Problem-Solving: Feeding on NCPAP and HFNC in NICU

QUESTION:

I have had an incredibly difficult time navigating our neonatologists. I gave a detailed presentation to our medical director and other various NICU staff members regarding feeding expectations for our infants on prolonged or increased respiratory support (specifically HFNC over 2 liters). Obviously, these infants are complex and their readiness to engage in bottle feeding can not be perceived as identical to one another. However, much to my dismay, we now have a policy set in place that we will attempt po bottle feeding on infants who are on HFNC 4L or less. Obviously, my assessment is involved, but not always taken seriously. I was provided this document to refute my claims: Effects of Nasal Continuous Positive Airway Pressure and High-Flow Nasal Cannula on Sucking, Swallowing, and Breathing during Bottle-Feeding in Lambs. Additionally, the neonatologists seem to only accept evidence provided by a physician and/or a Cochrane review. I have continuously brought up ‘no evidence of harm’ is not the same as ‘evidence of safety.’ I am fortunate to receive standing orders on all admits to our NICU, further encouraging a preventative approach with all admitted infants. Since the criteria to be a level 3 NICU must involve therapy services, I often feel as if my impressions are just a ‘check off the list’ and the providers will sometimes instruct the staff to bottle feed infants who are not appropriate candidates. Providers also still believe that there is a ‘critical window’ that infants must engage in po feeding within a certain time frame. I know this is not factual but I am not able to move our physicians away from this thought process! We have taken short strides forward and I have fought, and I am continuing to fight, very hard to protect our fragile infants and demonstrate my worth. Unfortunately, I do feel as if getting the infant discharged as soon as the provider deems appropriate, despite difficulties with po feeding, is a driving force. It is almost as if the infant’s problems are pushed onto the pediatrician. I understand that physicians must experience pressure to discharge infants secondary to changes in our healthcare culture. I know I am not alone in this battle and that other therapists must share similar experiences as well as similar feelings. I am taking small steps forward in forging positive relationships with our providers. Any advice would be greatly appreciated!

There are a handful of pertinent articles accessible via a search. One done on the effect of NCPAP under videofluoroscopy, was done by Louisa Ferrara and her NICU colleagues in NY. Their preliminary results were so worrisome that the neonatologists stopped the study.

Unfortunately, often the conclusion regarding the “safety” and the “tolerance” of NICU infants feeding on NCPAP is determined by volume and perhaps lack of overt or symptomatic decompensation. This study will hopefully re-direct thinking about the impact of the The study determined that “Oral feeding while on NCPAP significantly increases the risk of laryngeal penetration and tracheal aspiration events,” and recommended caution when initiating oral feedings on NCPAP. The conclusions, unfortunately, did not focus on changes in swallowing physiology under NCPAP, which would have been instructive. It  is not only aspiration that is worrisome but also untoward effects on physiology that increase risk for airway invasion.

My experience in the NICU suggests that, even for those infants who do not frankly penetrate or aspirate under NCPAP in the “moment” in radiology, we are likely to see adverse effects on swallowing physiology. That, for me, is the most compelling takeaway from this study. Bonnie Martin-Harris has taught us that aspiration or penetration is neither sufficient nor necessary for a swallowing impairment – meaning that our focus needs to be on physiology, because impaired or altered physiology and its etiology(ies) create the conditions under which bolus mis-direction can or does occur.

It is not uncommon for neonates to evidence changes in swallowing physiology due to respiratory co-morbidities, even when stable on less support or indeed on unassisted room air. With infants requiring NCPAP or HHFNC, our assessment of risk related to PO feeding or not PO feeding must consider many factors beyond level of respiratory support required.

This is a practice dilemma for all NICU SLPs. The pressure to get infants out of the NICU often drives care decisions, especially when it comes to PO feeding.

Many neonatologists incorrectly assume that there is a window within which our preterms must “experience” PO feeding or they will “miss that critical window and never learn”. So, despite co-morbidities and often respiratory needs that are paramount, infants are being asked to feed. That well-intentioned paradigm is based on writings from Gesell back in the 60s that talked about a “critical window” for learning to eat. Those times were different in many ways as was the population being described. Early intervention is now a standard of care in NICUs to support readiness. Our goal is for neonatal care that is neuro-protective and promotes positive overcomes, and recognition of safety issues inherent in the complex task of PO feeding even when weaned from CPAP and HFNC —they clearly call for reconsideration of that paradigm, which, perhaps to a large part, underlies the thinking that leads to “pushing PO” and orders to PO on CPAP and HFNC. Many of our former preterms do indeed learn to feed orally when respiratory co-morbidities better permit, once weaned, and from my experience, do so with much less stress and much more safely.

Advocating for safety for these infants is a critical one for SLPs in the NICU and PICU. Current NICU technology has advanced to the point that more infants are surviving and yet many are requiring extended periods of CPAP and HFNC. Many extremely preterm infants in our NICU with CLD at post-term (41 weeks PMA +) remain dependent on CPAP or HFNC. My NICU team has had good collaborative conversations about the benefits of ST being involved to maintain a positive oral-sensory environment, promoting the oral-sensory-motor components that are the underpinnings for future PO feeding, beginning early to foreshadow for parents the swallowing, breathing and postural skills needed, and helping families also support those components, versus attempting PO feeding when the infant clearly is struggling with respiratory stability. Clearly, medical co-morbidities predispose an infant in the NICU to PO feeding problems. Multiple papers have studied that. Those infants with the greatest respiratory comorbidities, often those born < 28 weeks’ gestation and BW < 1000 grams, are most likely to require CPAP and/or HFNC at those post-menstrual ages when PO feeding is often attempted. Sick newborns may also present similar issues, secondary to their co-morbidities.

