Problem-Solving: NICU Safety Concern

Question: I work in a NICU and am having difficulty with one of the Neonatologists. He changes nipple flow rates to see if volume will improve despite detailed documentation from therapists and nurses related to poor feeding quality, liquid loss, disengagement, occasional coughing and wet breathing with the faster flow nipple. Orders are changed requiring caregivers to use the faster nipple basically tying their hands behind their back regarding following the infants lead. I still use the slower nipple regardless and try to educate. Last time this happened, we spoke to the ‘head physician’ and were told that although my services were consulted, it’s is the physician’s decision to make. The question I want to throw out is…. In this case, is it expected that I sign off as the recommendations are not followed after education and discussions? Do I stay on to provide quality oral experiences 3-5 feedings per week, only? Not sure what the expectation is at this point.

Answer: This is unfortunately a more common situation than one might think. As I travel to teach about the NICU across the US and beyond, all too often this is a topic of discussion, as many SLPs who are part of NICU teams experience such a dilemma. Volume driven feeding in the NICU continues to be a challenge to neuroprotection and swallowing safety, and creates not only concerns for airway invasion but also learned aversions and maladaptive behaviors. The push to “get babies out”, lack of awareness and/or understanding of current research, combined with old habits of “getting it in”, combine to make our work in the NICU both challenging, at times disheartening and at times exhausting. Continuing to bring the research, using each consult as an opportunity to dialogue and letting the medical team “think along with you” about physiology, medical co-morbidities in the NICU and their relationship to feeding/swallowing, using guided participation with nurses and partnering with RNs who “get it” continue to be ways we can articulate our value. But in these situations as you describe, there is no clear answer. One option is to sign off, but then we cannot even advocate to protect the infant, support parent learning and reconsideration of their infant’s communication, identify onset of resulting aversions, or try to optimize safety with interventions. And we often cannot continue the dialogue about that infant and his response to the faster flow that may continue to go unrecognized by well-intentioned caregivers. And we lose an opportunity to turn the tide. I recognize it is a high and strong tide, one I have been dealing with since 1985 when I first set foot in a neonatal intensive care unit. Our resilience matters for the preterm and sick term infants in our care in the NICU, and their futures. Working in the NICU is indeed a step at a time each day, and requires much of those who choose to be there. The changes one can see over time keep us going and we support each other to have the courage and confidence to do so. I hope this helps

Problem-Solving: 9 month old with poor feeding and NGT

This interesting pediatric patient was sent to me for problem-solving. Thought I’d share, since it is an opportunity to build our clinical reasoning in pediatrics:

Question My patient is almost 9 months old s/p bilateral strokes. Has only breast fed, no bottle feeding experience. Has NGT in place. Head control is an issue but getting better and can maintain in Rifton chair/supported high chair when awake, alert. Currently breast feeding without aspiration related issues, although latch and strength of suck appear to be reduced and mom reports subjective difference. Main issue is moms reduced production of milk at this time, also baby has always been a “grazer” so not a good combo I have tried a dr brown level 1 and used smaller volufeeders; he can’t latch at all and he does not non nutritive on pacifier either. I’ve tried the bottle for over a week at my supervisors recommendation that we should “desensitize him” to the bottle. I am considering using a breast feeding trainer cup such as Mam or NUK simply natural to pursue any bottle feeding route. My understanding is that the neurolearning threshold for transitioning may be pretty tough as this point since sucking isn’t reflexive anymore and he has no prior experience with this skill- but I am open to hearing about others experiences and best practices. He is taking small volumes of purée via spoon and honey bear straw cup. I suspect he may need more time w ngt to build oral motor skills and then wean off ngt. Catherine, can you offer any suggestions for either improving bottle feeding transition ?

Answer: Don’t know a lot about his birth history, developmental history and co-morbidities that would help to problem-solve and to put into context the nature of his feeding/swallowing problems, since they sound like they are part of a bigger picture, as is often the case. I suspect his birth history would inform our differential. Multiple systems can be and often are synactively affected by each other and create a complex puzzle that needs to be solved to guide our plan of care. Wondering why still an NGT at 9 months instead of a GTube, given longstanding poor feeding, to support growth and avoid aversions that can result secondary to prolonged NGT in situ? Sounds like at least hypotonia and reduced postural stability are contributing to poor feeding, and are unlikely to resolve the short term, given apparent neuro comorbidities. Wondering about integrity of saliva swallows. If suck is that poor, swallowing physiology is likely also altered, if not impaired given poor head/neck control. Postural issues described suggest there may also be respiratory considerations. Not sure we can conclude there are no aspiration issues as he is more likely to silently aspirate given hypotonia, if he does invade his airway. Or he may misdirect the bolus toward the nasopharynx and adversely affect his nasal airway patency. Other relevant systems could be airway, respiration and GI co-morbidities that need to be considered in your differential, in the setting of his medical history. That should help guide you to workups to request and what interventions are indicated or might help at this juncture. Not sure about the rationale for the reported need to “desensitize”? Normalizing oral sensitivity sometimes needs to be part of the process but doesn’t sound like it for him, based on what you have mentioned. The latch is not likely refusal from what you have told me but rather altered sucking integrity or perhaps flow rate challenges that result in adaptive behavior that then becomes maladaptive. If the suck is poor, as you describe, a MAM or NUK breastfeeding training cup may not help or may create more challenges. Try to figure out why he is having trouble, first, then consider what interventions might best address that problem. The problem is likely not the feeding utensil but lack of the oral-sensory motor- underpinnings for effective feeding or other factors which I cannot sort out based on what I know thus far. An instrumental assessment of swallowing physiology with the purees and honey bear straw cup you are using with him would help define physiology, and you might also be able to observe some swallows with bottle feeding as well. I hope this is helpful. What a complex little guy.

