Problem Solving: NICU Grads with Feeding Aversion

Problem-Solving with Catherine

Question: 
We have a set of 27 week twins who have a 3-year old sibling who was a 24 weeker in our nursery. The 3-year old had a g-button placed before discharge from the NICU (poor feeding, often did not awaken for feedings or show any feeding cues before discharge). She eventually had a fundoplication at 6 months because of persistent emesis/gagging. At 3 years of age she will drink some liquids but does not eat. She gags as soon as her g-button feedings are started and will gag when she sees someone else eating. 2 weeks at a local feeding clinic (a year ago) resulted in this child screaming for 2 weeks and the parents stopped the program and have not sought any other help. The current twin siblings (infertility treatment with medication–first sibling had a twin that did not survive) are also having significant feeding aversion. Mom did not breastfeed the 3-year old, but was consistently in the NICU to feed/care for the infant and provide consistent feeding experiences. The current twins were recreationally breastfed for several weeks before any bottles were given. The female twin is much like her sibling, in that she often will not awaken for feedings at 40 weeks corrected age (she does still have a sm/mod PDA and is consistently tachypneic. The male twin has had persistent gagging and vomiting for weeks. He has more of a desire to eat but takes a long time to “warm up” to the idea with out gagging. Offering a shorter (preemie) nipple seemed to minimize the gagging, especially with the male, and though he takes partial feeds, he frequently vomits during or after the feeding whether nippled over 30 minutes or gavaged over 2 hours. Multiple formulas have been tried (including 7 days of Enfamil AR and 7 days of Neocate, plain MBM,etc) but the vomiting/gagging persists. These parents are sooooo sad that the twins are behaving much like the previous child, but they see a future with 3 children who do not eat. This family lives in a very small town and have little access to feeding therapy. Any suggestions? The male twin had a tongue tie which was clipped several weeks ago. The female twin also has a tongue tie that we have asked ENT to visit, as her mother’s nipples became very painful last week when more breastfeeding attempts occurred. Mom says the babies also gag at the breast. Thanks for any suggestion.

Answer: How very sad. These former 27 weekers now 40 weeks +PMA sound indeed like aversions are present, perhaps due to WOB and struggle to PO feed, as it sounds like, knowing your developmentally-supportive NICU environment, the staff have been thoughtful about supporting them. His gagging at the breast and her not waking for PO (likely not so much only respiratory fatigue as a form of purposeful disengagement due to learned stress) are signals that we need to back off on PO. I would suggest: Hold PO. (1) offer gentle tastes of MBM on mommy’s finger, (2) offer own hands to face, own hands to mouth, and (3) only nuzzle at breast with no expectation on mommy’s part that infant will latch or transfer milk (4) gentle oral cares, no swiping but instead use deep pressure input. I suggest a PEG for both of them, not that I am giving up on their ability to PO feed but rather to promote neuroprotection. Their experience of PO feeding, even with good developmental care, is right now being perceived by them as adverse and is creating stress that can wire their brains away from eating and is doing just that. Given their co-morbidities and parental stress in trying to get them PO feeding, the infants’ stress will only get worse in the short term if they continue to be expected to PO feed. It would be helpful for mom and dad to see the POPSICLE video (“Parent Organized Partnership Supporting Infants and Children Learning to Eat”). It can be found on You Tube under Popsicle Feeding Video. It is the creation of parents of former preterms who were forced to feed and had long-term feeding aversions. The families also have a website called http://www.FeedingMatters.com Their parents need to offer guarded optimism for the feeding futures of the twins. Because sister still has feeding aversions at age 3 does not mean the twins will; however if we continue down the path they are on, it will increase that risk. Every feeding experience matters, and that must be the rationale to support a different plan for the babies in the short-term. I hope this is helpful.

Catherine

Problem Solving: Role of therapist in NICU

Question: I am a NICU therapist in a 57 bed level 4 NICU, we have a very difficult time convincing physicians of the benefit and necessity for speech therapy and OT in the NICU. Chronic babies are ordered as well as babies with a diagnosed syndrome or cleft palate etc. However babies with bleeds, long term intubation and kids with PMA of 24-28 weeks that should have a consult are sometimes overlooked. Prior to my position here I worked in home care / private practice for 17 years and saw NICU graduates with a variety of feeding and swallowing difficulties many of which stemmed from their early feeding difficulties. Is there a standard ordering protocol, an algorithm or other evidence based clinical procedural means to share with the clinical committee to convince practitioners of the value of our work and place in the unit any input would be greatly appreciated.

Answer:
It is always challenging for NICUs and their nurses to see a need for our services when they have “existed” without the benefit of collaborating with rehabilitation therapists regarding feeding readiness and support for optimal feeding outcomes. Lots of dialogue and conversations are needed with NICU staff and leaders to expose them to current research and what value you add. Focusing on those infants most at risk for feeding problems, based on the evidence, is a good place to start. Take a look at these articles on co-morbidities and feeding written by well-respected neonatal researchers. They profile who are the most at risk fragile feeders and therefore guide us as well to those who will benefit from skilled intervention to support the path to PO feeding via oral-sensory-motor readiness. This includes those born at or under 28 weeks GA, at or under BW 1000 grams and with respiratory, airway and GI co-morbidities. Enjoy these articles!

Jadcherla S.R., Peng, J, et al (2012). Impact of personalized feeding program in 100 NICU infants: Pathophysiology-based approach for better outcomes. Journal of Pediatric Gastroenterology & Nutrition 54(1), 62-70.

