Feeding from NICU to Home: A Preemie’s Journey
Technically Prematurity Awareness Month is over, but we need to spread awareness all year round ! I was so thrilled to connect with Ally Gore, a neonatal SLP. Like a unicorn, I was not sure if they even existed. Ally works in a level III NICU, with her masters degree in speech-langauge pathology, is a certified lactation counselor and her experience prior to the NICU was in early childhood intervention with infants and toddlers with developmental delays and disabilities in their homes after discharge from the NICU. I think parents of premature babies need more guidance before leaving the NICU in regards to feeding as we are often left to our own devices, with SLP who do not specialize in feeding, asking a pediatrician who has very little experience with preemies, or waiting several months to get an appointment at a well respected feeding clinic. Ally is my kind of girl and I feel like she understood our situation since Adeline has almost every barrier she listed below. People wonder why she is not eating. She is passionate about the developmental care of preterm infants and their families in the neonatal intensive care unit and she created Talk To Me Preemie, a blog and site for the care of preterm infants. If you are a parent of a preemie, you need Ally Gore in your life!
The process to feeding by mouth: a long journey
The largest misconception I hear around feeding is that it begins when food enters the mouth, and ends when it hits the stomach. That’s what feeding entails, right? Putting food in your mouth and then swallowing it? Wrong! Feeding requires work from nearly every single system in our bodies, and begins far before food enters our mouths. This is particularly true for premature infants in the neonatal intensive care unit. Premature infant’s feeding journey begins before they are born, receiving their nutrition from their mother’s womb. When this process is disrupted through premature birth, an infant then needs a new way to get their nutritional needs met. For premature infants, this sometimes begins with total parenteral nutrition, or TPN. Parenteral nutrition is delivered through the infant’s veins. When an infant is stable enough to receive nutrition to their stomach, they will begin tube feeding. Typically, this is first started through what is called an orogastric tube, or OGT. This tube runs from the infant’s mouth all the way to their stomach, stretching through the esophagus. Depending on the infant’s respiratory status or support required, the tube will eventually be changed to a nasogastric tube, or NGT. An NGT runs from the infant’s nostril, down their esophagus, all the way to the stomach. An NGT allows the infant’s mouth to be free of tubes, and helps to support the infant through learning to feed orally. While an infant is tube-fed, they can practice sucking on a pacifier, “nuzzling” at the breast, or even begin bottle feeding.
Through tube feeding, it is recommended the infant, if possible, receive an exclusive human milk diet. Mothers can pump or express their own breast milk for their infant to receive through the tube, or the infant may receive human donor milk. Some mothers, for a variety of reasons, may not be able to provide their infant with their own milk. This could be due to medications the mother is on, infant digestive issues, low milk supply, and many other reasons. Medical teams work together to ensure that premature infants are receiving the best nutrition possible, no matter the type of milk provided.
Feeding by mouth: a complicated process
Once an infant is cleared to start feeding by mouth, a process called cue-based feeding begins. As opposed to volume-driven feeding where the success of the feeding is measured in volume intake, success in cue-based feeding is measured in safety, infant-feeder communication, and respect for the infant’s limits. This is the process through which premature infants, over time, learn how to suck, swallow, and breathe safely. The attainment of full oral feeds through cue-based feeding can take anywhere from days, to weeks, to months. If the process of learning to feed by mouth is pleasant, stress-free, and safe, the infant will learn to enjoy feeding, and may be discharged home taking all of their bottles, or breastfeeding. Cue-based feeding involves both the infant and the feeder (be it mom, dad, nurse, therapist, etc.) in constant communication with each other. The infant communicates with the feeder throughout the feeding, and it is the feeder’s responsibility to make changes throughout according to the infant’s behaviors.
While this process seems simply put, it is everything but. Imagine sucking, swallowing, and then breathing all within one second’s time. Not easy! Although most infants learn the process of SSB (sucking-swallowingbreathing) with time, not every premature infant goes home feeding by mouth. Let’s take a moment to walk through what factors might make feeding difficult or even impossible for premature infants.