Problem- Solving: Milk drop intervention for feeding readiness

Barbara O’Rourke, NICU RN, read my post on pacifier dips in the NICU, and is sharing the infant-guided neuroprotective “milk drop intervention” being used in her intensive care unit, and its positive outcomes. Thank  you, Barbara! 

Three years ago, our NICU launched an approved IRB research project of giving milk drops to our infants. The project was initiated due to an increase in our VLBW and LBW of oral aversion and the inability to take full oral feedings at 40-44 weeks CGA. We sought the guidance of our medical team, who requested that the project focus on 23 week to 33+6 week gestational age at birth infants. Although our only hypothesis was that “the infants who received milk drops would have a shorter length of stay (LOS) than infants who did not”, we also assessed and collected data for our knowledge regarding their HR, RR, oxygenation, color, state, tone, respiratory support, and response to the milk drops. The intervention would start at 3 days of age, and the infants were to be given normal bedside care except after they had been nested in, we would give a droplet or two of milk – if the infant licked their lips we would offer a swab or pacifier – if the infant accepted we would give more – a droplet at a time – based on the infant’s cues. The swab or pacifier remained in place as the droplets were given. The volume was limited by gestational age, and just like a feeding, sometimes the infants would not respond, however most of the time the infant did respond. As they matured they would often awaken before cares, sucking their fingers, looking around, and “waiting” for their milk drops. The process often took 10-15 minutes as we paced the infant allowing the infant to guide us. We only gave milk drops with cares or gavage feedings as oral attempts were considered the oral enjoyment for that set of cares. 100 subject infants were matched with 100 control infants who were discharged from our NICU before the study began. The data of the one 23 week infant in the project was pulled since the infant was transferred to another facility. The remaining 99 subject infants were matched only on gender and gestational age at birth with control infants. The average LOS for the subject group was 44.11 days versus the control group 49.30 days. The most significant difference in LOS being seen in the infants 24-30weeks. When costs were assessed, it saved our unit over $660,000.00 on these 99 infants. Our medical team requested the milk drop intervention become a standard of care for all infants in our NICU. The nurses document the infant’s response to milk drops in EPIC with the therapists and neonatologists often including the infant’s response to milk drops when they are assessing for oral feeding readiness. It is not unusual for our VLBW and LBW infants to go home at 35-36 weeks, some exclusively breastfeeding.

Problem-Solving: Pacifier Dips in the NICU

Question:

As ST/OT therapists, we have been doing feeding readiness and oral stimulation via pacifier dips for infant with controlled volumes, comfort during cares, etc….  Some of us do them as pacifier dips: milk in a medicine cup/medela bottle lid and some of do a mixture of the pacifier dips along with having the infant actively suck, offering 1 drip via a 1cc syringe.

The question has come up: Is there a standardization across the board regarding how and when to do pacifier dips/syringe drips?  The concerns with syringe drips, is that the bolus may be larger than with dips.  Another concern that I have is with oral organization, removing the pacifier multiple times makes the infant relatch and reorganize.  Versus allowing an infant to suck and offering syringe drips with time in between, allows infant to remain orally organized.

Is there a standardization? What do you guys practice?  Any research out there regarding the benefits?

Answer:

Pacifier dips can provide the opportunity for purposeful swallows that create the motor maps for swallowing in the course of a PO feeding. Supportive elongated swaddled sidelying, careful titration of bolus size, support for the swallow-breathe interface and physiologic stability all become essential components of our intervention that support infant-guided learning as co-morbidities permit.

Once the infant is tolerating a dry pacifier with physiologic stability utilizing co-regulated pacing, I use my gloved finger to place a tiny droplet of EBM or formula on the tip of the pacifier, and then offer it using the infant’s rooting response, when engagement, GI comfort, WOB and RR permit.

Re-latching in a supportive context can allow for prolonged resting to focus on respiratory reserves in between offerings, with when one is first introducing pacifier dips. This is especially true for infants for whom respiratory or airway co-morbidities are part of the differential. After resting, recruiting the root-to-latch sequence again, followed by onset of non-nutritive sucking promotes the motor mapping required for PO feeding.

Then one can begin to allow the pacifier to remain in the oral cavity, when infant is ready for that added aerobic workload. With the pacifier in the infant’s mouth, I can wait until WOB and RR look optimal, then deliver successive tiny droplets on the pacifier hub (I do it with my gloved finger to assure it is only a droplet). With each droplet I would be providing imposed breaths  to assure they are timely and sufficient, via use of contingent co-regulated pacing. Use of deep tactile cues at the cheek corner or at the anterior alveolus during imposed pauses creates the sensory-motor learning for future PO feeding.

I am not aware of standardization. I think it is more about being thoughtful and informed about why this intervention can help, what to consider and how to support both neuroprotection and safety, as we progress through this important step toward PO feeding in the NICU. The infant’s communication should always guide us.