Jadcherla, S. R., Wang, M., Vijayapal, A. S., & Leuthner, S. R. (2010). Impact of prematurity and co-morbidities on feeding milestones in neonates: a retrospective study. Journal of Perinatology, 30(3), 201-208.

Park, J., Knafl, G., Thoyre, S., & Brandon, D. (2015). Factors Associated With Feeding Progression in Extremely Preterm Infants. Nursing research, 64(3), 159-167.

Also I wrote this manuscript in 2007. In it there is a set of criteria for referrals in the NICU for feeding support. If I were to write it today, I would add to that criteria but it can be a starting point for you to consider and use in conversations. Shaker, C.S. & Woida, A.M. (2007) An evidence-based approach to nipple feeding in a level III NICU: Nurse autonomy, developmental support and teamwork. Neonatal Network, 26:2, 77-83.

Know that creating a role in your NICU is a journey not a destination. It takes many interactions, patient successes and partnering with bedside nurses to make a culture change that embraces the inclusion of therapists when it comes to feeding. And then it needs to be nurtured every day. Be thoughtful, be informed and be a colleague. Share and listen. Build relationships with nurses who become your advocate. Support families in building a relationship with their infant through feeding, and they will sing your praises to the neonatologists!

I hope this is helpful.

Catherine

Problem Solving: Desaturations with PO in NICU

Question:


We had a patient last week that was born at 39 weeks and 4 days-no reported complications with birth history/birth.  He presented with frequent desaturations with feeds- dropping into the 70’s with color changes.  This would also occur with non-nutritive suck on the pacifier. The infant was transferred into the NICU.

Speech was consulted to complete MBSS to r/o aspiration.  This was the first contact speech had with this child. He was 4 days old at the time.  Patient presented with strong rooting reflex, tongue protrusion and non-nutritive suck.  He did present with desaturations into the 80’s with non-nutritive suck.  MBSS was completed using a slow flow nipple. Patient was eager to eat. Patient was able to establish non-nutritive suck without difficulty.  Patient had no aspiration, pooling, residuals during the study. He began to desat after 4-5 sucks-O2 dropped down to 70 and then patient recovered after 2 minutes.  Attempted pacing with patient leaving the nipple in the oral cavity but tilting slightly forward and also by removing the nipple from the mouth.  When nipple was left in the oral cavity patient continued sucking. Patient continued to have desats/color changes with each attempt of pacing- pacing was completed after 3 sucks. Oxygen levels dropped into the low 70’s and upper 60’s with each attempt.  Position change to side lying provided no benefit.

My concern with this patient was the frequency of the desaturations that occurred throughout the feeding.  There was also concern that patient did not receive benefit from the techniques used – slow flow, pacing, side lying position.  The feeling of the physician was that infants desat with feeds in our NICU all the time and we just needed to teach him to coordinate the SSB sequence.  The RN reported that it had taken over an hour to feed the patient using the techniques of pacing and side lying with a slow flow nipple.

My question to the group is how typical is this especially in a term infant? Is there something we can do differently to help this baby?  I am concerned with the level of stress that feeding may be causing him and how do we help to decrease this if the above techniques are not working?

We are waiting on cardiology but the feeling of the physicians is that this is just a coordination problem since it only happens with the nutritive and non-nutritive suck.

Thanks for your thoughts.

Answer:
Desaturations with non-nutritive sucking in an otherwise healthy newborn is not normal. The question is, is he really a healthy newborn? The results you provide from the swallow study and your clinical assessment both suggest that, despite typical interventions (such as positional changes, co-regulated pacing and flow rate regulation), there is something about the aerobic demands of sucking that result in his inability to adequately oxygenate.

The neonatologist’s statement that “infants desat with feeds in our NICU all the time and we just needed to teach him to coordinate the SSB sequence” minimizes a critical component of completing a differential in the NICU — context and co-morbidities matter. Desaturations in and of themselves have limited meaning; the meaning of the desaturations is best understood in the context of each individual infant, his history and co-morbidities. Desaturations with the pacifier is often  for instance observed in a preterm infant with cardio-respiratory co-morbidities who is allowed to suck continuously on a pacifier; co-regulated pacing can often avert that.

The behavior this term infant presents gathers meaning, and directs the next steps in a differential, only in context: history/co-morbidities, what other behaviors co-occur with the desaturation events, as well as the important clinical data that the interventions you trialed during the swallow study did not avert the decompensation. This, then, is a very different picture than what the neo considered. The impression is one of pathology. While the infant did not aspirate or apparently mis-direct the bolus during the VFSS, the integrity of his feeding/swallowing is impaired. Competing the differential of “why “will require cardio-respiratory work up. I have seen many infants for whom impaired feeding is the impetus for a cardiology consult and often that is the unsuspected co-morbidity. Let us know what cardiology finds.

Sad that the staff fed the infant for hour. Someone was not listening to the infant’s communication, which likely showed disengagement long before. We don’t know the caregiver’s perception of her role in feeding NICU infants, but I suspect it is to get the volume in. The caregiver actions adds one more factor in a feeding/swallowing differential.

In the thread there have been mention of a couple possibilities I’d like to touch on. Offering oxygen in some cardiac presentations can actually worsen the infant’s status. Oxygen, one neo told me when I was first starting in the NICU almost 30 years ago, can be toxic. Again the neonatologist’s looking at the possible co-morbidities is essential to guiding management.