If the infant has such respiratory needs that he requires CPAP, or a HFNC, one must ask if PO feeding is really a priority for that infant at that time. The ability to reconfigure the pharynx from a respiratory tract and back to an alimentary tract with precise timing and coordination surrounding each swallow is a concern. When we look objectively in radiology during an instrumental assessment of swallowing physiology, even infants with CLD stable on RA have altered or impaired swallowing physiology as a direct result of their CLD. The bolus mis-direction and resulting aspiration we often observe is typically silent. In the adult population in the most recent information I have seen (Garon et al, 2009 Journal of Neuroscience Nursing) reported that of 2000 adults studied with a variety of co-morbid conditions, including COPD, 54.5% of those who aspirated did so silently. The data I have collected thus far for NICU infants suggests strongly to me that even the data from Arvedson et al in 1994 likely dose not capture the risk for our current population of infants to silently aspirate; her study population was not only less involved from a respiratory perspective back in 1994 than the population we see today, but it also was a population composed of not just infants.

The need for an “urgent breath” often can predispose an infant with increased work of breathing to silently mis-direct the bolus into the airway during the swallow. The ability of the infant to close the glottis against the driving force of the respiratory support, while breathing with increased effort or with an increased respiratory rate, which effectively creates air hunger, and yet still maintain glottic closure throughout the duration of the swallow, would likely be precarious. Given the infant’s likelihood of baseline tachypnea and increased WOB, the dynamic adjustments of the airway surrounding the swallow are likely to be disrupted and create uncoupling of swallowing and breathing. Without objective data on the impact of CPAP or HFNC on swallowing physiology we cannot conclude that feeding under these conditions is “safe”. Indeed, infants for whom we do not necessarily witness aspiration during a dynamic swallow study, may indeed show alterations in swallowing physiology that may indeed predispose them to airway invasion under “the right conditions” during PO feeding (changes in nipple flow, changes in position, changes in respiratory support, sucking rate/length, timeliness and depth of breathing pauses for example) so it isn’t even just about aspiration but the potential impact of CPAP and HFNC on swallowing physiology. The fact that the infants “eat” and “are fed” and “transferred volume” does not equate to “safe feeding”.

We must of course consider the physiologic stress likely to occur when the infant experiences “feeding” when they still require NCPAP and or HFNC. It is highly possible the stress of trying to breathe and coordinate a swallow may lay down neural pathways that move the infant away from wanting to eat, by wiring those sensory-motor pathways that lead to current and/or future maladaptive feeding behaviors. We know that studies looking at stress in preterms have shown an association with adverse changes in brain structure on MRIs.

In the NICU seminars I teach, this body of evidence and our dilemma are always part of our problem-solving discussions. I am fortunate after 33 years in the NICU to be part of a team that is trying to look beyond “getting them to eat” and learning to partner with ST to guide practice while the evidence-base is emerging. NICU SLPs are in a key role to dialogue, problem-solve and focus on safety and neuroprotection as essential part of this practice issue which confronts every neonatal team.

Jim Coyle has said: “There is one rule of thumb: there is no single parameter that qualifies or disqualifies a patient for anything or that confirms or refutes risk in and of itself. It is the combination of parameters that the clinician uses to estimate risk and to form a diagnostic impression and complete a differential. That is what we teach students and trained clinicians should be emphasizing. Grab your water bottle and go for a 2-3-mile run. After 15 minutes when at your aerobic steady state and RR is up, try to take a drink of water and observe what you need to do to orchestrate the whole thing. Yet you are healthy and mature and not recovering from respiratory issues. Very illuminating.”

The dialogue needs to continue, and we need measures of oral feeding that go beyond intake, and methods of assessment that capture critical variables, including objective assessment of physiology. And so, we remain in the “gray zone” as I like to call it, where there are more questions than answers, which is where most NICU therapists live. We must therefore consider theoretical constructs related to neonatal swallowing, continue to search for the evidence, use critical reflective thinking and dialogue with our neonatal colleagues.

I hope this is helpful.

Catherine

 

 

Scholarship Opportunity: Winner announced!

Dr. Brown’s® Medical recently offered a unique educational opportunity. The “Scholarship Opportunity” was for one individual to attend a week long, three course Catherine Shaker seminar.

Congratulations to Lydia Coley, recipient of The Dr. Brown’s Scholarship to attend the Austin 2018 Shaker Seminars.

With her permission, I am sharing part of her application statement:

“When your heart is all in, experiences vacillate on a pendulum from extreme satisfaction and fulfillment to disheartenment – the latter driving the questions what can change. Illustrating the dichotomy is the family who is receptive to supporting their infant based on a comprehensive team approach where infant and family are the center of care, versus care that leaves any party feeling alienated, conflicted, or dissatisfied. As pediatric practitioners, we’re charged with serving our patients and families in a holistic manner. This means using our hearts to drive ongoing continuous improvements within ourselves, our practices, and our communities, so that each and every experience is optimal.

Clinically, each experience contributes to ongoing change as an opportunity for improvement. I’ve been offered the opportunity to support a medically complex infant in a well-established intensive care unit where all the resources are available, to see how those recommendations evolve when going home to limited resources, to now participating in an environment where clinical resources are emerging–resources of tools, objective measures, literature, clinical research, continuing education, products, family services, and new ways of facilitating collaborative care support personal clinical growth and the services I can provide to my patient, family, team, and extended clinical family.

The more I learn the more I’m inspired by how much more there is to learn!”

Lydia’s message reflects a passion for learning that inspires clinical excellence.                        Congratulations, Lydia!

Research Corner: Resources for your professional library

These are two wonderful resources to add to your professional library!

Feed Your Baby and Toddler Right: Early eating and drinking skills encourage the best development

Book by Diane Bahr MS CCC-SLP CIMI     Published: 2018

 

Functional Assessment & Remediation of Tethered Oral Tissues (TOTs)

Book by Robyn Merkel-Walsh and Lori Overland      Published: 2018

I hope you enjoy them as much I have!