So much goes into planning and executing this intervention, though it can appear quite simple. I hope this is helpful

 

Problem-Solving: Advocacy for SLP staffing in the NICU

Question: I am seeking your help as we fight for increased SLP staffing in our Neonatal Intensive Care Unit.  Do you have  any resources to justify more staffing and resources?

Answer: There is little to no data about NICU SLP services out there , and we always have to build the relationships that create respect for the value we add. This takes much time collaborating, thinking along with our medical and nursing colleagues, and building that open mind with each infant with whom we work, one by one.  As a former  Rehab leader, I found that was my only way to over time build the recognition of the need for our services , i.e our value to the infants, their families and the team. This then generated the referrals that needed to be seen.  Then when MDs were not happy if referrals were delayed due to inadequate staffing,  leadership could relook at budget to allow us  to allocate more staff.  Now, as a front line NICU staff person, I continue to build relationships and then let my leader take the next steps.

I have found it very successful  to utilize a co-morbidity-based approach to advocating for feeding needs   —  See: Edney, S. K., Jones, S., & Boaden, E. (2018). Screening for feeding difficulties in the neonatal unit: Sensitivity and specificity of gestational age vs. medical history. Journal of Neonatal Nursing.

The only article I know of looking at utilization in the NICU was this one  —- 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.

I hope this is helpful.

Problem-Solving: Variability in Breastfeeding Success

Question: A colleague reached out to me regarding her 3-week-old baby. She has some successful breastfeeding feedings and some that are not. Pediatrician suspects posterior tongue tie. Would that be possible if many feedings are perfectly successful?

Answer:

Feeding and swallowing are both dynamic systems, with multiple and varying influences from moment to moment and from feeding to feeding. Completing  a differential about what is causing the reported variation in feeding, and what may be the contributing the etiology(ies),  is a complex endeavor, to which many of the responses thus far have alluded. It is important to remember that multiple systems contribute to feeding/swallowing skill and the interplay, i.e., synactive relationships, amongst those systems, must be peeled apart .

None of the  systems that underlie function for nutritional intake exists in isolation. These systems include: cardio-respiratory, neurologic, neuromotor, sensory, sensory-motor/postural , airway, gastrointestinal, and oral-sensory/oral-motor, as well as the feeding “environment” (such as mother’s milk supply, milk flow rate, the caregiver’s perception of her role as a feeder and her experience, position utilized, and for bottle fed babies – nipple choice, as well as response to apparent infant stress and communication throughout the feeding). In addition, how the caregiver defines “successful” can be enlightening (e.g., volume, amount of stress observed, how soon infant disengages, feeding with or without apparent incoordination). Sometimes, infant behaviors interpreted as leading to an  “unsuccessful” feeding may be purposeful on the infant’s part to protect his airway or to signal stress (i.e., use of a compression-only sucking pattern, no longer rooting, letting go of the latch, loose latch). Sometimes what can look  like an oral-motor problem may be the infant being “smart”. It is important to ask that question. Again, think of dynamic systems theory.

You can see how if we, unfortunately, view one system as the focal point and don’t consider the bigger picture of  the context  of the other relevant systems for that particular infant, our differential about the problems observed will be sorely lacking, and our plan of care, therefore, ineffective. From this informed perspective, the SLP can present impressions and recommend further consults and diagnostic workups  thoughtfully to the physician.

An evaluation by a skilled pediatric therapist who looks at all the systems that underlie function, and their interaction, in the setting of the infant’s history, will best help to answer the “why” that can then guide the infant toward more consistency “successful ” feeding  —-  which to me, means infant-guided pleasurable safe feeding with an engaged infant and a caregiver who provides contingent responses to infant communication during feeding.

I hope this is helpful.

 

Problem-Solving: Aspiration of EBM

Question: I was curious if there is any research out there regarding the effects of breastmilk on the lungs if aspirating small amounts? 

We currently have an ex 25 week infant who is now corrected to 40 weeks.  Infant has CLD, currently on LFNC 2.5 LPM 100% Fi02.  Infant is s/p PDA ligation with L vocal cord paresis.  He also had delayed start to feeds due to medical NEC x2.  We started conservative PO trials with him 2 weeks ago-offering 10cc via Dr brown ultra-preemie nipple in R sidelying.  He built stamina and was appropriate for a VFSS this past week.  Results were as expected.  Infant had 2 episodes of gross aspiration- 1 with thin barium via ultra-preemie nipple and 1 with ½ strength nectar thick barium via preemie nipple.  1 was silent and the other resulted in a brady/desat.  However, he demonstrated several consecutive safe swallows during the length of the study.  We decided to allow him to continue to BF on a pumped breast and have been also contemplating allowing him 5cc of straight breastmilk 1-2x/day via ultra-preemie nipple for ongoing practice.  Some of our practitioners would like to allow him these PO bottle trials while others would prefer to keep it at just breast feeding with the pumped breast and allowing some pacifier dips during PG feeds.  I am torn between what would be best for this medical complex infant.  I work frequently with adults as well and have thought about the Frazier Free Water Protocol with some of our patients.  Given that breastmilk seems to be a fairly benign liquid, would it be similar?

Answer:

I know of nothing published but my pulmonologist colleague has told me that she believes EBM is likely tolerated much better by the lungs if aspirated, compared to  formula or thickened formula.