Concern that the infant may be “working too hard” using a slow flow nipple  was also mentioned. It is not uncommon for NICU nurses to share that concern as well. Actually research has shown just the opposite,that it is not the work of sucking that fatigues infants, it is the work of trying to breathe in the presence of a flow rate beyond the infant’s capacity. Studies have shown that infants who received a flow rate they can regulate actually take more volume than when offered a free flowing nipple. The concept is that during feeding, fighting the flow to breathe adversely affects ventilation, i.e., the infant breathes less often because he is spending more time swallowing; the less time spent in deep breathing, the more likely saturations are to decrease and stamina suffers. A slow flow rate is also most like the breast flow, which has been shown as well in the literature to be a key factor in maintaining physiologic stability during breastfeeding, even in tiny preterm infants. The literature regarding breast flow is quite instructive for those of us who support bottle feeding in the NICU.

So increasing flow rate for this infant, as you suspected, Ginger, would indeed make the situation worse. The fact that your interventions which are clinically sound did not improve saturations is a key factor that the neo just did not consider. If we increase the flow rate, we would see further physiologic decompensation, as he would breathe less often, perhaps we might even see true bolus mis-direction, as the infant may “open the airway” to catch a much needed breath, and then mis-direct the bolus. The infant’s physiologic stability, his ability to regulate multiple systems and his experience of the feeding would be worsened. In addition, the negative learning that has already unfortunately likely taken place would be exacerbated.

I hope this is helpful.

Catherine

Shaker ASHA Sphere Blog

Shaker ASHA Sphere Blog: 5 Things You

Need to Know About Working in the

Neonatal Intensive Care Unit

June 2, 2015 by Catherine Shaker, MS/CCC-SLP, BCS-S

Screen Shot 2015-06-05 at 1.17.19 PM

If you answered yes to any of the questions in my first post about wanting to work with acute care infants, then read this follow-up!

  1. The NICU is an intensive care unit: Infants in the NICU are critically ill or were in the recent past. These most fragile patients can               become physiologically unstable at any time—and it might happen during your therapy. The emotional roller coaster of NICU leaves families fragile, too.
  2. It’s not easy to practice in the NICU environment: Quick and constant losses and triumphs cause emotions to run high. An infant’s status can change at any time. Caregivers are highly skilled and passionate, which sometimes leads to strong opinions and respectful disagreements. The SLP needs to thoughtfully collaborate, yet at times take a stand.
  3. The NICU SLP requires advanced practice skills: It’s not just knowing what to do, but what not to do. We often support feeding/swallowing, so the risk for compromising an infant’s airway is significant. Essential skills include solid critical reflective thinking, the ability to complete a differential, and broad, multi-system knowledge about preterm development and swallowing/feeding. Your preparation should include solid experience with the birth-to-3 patients, as well as continuing education, mentorship and guided participation with many infants in both the newborn nursery and the NICU. The NICU is too demanding to be an initial independent placement after graduate school.
  4. The NICU evidence base is rapidly evolving: Read, read, read as much professional neonatal literature as possible. Sources are not just within our field but also in medical, nursing and OT/PT journals. Our role is not only to understand the evidence base, but to bring it to the NICU team. Neonatologists and neonatal nurses will ask “why?” and we must be able to discuss the research-based evidence along with our clinical wisdom: For example, if you recommend changing from “volume-driven” to “infant-guided” feeding.
  5. The NICU is rewarding: After almost 30 years working full time in the NICU, not a day goes by that I don’t learn something, make a difference in an infant’s life or experience the joy of a grateful “thank you!” from a family. The appreciation from nurses and neonatologists when an infant can now feed safely and, therefore, go home, makes your day. With such rewards, however, comes great responsibility. In our hands lies the potential to influence parent-infant relationships through positive neuro-protective feeding experiences that wire the brain toward feeding and build future connections.

If you are thinking about moving into NICU practice, you will find lots of information on my website. Stay tuned for more tips to guide your journey!
 Catherine S. Shaker, MS, CCC-SLP, BCS-S, works in acute care/inpatient pediatrics at Florida Hospital for Children in Orlando. She specializes in NICU services and has published in this practice area. She offers seminars on a variety of neonatal/pediatric swallowing/feeding topics across the country. Follow her at http://www.Shaker4SwallowingandFeeding.com or email her at pediatricseminars@gmail.com

 

I am an official blogger for ASHA regarding infant feeding and swallowing and acute care pediatrics. Follow me there too!
 

Inaugural Recipients of the Pioneer in Neonatal Therapy Award

Message from Sue Ludwig, OTR, President – NANT

Inaugural Recipients of the Pioneer in Neonatal Therapy Award

Pioneer in Neonatal Therapy Award – Inaugural Recipients (left to right)

Betty Hutchon, Lourdes Garcia Tormos, Kara Ann Waitzman, Lynn Wolf, John Chappel,
Chrysty Sturdivant, Robin Glass, Rosemarie Bigsby, Jane Sweeney, and Cathie Smith.
(Recipients not pictured: Elsie Vergara, Catherine Shaker and Jan Hunter)

The above recipients have worked for decades to advance our presence and purpose in the NICU and have contributed immensely to educating us all. It was past time to honor them.

You may be tempted to believe that they ‘have arrived’, that they are finished learning, that they no longer understand what it’s like to be you, your first year or 10th year in the NICU,  trying to wrap your brain around all the knowledge you need to work there.