 

Problem-Solving: PO feeding post extubation in the NICU

QUESTION:

What are your current practices regarding oral feeding infants who have been recently extubated? Understandably, these infants typically don’t cue well for a period, continue to demonstrate respiratory complications, but are often asked by providers to attempt oral trials/nippling before the infant is truly ready. Please understand that I am aware that every assessment should be individualized, and we should first take into consideration how the infant tolerates handling, NNS, etc. However, since I have spent time in adult acute care, I do not complete a swallow assessment in this population until 24 hours post extubation. Delaying swallow evaluations until 24 hours after extubation would aid in improved reduction of laryngeal edema and improved vocal quality, return of pharyngeal/laryngeal sensation, improves breathing, with an overall improvement in medical stability. It is also known that infants are at a much higher risk for silent aspiration. Do you apply these principles to our fragile infants in the NICU? I am searching for more support regarding why not pushing these babies, who may have even delivered to term but were recently intubated/extubated, is so vital for their developmental outcomes. Thank you for any support!

ANSWER:

I work in a large level IV NICU, so we see the sickest and most fragile preterms, some of those born at 22 weeks. Intubation and ventilation are avoided as much as possible, with many infants being stabilized on NIPPV or CPAP in the delivery room.

Those NICU infants who are intubated, once extubated, often require levels of respiratory support that continue to delay PO feeding. Unlike adult ICU, it is uncommon in NICU to be consulted on an infant recently extubated (within 24 hours) who now has orders to PO feed. Though it can happen, unfortunately.

Once an infant is stable on NIPPV, we will be consulted to begin support towards/readiness for oral feeding. That is great because we are part of the decisions going forward then. Even sick newborns recently extubated will often have sequelae, especially respiratory (but also perhaps neuro, GI, airway, cardiac and/or neuromotor) that create risk for airway invasion with expectations of early PO feeding. This is not always appreciated by the NICU medical team, despite their best of intentions, i.e., “lets’ get him feeding” so “he can get home”. Part of your role will be protecting these infants from good intentions gone awry through collegial conservation, bringing the research about feeding outcomes and neuroprotection, and co-morbidities that create inherent risk for bolus mis-direction.

I like to conceptualize the feeding-related services we provide in the NICU as “feeding readiness” and “supporting safe/functional PO feeding” to help neonatal nurses and neonatologists better understand not only the value we add to the NICU team, but also that learning to feed orally is not a “light bulb” moment – i.e., it’s not that all of a sudden the infant is ready . Unfortunately, well-intentioned but ill-timed, too early, stressful PO feedings may wire the infant’s brain away from eating, and indeed lead to later feeding aversions. The literature on feeding outcomes in former preterms includes reflections on the high percentage of former preemies with enduring feeding problems, far beyond the NICU. It also impacts the infant-parent relationship and multiple domains.

As you know, sick newborns who required intubation and ventilation cannot just bounce back, once extubated. The reasons for requiring intubation often have sequelae that adversely affect PO feeding. Fragile preterms would be fetuses experiencing motor learning and oral-motor learning in utero; their oral-motor movement patterns would be evolving in the context of the containment provided by the uterus, with hands on their face and in their mouth (and alternating touching the placenta per research). Careful attention must be paid to physiologic stability, especially its impact on WOB and RR., during all infant-guided readiness experiences Progression to pacifier offered via rooting response for sucking with co-regulated pacing, f/b tiny droplets of EBM on a pacifier offered via rooting response for purposeful swallows

All NICU infants need supportive infant-guided learning experiences outside of the uterus. These should most closely align with the ideal sensory-motor environment (intrauterine), and early extrauterine environment of the healthy term infant. Our challenge is to help caregivers embrace the critical importance of this step in the process toward PO feeding, whether a preterm or a sick newborn.

Prior to PO feeding, the benefits of mother’s milk (EBM) to the mucosa via tiny trace droplets to promote purposeful swallows and oral-sensory-motor mapping primes the sensory-motor system along of the preterm infant or sick newborn, as can nuzzling at the breast (kangaroo mother care). The key is that feeding readiness experiences should be offered when infant is at his best respiratory wise (both in terms of respiratory support being required and his WOB and RR), he is actively engaged and maintains physiologic stability, and should be offered using infant-guided principles of interaction. This may not fit the time line set to “get them feeding”. Resting the infant and use of co-regulated pacing to assure that respiratory stability is fostered from moment to moment, are essential to support a neuro-protective experience that promotes both safety and positive learning.

Neonatologists may push PO to get them PO feeding, let them “practice”. We recognize that, in the NICU, “practice” is not the key, but what is, is the experience, and how it is both offered and received by the preterm’s immature emerging neuronal pathways and oral-sensory-motor system, or the sick newborn’s altered systems. This must be considered in the context of that infant’s co-morbidities and the impact of those co-morbidities on the dynamic swallow. In the NICU, every experience matters, as I like to say. Practice in and of itself, only makes permanent the neuronal pathways that are recruited and mapped; it does not in and of itself create the pathways that underlie function or skill; it can unfortunately lead to maladaptive behavior and stress if done as a task and/or offered in a programmed way. Infant-guided experiences are essential to neuroprotection for all NICU infants.

I teach these concepts and their underpinnings in my NICU seminar, cite relevant research and clinical wisdom to help us have conversations with our NICU colleagues. Our goal is always to promote infant guided feeding and neuroprotection. The NICU is not an easy place to work, as passions and medical fragility run high. Every day l have conversations that require me to think deeply, be kind and patient but advocate for the infant. Along the way I have built relationships with neonatologists and nurses that create the opportunity for respectful conversations even when we disagree. As you continue to build relationships with your NICU team, focus on bringing the relevant research, having collegial conversations, and thinking along with nurses and neonatologists both during Rounds and during your sessions. That opens the door for changing the feeding culture, one day at a time.