Aspiration is of course especially worrisome, though,  in the setting of CLD and a continued  need for respiratory support, L vocal cord paresis. You dont’ t mention the etiology for the aspiration events but I suspect an altered swallow-breathe interface,  and likely ineffective and/or incomplete airway closure, are probable etiologies.

Because we are not always fortunate to actually witness aspiration during the brief moment in radiology,  when there is indeed gross aspiration, at times silent, it confirms swallowing physiology is impaired.  Based on the data you provided,  I would not PO feed by bottle,  as “practice” as suggested by some practitioners, is not the answer. It is highly likely that resolution of CLD and vocal cord paresis are the answer,  both f which will take time. Pacifier dips of EBM, a GTube and repeat swallow study in 2 months has been a successful plan for our babies who present similarly.

The pacifier dips are like a free water protocol for infants and also perhaps limit the risk while allowing for purposeful swallows. PO feeding silent aspirators, especially those with the history and multiple complex co-morbidities you present, is worrisome to me. “Pratice”, which actually involves recruiting impaired physiology,  would, for me, weigh heavily against this option for this infant. While breastflow is likely more protective than flow from a man-mande rubber nipple, especially in the setting of CLD, breastfeeding may not be more protective  if there is a primary airway problem as you describe.

I hope this is  helpful.

Problem-Solving: Stridor in preterm infant with trouble breastfeeding

Question:

I am seeing a 5 week old tomorrow morning, born at 35 weeks. I will be looking at fat pads and tethered oral tissues. Mom reports breastfeeding is very painful. Mom just sent a video and I am hearing a lot of stridor.  I am also seeing a very shallow latch. we will explore a Dancer hold tomorrow as well. I attached a video clip.

Thoughts on the stridor?

Answer:

ENT is a very important consult for which to advocate. I have been fortunate over the years to be mentored by some fabulous neonatologists (who love the airway like I do!), RTs, pulmonologists and pediatric ENTs who have kindly allowed me to ask a million questions and who kindly have helped me think about the airway from their perspectives — but very “simplified” so I could start to make sense out of what  I am seeing and hearing clinically.

We don’t know much about history and co-morbidities for this IUGR-appearing infant except she was 35 weeks GA and is now 40 weeks adjusted age. So much possibility for why we are hearing stridor. Knowing more may assist with our problem-solving on the list serve, and as the SLP seeing the infant, inform a initial differential that allows the SLP to advocate from an informed perspective.

The shallow latch may be purposeful to limit flow in order to protect the airway, or it may be due to tethered oral tissues, or it may be purposeful due to the need to prioritize breathing. Or a combination of any of these etiologies.

Is there apparent mandibular hypoplasia that might be leading to an ineffective tongue-palate seal and poorly controlled bolus? That can lead to stridor.

Be thoughtful with a dancer hold as it will inadvertently increase flow rate, which may not be what the infant wants. If when you offer the dancer hold, you hear increased stridor, or infants pulls away or changes facial expression to a “worried” look, or increases breathing rate or effort, the infant will be “telling you” the dancer hold is not helpful for him right now. Infant guided interventions and the infant’s responses always inform our differential.

Stridor may be iatrogenic (post-extubation, post-ECMO, post PDA ligation or repair to the aortic arch, post-emergent or prolonged or repeated intubation, or due to resulting subglottic stenosis, for example),or it may be congenital (r/t a vascular ring, idiopathic occurrence at birth without explanation, laryngomalacia, tracheomalacia or tracheobronchomalacia). It is surprising  how often it can go apparently unnoticed so to speak prior to our noted concerns, despite worrisome or adverse effects on feeding (intake, co-occurring physiologic stress and apparent swallowing safety). I have seen this both in NICU, PCVICU, and with admissions from home to PICU and our pediatric inpatient units at times over the years.

Cannot tell if the stridor is present at rest, as the video starts when infant is already at breast and sucking.

Cannot see if there are suprasternal and/or supraclavicular refractions present at rest or, if they are seen, are they seen during feeding only.

My mentors have taught me that:
Stridor heard frequently at rest suggests a primary airway pathology. Stridor present at rest often will be exacerbated with the aerobic demands of feeding, both at breast and bottle.

Contrast that with stridor that occurs only during feeding. That may suggest either swallow-breathe incoordination, due to  the tendency to inhale after the swallow, or indeed attempts of the airway to close in a protective maneuver due to bolus mis-direction from above and/or below.

The stridor in the video sounded biphasic, suggesting a fixed airway obstruction (subglottic stenosis, paralyzed vocal cord(s)—as the airflow moves past a constant obstruction on inhalation and on exhalation – that leads to the biphasic stridor.

Contrast that with stridor on only one phase of respiration, which is most typically associated with a dynamic airway problem – i.e., laryngomalacia – stridor is typically only inspiratory, as there is collapse on inhalation   or   tracheomalacia  – stridor is typically heard only on expiration. There may of course be a combination of airway problems, best diagnosed by ENT.

Of course we don’t diagnose airway problems as SLPs. My mentors weren’t trying to teach me to do that, but rather to think critically. I  describe what I hear,  in the setting of that infant’s/child’s unique history and comorbidities, and my ENT and neonatology friends tell me that helps them. And it helps me better consider the “whys” that underlie the feeding and swallowing challenges that result.