What you may not know is that these pioneers fully understand how much there is to learn. They stood on that stage at the NANT (National Association of Neonatal Therapists) Conference BECAUSE they never stopped learning and they never once assumed they had arrived. They have elevated the experience for patients and families (and for all of us) for decades. It is only because of their trailblazing efforts that NANT was a conceivable notion for me.

Once they were all present on stage, I turned and saw them smiling broadly ear to ear, truly grateful to be in each other’s presence. Funny thing was, I thought to myself, “Wow, this group is a reflection of the bookshelf in my office.” Articles, notes, books with many dog-eared pages, presentations – they have truly led the way for decades.

Pioneers: we cannot thank you enough for your dedication – fierce and enduring – to the babies and families we serve, and to the thousands of neonatal therapists all over the world for whom you have forged a path. Your immense contributions are deeply appreciated.

*For the sake of disclosure- just know that the Pioneers (both nominated and awarded) were submitted by a global international audience and chosen by NANT members. I nominated no one – the results are due to your input and enthusiasm in submitting your support for each pioneer.

Problem Solving: Supporting NAS infants in the NICU

Question: I work in a level 2 NICU and we are seeing a rapid increase in infants referred to us with NAS. Are there any courses on this population to help us better support them?

Answer:
Infants with prenatal drug exposure are one of the challenging populations in the NICU. They often present with poor state modulation, sensory-motor disorganization, altered sensory-motor processing and postural control, and a hyperactive sucking drive which can lead to coughing/choking. Their parents are often ill-equipped to have the patience and problem-solving skills necessary to help these infants from a postural, sensory-motor and neurobehavioral perspective.  I am not aware of any courses/seminars specific to this population.

In the NICU there are many different etiologies that cross our paths. Focus on each infant’s unique history and clinical presentation to see what domains for that infant are going to get your focus. As you complete your differential on these infants, determine what areas of function are problematic and then select from the typical NICU interventions often utilized, which are based on clinical wisdom and/or research evidence. This often includes for this population with Neonatal Abstinence Syndrome: secure swaddling to provide compression and containment, facilitating flexion and midline, offering vestibular input to calm/organize, use of a slow flow nipple and co-regulated pacing to optimize coordination, and intermittently resting the infant briefly to maintain reserves and organization.

Our babies with neonatal abstinence syndrome are often term or post-term and may unfortunately be expected by caregivers to have more skill than they actually do.  In the early days/weeks of life, the implications of stressful feeding on their growing brain, and its architecture going forward, may not be appreciated. The growing body of research on neuro-protection should heighten everyone’s awareness of the importance of positive infant-guided feedings for all infants in the NICU, especially those with NAS. For more information on neuro-protection, I recently posted an article on neuro-protection on this list serve; should be in the archives.

Nurses will especially benefit from the SLP’s guidance regarding co-regulated pacing, and why the slow flow nipple is helpful, as they may unfortunately want to offer a faster flowing nipple in response to the infant’s unbridled voracious urge to suck. They may not recognize that the sucking drive for an infant with NAS is a byproduct of an altered neuro-regulatory system, not a sign of true “hunger’ much of the time.

Parent and families will benefit from anticipatory guidance (watching you feed while you describe what you are doing, why and the infant’s communication) and guided participation. They will benefit from many one-on one sessions with the SLP to help them learn to prophylactically keep the infant’s state modulation well-supported through reading the infant’s communication during feeding, understanding what the best strategies/interventions are, and when to use them, and how to support their fragile infant through an infant-guided feeding approach.

The OT in your NICU is a resource regarding sensory-motor and vestibular input. One of my goals is to publish on supporting feeding safety and success with our NAS infants to help support my colleagues; watch for that down the road :-). For now, you can find more information about NICU problem-solving and interventions through the resources on my website http://www.Shaker4SwallowingandFeeding.com.

I hope this helps!

Catherine

Problem Solving: Infants of Diabetic Mothers in the NICU

Question:
Recently, I have seen a number of infants born to diabetic mothers (IDMs) who are LGA, but with an otherwise stable medical status who are persistently poor feeders. I frequently find myself scratching my head and wondering how to address this problem so these babies can be discharged home, but without much success. Do you have any experience, input, or suggestions to help guide our treatment?

Answer:
Babies who are infants of a diabetic mother often receive the label “LGA” (large for gestational age) but their “greater size” does not mean “greater maturity”, although this may be the presumption of some NICU caregivers. Indeed due to the high fat storage related to being an IDM, their tone is often “doughy” and they are not like “big babies” when it comes to feeding. This unfortunately sets them up to be expected to feed like “big babies” by some NICU caregivers. From the beginning of PO feeding initiation, these expectations are not reasonable, given their medical history.

Besides poor state regulation leading to poor drive to feed, added issues for IDMs can be increased work of breathing, which can lead to respiratory fatigue. Our neonatologists have us follow these infants, and expect significant improvements in feeding over about 2 weeks, once blood sugars are stable. If progress with feeding is not forthcoming, the neonatologists usually do neuroimaging studies such as a CT of the brain to look for brain malformations. Infants of diabetic mothers are at risk for brain malformations due to the altered “fetal environment” secondary to maternal diabetes. Slow flow rate, external pacing to limit bolus size and support coordination, attention to respiratory behaviors during feeding, re-alerting, avoiding passive “prodding” to empty the bottle and judicious interim use of gavage feeds are all useful interventions.