 

Research Corner: Predicting Aspiration Risk in Children

Duncan, D. R., Mitchell, P. D., Larson, K., & Rosen, R. L. (2018). Presenting Signs and Symptoms do not Predict Aspiration Risk in Children. The Journal of Pediatrics.

Objectives

To determine if any presenting symptoms are associated with aspiration risk, and to evaluate the reliability of clinical feeding evaluation (CFE) in diagnosing aspiration compared with videofluoroscopic swallow study (VFSS).

Study design

We retrospectively reviewed records of children under 2 years of age who had evaluation for oropharyngeal dysphagia by CFE and VFSS at Boston Children’s Hospital and compared presenting symptoms, symptom timing, and CFE and VFSS results. We investigated the relationship between symptom presence and aspiration using the Fisher exact test and stepwise logistic regression with adjustment for comorbidities. CFE and VFSS results were compared using the McNemar test. Intervals from CFE to VFSS were compared using the Student t test.

Results

A total of 412 subjects with mean (±SD) age 8.9 ± 6.9 months were evaluated. No symptom, including timing relative to meals, predicted aspiration on VFSS. This lack of association between symptoms and VFSS results persisted even in the adjusted multivariate model. The sensitivity of CFE for predicting aspiration by VFSS was 44%. Patients with a reassuring CFE waited 28.2 ± 8.5 days longer for confirmatory VFSS compared with those with a concerning CFE (P < .05).

Conclusions

Presenting symptoms are varied in patients with aspiration and cannot be relied upon to determine which patients have aspiration on VFSS. The CFE does not have the sensitivity to consistently diagnose aspiration so a VFSS should be performed in persistently symptomatic patients.

 

Problem-Solving: Aerophagia in infant with cleft lip

QUESTION:

One of my friends just had a baby with a partial cleft lip. She is 6 weeks old and started having trouble with feeding last week. Her pediatrician feels like she is sucking too much air in when feeding. The mother has tried different bottles and nipples. She is on thin formula. She is also having diarrhea and her bottom is raw. Her pediatrician feels like it is caused from the air coming in from her cleft during bottle feeds. She has a cleft lip repair surgery date set in September. What recommendations should if give her? Applying chin support and pressure to cheeks to get a good lip seal? Thickening the formula to slow the flow rate?

Thank you for any advice!

ANSWER:

It is uncommon for a partial/incomplete cleft in isolation to lead to the feeding problems you describe. In my experience, an isolated cleft of the lip does not contribute to feeding problems in infants. It can, however, co-occur with other alterations in oral-motor/structural integrity. These would include: a cleft of the soft palate (even just the uvula) that is not readily apparent to the physician – it would alter the effectiveness of intra-oral suction and lead to ineffective compensatory sucking behaviors that may lead to air swallowing. Other possibilities are a tongue tie (posterior and/or anterior, as these often co-occur with clefts d/t timing of intrauterine aerodigestive structure formation; the tongue tie(s), if present, can lead to ineffective tongue-palate seal and again, air swallowing with each bolus, as well as fatigue and decreased transfer of milk. Another option is that there is co-occurring mandibular hypoplasia (a retruded and/or small jaw, as we used to call it – ENTs typically call it mandibular hypoplasia); this can lead again to poor tongue-palate seal, ineffective tongue patterns for sucking d/t altered intrauterine motor-learning by the tongue, and again compensatory sucking patterns that become maladaptive and not functional. Another possibility is a submucous cleft, which again may not be clear, and lead to ineffective suction, leading to the same maladaptations and adverse functional sequelae.

She may also have altered sucking or coordination patterns unrelated to any structural differences, just “co-occurring”, that has the same undesired results. For example, she may also have a prolonged sucking pattern that can lead to air swallowing. In that case, co-regulated pacing would support a more stable burst-pause pattern and avoid air swallowing,  or the flow are may be too fast, which can lead to swallowing air with each bolus, so a more controllable flow rate would help (i.e., slow flow). I would not thicken liquids or continue changing nipples, as her learning starts over each time, and some of that may be maladaptive. We really need is to understand the “whys” before we can determine what interventions would be indicated.

The loose stools also are concerning for poor formula tolerance or other GI issues that may further adversely affect feeding pleasure and growth. A consult with a pediatric SLP, ENT and GI would be beneficial to complete a thorough differential to find out what is contributing to her poor feeding.

Research Corner: Psychometric Properties of the Early Feeding Skills (EFS) Assessment Tool

Wanted to update you on a new manuscript about the EFS which I co-authored that is now in press with Advances in Neonatal Care.  Abstract below – Dr. Thoyre and I hope to see it published ahead of print in the next few weeks. We are very excited that the psychometrics of the EFS, demonstrating its reliability and validity, will soon be published. 

Psychometric Properties of the Early Feeding Skills (EFS) Assessment Tool Abstract

 Background: Supporting infants as they develop feeding skills is an essential component of neonatal and pediatric care. Selecting appropriate and supportive interventions begins with thorough assessment of the infant’s skills. The Early Feeding Skills (EFS) tool is a clinician-reported instrument developed to assess the emergence of early feeding skills and identify domains in need of intervention.

Purpose: The purpose of this study was to identify the factor structure of the EFS and test its psychometric properties, including internal consistency reliability and construct validity.

Methods: EFS-trained inter-professional clinicians in three settings scored 142 feeding observations of infants aged 33 to 50 weeks postmenstrual age. Redundant and rarely-endorsed items were removed. Factor-analysis methods clustered items into subscales. Construct validity was examined through the association of the EFS with (1) concurrently scored Infant-Driven Feeding Scale-Quality (IDFS-Q), (2) infant birth risk (gestational age), and (3) maturity (postmenstrual age).