I hope this is helpful.

Problem-Solving: Balancing ALARA in radiology with data collection

Question

I’m relatively new to conducting pediatric MBS studies. The pediatric MBS is also a relatively new service provided at our facility. The pediatric radiologist seems extremely conservative in how many swallows/seconds he will allow for an MBS study (10 seconds/swallows total). I was trained at another facility and in talking with my peers, this is not enough swallows to get an accurate picture of an infant’s swallowing (especially if also looking at fatigue, position changes, thickeners).
I’ve been looking for research to support the amount of radiation intensity (continuous) and time (around 60 seconds total) that my peers tend to use, however there seems to be minimal literature that specifically addresses this topic.
Can you advise me as to how to advocate for a more complete study, even though this means more radiation exposure?
Thanks

 

Answer:

Rads are the ones who manage and minimize radiation exposure for patients and us too . So his caution is an attempt to protect us.

ALARA – as little as reasonably achievable – is the mantra. Work with the rad from a perspective of recognizing that and finding a common ground for gathering good data but assuring optimal protection (shielding well, time, distance all matter). Have some conversations outside of the “moment in radiology” to problem-solve.

When I teach my pediatric swallow study seminars across the US, I always survey attendees for average exposure times they use as guides, and they are typically <2 minutes for infants , and < 5 minutes for children.

This allow typically for enough data to objectify physiology and interventions usually.

If I need to watch a bit longer to complete my differential, I let the rad know and ask if we can watch just briefly and he knows I really need to see that but that I am careful to watch exposure time.

Our aim is the least dose, so if I use about more time it is only after careful thinking and when it is crucial data that is needed.

Our tech can tell us at any time the exposure time up to that point, so we know how we ear doing as we go along. Tech tells us total exposure time at the end, and I always ask myself is there anything I might have done differently to lessen the exposure time.

Usually there is not but I always try to consider that question so can become a better clinician.

Rads usually pulse the beam, we use 30 frames per second but not every hospital radiology team does. Studies have shown that less frames/sec results in less useful data and 30 fps is optimal.

If the rad pulses the beam, and he starts the beam when you say “on” , and you plan what you are going to observe to objectify physiology, carefully select interventions to objectify so you minimize radiation, then these exposure time guidelines work well.

Feeding off line for fatigue while eating/drinking materials impregnated with barium will not use up that exposure time, just the brief re-imaging post fatigue feeding , to see if there are traces in the airway , larynx, nasal airway, etc. that suggest bolus mis-direction and or residue when infant/child was feeding off line, simulating fatigue factor.

Try this approach and see if it works. It does for me.  I developed it with input from our rads, who problem-solve with us as a team and we learn from each other from a place of mutual respect for the perspectives we each bring. The rads  recognize we too will do all we can to assure safety and focus on  ALARA.

I hope this is helpful.

Problem-Solving: 3 y/o with Polymicrogyria

Question:

I have a family with 3yr old son dx- polymicrogyria. During current hospitalization, treatment team is recommending NG tube and NPO. He will be sent home with this in place at least 4-8 weeks. We have been working on feeding/swallowing for several months now. My question is, how detrimental to current feeding and swallowing goals is this long term NG tune placement? Should the family receive more counseling regarding PEG prior to returning home (they are in a city, 12 hours from our rural location). I don’t want NG to result in increased risk of aspiration of reflux or hinder oral feeding goals. Is PEG better option at this point? Help please.

Answer:

You are asking excellent questions. Trust your instincts. As you know, this is a complex neurologic diagnosis that has enduring adverse effects on all developmental domains, especially feeding/swallowing. One of the mantras I offer all my medical and nursing colleagues and my students, is “co-morbidities matter”. My experience suggests that this is not the perspective that most medical colleges utilize as the framework for their differentials related to ability to feed orally, both for adequate intake and or airway protection. One set of clinical data/findings about dysphagia for an infant nor child will/should lead us to have very different plan of care when the co-morbidities and history are different. There is no pigeon hole or cookbook we can use but rather it requires a complex critical analysis of the data about that patient in the context of his unique history and co-morbidities that must guide our clinical decision-making, It can then become frustrating for those of us who recognize this close relationship between co-morbidities and prognostication, both through research as well as our clinical experience, when options are offered and decisions are made that don’t assure such a differential. While their intentions are clearly good ones, sometimes there is a tendency in these situations for the medical team to want the parents to be happy (i.e., a wait and see attitude), or to not understand the complexity of the underpinnings lacking, or to not appreciate the complex skills required to feed safely and meet nutritional requirements.

I don’t know if there are other co-morbidities, but if so, those will also act as rate limiters for feeding. This diagnosis, and the nature of its pathophysiology, is the lense through which we as SLPs then look at skill progression and, therefore feeding ability and safety. It is highly unlikely his related feeding/swallowing challenges will resolve in the short term (i.e., 4-8 weeks) as their apparent proposed “short term” NGT plan suggests. The NGT may indeed exacerbate EER/GER and create the setting for onset of feeding aversions due to the negative effects of an indwelling tube that makes the oral facial area unpleasant, especially if they decide to do a bridled NGT which may their plan given that at age three, there is also great risk to dislodge the NGT, which in itself creates risk for airway invasion. At 3 years of age, the likely maladaptive motor maps already developed due to likely struggles to feed will create further stress and roadblocks for this child.