Therapists are essential to the infant’s team, to model patience and infant-driven feeding, to promote careful attention/response to the infant’s cues and behaviors, and to share strategies and rationale with bedside caregivers and families. Too often, “getting the baby home” can overshadow what needs to be a period of recovery and supported learning for the infant.

Problem-Solving: Weak suck in former term infant in NICU

Question: I am seeing a newborn at 38 weeks now day of life # 31 baby. Has weak suck. Is able to bring liquid into mouth but no coordination. to swallow. Most liquid pools in mouth and is spit out. Baby tires quickly. Baby has many other health issues including predominant extensor tone, cardiac, chromosomal abnormality-only 50 cases known-life expectancy is very low). I would appreciate any suggestions re: stimulation of swallow, feeding intervention.

Answer: This certainly appears to be a challenging newborn. From what you describe, there appear to be significant issues for swallowing safety and oral feeding may not be indicated right now.

Many sick infants with such a presentation actually have underlying low tone proximally. Thus the hypotonia that likely exists in the head/neck provides a poor base of support for the trachea and for the swallowing mechanism. It is likely that both the intrinsic and extrinsic tongue muscles are hypotonic. As a result not only will the suck be weak, but the swallow will be affected (decreased BOT for posterior propulsion, decreased pharyngeal compression and motility related to reduced control of the constrictors, etc.). Due to underlying low tone throughout the upper body, it is likely that there are respiratory issues that may result in increased work of breathing, that might compromise timing of the swallow-breathe sequence.

What is his actual diagnosis? What are his pharyngeal reflexes like? Often in such babies those reflexes are unreliable. Does he swallow his saliva? Sounds like it may also pool as does fluid offered. What is his state regulation like? What about work of breathing? What is the status of his airway —is there any auditory suggestion that he is not maintaining it? Not uncommon with such a postural presentation.

Given what we know, I’d suggest a swallow study. It is likely there is a delay in the initiation of the swallow, along with reduced pharyngeal motility and clearing, and the risk for silent aspiration, given what you describe, is high. This information about his swallow will be important to your intervention plan and for the discharge plan, especially since he has already been hospitalized a month.
I’d also recommend to the neo that we limit to gavage feedings only, with swallowing trials (as safety permits) by the SLP. Intervention would include a good postural base (via swaddling and positioning–well-supported side lying may help tremendously; check with OT/PT as needed), work on the intrinsic and extrinsic tongue muscles (via deep pressure input, direct and indirect tapping, direct NDT techniques to the muscle groups of the tongue to improve stability and control); the cheek/lip muscles may benefit from direct input as well, as they are likely also to be hypotonic given what we know. This is not to say that the cheeks/lips need to be active (they are not active in normal infants until 3-4 months of age) but they do provide postural stability for the tongue during young infant feeding. If the pharyngeal responses are diminished, again likely with this presentation, I have found some direct sensory-motor input can be helpful. Depending upon results/impressions from the swallow study, one might consider, after providing the sensory-motor preparation just described, offering trace amounts (single sucks at best) of fluid via a slow flow nipple, which would have been trailed in Radiology (Dr. Brown’s Premie Flow level P or Enfamil slow flow) and observe.
The other issues are of course ethical and quality of life if indeed life expectancy is limited with his diagnosis. So close collaboration with the neos and nurses, and family, regarding safety issues and impact is essential. Volume won’t be the goal if swallowing trials are initiated. He will need some form of tube feeding for his nutrition. Likely this would be an NG if life expectancy is short and prognosis overall is poor, but in some cases a PEG is placed. On-going therapy that may eventually be more monitoring or episodic, is typically provided after discharge.

Problem Solving: Adaptive behavior during feeding in the NICU

QUESTION: I am posting this for a colleague that works in our NICU department, we’d appreciate any insight you might have!

“Can there be significance to infant’s with tongue tip elevation as the preferred position while at rest?  We currently have two infants on our NICU caseload that consistently hold this position.  It is interfering with feeding as the infants both root but will infrequently bring their tongues down for nipple acceptance.  They are both from a twin gestation and were born between 28-30 weeks.  Neither have an oxygen need.  Any thoughts?”

ANSWER
This is an adaptive or compensatory behavior often seen in preterms, especially those born <28 weeks, but even in late preterms. It is associated with increased WOB and/or an increased respiratory rate. One of my favorite neonatologists, Dr. Ragatz, who was my mentor almost 30 years ago, loved to “think along with” me about how respiratory co-morbidities affect breathing. As a marathon runner, too, he concurred with me on this. Placing the tongue tip on the alveolar ridge provides the infant with  a point of stability for the tongue, and has an  impact on many of the muscles of the head/neck, including those that stabilize the shoulder girdle. This biomechanically creates the feeling of a more open airway.  No one has studied this phenomenon but a pulmonologist and several skilled neonatal OTs and PTs have agreed with this hypothesis. Our infants find ways to help themselves without someone telling them; this is an example, as is the spontaneous use of pursed lip breathing by preterms who need to blow off C02; adults with COPD are often taught this by RTs. Dr. Ragatz found it fascinating that what he reported experiencing while running the Boston Marathon was what we see some of preemies do.

When we see this behavior, it is communication to us that the infant is choosing to pause his sucking to breathe. And so we respect this, allow him the pause as long as he wishes, letting him signal his readiness to return to sucking via his active rooting on the nipple which is kept touching the corner of his lip during the pause. We then create a feeding “environment” that reduces his need to recruit this adaptive behavior. We do this by utilizing a swaddled elevated sidelying position, a slower flow nipple, and contingent co-regulated pacing to support a frequent series of deep breaths.

