to make a “U” shape to keep your child from sliding down. If you are crafty, sew fabric into tubes and fill with uncooked rice to mimic the positioning tubes used in NICUs.

There are lots of products out there to help keep your child in an elevated bed, or to help with positioning. Check with your child’s doctor before you use any products in the crib or bed to make sure they are safe for your child. Click here to view Inclines and Beds in Useful Products.

There are a few specialty beds you can purchase, and you will likely need letters of medical necessity in order to get these beds covered by insurance. Click here to view Inclines and Beds in our Useful Products section. Some insurance companies will push for a traditional hospital bed, which may not be appropriate for your child. The manufacturer of the bed you select should be willing to work with you to get insurance approval. See Funding for Specialty Medical Beds from Complex Child for more information on getting a bed approved for your child.

Some crafty parents have rigged traditional beds, including bottom bunks. There are a wide variety of add-on bed rails available for purchase. A bottom bunk of a bed can be almost fully enclosed if placed against a wall with a bed rail on the open side. Similarly, a day bed can be made into an enclosed space by adding a rail or gate to the open side. There are also wedges, bed tents, and special reflux beds available for purchase. Click here to view Inclines and Beds in Useful Products.

Parents are always concerned about children moving out of their cribs. It is OK to keep your child in his crib longer than is typical, as long as he is safe to sleep in it.

If your child understands that she is connected to the feeding pump and isn’t trying to climb out of the crib, the transition to a toddler or regular bed should go pretty smoothly. Young children can be very proud to move to a “big kid” bed and can be taught to wait for someone to help them disconnect from the pump before getting out of bed.

If your child is climbing out of the crib, she may still not get up and pull the feeding pump along when she is in a toddler or regular bed. If your child does like to get up on her own, there are bed tents. However, more often than not, we hear from parents that they were concerned about the transition, but it didn’t end up being a problem once they moved their child.

Parent Suggestion

We purchased 1/2 inch pre-slit pipe insulation in the plumbing department at Lowe’s, 6-foot long for less than $1. The pipe insulation is much more flexible than a pool noodle. Our son has a Farrell Valve too, so he has longer lines and 2 lines coming together at one point (his favorite place to pull apart and wrap around himself).

At first, we cut one long piece of pipe insulation to fit the length of the feeding tube lines that were in his crib. It was very easy to slip around the line because it was already preslit. It was flexible, but not flexible enough for our son as he moved around his crib.

Later, we took it off and cut it into 3 smaller pieces that now allow him to move with freedom wherever he wants to go. We haven’t covered the pipe insulation yet, but we are going to make a fabric cover so he does not chew on it.