I recommend the team strongly consider a PEG forth above reasons. Look at this recent publication that looks at NG instead of a PEG.

Keep up the good work. The child and his parents are lucky to have you in their corner.

I hope this is helpful.

 

A retrospective review of enteral nutrition support practices at a tertiary pediatric hospital: A comparison of prolonged nasogastric and gastrostomy tube feeding

Ricciuto, Amanda et al.     Clinical Nutrition , Volume 34 , Issue 4 , 652 – 658

They compared prolonged nasogastric and gastrostomy tube use, hypothesizing that earlier gastrostomy improves outcomes. Their results showed: Among 166 patients, the median total tube feeding duration was 24.9 (3.0–75.6) months and varied with underlying disease and swallowing assessment. The median duration of nasogastric tube use was 7.8 (0.7–45.3) months. Food refusal was significantly associated with nasogastric tube exposure >3 months (RR 3.3, p < 0.001, NNT = 3) and anthropometric outcomes were superior in gastrostomy-fed patients. Rates of aspiration pneumonia were similar in both groups. Despite more initial opposition to gastrostomy and a higher complication rate, gastrostomy users appeared more satisfied with their experience, as demonstrated by a much lower discontinuation rate than observed in the nasogastric group. They concluded prolonged nasogastric feeding is associated with increased food refusal and less favorable anthropometric outcomes and earlier gastrostomy placement may be preferable.

Problem-Solving: Struggles transitioning from breast feeding to bottle feeding

Question:

I am seeking out any clinical information (research articles, case studies, hospital/center practices or pathways) for treating infants who are struggling to transition from breast feeding to bottle feeding. My center sees many patients, who are often typically-developing and without a significant medical history,  who are excellent breast feeders but are refusing or having difficulty with bottle feeding. Often,  these mothers are under a lot of pressure,  as they are returning to work and worry that their child will be unable to feed while they are apart. Thanks!

Answer:

In this group of breastfeeding infants who don’t transition to bottle-feeding readily, we may see a wide variety of etiologies even in the subset of otherwise apparently normally developing infants.

I always try to keep my clinical radar open to the less obvious and go from there. Because of the protective controllable flow from the breast (compared to that received from a rubber manmade nipple), the faster (and therefore less controllable) flow rate when offered a bottle may reveal or create true incoordination. Caregivers may select a faster flowing nipple for bottle-feeding without knowing that it often makes bottle feeding harder for  a breastfeeding infant. Perhaps subtle airway differences that may be “manageable” for the infant at breast then make bottle feeding stressful. Perhaps not using the rooting response with the bottle (like mother does at breast) may make organization of the motor maps that underlie the root-to-latch sequence to initiate bottle-feeding difficult. Well-intentioned but ill-advised use of prodding with bottle-feeding  or “spinning the bottle” with bottle-feeding doesn’t happen at the breast; that can override and confuse motor sequencing that creates stop-start patterns and disorganization with the bottle. Caregivers during bottle-feeding may steer the infant back to sucking when he stops to breathe (to accommodate the less manageable flow); this can create physiologic stress when the swallow-breathe interface is then not synchronous.

Taking the infant’s perspective always helps me figure out the “whys” as a starting point. Each infant has his own  “story”, history and parent-infant relationship that makes his clinical presentation unique.  While breastfeeding infants who don’t transition to bottle-feeding readily can be often grouped as a “population”, our thoughtful reflective peeling apart of the layers for each infant is essential. This usually leads me to ask, “what else” (as my friend and mentor Joan Arvedson always says) and keeps my thinking in the “grey zone” where there are more questions than answers and that is a good thing.

I hope this is helpful

Problem-Solving: Feeding Aversions and Noonan’s in NICU

Question:

Do you have any suggestions for working with a NICU baby with Moons Rasopathies and food aversion?

Answer:

Do you mean Noonan’s Rasopathies? You don’t mention much about the infant so lots of pieces that are unclearing terms of problem-solving. Not sure if he is in the NICU currently or was in the NICU in the past. But here are some thoughts.

I always look at the system problems that are contributing, i.e. motor, oral-motor, sensory, oral-sensory then focus on those systems and their breakdown. What are the implications of that diagnosis for the underpinnings for feeding safely and well enough to grow. Aversions in an NICU infant and even in an older child are likely a byproduct of the systems that are altered or impaired.

Typically, with Noonan’s, it is hypotonia and altered craniofacial integrity (structural and muscular), plus the adverse effects of the need for NICU care (? Prematurity? Sick newborn? Need for intubation? Respiratory history? Current need for respiratory support? State regulation? Other complex co-existing co-morbidities – such as cardiac, neuro, GI, airway etc.? )

Be sure reflexes are consistent enough to even try pacifier dips. May look aversive due to infant is trying to protect himself (due to respiratory or swallowing safety issues). Lack of engagement maybe an adaptive behavior, a purposeful attempt to avoid feeding. or it may be lack of skill combined with disengagement. Take time to reflect and sort out “why” infant appears  “averse”. Patience and caution will be critical. Normalizing the oral-sensory system, in the context of the reasons for the apparent  “aversions” (or lack of engagement with feeding) will be a needed part of your problem-solving intervention.   If infant has the prequisites and is engaging, and you decide it appears safe to assess small PO trial, I suggest offering slow flow nipple , sidelying, resting , strict co-regulated pacing and use watchful vigilance. An instrumental assessment early on will be most important to objectify physiology due to high risk for airway invasion related to co-morbidities. Part of your role will likely be to protect the infant from being pushed to PO feed by well-intentioned caregivers.