Think about the infant’s behavior not as “interfering” with feeding, but as the infant guiding you as the caregiver. When feeding the infant is perceived and valued as a relationship between the infant and the caregiver, the feeding experience builds trust and positive sensory-motor learning for the infant. This is the way we improve post-NICU feeding outcomes and support the parent-infant relationship in ways that have long-lasting effects.

I hope this is helpful.

Catherine

Problem Solving: Multiple co-morbidities in the NICU

Question:
I have performed a swallow evaluation on a 36 week preterm on supplemental O2 1L 21%Fio2 almost a week ago ( he was 35 at the time). The report I received was that the baby was not interested in PO. However, my assessment with slow flow nipple with the use of side lying and strict external pacing. 1 suck one swallow / cough and choke followed by desaturation to low 80s. Recover in 20 seconds. The next two sessions Dr. Brown preemie with 5 minutes of short sucking bursts with pacing every suck with desaturation to 50%!!! Self-corrected with some external help after almost 30 second. My recommendation is to hold PO feed until next week, RNs did not like that and told me today that they tried last night and he took 11 mL and choked and desaturated several times. My question is: is it really worth it? I don’t plan on doing a video swallow study because I know he aspirates, I am just waiting for him to May be mature a little bit and hopefully with time his swallow function and respiratory status will improve. Other than slow flow nipple/ external pacing and side lying, what other strategies we can implement to help this little guy?
He does very well in NNS via pacifier.

Answer:

We need to know more about his history, especially his GA and his co-morbidities, respiratory hx and behaviors (hx of ventilation?  Progression to low flow nasal cannulae – was it difficult for him to wean? Baseline RR and WOB at rest, WOB with pacifier? is he on any diuretics? hx of PDA ligation?), his postural control and state regulation, for example, to problem-solve.

Knowing he is 36 weeks PMA and having adverse overt events is indeed concerning. Without the bigger context of his hx, it makes it challenging to complete a differential. A set of data in the context of a different history and a different set of co-morbidities will often yield a different POC.

In my experience it is not typical or a variant of maturity at 36 weeks PMA to display the physiologic decompensation you and RNs report, especially given the interventions described. If they are going to continue to feed him we need to objectify the swallowing physiology. A swallow study would not be to see if he aspirates. It should allow us, as Jim Coyle has taught us, to look for a biomechanical impairment and any form of bolus mis-direction, not just airway mis-direction, that may lead to the decompensation observed and then allow us to objectify the impact of carefully titrated interventions, and to determine the etiolog(ies) for bolus mis-direction or perhaps prolonged breath holding.

Tell us more 🙂
I hope this is helpful.

_________________________________________________________________________________

Follow up response from therapist:

Thank you so much Catherine for responding to my post. Here is more information:

His GA 27/ 2 days with RDS with APGAR 1 minute 8 – 5 minutes 9 He  was placed on NCPAP  for a week then followed by HFNC for a couple of more weeks. This last month, he has been on O2 NC ( 1L / FIO2 21 %. ECHO was done 3 weeks ago with small PDA. Baby is also SGA.  Chest X-ray about two weeks ago : moderate diffuse interstitial and airspace disease. last week, improved resolution of the bilateral pulmonary opacities.  They just started him on Diuretics on May 28th. He had two HUS that were normal. This baby is in a very calm state, does not show hunger cues and/or hand to mouth exploration. He does have a root reflex. He is alert the entire feed, not very engaged though. He has very short sucking bursts 2-3  this poor thing is very cautious with his sucking as  if he knows it is not going to go well. So he is not really that eager feeder that goes to town and forgets to breathe. His suck strength and length with a pacifier is excellent. And state regulation is normal with the pacifier. Oral exam is unremarkable. About the formal swallow study, your point is reasonable. However from my previous experience in this NICU. The information that I get from the study is oftentimes misinterpreted and used against my judgment. I had a baby in the past that I did a video swallow study on and he had consistent penetration 50% of the time with the slow flow nipple / 10 % of the time with Dr. Brown preemie and my recommendations was to use Dr. Brown Preemie with side lying and provide 5 minutes break before resuming the last 10 ccs (because that is when the baby gets disorganized and start choking) and the baby ended up NPO for PEG placement. They concluded that the baby is micro aspirating and no matter what I say and how I explain it. RNs just would not feed him. I would see him for his AM feed and that is about all he got all week long until he was transferred to a different hospital for the PEG placement. I tried to contact the mother to educate her about her son’s condition and how he can still bottle feed and she was so busy, would not return my call.  I might sound unreasonable but I am considering the study as the last resort, perhaps after a couple of more weeks when I know that that is as good as it gets!

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Follow-up response from Catherine:

Thanks for the great detailed history. This helps me focus and use the infant’s specific history and co-morbidities to guide my thoughts. I find that every day in the NICU this is the process that best supports my critical thinking 🙂

I am not surprised that he is under 28 weeks given the complex clinical presentation you described in your original post. His respiratory course described and the fact that he still requires flow and is on chronic diuretics suggest that respiratory co-morbidities are paramount; he may indeed have met the criteria for CLD. The PDA, though it is small is also likely driving increased WOB.

