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Transitioning Back Home

Transitioning Back Home

Starting to Tube Feed at Home
Tube-feeding Basics
Managing Potential Problems
When to Call the Doctor
Staying Strong
Success Stories

The first day home with your child is both exciting and frightening.

The great news is that your child is doing well enough to come home. But the scary part is that you now need to take the reins from the healthcare professionals and learn how to tube feed your child. This probably feels like an overwhelming task, and rightfully so—but as with anything else, the more you do it, the more comfortable and confident you will be.

Starting to Tube Feed at Home

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.

Tube Feeding with an Enteral Feeding Syringe (Bolus Feeding)
Bolus feeding

A tube feeding that provides a certain amount of formula over a short amount of time (usually 30-60 minutes), and is typically provided several times per day. Bolus feeding can be given different ways:

  • Bolus feeding with a syringe: Pour formula into the syringe, then use the plunger to push the food directly into the stomach.
  • Gravity feeding with a syringe: Pour formula into the syringe and, without using the plunger to push it, let the formula flow into the stomach.
  • A gravity bag can also be used: The bag is filled with formula and hangs above the child to let the formula drip down into the stomach. Roller clamps can be used to control the rate of flow into the stomach.
  • Pump Feeding: A feeding pump can be programmed to run at whatever times and feeding rates you choose to deliver bolus feedings. Make sure your healthcare professional demonstrates how to use the pump before you go home.

Before starting, follow your healthcare professional’s instructions to check the position of the tube before you begin a feeding.

Bolus feeding with a syringe

Setting up:

  1. Prior to starting the feeding, be sure to wash your hands thoroughly, check the formula expiration date, and disinfect the formula can or container with an alcohol swab.
  2. Mix the formula well by shaking the container or mixing the powder as directed.
  3. Pour the formula into a clean liquid measuring cup or directly into the syringe.

Starting the bolus feeding with a syringe:

  1. Make sure your child sits upright, at least at a 30–45 degree angle.
  2. Pinch or clamp the end of the feeding tube closed to stop the flow of formula.
  3. Attach the syringe to the end of the feeding tube, releasing the pinch or clamp to open the flow.
  4. Flush your child's feeding tube with clean, room temperature water.
  5. Pour the prescribed amount of formula into the syringe or draw up the formula into the syringe from the liquid measuring cup.
  6. Unclamp the feeding tube and slowly push the plunger down.
  7. Clamp your feeding tube in between each bolus to prevent leakage.
  8. If the diet prescription indicates, add more formula to the syringe as formula flows into the feeding tube.

After the feeding:

  1. Use the syringe to flush the feeding tube with clean, room temperature water.
  2. Pinch the tube closed, then detach the syringe from the feeding tube and close the feeding tube.
  3. Have your child continue to sit upright for an hour after feeding.
  4. Clean with soap and water, rinse and dry “your” equipment after each feeding and be sure to replace your equipment as directed by your healthcare professional.
Gravity feeding with a syringe or feeding bag

Setting up:

  1. Prior to starting the feeding, be sure to wash your hands thoroughly, check the formula expiration date, and disinfect the formula can or container with an alcohol swab.
  2. Mix the formula well by shaking the container or mixing the powder in the container as directed.
  3. Flush your child's feeding tube with clean, room temperature water.

Starting the bolus feeding with a syringe:

  1. Make sure your child sits upright, at least at a 30–45 degree angle.
  2. Pinch or clamp the end of the feeding tube closed to stop the flow of formula.
  3. Attach the syringe to the end of the feeding tube, releasing the pinch or clamp to open the flow.
  4. Flush your child's feeding tube with clean, room temperature water.
  5. Pour the prescribed amount of formula into the syringe or draw up the formula into the syringe from the liquid measuring cup.
  6. Insert the tip of the syringe into your feeding tube or button adapter.
  7. Unclamp the feeding tube and allow the formula to run through the tube by gravity. Adjust the height or angle you are holding the syringe in order to control the rate of flow of the formula.
  8. Clamp your feeding tube in between each bolus to prevent leakage.
  9. If the diet prescription indicates, add more formula to the syringe as formula flows into the feeding tube.