Hope this helps.

 

Problem-Solving: Twelve-Month-old with apparent tongue tie and poor chewing

Question:

I have a 12-month-old that just came in for an evaluation. Lactation consultant at birth reported tie. Mother reported pain while breastfeeding and inadequate suction. She decided not to have the tie cut. Fast forward to 12 months. They just started to introduce chewables about 1 month ago. I see lingual lateralization with emerging munching–it is inconsistent. He does not drink from a straw. He drinks water and whole milk from a spout. He coughs inconsistently when he drinks and it appears, he is not sipping then swallowing but holding liquid in his mouth—-does anyone have experience with tongue tie impacting the peristalsis movement of the tongue for drinking? Mother reported that during his time drinking from a bottle he did not ever cough.

I got a look at his tongue–it appears to be a posterior tie; however, it is hard for me to tell if this is truly what is impacting him. If peristalsis is impacted could that mean decreased laryngeal elevation? Besides recommendation to a dentist and ENT should I recommend a MBS?

Any input would be greatly appreciated!

 

Answer:

Tongue tie is indeed a controversial topic, not only for SLPs but also for our large ENT group, who do not even agree amongst themselves.

I was fortunate as a young pediatric SLP to take an 8-week NDT course (Neuro Developmental Treatment) that was primarily for OTs and Pts and focused on the kinesiology, motor-control and dynamic interrelated components of movement that produce the gross motor, fine motor and oral-motor synergies that underlie functional skills. It also taught us about compensatory motor patterns that can be created by muscular/structural restrictions to movement. It opened a while new world to me about the motor mapping and structural-muscular relationships that are the underpinnings for swallowing and feeding. That perspective has so enhanced my work in dysphagia over many years, and continues to do so, both related to theory, components of movement required, evolution of feeding/swallowing and looking at treatment of feeding/swallowing from a sensory-motor learning perspective.

My clinical experience across the pediatric age groups from neonates through teenagers strongly suggests that truly-tethered oral tissues can change those synergies and create the need for maladaptive/compensatory behaviors with feeding, adversely affecting breastfeeding, bottle-feeding, spoon-feeding, mastication of solids, cup-drinking, and straw drinking.

Amber, I wonder if the 12-month-old you described, who it sounds like was otherwise normally developing, may be having trouble with using the tongue tip and lateral borders of the tongue to move food to the molar ridge and keep it there for chewing and to manage liquid.

Depending on the location of a posterior tongue tie, it may create difficulty accessing the lateral borders of the tongue to assist with bolus control and transport. This can lead to compensations of humping of the back of the tongue or restricted tongue retraction that can adversely affect the swallow. Contraction of the lateral borders of the tongue is required for tongue retraction which is part of the swallow pathway that, yes, as you suggested, could indeed adversely affect pharyngeal peristalsis. There can be pooling of liquid on the surface of the tongue (flattened instead of having a central groove due to restricted “lift of the blade by tethering), creating the need to hold the bolus to avert spilling across the tongue blade into the lateral sulci. If there is a true posterior tongue tie, the muscle coordination with spoon feeding is likely also being affected, though may not be as readily obvious if he can “eat from a spoon.” Compensations during eating can result, including, for example, avoiding/refusing solids, multiple swallows to clear a bolus, ineffective suction with a straw, hard swallows to facilitate bolus transport, overstuffing to ”move food”, swallowing foods not fully masticated, or pocketing due to the inability to transport a bolus properly. Progression to more difficult solids such as meat will be challenging due to lack of disassociation of tongue and jaw movements because a munching pattern is all that is available.

A swallow study, interpreted thoughtfully specific to components of movement along the swallow pathway, can objectify the compensations adversely affecting function. I recently saw an otherwise normally developing 5-year-old referred for a swallow study due to “not chewing”. She had altered articulation (suspicious for tethered oral tissues based on its presentation), refusal of solids, poor cup and straw drinking. Her clinical examination, own history provided through my gentle questions and obvious restrictions in oral motor movements suggested upper lip, anterior tongue and posterior tongue ties. The subsequent instrumental assessment as requested by the MD suggested restrictions in movement that created many of the differences I described above. She was seen by a local pediatric dentist well known of specializing in this area of pediatric practice and had multiple releases. Much relearning was required with her community SLP to support learning of new oral-motor maps and synergies for functional skills. Just one example from many. That does not suggest that all such feeding problems use as examples above are due to ties, but we need to thoughtfully complete a through differential with each infant or child or adolescent, and continue asking questions both during sessions and after, with each other.

My Pediatric PTs colleagues love talking about tethered oral tissues, since they bring such clear understanding of motor synergies and structural-muscular relationships that adversely affect function. Sometimes they say it can affect function quite obviously and at other times, in a more subtle way that alters quality of movement, and affects motor learning going forward, affecting future skills. Might this be applicable to eating and drinking, as it evolves and progresses through motor learning and experience? My thought is yes.

I hope this is helpful.