Some of his disengagement you describe (“not showing hunger cues) may be due to WOB , even if it appears somewhat subtle at times, which can often inhibit the  drive to suck. This is a likely etiology given that his non-nutritive suck is described as well-developed and effective. I find this is often the case with our infants with significant respiratory co-morbidities and often our “healthy preterms” as well. Sometimes “sucking skill” can actually predispose such infants to bolus mis-direction. That is why focusing on the suck as the focal point for a feeding assessment can be limiting, or even cause one to label a pattern such as “wide jaw excursions with sucking”  as arbitrarily “pathologic/abnormal” when it is actually may be for that infant, an  adaptive/purposeful behavior that the infant uses in response to swallow-breathe incoordination. You make  a great example of the short sucking bursts you describe that he uses — he is “very cautious with his sucking as  if he knows it is not going to go well”–that is, the short sucking bursts do not reflect pathology –i.e.,  the inability to sustain a long sucking burst–though some may think it is pathology if they just focus on his sucking without looking at the context/co-morbidities. Actually for him, the short sucking bursts reflect “good thinking” on his part, as I say, to parents 🙂

I was especially impressed by the fact that despite your interventions, he continues to have adverse overt events. For many preterms, slow flow rate with contingent co-regulated pacing as you describe can avert decompensation. We always as NICU SLPs use those interventions, and don’t rush to radiology, but when the fundamental interventions do not ameliorate the decompensation, that is highly concerning, as you undoubtedly told your NICU staff. Every experience the infant has matters. So if they continue to feed him and each time he experiences negative learning, he is wiring his brain away from eating. We know the neurons that fire together wire together. It is highly likely that continued feeding under these “conditions” can be a pathway to aversions down the road. that’s where some  researchers are focusing:

Smith G.C., Gutovich, J. et al (2011) Neonatal intensive care unit stress is associated with brain development in preterm infants .Annals of Neurology. 70(4), 541-549.

Thoyre, S.M. (2007) Feeding outcomes of extremely premature infants after neonatal intensive care. JOGNN, 36(4): 366-375.

By advocating to obtain objective data via an instrumental assessment, you will have more information to rule in or rule out what the possible etiologies might be, what specifically may be happening to predispose him to bolus mis-direction and then observe if any further interventions (e.g., maybe only single sucks at a time for now?) serve to avert the negative experiences. If we do not advocate for further workup, they will likely continue to feed him as they are, and at what cost to the infant, and we don’t fully understand his physiology. Sometime s infants with this presentation are purposefully using a delay in swallow initiation to get that last breath in, much like COPD-ers. Knowing that, i.e., why the events might be occurring, is important and guides interventions.

I so understand your frustration with the responses we sometimes received to our recommendations after both clinical and instrumental assessments. But the only way we change that is to keep having dialogue and trying our best for each patient as you are trying to do. it is always a journey working in the NICU, I say, not a destination -)  I have these same struggles every day. I worry for him that if you wait to sort this out until  “after a couple of more weeks”, his learning and outcomes could be altered quite adversely.

Thanks so much for your thoughtfulness and this interesting but unfortunately too common dilemma. I hope this is helpful and apologize it is so long! As you can see, the NICU is my passion and I love problem-solving.

Catherine

Problem Solving: Music Therapy in the NICU

Problem-Solving with Catherine
Question: Apparently our hospital has a new grant for ‘Music Therapy’. I thought it was for the Pedi cancer patients, but I see one of my NICU babies is on their list. Someone comes twice a day and has a pacifier connected to a machine that plays music when the infant sucks hard enough. Per the nurses report, the music therapist said the infant was ‘getting better’ w his sucking (stronger? longer? NNS?). This particular baby is a 48 wk., 4 month old (born at 32 weeks/twin). He is still <5 lbs. and has BPD, no endurance, reflux and an aversion to nipple feeding (GT was planned for this past Monday, but he has a UTI). I feel like this topic has been address before here, but I am just not capable of figuring out how to find it. I was wondering what the feeling is from our community – helpful and good, tiring and bad, case by case?

Also, I am not sure how pt.’s are chosen to participate in the music therapy and I only became aware of it yesterday because infants father thinks it tires baby out and “Nobody cares what (he) thinks.” I have a call out to the music therapist herself too. Any input would be appreciated! Danielle
Answer:
 Music Therapy in the NICU often includes PALS (Pacifier Assisted Lullaby) as you mentioned below, though it may include only the playing of music and singing while the infant is held by the Music Therapist.

We must all be thoughtful as we evaluate devices that are designed or marketed to develop a skill. It is the thoughtful use of a modality, or the thoughtful decision not to use it, based on the clinical assessment of our patient and the evidence, that should be our guide, both in the NICU or in any other level of care in which SLPs are a part of the team.