Start the bolus feeding with a feeding bag:

  1. Make sure your child sits upright, at least at a 30-45 degree angle.
  2. Close the roller clamp on the feeding bag.
  3. Hang the feeding bag above the child on an IV pole or hook.
  4. Slowly open the roller clamp on the feeding bag tube to allow the formula to run through the tubing then close the clamp. This gets the air out of the tubing.
  5. Open the plug at the end of the feeding tube. If you have a button, insert the adapter into it.
  6. Unclamp the feeding tube and, using a syringe, flush your child's feeding tube with clean, room temperature water. Reclamp the feeding tube.
  7. Unclamp your feeding tube and slowly open the roller clamp, then allow the formula to drip in. You can lower or raise the bag to adjust the flow of the formula.

After the feeding:

  1. Use the syringe to flush the feeding tube with clean, room temperature water.
  2. Pinch the tube closed, then disconnect the feeding set and close (reclamp or recap) the feeding tube.
  3. Have your child continue to sit upright for an hour after feeding.
  4. Clean with soap and water, rinse and dry your equipment after each feeding and be sure to replace your equipment as directed by your healthcare professional.
Pump feeding

a feeding pump can be programmed to run at whatever times and feeding rates you choose to deliver bolus feedings. Make sure your healthcare provider demonstrates how to use the pump before you go home.

Setting up:

  1. Prior to starting the feeding, be sure to wash your hands thoroughly, and check the formula expiration date.
  2. Mix the formula well by shaking the container or mixing the powder in the container as directed.
  3. Flush your feeding tube with clean, room temperature water.
  4. If you are using a feeding bag:
        a. Disinfect the top of the formula can or container with an alcohol wipe.
        b. Fill the feeding bag with formula.
  5. If you are using a sealed formula pouch:
  6.     a. Close the roller clamp on the tubing.
        b. Remove the cap on the spike set. Remove the protective cap on the port site.
        c. Stabilize the port area between your thumb and your forefinger. Do not touch the    port opening or spike with your hands or fingernails.
        d. Insert the tip of the connector straight into the open port.
        e. Turn the cap of the connector clockwise until tightly fastened. Turn another half turn to secure fit.
  7. Hang the feeding bag or sealed formula pouch on the pole above the feeding pump.
  8. Since every pump is different, follow the instructions provided by your healthcare professional to set up and operate your pump.

Starting the feeding:

  1. Have your child sit upright, at least at a 30–45 degree angle.
  2. Set the flow rate on the pump (your healthcare provider will tell you your child's feeding rate, or how many mL per hour of formula should be given).
  3. If applicable, open the roller clamp on the feeding set.
  4. Start the pump.

After the feeding:

  1. Close the roller clamp on the tubing closed, then disconnect the feeding set and close the feeding tube.
  2. Flush the feeding tube with clean, room temperature water.
  3. Have your child continue to sit upright for an hour after feeding.
  4. Clean with soap and water, rinse and dry the equipment after each feeding.
  5. Replace the feeding container and tubing as directed by your child's healthcare professional.
  6. If the sealed formula pouch is not empty after 48 hours, dispose of it.
SCHEDULES
Bolus feeding

This is a feeding method where children are given just enough formula to feel full for a few hours, similar to a traditional meal schedule.
Your healthcare professional will provide guidelines to help develop schedules for bolus tube feeding and water flushes, including information such as:

  • The name of your child's tube-feeding formula
  • The number of feedings your child will need to get each day
  • The amount of formula each of your child's feedings should be (or how many cans or containers should be used at each feeding)
  • The amount of room temperature water needed to flush the tube after each feeding equipment as directed by your healthcare professional
Continuous feeding

This is a feeding method that uses a pump to slowly and continuously deliver nutrients over the course of several hours. This may be for children who don't tolerate a large volume of formula in the stomach at one feeding.