Results: Principal components analysis with varimax rotation supported a 5-factor structure. The total EFS demonstrated good internal consistency reliability (Cronbach’s α = .81). The total EFS score had construct validity with the IDFS-Q (r = -.73; p < .01), and with gestational age of a subsample of premature infants (= .22; p < .05).

Implications for Practice: As a valid and reliable tool, the EFS can assist the inter-professional feeding team to organize feeding assessment and plan care.

Implications for Research: The strong psychometric properties of the EFS support its use in future research.

Please plan to join Dr. Suzanne Thoyre and I on August 15thand 16th for a Train-the-Trainer session on the EFS Tool in Atlanta, GA. Learn to use the EFS to effectively plan and provide an infant-guided approach to feeding. Simultaneously learn to train others back home to use the EFS to strengthen your unit’s feeding care. Review current research, the role of experience, dynamic systems theory, and feeding outcomes after NICU. Videotapes with enhanced audio of swallowing and breathing to learn key skill areas of the EFS: respiratory regulation, oral motor and swallowing function, physiologic stability, engagement, and change in coordination patterns of s-s-b as infants develop. Gain confidence scoring early feeding skills as not yet evident, emerging or established. Learn components of an infant-guided, co-regulated approach to feeding and contingent adaptations that make this approach so effective, using the EFS to plan individualized interventions. Receive teaching resources to take back to your unit to train others to use the EFS. As a group, we will network and navigate challenging issues and role-model a collaborative feeding practice. 

Bring yourself, your colleagues, or your whole feeding team! We are aiming for a multi-professional group, putting our heads together to improve feeding experiences for our most vulnerable infants. We hope to see you in Atlanta! 

 

 

 

 

Problem Solving: Infant with Laryngomalacia

QUESTION: I am providing swallowing therapy in a rural EI home.  The PT is a 7 month old male with a history of plagiocephaly, laryngomalacia and glottal surgery.    He demonstrated coughing with feedings and apneic episodes (awake and asleep), prior to surgery with no cyanotic episodes.  When I started treatment, he was 4 months old, post surgery and MBS.

The MBS reported:  Thin liquid-not enough swallows to be diagnostic due to limited latch.   Thickened 1Tbs to 2oz.-consistent, shallow swallows with small volume penetration, which eventually led to silent aspiration.  Suspected aspiration was due to large bolus size as a Level 3 MAM nipple was used.  Thickened 1 to 1 with level 3 nipple-WFL extraction and bolus size, timely swallow initiation, vallecular and pyriform residue observed but PT cleared.

He would not accept the 1-1 thickened feeds at home, so it was decreased 3 to 1 using oatmeal cereal.

The feeding clinic at nearest pediatric hospital recommended introducing plastic juice box and NUK brush to address his oral aversion to the bottle.  In therapy, I instead coached parents to focus on gentle bottle feedings, anticipating readiness to accept bottle and reading the baby’s cues during the feedings and taking breaks when needed, keeping feedings at 15-20 minutes.  This has proved successful.  He takes 3-4 oz at a feeding with 24 plus oz per day.   Mom has been able to return to work and the sitter can also confidently feed him the bottle. He is accepting small amounts of baby food and meltables.  The ENT recently tried to eliminate Zantac but he presented with increase emesis. He is back on the Zantac.  He continues to do best during feedings if he falls asleep with pacifier and then mom presents bottle.  He often reaches for the bottle, smiling and puts in his mouth, but intake is higher and pacing smoother with “sleepy feedings.”  Any thoughts on this????

My other question:  We have decreased thickening to 2.5 Tbs to 4 oz using a new Level 3 nipple.  With the info from the MBS would you decrease thickening further with use of slower flow nipples and how would you structure the decrease?

Thank you for advice in advance!!

 

ANSWER:    I suspect he had a supraglottoplasty which has been correlated in multiple papers in the literature with post-procedure continued impairment in swallowing physiology leading to silent aspiration. Typically, even post-op there continues to be a significant increase in WOB; because we do not know his birth history and early history, it is unclear if there were other co-morbidities whose sequelae may be part of his clinical presentation and therefore need to be a part of the differential.

His respiratory behaviors (both WOB and RR) are missing pieces of the puzzle for me, as these are common areas of challenge with his history. Because infants with LM often have increased WOB and intermittent tachypnea even post-op, I wonder what impact that had on his reluctance during the VFSS to suck (i.e. the need to breathe overrides sucking drive). This can lead to adaptive/compensatory behaviors of not wanting to latch, latching loosely and not transferring milk purposefully. In addition, the flow rate from the MAM, if it was competing with breathing, may have adversely affected the data set.

The information from the instrumental assessment is difficult to understand, because the terminology used in the report is not clear. The usefulness of the data gathered at that VFSS is limited, in that only a MAM nipple was used as they tend to flow faster, and infants S/P supraglottoplasty, if they do PO feed, benefit from optimal flow rate control without the need for thickening (such as a Dr. Browns’ Ultra Preemie or a preemie nipple). In my clinical experience with infants with LM post supraglottoplasty, thickened feedings can themselves create safety issues during a true feeding, related to residue and changes in structural integrity of the airway after surgery. Another consideration is that if we are altering the thickener or level of thickening based only on clinical observations is problematic, especially in the setting of his known silent aspiration. Also, we unfortunately know nothing about the etiology of the airway invasion reported nor if interventions were utilized during the procedure (such as resting and co-regulated pacing) which are crucial interventions for infants with his diagnosis post-op.

