From Surviving to Thriving

By Marion Armstrong, RD, CSP, Walnut Creek, CA

Editor’s note: Armstrong is a neonatal/pediatric dietitian who has worked for 30 years at Kaiser Permanente Medical Center. She is certified as a specialist in pediatric nutrition through the American Dietetic Association. Armstrong’s advice to those who want to support parents whose infants are in the NICU is to understand that feeding is particularly stressful when weight gain is needed to prepare for surgery. Offering emotional support and positive encouragement to parents in this situation is invaluable in helping them cope.

Shortly after your baby was born, she was taken to the Newborn Intensive Care Unit (NICU). You may feel overwhelmed. That’s typical. I work as a pediatric registered dietitian in a NICU and every day, when I look into parents’ eyes, I see that same feeling. I can’t make all of that stress go away, but I can offer some insight into a very common and urgent concern for parents of babies in the NICU: feeding.

I confess that I often find myself gravitating towards infants with Down syndrome in the NICU. I hold a special place in my heart for them because of my long-time relationship with a self-advocate and dear family friend. Not surprisingly, I want to help babies with DS (and all babies in the NICU) get the best possible start in life.

If an infant has breathing problems or is in respiratory distress, it usually means admission to the NICU. When you visit the NICU, you will find a lot of activity and the sound of monitors and ventilators. This may be scary. You will also find a team of health care providers — a neonatologist, nurse, respiratory therapist, physical therapist, social worker, pharmacist, dietitian and discharge planner — who share their expertise and work together to provide optimal care for your baby. The dietitian’s role on the team is to carefully follow your baby to make sure her nutritional needs are met and that she is appropriately gaining weight. I consider myself as a resource to parents and encourage them to ask to speak to me if they have questions.

Each day in the NICU, the dietitian monitors how much weight the babies gain, how much formula or breast milk they take, how they receive their nutrition, and how well they tolerate their feedings. My goal is for babies to gain 20 to 30 grams/day. (Thirty grams is equal to about one ounce of weight. If you hold 11 pennies in your hand, they weigh about an ounce.) Babies gain and lose weight each day — just like the rest of us. The best way to evaluate weight gain is as an average over a week. Generally, babies will lose about 10 percent of their birth weight before they start to gain weight. So don’t be alarmed when you hear your baby has lost a little weight at first. That’s expected. She’ll start to regain weight in week two.

The nutritional needs of babies with DS are no different than a baby without that extra chromosome. Most babies with DS will be able to establish breast or bottle feeding without difficulty. However, if your baby’s breathing issues are more involved, the team needs to consider alternative methods to feed your baby. For example, if a baby is on a ventilator, the pharmacy will make a solution of macronutrients (protein, carbohydrate and fat), vitamins, minerals and trace elements so your baby can get her nutrition via a parenteral route or through her vein.

If your baby is being fed this way (parenterally), we will gradually begin to add breast milk or formula using a tube that goes from her nose to her stomach. If the baby is able to do so, she can try breast or bottle feeding. The neonatologist works with the dietitian to determine when your baby is ready for this kind of nutrition. A baby who has received parenteral nutrition will need to gradually take all nutrition other ways. It is not uncommon for two methods of feeding to overlap for a time.

Bottle and breast feeding can be a challenge for babies with DS. Many have a weak suck due to low muscle tone in their mouths, or tire easily from the work of eating. This is especially true for babies who also have a heart problem at birth. It can be a challenge for your baby to take in enough calories to gain weight. The dietitian’s job is to figure out how to concentrate or fortify the feedings to provide more calories and nutrients per ounce until the baby can increase the volume they consume. I always encourage moms to provide breast milk for their babies, as this is considered the gold standard for infant nutrition. Even if infants need to be on parenteral nutrition for a period of time, I try to get moms on board by pumping breast milk for the future. Once your baby’s suck is stronger, she will take in more volume and demonstrate she can gain weight. When that happens, the extra nutrition can be decreased or stopped altogether. Some babies do go home on feeding tubes. If so, we teach the parent how to do this. Most babies, though, go home nursing or using a bottle.

Rest assured, the pediatric dietitian in the NICU carefully follows your baby to make sure she is meeting her nutritional needs and growing and gaining on track. Dietitians plot weight gain, length and head circumference weekly on a growth chart. As a rule of thumb, your baby’s weight should double from birth weight to six months of age and triple by their first birthday. I like to show parents these growth charts each week. Parents find it reassuring to see the visual picture of their baby’s growth. It also gives me an opportunity to find out what questions parents have and to hear about their experience.

Before your baby goes home, the dietitian reviews with you the information you need to help your baby continue to gain weight and grow. If babies need a special formula or a high calorie recipe, I will write that out and review it. If a special formula is needed, I can provide information about where it can be purchased. Most formulas can be purchased online and delivered to your home. If you have any questions or concerns about your baby’s feeding, this is a good time to ask. Be sure you know who to call if you have a question about nutrition after your baby goes home.

In our NICU, we follow up with infants three to six months after they leave the hospital to go home. At the follow-up clinic, a team of providers — the neonatologist, nurse case manager, social worker, physical therapist and I — will see you and your baby again. It’s a great reward to see how much the babies thrive and grow!