A combination of bolus and continuous: some children may need to get bolus feeding and continuous feeding, such as a bolus feeding during the day and continuous feeding overnight while the child is sleeping.

Your healthcare professional will give you a schedule for continuous tube feeding and water flushes, including information such as:

  • The name of your child's tube-feeding formula
  • The amount of formula your child should get each day (or the number of cans/containers of formula your child will need each day)
  • Your child's feeding schedule
    • As you become more familiar with your child's feedings, you may want to vary the feeding times. Check with your healthcare professional before making any changes to the feeding schedule
  • The pump flow rate setting
  • To assure adequate fluid intake, the total amount of room temperature water that should be given to your child each day in addition to the formula
  • The amount of water to use to flush the tube
How to give water and/or medications with a syringe

Water is part of your child's formula, but extra water and sometimes medications are needed to keep your child's body healthy and the feeding tube working. Your child's healthcare professional will tell you how much water or medication your child needs to take.

Use liquid medications when available. If the medication does not come in a liquid form, ask your child’s doctor or pharmacist about how to prepare the medicine to give it through the tube. Also, consult with your child’s nurse, doctor or pharmacist to get specific instructions on which medications should not be given together and medications that need special considerations when given through a feeding tube.

When administering water and medications, follow all the steps below. When administering water only, start at step 3 and follow the remaining steps.

  1. Using a syringe, rinse or flush the feeding tube with 15–30 mL of room temperature water before administering medication (unless instructed otherwise by your healthcare professional). Do not force the water through the tube. If you have difficulty flushing the feeding tube, contact your healthcare professional.
  2. Using a syringe, draw up the correct dose of medication or water for flushing into the syringe. Connect the syringe into the feeding tube.
  3. Gently push the water and medication (or water only) into the tube. When administering water only, you may remove the plunger of the syringe and allow the water to run in by gravity.
  4. Remove the syringe from the feeding tube and refill the syringe with room temperature water as needed until desired amount of water is given or to flush all the medication out of the syringe.
  5. Close (reclamp or recap) the feeding tube when finished and place the cap back on the tip of the syringe.

Tube-feeding Basics

There’s a host of who, what, when and why’s to consider when tube feeding your child. From common questions to a glossary of terms, here’s important tube-feeding information you need to know.

COMMON NUTRITIONAL QUESTIONS AND CHALLENGES
What is feeding intolerance? How can I manage it?

Feeding intolerance is when your child has difficulty with the ingestion or digestion of formula. Intolerance interferes with tube feeding due to the symptoms it may cause.

Symptoms of feeding intolerance may include:

  • Nausea
  • Vomiting
  • Stomach pain
  • Heartburn and reflux
  • Diarrhea
  • Headache
  • Gas, cramps, or bloating
  • Irritability

If you suspect that your child is not tolerating a formula, work with your doctor or dietitian to find the cause of the intolerance. Sometimes it can be as simple as a change in formula. Certain formulas are specially designed to help improve tolerance, which can help relieve digestive symptoms. Your doctor or dietitian can recommend an alternative formula that is appropriate for your child's needs.

What is gastroesophageal reflux? How can I manage it?

Gastroesophageal reflux (GER) happens when stomach contents rise back up, or "reflux," into the esophagus and cause irritation. The liquid that comes back up can contain food, stomach acid, enzymes and bile. Stomach acid enzymes and bile can be harmful because it can damage the esophagus and cause pain and vomiting.

Occasional GER is fairly common, but it can be a problem if it happens frequently. If it happens too often, your child may not get all the nutrients from their feeding, which can affect growth. Some warning signs of GER are pain, irritability, crying, or trouble breathing after a feeding.

Talk to your healthcare team about whether a change in formula that allows faster emptying from the stomach may help to resolve the condition. Formulas with whey protein have been shown to empty more quickly from a child's stomach than casein (another type of protein found in formulas). Your healthcare professional can advise you on an appropriate formula option.