I would strongly suggest a repeat instrumental assessment of his physiology by a pediatric trained SLP. The last VFSS appears to have been 3+months ago, and the time from 4 months to 7 months of age, even for the normally- developing infant, is one of great change (structurally and with regards to physiology). It would allow a look at such as a Dr. Browns’ Ultra Preemie or a preemie nipple and use of resting and co-regulated pacing during the procedure. You could then also objectify physiology with the purees and meltables you have started since the last study.

Odd the ENT was planning to d/c the Zantac, as our ENTs typically max-out reflux meds post procedure. This is because it is common for LM and EERD to co-occur, and indeed EERD can cause/exacerbate airway edema and adversely affect laryngeal sensation, which in turn increases the likelihood that events of airway invasion will be silent.

The sleep feeding may indeed be r/t EERD and may also be an attempt to avoid the discomfort or pain associated with eating. Is a pediatric GI doc involved? If his apparent EERD is better managed perhaps the need to sleep fed may be less prominent and he can be guided to be more of an active participant via sensory-motor warm ups prior to feeding. It is likely the plagiocephaly and the torticollis are altering quality of postural/sensory-motor skills (head/neck/shoulder girdle/trunk) , despite perhaps milestones themselves reportedly “approximating” his age level; they may also be altering some of the qualitative aspects of swallowing and feeding, since the head/neck/shoulder girdle/trunk, and even the hips/pelvis, all contribute to form the foundation for feeding and swallowing At his age and with his postural/airway/likely breathing co-morbidities, we need him awake actively learning during feeding , both for better airway protection and for oral-motor learning prerequisite to future skills.

I hope this is helpful. He is quite a complex patient.

Catherine

 

Problem-Solving: 4 y/o with trach CP

Question: We are currently seeing a 4 year 11-month-old female born at 31 weeks gestational age with an undiagnosed neuromuscular disorder. She presents with global developmental delay, chronic oxygen requirement (<0.5L at 21%), trach dependent with suctioning requirement 1-2x per hour orally and within the trach. This patient can tolerate wearing a PMV for greater than 60 minutes but no distinguishable difference in swallow safety or timing during MBS. She has global gross motor delays, can sit independently but unable to crawl or transition from lying to sitting. She has severe cognitive delays but does communicate with use of head nodding/shaking and signs within routine based activities.

Patient’s parent’s primary goal is for the patient to eat orally. She has been receiving speech therapy services targeting dysphagia including use of NMES, thermal tactile stimulation, jaw stability (kinesiotape), and oral trials of tastes (flavor spray and hard munchables with strong flavor with clearing and oral care by SLP) only. We have previously trialed: Large bolus size to increase sensation, strong flavors, use of assisted jaw closure and focus on labial closure. Patient’s spontaneous swallows range from 1-8 swallows within a 60-minute session. She silently aspirates consistently on MBS on all consistencies. Per result of MBS patient lacks velar engagement or elevation and has bolus movement into the nasal cavity during attempted initiation of swallows. She is also unable to maintain a labial seal.

Please provide any treatment ideas we have not considered. We appreciate your time.

 

Answer: What a difficult patient. I am happy to provide informal guidance that may assist you in your ultimate management plan.

At almost 5, her multiple co-morbidities reflect the severity of her dysphagia. So many pieces. You are trying, I can tell, to pull together any possible way to help meet the goal set by her family, that she be an oral feeder. The problem is that the goal is most likely not attainable for right now, and perhaps may never be, due to the severe level of impairment both overall and specific to her dysphagia. Let me try to explain why this is my impression.

Her postural control, based on what we know, is a fundamental component for her poor swallowing integrity. The poor stability and strength we see in her body is likely mirrored in her oral-pharyngeal mechanism.

I don’t think her palate problem (“lack of velar engagement or elevation”) is a “palate problem” per se but, given her clinical presentation, and the bigger picture, what was inadvertently perceived as “lack of velar engagement or elevation” reflects the nature of her swallowing impairment. I suspect that the “bolus movement into the nasal cavity during attempted initiation of swallows” most likely reflects passive retrograde flow into the nasopharynx, due to a severe delay in swallow initiation. The bolus is moving passively into the nasopharynx, just like it moves passively into the airway and is aspirated. This may be due to a combination of poor sensation, poor driving force of the tongue and poor driving force on the bolus anteriorly (poor lip seal described). Likely that her pharyngeal constrictors are also lax and contribute to bolus mis-direction to both the nasal and laryngeal airways – all associated with hypotonia. Given her described MA (severe cognitive delays), she likely lacks not only the postural but also the cortical neural underpinnings to be able to chew the hard munchables described. Her need for suctioning suggests she does not swallow her saliva, which is often associated with such a severe delay in swallow initiation and sensory-motor deficits as described. She requires a trach but it’s not clear how long it has been in place. It is clearly providing a current means of pulmonary toileting (suctioning) but may have been placed secondary to past need for ventilator support given her undiagnosed neuromuscular disease; she wears a PMV but has significant suctioning needs; this suggests she is not perceiving her secretions despite restoration of oral airflow by the PMV and is not swallowing her saliva.

Given this, I would suggest not offering her hard munchables, based on the impairments in her swallowing physiology, as she appears to lack the many prerequisites for chewing, so the hard munchables may be silently aspirated and/or obstruct her airway. While use of a larger bolus for increased sensation may be somewhat helpful under a different clinical situation, it may be problematic for her, given her hypotonia; she is likely to not sense that large bolus, too, and there is risk for it to move with gravity silently. Her poor jaw stability and lack of lip closure are both likely secondary to poor oral stability and oral hypotonia, so passive attempts at closure/approximation to swallow would be just that and won’t impact the underlying neuromotor components needed to swallow.