One common reason why premature infants may have short and/or long-term struggles with feeding are due to previous negative experiences in the NICU. Think about what an infant might go through before food ever touches their mouth: multiple intubations, application of adhesives for tubes (and then subsequent removal), and frequent suctioning. All of these negative encounters involving the face and mouth can leave a long-lasting impression with infants that touch to the face and mouth is negative. When it is then time for oral feeds to begin, infants may be reluctant or refuse to eat. There are many other factors that may play into this process or sequence of events; not every premature infant is the same. There are several things caregivers can do to reduce the chance an infant will develop an aversion to feeding from past negative experiences. These can include providing oral cares with colostrum/expressed breast milk, providing a pacifier for practice sucking and to promote selfsoothing, allowing an infant to explore their mouth with their hands, limiting unnecessary suctioning/wiping of the mouth and face, and offering non-pharmacological pain reducing interventions with painful procedures.
Recognize: Assess baby's readiness (cues, alertness, tone, breathing pattern, etc.)
Read: Respond to infant's communications (stress, safety, pleasantness, etc.)
Reflect: On the feeding experience (was the feeding successful, stressful, safe?) Feeding involves nearly every system in the body. Below are listed several major systems that play a role in learning to feed.
Complications in one or multiple of these areas can make feeding difficult or impossible.
Gastroenterological System: affects absorption of nutrients and digestion. The GI system impacts how the infant tolerates food, vomiting, and /or reflux, etc.
Respiratory System: supports breathing while eating, a complicated and taxing process which requires a lot o f work to control and sustain. The respiratory system is often compromised for preterm infants and can be complicated by chronic lung disease or bronchopulmonary dysplasia.
Motor System: supports posture, tone, strength, stability of all muscles in the body, including not only the arms and legs, but the trunk and diaphragm used for breathing. Premature infants often demonstrate decreased tone and display difficulties in maintaining postures ideal for feeding independently.
Neurological System: supports the ability to maintain alertness, initiates communication of hunger cues, controls reflexes used for feeding (rooting and sucking), and may complicate the function of structures used for feeding and swallowing.
Cardiovascular System: supports oxygenation, respirations, and breathing, and may impact stamina for feeding, among other things. Heart complications can make the SSB pattern difficult, and can lead to weight loss, among other things.
Headed home: the journey continues
Now that we have discussed the complex process of feeding in the NICU, let’s think about feeding for infants after discharge to home. Some families see issues with feeding for their preemies about 2-4 months after birth, which is typically after they have been discharged from the NICU. This could be due to the fact that the sucking reflex integrates at this time. This means that sucking is no longer a reflex (like when the doctor hits your knee and your leg goes flying up in the air), and turns volitional, or voluntary. At this point in time, the infant choosesto suck/eat, instead of being something they reflexively do. Here is where sucking and eating can get tricky. If an infant has had difficult, stressful, negative, or even painful past feeding experiences, an infant may now choose to not feed. Infants may start refusing their bottle, swatting at the bottle, gagging when the bottle enters their mouth, or display a number of other signs of aversion. Oral aversion can lead to weight loss, malnutrition, maladaptive feeding behaviors, and stress for the entire family. During the first few months of life, infants learn to explore their world through their mouth. It is important that infants be allowed to suck on their fingers, hands, toes, as well as other textures through teethers and toys. Encourage your infant to bring their hands to their mouth and bite/chew on fun toys.
The AAP recommends that once an infant has reached 6 months of age, solid food can be introduced. This process may be delayed if an infant is not yet sitting independently by 6 months of age. As discussed earlier, many systems in the body contribute to successful feeding and eating. Motor control and stability of the trunk and head/neck is important for the safety of feeding for infants and children.