Problem-Solving: Aspirating 4 month old

Question: “Asking for a fellow therapist. What would you use to measure the effectiveness of vital stim on a 4 mo old who is aspirating severely due to a discoordinated suck – swallow. Other than using a stethoscope to listen to her lungs or if fluid is entering her stomach, I’m not sure how in a home setting we measure effectiveness. She ate a 3 ounce bottle in 15 minutes when I was there so amount of time doesn’t seem appropriate”

My response:

There can be so many etiologies for why an infant has suck-swallow-breathe incoordination. Depending on the infant’s history (was there prematurity? was she a sick newborn?) and medical co-morbidities (neurologic? respiratory? airway? GI?) as well as developmental co-morbidities (postural control? oral-motor? sensory? ),  the interventions selected will be different and specific to that etiology.

Sometimes it can seem helpful to just “find a tool”, like a NUK brush or a popular bottle or a marketed option, and then use it to “make the feeding better.” But that doesn’t work.

Don’t try to find an answer, ask more questions. Take the time to” look at” and listen to and “feel” the baby when she is feeding so you can figure out why she is “not coordinating”

Slow flow nipples, co-regulated pacing, resting, changes in positioning and guided participation with caregivers can  enhance both intake and quality of feeding, when provided by a  SLP with expertise in infant feeding/swallowing. But only after knowing why you would be using them.
Maybe Vital Stim is not an appropriate intervention, given her history, clinical presentation and your assessment. You need to find out and to ask the questions.

If feeding is new to you, seek out a colleague to work alongside you that you can learn along with. The infants we see today are quite complex for all of us.

It is quite rare  that a tool is the answer — a tool is only useful when preceded by critical thinking about why. Too often, grabbing, for the “tool” is like grabbing for a cookbook —  and its stifles your thinking. Remember cookbooks were made for cooking not for feeding.

Step back, take a deep breath and  look at the baby through new eyes. I bet you will start to answer some of the questions I posed and you will have more questions of your own about what your observations and her behaviors might mean. Then you think some more, ask more questions. Seek out a colleague’s eyes to look along with you. Then think some more with that colleague .

I know you were hoping to have someone just provide a protocol, but I am hoping instead you will let yourself think and live in the “grey zone” as I like to call it  (where answers are not quick and one must be ok with not being sure, not have answers, need to ask more questions, ask “what else” do I need to consider), because that is how one becomes a more skilled clinician.

Also need to think about: why she is aspirating? What is the etiology?

There are multiple possible reasons along the swallow pathway that can lead to maladaptations and bolus mis-direction in the context of her unique history and clinical presentation.

When was the instrumental assessment done? was the infant at her best then? has she changed since then in ways that might affect swallowing/feeding function? is there need or PT and/or OT  or other medical specialists to help sort out the “why”? is she otherwise normally developing?…. I ask all this because, as you know, we don’t treat the problem, we treat the infant.

Without understanding why she aspirated we are likely going to “throw a bunch of  interventions at the problem” and they may be inappropriate, ineffective or ill-advised, given what is really going on and the bigger picture.

I hope this is helpful.

 

Problem-Solving: VFSS with former 24 weeker and thickening feedings

Question:

I have a question re: thickening formula in NICU. We don’t do vfss until >40 wks and no other compensations improve bedside feed.

We have a GA 24.6 wks; now 46.3 wks. Failed RA trial yesterday after 5 days of NPO/gavage only after a VFSS that documented laryngeal penetration and aspiration with slow flow in sidelying and upright with thin and nectar thick consistencies, so now NC 1/8L at 100%. Previously was bradying1-2x in a feed, so finally approved for the vfss…and while NPO limited to one Brady or desat a day. Vfss looked best with no penetration or aspiration with honey thick/IDDSI moderately thick. Would you agree with thickening of this infant to work towards safe feeds to go home with NCO2?

Answer:

What is the etiology for the aspiration events? To problem-solve, one must understand the physiology that underlies the bolus mis-direction you observed during the VFSS.

Is possibly GER/EER a part of the differential, as some events when not with PO feeding? Wonder about the effect of EER on laryngeal/tracheal sensation. Guessing that as a 24 weeker CLD may be a factor so both EER and poor swallow -breathe interface are key considerations.

Thickening is, as you know,  a last resort when other interventions are not establishing a safe swallow. Honey thick is rarely being used, both in my experience and as I ask other therapists form across the US and other countries, when I teach my seminars. Honey thick is worrisome in that if the infant requires something so thick to establish a safe swallow “in the moment”, he could during the course of a feeding have a change in position, a change in state, a change in bolus size, a change in sucking strength, a change in breathing pattern) that could easily result in airway invasion. Further, aspiration of honey thick in the developing lung of a former preterm with CLD can create undue pulmonary issues for which the risk-benefit ratio may be quite precarious.

Asking this infant to PO feed and go home a full Po feeder may in the longterm not be a good plan for him, his neuroprotection, his joy in eating and his pulmonary health. Based on what I know about him, which is limited (? other complex co-morbidities than respiratory?), I’d advocate for a GTube and offer readiness interventions (including cautious therapeutic pacifier dips)  to maintain his oral-sensory-motor system for safe return to PO feeing when co-morbidities permit. Often these are infants who, after 1-2 months post discharge, come for a repeat study, and  have established improved respiratory function that allows for the beginning of some safe PO feeding.

I hope this is helpful.