PT/OT are most critical interventions currently to build the postural base/framework to support swallowing of saliva as a starting point. You might work in co-therapy with them, while they are working on postural stability and support; you could provide deep pressure tactile input to the base of the tongue, onto into the biting surfaces of the teeth, offer a biter/teether to provide deep pressure input into the mandible (via the biting surfaces), deep pressure into the blade of the tongue to promote active tongue movement and driving force. An NDT trained SLP could guide you through this approach. I would also focus on tolerance of tooth brushing to promote optimal oral hygiene. Use of good oral care before any oral intervention is essential to reduce potential for bacteria laden oral secretions move into her lungs during therapy activities. Flavor spray on the biter/teether might be permitted but given her ongoing needs for flow (21% Fi02), the spray can mix with saliva and then be aspirated as well; check with her pulmonologist for guidance with this, as well as any tastes being offered. Because she is a known silent aspirator with multiple co-morbidities, with likely immunocompromise, even therapeutic tastes may not be appropriate. I would be having a conversation with her primary physician (and/or a key specialist like pulmonology) to ask for support in discussing with the family that PO feeding in the short term is very likely to place her at risk for re-hospitalization. Helping them understand the neural (cortical), postural, and sensory prerequisites will be helpful. A goal for them would be for her to swallow her saliva, as that suggests that the prerequisites for PO feeding trials are in closer reach.

These are such hard conversations to have, as families of children with such all-encompassing co-morbidities want their children to eat and we understand that deep longing. We never want to take their hope away and must give them guarded optimism, but at the same time be realistic and specific about what is within our clinical expertise to change at given points in the child’s developmental trajectory. Never hesitate to tell the family that it is hard for you to tell them what you must, and that you are not giving up on their child but also must assure that everyone is on the same page about what will help now and focus on the “now”.

You are thoughtful and kind, and the family is fortunate to have you in their corner.

I hope this is helpful.

Catherine

Research Corner: Supporting Neurodevelopmental Outcomes in Infants and Children with Congenital Heart Disease

Supporting Optimal Neurodevelopmental Outcomes in Infants and Children with Congenital Heart Disease

Peterson, Jennifer K. “Supporting Optimal Neurodevelopmental Outcomes in Infants and Children with Congenital Heart Disease.” Critical Care Nurse 38, no. 3 (2018): 75-79.

Our fragile infants and children with congenital heart disease are at risk for adverse developmental outcomes across multiple domains, including feeding/swallowing. This just-published article speaks to critical interventions, among them, cue-based feeding.

Abstract:

Improved survival has led to increased recognition of developmental delays in infants and children with congenital heart disease. Risk factors for developmental delays in congenital heart disease survivors may not be modifiable; therefore, it is important that lifesaving, high-technology critical care interventions be combined with nursing interventions that are also developmentally supportive. Implementing developmental care in a pediatric cardiac intensive care unit requires change implementation strategies and widespread support from all levels of health care professionals. This manuscript reviews developmentally supportive interventions such as massage, developmentally supportive positioning, kangaroo care, cue-based feeding, effective pain/anxiety management, and procedural preparation and identifies strategies to implement developmentally supportive interventions in the care of infants and children with congenital heart disease. Improving developmental support for these infants and children at high risk for developmental delay may improve their outcomes and help promote family-centered care.

Read more: https://insights.ovid.com/critical-care-nurse/ccnu/2018/06/000/supporting-optimal-neurodevelopmental-outcomes/11/00003242

Research Corner: Therapy Usage in the NICU

Therapy Usage in the NICU

Ross, K., Heiny, E., Conner, S., Spener, P., & Pineda, R. (2017). Occupational therapy, physical therapy and speech-language pathology in the neonatal intensive care unit: Patterns of therapy usage in a level IV NICU. Research in developmental disabilities, 64, 108-117.

This article by Bobbi Pineda OTR and her colleagues provides valuable information about utilization of therapy services in a large NICU. It provides insight into referral patterns and supports the concept of early and continued therapy services throughout the NICU stay to optimize outcomes. While their findings are not necessarily generalizable to other NICUs, this is the first attempt to gather such data.

It is worrisome to me that for those NICUs in which SLPs support feeding, referrals are often not received until > 36 weeks PMA. By that time, many of our fragile preterms (with complex co-morbidities) have already struggled learning to feed and may be referred at that time for extra support to “fix them”. In NICUs where PT/OT support feeding, they are typically already following the infants when feeding readiness is a focus, so for those infants whose team is likely to require extra support for feeding, it is already in place. My hope is that there will be greater recognition of the importance of early additional feeding support to the team for those preterm infants at the highest risk for enduring feeding problems, as profiled in the literature. The complex nature of their poor feeding often requires a team approach to avoid maladaptive behaviors and airway invasion. More research is needed to explore this concept and articulate infant needs for support related to co-morbidities.

Research Corner: Tube Fed Children….Management, Weaning and Emotional Considerations

Tube Fed Children: Management, Weaning and Emotional Considerations

Edwards, S., Davis, A. M., Bruce, A., Mousa, H., Lyman, B., Cocjin, J., … & Hyman, P. (2016). Caring for tube-fed children: a review of management, tube weaning, and emotional considerations. Journal of Parenteral and Enteral Nutrition, 40(5), 616-622.

Working with our infants and children who are tube fed can be challenging. This more recent article by a well-respected interdisciplinary team highlights some key perspectives and current data that can inform your therapy practice. Hope you enjoy it as much as I did.

Catherine

Research Corner: Feeding Problems from the Parents’ Perspective

Feeding Problems from the Parents’ Perspective

Estrem, H. H., Pados, B. F., Thoyre, S., Knafl, K., McComish, C., & Park, J. (2016). Concept of pediatric feeding problems from the parent perspective. MCN: The American Journal of Maternal/Child Nursing, 41(4), 212-220.