Here are some quick tips for introducing solid foods to your former preterm infant:
Getting help: you’re not in this alone
If an infant displays oral aversion, or any other difficulties with feeding and/or swallowing, the family should seek help. There are a number of different types of feeding therapies families can explore for their child. More intensive feeding programs include inpatient programs, where the infant is admitted to the hospital for 24/7 observation. Another type of intensive feeding program is a day-program. With this type of treatment, the child typically spends most of their day at the hospital or clinic, but may go home for the evening, or even the entire weekend. Less intensive programs include outpatient therapy at a clinic or hospital, home health programs (where a therapist comes to the family’s home and serves children usually through the age of 18), or Early Childhood Intervention. Early Childhood Intervention is a state funded program that serves infants and toddlers ages birth to three in their homes. The most important part of feeding therapy is finding a therapist who is competent in pediatric feeding disorders, and who the family trusts/gets along with.
If a family has concerns, no matter how small, about their infant’s feeding or swallowing, they should seek an evaluation through one of the places listed above. An evaluation may include a clinical feeding evaluation, which means that the therapist watches the infant eat, asks questions, and assesses the child’s skills in the clinic or home. A clinical feeding evaluation is typically sufficient enough to assess oral motor skills and feeding behaviors. If indicated, the therapist may refer the child for an instrumental evaluation. This can include a Videoflouroscopic Swallow Study (VFSS), or a Fiberoptic Endoscopic Evaluation of the Swallow (FEES). Each of these tests can assess the child’s skills using technology to see how the swallow functions from the inside of the body. An instrumental evaluation can see how the food or liquid enters the body, travels, and where it ends up. If there are questions regarding motility of food past the stomach (in the intestines) or to the stomach (in the esophagus), there are several other tests that can be ordered.
If aspiration (when food or liquid enters the airway instead of the digestive tract) is demonstrated on either the VFSS test or the FEES test, then a feeding therapist may offer a variety of treatments to reduce and/or eliminate the aspiration. If the infant or child is not safe to eat any or all food/liquid by mouth, an alternative means for nutrition may be recommended by the child’s medical team.
Alternative means for nutrition means that the child requires a different way to get nutrition/food. These might be parenteral nutrition (via IV), an OGT, an NGT, or a gastronomy tube (there are several types of g-tubes). There are several misconceptions around feeding tubes, the most common being that children with feeding tubes don’t consume anything by mouth. Depending on the child’s safety, ability, or desire to eat, and infant might be able to take the majority of their nutrition by mouth and may only need the tube for some supplementation.
Feeding struggles in the NICU, infancy, and throughout childhood can have lifelong consequences. These might include oral aversion, extremely picky eating, sensory processing difficulties, aspiration, malnutrition, altered motor skills, and mealtime stress for the entire family. (NOTE: even if everyone does every single thing right, feeding difficulties and disorders can still persist. Feeding disorders are no one’s fault). As discussed extensively in this post, feeding is a complex and complicated process. Several systems are involved and affected, no matter the way in which a child is nourished. Parents of children with feeding disorders or difficulties can undergo debilitating stress surrounding food, mealtimes, eating, and even social gatherings where food is served. Each family is different, and their journey is unique. Children can be fed and get their nutritional needs met through a variety of ways.
Resources for Parents
Website: www.feedingmatters.org •
Book: Helping Your Child with Extreme Picky Eating: A Step-by-Step Guide for Overcoming Selective Eating, Food Aversion, and Feeding Disorders by: Katja Rowell MD, Jenny McGlothlin MS CCC-SLP
Book: Raising a Healthy, Happy Eater: A Parent’s Handbook: A Stage-by-Stage Guide to Setting Your Child on the Path to Adventurous Eating by: Nimali Fernando MD MPH and Melanie Potock MA CCC-SLP
Ally Gore MS CCC-SLP, CLC Neonatal Therapist and Developmental Care Specialist Creator of Talk To Me Preemie, a blog and site for the care of preterm infants