What are "gastric residuals"? Why is this a problem, and how can I manage it?

Gastric residuals are food and/or liquid from a previous tube feeding that remain in the stomach longer than normal, and may even be in the stomach at the start of the next feeding. Gastric residuals that remain in the stomach more than two hours after completing a feeding may mean that the formula is not emptying out of the stomach as quickly as it should.

If there are gastric residuals, your child may spit up or vomit. This is a problem if it happens often enough that your child is not receiving the full amount of their formula, and loses valuable nutrition as a result.

Gastric residuals can be managed by adjusting how the feeding is given, or by changing the formula. Another option is to change the amount of time between feedings. More time between feedings can give the stomach time to empty. Or, the rate of the feeding can be adjusted in order to provide the formula over a longer period of time. Some formulas have been shown to empty from the stomach more quickly than other types of formula, and this may be an option that you can discuss with your doctor or dietitian.

How do I identify a food allergy? How can I manage it?

A food allergy is an immune system response to one or more proteins in the diet. Common foods that cause allergies include cow's milk protein, peanuts, tree nuts, fish, shellfish, eggs, soy, and wheat. Many tube-feeding formulas contain milk or soy protein, or may be made in the same manufacturing facility as other products that contain allergens such as wheat or nuts.

If a family member has a food allergy, the chances increase that your child may have an allergy.

Possible food allergy symptoms can range from mild to severe, and include:

  • Nausea, vomiting
  • Diarrhea
  • Blood in the stool
  • Rash, hives or itchy skin
  • Shortness of breath or wheezing
  • Swelling of the lips or eyelids
  • Anaphylaxis: a severe allergic reaction that is life threatening

If your child has symptoms of a food allergy, it is important to see your child’s physician for further testing.

An A-to-Z Glossary of Tube-feeding Terms
Bolus feeding: 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.

Continuous feeding: A feeding method that uses a pump to slowly and continuously deliver nutrients over the course of several hours.

Duodenostomy tube: A feeding tube that delivers nutrients to the top of the small intestine called the duodenum.

Dysphagia: 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.

Gastrostomy tube: A feeding tube that delivers nutrients directly to the stomach.

Gastrostomy button: 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.

Gravity feeding: 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.

Jejunostomy tube: A feeding tube that delivers nutrients to the second part of the small intestine called the jejunum.

Jejunostomy button: A low-profile device with a one-way valve placed in your child's small intestine.

Laparoscopic gastrostomy: 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.

Oley Foundation: 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.

Pump feeding: A feeding method using a special feeding pump to continuously deliver tube-feeding formula to the stomach or small intestine.

Radiological gastrostomy: A procedure using ultrasounds and X-rays to help guide the Interventional Radiologist to place the tube into the stomach.

Stoma: A hole in the skin to either the stomach or small intestine where a feeding tube is placed.

Stamm gastrostomy: 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.
Types of Formulas

For more information regarding our formulas, click here.

Managing Potential Problems

There will likely be bumps along the way. Understanding what they are often makes it easier to get through.
You’re doing all you can to make your child's tube-feeding journey as positive and trouble-free as possible. Keep that mindset! The first step in managing potential tube-feeding problems is to identify them. With knowledge comes greater confidence and comfort. Rely on your healthcare team as much as you need to by asking questions as they arise.

