Children have poor weight gain when they can’t eat enough by mouth to meet their needs. Tell your child’s doctor about any feeding problems your child is having. Some babies, like those with breathing problems, struggle to suck and swallow. Breathing and eating at the same time is hard work! Your dietitian can help you decide if a different bottle nipple might help. Give short rest breaks. If the doctor has ordered oxygen during feeding, use it!

Another common feeding problem is gastroesophageal reflux disease (GERD). Food travels from the mouth, down the esophagus (the tube that leads from the mouth into the stomach), into the stomach. When food or liquid in the stomach backs up into the esophagus, it is called gastroesophageal reflux. Many babies have GERD, since the muscles that close the opening from the esophagus into the stomach are still weak. In children with breathing disorders, GERD can be made worse by the forceful movements of the diaphragm and abdominal muscles that occur with labored breathing. There are drugs to treat GERD, but sometimes surgery is needed. If your child is diagnosed with a lung disorder, it is a good idea to discuss nutrition with your pulmonologist and to choose a care team that works closely with their gastro-intestinal (GI) department or have their own feeding teams to consult.

Even with careful feeding and supplementation, some patients will require a feeding tube to meet their caloric needs.

Feeding Babies
When using breast milk, extra calories may be needed. Breast milk is a good diet for the patient because it contains highly digestible nutrients and increases immunity to infection. We certainly do not want to discourage you from breastfeeding if you are able to do so. However, if your baby has GERD or shows aspiration on a swallow study, you may have to pump the breast milk and thicken it to reduce the aspiration. If your baby is not growing well with breast milk alone, you may have to mix the breast milk with special formulas to increase the caloric intake or supplement with formula through a bottle or in some cases, through tube feedings.

When using infant formula, a special formula or thicker mixture may be needed to add calories. BE SURE you know how to mix your baby’s formula. Follow the directions you have been given. Careless mixing can cause harm!

AVOID ADDING CEREALS, FATS OR JUICE WITHOUT CONSULTING YOUR GI TEAM. Your baby needs only the breast milk or formula. LATER, foods like cereal and fruit can be added. Your doctor and dietitian will help you choose foods that will give your baby the best calories. Until your baby is 1-year-old, the weight, length, and head size should be measured every time you visit the doctor. Ask to see your child’s growth chart at every visit and if your child drops in growth chart percentage or does not grow well, make sure you get a consultation with a nutritionist or feeding specialist that is familiar with pediatric lung disease patients.

Feeding Children
If your child is eating table foods, closely watch what and how much your child eats and how well your child is growing. Set regular meal and snack times. If you can, offer a balanced, wide choice of healthy foods then let your child choose what and how much to eat. If high-calorie supplements are needed, your child’s doctor or dietitian will help you decide which type and how much to give. Believe it or not, the wrong supplement can make it harder for your child to breathe!

Feeding Tubes and Buttons
Some children need to get some or all of their foods and liquids through a tube/button. There are many reasons. These children might…

• Not be able to take in enough food and liquid to gain enough weight
• Have problems chewing or swallowing so that food goes into their lungs instead of their stomachs
• Not be able to use all of the eaten foods because of the disease (malabsorption)
• Have a problem with food coming back up from the stomach (reflux)
• Or, they need to conserve energy (tube feedings provide breathing relief)

The decision to insert a feeding tube can be an intimidating one for parents. There are different types of feeding tubes/buttons used to give either some or all of the nutrients children need to grow.

Types of Feeding Tubes
Feeding tubes are broken down into a few different categories based on how they enter the body and where they feed into the body. The main tube types are:

• Nasogastric tube or NG-tube: This tube is inserted through the nose and feeds into the stomach. These are temporary tubes and will need to be changed and repositioned relatively often.
• Nasojejunal tube or NJ-tube: This tube is once again inserted in through the nose, but it is guided further down past the stomach and into one of the upper parts of the intestine called the jejunum.
• Gastrostomy tube or G-tube: This tube sometimes called a PEG (Percutaneous Endoscope Gastrostomy) tube because that is usually how they are placed. It enters through the abdominal wall and into the stomach.
• Gastrostomy-Jejunostomy or GJ-tube: This tube sometimes called a Transgastric-Jejunal or TJ tube enters through the stomach like the gastrostomy tube, but is longer and is guided down into the jejunum. These tubes are often used when the child needs to be fed into the jejunum, but also needs a port into the stomach. With this tube, there are two options one for the g-port and a second for the j-port.
• Jejunostomy or J-tube: This tube is placed through the abdominal wall straight to the jejunum. Some children get bolus feedings. They get their feedings through the tube/button all at the same time (like a meal or snack). Other children get their feedings through the tube/button slowly over a longer period (like while sleeping at night). The formula is poured into a feeding bag, travels through the infusion tube, and enters the child through the feeding tube/button. You can adjust how quickly or slowly your child gets the feeding. Some children get some of both types of feedings.

The feeding supplies will come from your doctor’s office, DME vendor, or both. The formulas used for tube feedings are patient-specific and are often supplied by the DME vendor, a pharmacy, or the Special Supplemental Nutrition Program for Women, Infants, and Children (WIC).

Recommendations
Some feeding supplies that have been recommended by parents include:

• AMT MiniONE Balloon Button™. The MiniONE™ Balloon Button** combines the features of a button and the ease of placement of a balloon device. The MiniONE™ Balloon Button is sure to measure up to your patient’s size requirement. Available in 77 sizes with a wide variety of lengths (0.8cm-6.5cm) and diameter sizes (12FR-24FR). The MiniONE™ Balloon Button is also convenient as it is compatible with Mic-Key® Feeding Sets, in addition to all AMT MiniONE™ Feeding Sets (both balloon & non-balloon).
• AMT Clamp™. Maintain A Tight Hold On Feeding Devices — this connector holds the feeding bag and the tube extension together.
• Exacta-Med Syringes. Available from Baxa, these syringe-type dispensers are fantastic for oral or enteral feeders. The graduations do not wash off, even after repeated uses and washings. All dispensers come with a plug for the tip, so you can pull up medications and cap for travel. To order you’ll need to set up an account, and place a minimum order of 100 dispensers, but the cost is extremely reasonable (around $25.00).
• Grip-Loks. Grip-Lok™ is a stabilization and securement device strong enough to lock catheters, tubes and lines securely in place, yet versatile enough for almost any securement situation.
  Item can be ordered through Medline.