Wanted to share this recent article that so well captures the importance of the family as the most important part of our therapy with their child. As the authors state: “A child and their family have a feeding problem; they experience this journey together. It is more inclusive to consider this issue in the context of the child’s natural environment with the people who are most familiar and invested. A shared conceptualization that families can relate to (without perceived stigma), and that providers could use to classify pediatric feeding problems, would improve potential for early feeding assessment, referral, and for feeding intervention efficacy to last long term.”

Research Corner: Brain Oriented Care in the NICU

Brain Oriented Care in the NICU 

I wanted to share with those of you who are part of an NICU team or provide services for NICU graduates an article that, while 4 years old, is still so applicable as we support change from a volume-driven to an infant-guided feeding culture in the NICU. Those of you have an interest in neuroprotection for fragile adults will also find it interesting.

Bader, L. (2014) Brain-Oriented Care in the NICU: A Case Study. Neonatal Network Sept/Oct 2014, 263-267

Brain-oriented care, or neuroprotection, is often thought of as “new” to the NICU, yet as the author states, neuroprotection encompasses all the interventions that promote development of the brain. Because our NICU infants are wiring their brains outside the womb, every experience matters. Especially when it comes to feeding. The author makes the connection to infant-guided feeding, an approach we all need to advocate minimizing the physiologic stress associated with learning to feed in the NICU, and indeed after discharge. Unfortunately, the physiologic stress that many NICU infants experience when fed using a volume-driven approach instead, can wire the brain away from feeding. The feeding outcomes of NICU infants, which are poor, make it imperative that we be a part of the change in our NICUs to listen to the infant’s communication and provide the relationship-based care, especially with feeding, that allows the preterm infant’s brain to wire in an adaptive not a maladaptive way.

I hope you find this informative.

Catherine

Problem Solving: Feeding Readiness in the NICU

Question: Non-nutritive oral motor therapy in NICU – when do you use it and why and what result do you see? As a warm up to oral feeding to help organize? In 30-32 weekers to prepare for oral feeding? In patients who would be nil by mouth for an extended time? Patients who are not able to feed orally due to severe aversion (usually due to gastro issues)? What is the latest research on this? I’ve read articles for and against.

Answer: A few thoughts for you. I don’t conceptualize what I think you are describing as oral motor but rather “feeding readiness”, which encompasses a different concept, a much broader, yet more defined, infant-guided approach in the context of the preterm’s unique co-morbidities.

Conceptualizing the feeding-related services we provide in the NICU as “feeding readiness” and “supporting safe/functional PO feeding” can help neonatal nurses and neonatologists better understand the value we add to the NICU team. Unfortunately, well-intentioned but stressful cares and/or feedings may wire the infant’s brain away from eating, and indeed lead to later feeding aversions. The literature on feeding outcomes in former preterms includes reflections on the high percentage of former preemies with enduring feeding problems, far beyond the NICU. It impacts the infant-parent relationship and multiple domains.

I would avoid “oral-motor work” designed to focus on oral-motor skills per se at this juncture as it would be too invasive and not appropriate. You are describing preterms who are both fragile and still many weeks prior to term. Were they not born too soon, they would be fetuses experiencing motor learning and oral-motor learning in utero; their oral-motor movement patterns would be evolving in the context of the containment provided by the uterus, with hands on their face and in their mouth (and alternating touching the placenta per research). Careful attention must be paid to physiologic stability, especially its impact on WOB and RR., during all infant-guided readiness experiences Progression to pacifier offered via rooting response for sucking with co-regulated pacing, f/b tiny droplets of EBM on a pacifier offered via rooting response for purposeful swallows They would be integrating their structurally-intact aero-digestive system by 17 weeks of life, swallowing several ounces of amniotic fluid each day.

Focus on structuring experiences outside of the uterus that most closely align with the ideal sensory-motor environment (intrauterine)and help caregivers embrace the critical impact this intervention can have if offered in a neuroprotective infant-guided way.

Also, know that in addition the benefits of mother’s milk (EBM) to the mucosa via tiny trace droplets that may promote purposeful swallows and oral-sensory-motor mapping is being considered by many NICUs as an early approach to supporting readiness for infant-guided feeding in the future prime the sensory-motor system along with nuzzling at the breast (kangaroo mother care). There is a very tiny “paintbrush” one of the reps has (sorry I cannot recall which) that can support a very gentle limited offering of MBM to the lips or this could be offered via very gentle well-graded touch. But one can do this with gentle infant-guided touch via a caregiver’s gloved finger as well.

The key is that any feeding readiness experiences should be offered when infant is at his best respiratory wise (both in terms of respiratory support being required and his WOB and RR), he is actively engaged and maintains physiologic stability, and should be offered using infant-guided principles of interaction. Resting the infant and use of co-regulated pacing to assure that respiratory stability is fostered from moment to moment, are essential to support a neuro-protective experience that promotes both safety and positive learning. Some NICU caregivers offering EBM may need guidance to view this experience in such a light, as opposed to a “task” that one “must complete as a part of cares” .
We recognize that, in the NICU, “practice” is not the key, but what is, is the experience, and how it is both offered and received by the immature emerging neuronal pathways and oral-sensory-motor system.

In the NICU, every experience matters, as I like to say. Practice in and of itself, only makes permanent the neuronal pathways that are recruited and mapped; it does not in and of itself create the pathways that underlie function or skill; it can unfortunately lead to maladaptive behavior and stress if done as a task and/or offered in a programmed way. Infant-guided experiences are essential to neuroprotection.

I teach these concepts and their underpinnings in my NICU seminar and cite relevant research, but I have yet to find anything published or researched specific to what I am describing, which provides the supported oral-sensory-motor learning I find so beneficial to our preterms. Its evolution is a part of my practice since 1985 in Level IV NICUs.
I hope this is helpful.

Catherine