COMMON PROBLEMS

Click through each one for causes and solutions

Constipation

Difficult-to-pass and very infrequent bowel movements. During tube feeding, bowel movements may be less frequent than usual. If your child is constipated, he or she may feel uncomfortable or bloated.
Possible causes:

  • Not enough water is being given
  • Lack of fiber, or not enough fiber, in the formula
  • Unable to get enough physical activity
  • Medications

Possible solutions:

  • Provide additional water flushes through the feeding tube as instructed by your healthcare professional
  • Check with your doctor or dietitian to see if your child should change to a formula that contains fiber, or if you should add a fiber supplement
  • If it is permitted, and your child is able, increase your child's physical activity
  • Ask your healthcare professional to review your child's medications to see if any may cause constipation
Diarrhea

Frequent loose and watery stools. A child who is tube fed may normally have more frequent or watery stools, but if he/she is having four or more loose or watery stools a day, speak with your doctor.
Possible causes:

  • Medications
  • Rate of feeding is too fast
  • Formula may be contaminated by bacteria after opening
  • No fiber, or not enough fiber, in the formula
  • Intolerance to the formula

Possible solutions:

  • Because emotions can affect digestion, help your child to relax during the feeding
  • Remove opened cans or containers of formula from the refrigerator at least 30 minutes prior to feeding, allowing the formula to warm to room temperature
  • Contact your child's healthcare professional for advice on slowing the feeding rate
  • Do not use formula that has been opened and left at room temperature for longer than the manufacturer's recommendation
  • Do not use formula that has been opened and left in the refrigerator for longer than 24 hours
  • Check with your healthcare professional about changing to a formula that contains fiber, or adding a fiber supplement
  • Check with your healthcare professional to see if your child should change to a special formula that contains ingredients that are easier to digest
  • Wash your hands thoroughly; before you open the can or container, or handle the formula,  disinfect the top of the formula can or container with an alcohol wipe
  • Replace the feeding container and tubing as directed by your healthcare professional
Stomach Upset

An uncomfortable feeling of nausea, bloating or gas. Occasionally, your child may belch or vomit if he/she has an upset stomach.
Possible causes:

  • Formula is being fed too fast
  • Formula is too cold
  • Too much formula at one feeding
  • Lying flat while taking the feeding
  • Engaging in too much activity right after a feeding
  • Intolerance to the formula

Possible solutions:

  • Consult your child's healthcare professional for advice on slowing the rate of feeding
  • Do not refrigerate unopened cans or containers of formula
  • Remove opened cans or containers of formula from the refrigerator at least 30 minutes prior to feeding, allowing the formula to warm to room temperature
  • Make sure you are following the directions for the prescribed amount of formula and/or correct flow rate
  • Do not allow your child to lie flat during or just after a feeding. Your child should sit or lie at a 30-45 degree angle during the feeding and for an hour after the feeding
  • If directed by your doctor, check the residuals in your child's stomach before restarting the next feeding
  • Ask your child's doctor or dietitian to reevaluate your child's formula. You may need to switch to a formula that has more calories in less volume or to a special formula that contains ingredients that are easier to digest and absorb
Dehydration

Too little fluid or losing too much fluid. Some potential early signs of dehydration include thirst and urine that is a darker yellow than usual. More serious signs could include dryness of lips, tongue and skin, and decreased urine output.
Possible causes:

  • Formula is too concentrated (contains too little water)
  • Frequent diarrhea
  • Prolonged fever
  • Not taking enough water
  • A wound is draining large amounts of fluid
  • Sweating heavily

Possible solutions:

  • Give your child the prescribed amount of water every day before and after his/her feedings
  • If your child is experiencing fever, diarrhea, excessive wound drainage or heavy sweating, consult your doctor to determine how much more water your child needs
Aspiration

Formula that enters the lungs, and usually causes coughing, gagging and difficulty breathing. Consult your doctor immediately if symptoms develop.
Possible causes:

  • Formula has backed up or been inhaled into your child's lungs
  • Lying flat during feeding

Possible solutions:

  • Check that the tube is properly positioned
  • Have your child sit or lie at a 30–45 degree angle (about the height of two pillows) during the feeding
  • Have your child remain sitting up for at least one hour after the feeding
  • If your child is taking a feeding at night, follow the doctor's instructions for elevating the head of the bed
  • If your child feels or looks bloated, is irritable, looks uncomfortable or has been vomiting, do not begin a feeding. Consult your child's doctor immediately if symptoms develop
  • If directed by your doctor, check the residuals in your child's stomach before restarting the next feeding
Clogged Feeding Tube

Formula is not flowing smoothly through the tube.
Possible causes:

  • Kink or bend in the feeding tube
  • Dried formula or medication is blocking the feeding tube

Possible solutions:

  • Check to make sure there are no kinks or bends in the feeding tube
  • Flush the tube before and after each feeding with water (ask your child's doctor how much water should be used for each flush)
  • Flush the tube with room temperature water before and after administering medications
  • If the tube is blocked, do not try to remove the blockage yourself. Consult with your doctor for directions on what to do

When to Call the Doctor

As you continue to tube feed your child at home, it’s natural to have questions, or to need some help. Your child's healthcare team can help you answer questions such as:

  • What can I expect from the tube-feeding experience and the different tube-feeding options available?
  • What type of equipment is needed and how do I set it up?
  • How do I know if my child is getting enough nutrition?
  • How do I know my child is having feeding intolerance?
  • Can my child be experiencing allergic reactions?

Your child's healthcare team is there to make sure that your home tube-feeding experience, for you and your child is as comfortable and problem-free as possible.

When to Contact Your Child's Healthcare Professional

If you are having problems with how your child's feeding tube is working, or if there is a change in your child's health (such as a fever or diarrhea) that has you worried, contact your child's healthcare professional. Some of these potential problems are:

Problems with the Feeding Tube
  • Tube is clogged: Formula will not flow smoothly through the tube and you have checked the tube for kinks or bends
  • Flushed the tube with water
  • Tube moves in or out more than 1 inch
  • Tube falls out
  • Large amounts of fluid leaking around the tube (dressing is soaked more than once a day)
Changes that may signal an infection, feeding intolerance or other health problem
  • Skin area around tube has signs of infection
  • Reddened area
  • Warm to touch
  • Firm to touch
  • Tender
  • More drainage than usual
  • Drainage that smells bad
  • Bloody or coffee-ground-colored drainage from the tube
  • A sudden increase or decrease in the amount of drainage through the tube
  • Nausea and/or vomiting that does not go away
  • Fever of 101 degrees or higher
  • Unusual and/or sudden weight loss or gain (more than two pounds a day)
  • Constipation: No stools for two days, or stools that are difficult to pass
  • Diarrhea: Four or more loose or watery stools a day
  • Stomach becomes bloated or distended and tight
  • Increased stomach residual*

*Check with your child's healthcare provider for the amount of stomach residual you should be concerned about. This amount will depend on the age and weight of your child, the total volume of formula they are getting and their feeding schedule.

For more information about how to solve basic tube-feeding problems, download our troubleshooting guide.
Download Now

Staying Strong

DID YOU KNOW?
  • Half a million children and adults in the United States rely on feeding tubes, a number that is expected to increase by 8% over the next 3 years*
  • There are over 300 conditions and diseases that can require tube feeding in children†

*www.feedingtubeawarenessweek.org
†www.oleyfoundation.org

You’re not alone.
But sometimes you might feel like it.
Whether you’re a Mom, Dad, Grandma, Grandpa or any other loving caregiver of a tube-fed child, you know how hard it can sometimes be to stay strong. With day-to-day challenges and all the worries, it’s easy to feel overwhelmed and drained.

NOURISHMENT FOR YOU

Inspirational Words
“We do not need magic to change the world, we carry all the power we need inside ourselves already: we have the power to imagine better.” —JK Rowling, author of the best-selling Harry Potter books

“Life has two rules: #1 Never quit #2 Always remember rule #1.”

“I remind myself that this is for my child, the most important person in my life.”

“You just do it...it’s so routine now that it seems natural.”

“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

The Power of One
Do one small thing for yourself each day. Take a hot shower, a 10-minute walk outside or have a conversation with someone who raises your spirits. Remembering to take a few moments to recharge yourself each day comes back to your child and your family in big ways.

Success Stories

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

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