My NICU clinical experience for almost 30 years suggests that PAL (Pacifier Assisted Lullaby)  is not an answer for the feeding/swallowing problems preterm infants present, and may actually inhibit functional skill (i.e., feeding). The issue for preterm infants is more complex than a “sucking problem.” Feeding problems in the NICU are rarely so simple, though sometimes a “poor suck” is unfortunately perceived as the reason for many of them. Learning to feed, both effectively and safely, is a complex, multifaceted challenge for preterm infants.1

I have been part of the team in two large level III NICUs, and many of those babies have been extremely preterm. Many have respiratory distress syndrome (RDS) or CLD (Chronic Lung Disease), requiring intubation and ventilation, and/or need supplemental oxygen in the course of their recovery. We have not observed a direct detrimental effect on non-nutritive suck (NNS). These infants typically demonstrate effective non-nutritive sucking when ready to initiate bottle feeding, with respiratory issues being the paramount barriers. We have found that the NNS typically emerges with development and positive support during care. For all infants, our nurses provide excellent oral care, including developmentally appropriate hand-to-mouth, rooting and pacifier activities, to support development of non-nutritive sucking. For infants with delays in onset of oral feeding due to medical status or those profiled as likely to be high-risk fragile feeders, the speech-language pathologist is added to the team to provide positive early pre-feeding and graded swallowing experiences. This helps the infant make the transition to nutritive sucking more safely and effectively.2

The challenges preterms encounter in learning to feed are most often the direct sequelae of residual respiratory problems. These problems (e.g., tachypnea, increased work of breathing, compensatory breathing behaviors, breath-holding) jeopardize the coordination of sucking, swallowing and breathing. 1  This can lead to respiratory fatigue and incoordination, or indeed adverse events such as choking, coughing and color change. Even infants with excellent NNS can have significant problems learning to suck nutritively because their drive to suck is often stronger than their physiologic sense of oxygenation.3

Very often the co-morbidities of early gestation, lower birth weight and attendant respiratory sequelae make feeding a challenge. The NNS, for which PAL was developed, has not been the issue delaying discharge.

It is also important to recognize that the NNS and the nutritive suck are very different in their rate and rhythm due to the addition of fluid with nutritive sucking. This renders non-nutritive and nutritive sucking different developmental skills. Lingual patterns on ultrasound have shown significantly greater displacements and excursions when a preterm infant was sucking nutritively vs. non-nutritively on a pacifier.4

The NNS is not in itself a predictor of nutritive success (i.e., bottle feeding), research has found.5 
NNS is just one of several domains that require consideration when contemplating the introduction of oral feeding. While found to be helpful, typical non-nutritive interventions have not been shown to decrease length of stay.6

A recent study reported that a non-nutritive stimulation program in an NICU did not result in earlier weaning from an nasogastric (NG) tube or earlier discharge when compared to similar infants without that intervention.7

In addition, PAL is designed to foster, and has as its outcomes, longer sucking bursts. Longer sucking bursts are problematic for the preterm. Longer sucking bursts may inadvertently, and often do,  result in respiratory decompensation, increase in  WOB and overall respiratory effort. This “drain” on the infant’s respiratory reserves can have detrimental effects on the functional skill of feeding,8 as PAL is often provided just prior to a feeding. During PALS, the focus  by the Music Therapist is only on sucking, and as a result, the infant’s communication about its effects on breathing may not be recognized or understood by the Music Therapist

.

Also, during PAL, it is likely at the preterm infant is not able to stop on his own at the appropriate junctures to take a series of deep breaths. This is directly related to immaturity, i.e. the drive to suck can inhibit the drive to breathe in the preterm, as he cannot register changes in CO2 versus O2, which can be a by-product of continuous sucking. So we often see a continuous sucking pattern with the pacifier and with PO feeding.9

While continuous sucking may sound like a hallmark of skill, in the preterm infant it can destabilize the autonomic system, lead to breath-holding or insufficient breaths, which can lead to desaturation, and potentially a cascade of events leading to decompensation.

So sucking, faster sucking or engaging in longer sucking bursts, is not necessarily good for the preterm and typically is not. Sucking can’t be looked at in isolation, as it is part of a dynamic physiologic event that has multiple system implications/effects. 10

When the focus is on sucking itself, i.e. with PAL, we are not providing the preterm with the careful support required to integrate breathing with sucking. Then sucking activities provided can actually be detrimental to motor-learning, and potentially increase stress on a physiologic level.11  This can then lay down neural pathways that, instead of facilitating positive learning, may move the infant away from learning to feed.12

While it may seem to some that enhancing sucking can be the answer for feeding issues that delay discharge, it is just not that simple. NICU infants learning to feed require dynamic, infant-guided supportive strategies during both pacifier sucking and during feeding, based on watchful vigilance and continuous feedback from the infant. The focus is on physiologic stability, active participation of the infant, and coordination of sucking with swallowing and breathing.5

This approach is more likely to promote readiness for  and eventual swallowing safety, support adequate nutrition, and result in the earlier discharges we have seen in the NICUs I have been fortunate to work in.

As you know, supporting successful feeding for preterm infants goes way beyond sucking. For those infants who indeed do have “sucking” problems, then the involvement of the SLP, who can problem-solve with reflective/critical thinking, and support the integration of sucking with breathing, in preparation for eventual PO feeding,  is more supportive and more beneficial for sensory-motor learning than a referral for PAL, in my opinion.

References
1. Shaker, C.S. (2013) Reading the Feeding. The ASHA Leader – American Speech-Language-Hearing Association.
2. Shaker, C.S. (2013) Cue-Based Co-regulated Feeding in the NICU: Supporting Parents in Learning to Feed Their Preterm Infant. Newborn and Infant Nursing Reviews (2013) 13 (1): 51-5
3. Shaker, C.S. (2012) Feed Me Only When I’m Cueing: Moving Away From a Volume Driven Culture in the NICU. Neonatal Intensive Care, Journal of Perinatology-Neonatology, 25 (3) May-June, 27-32.
4. Miller, J.L., Kang, S.M. (2007).Preliminary ultrasound observation of lingual movement patterns during non-nutritive versus non-nutritive sucking in a premature infant. Dysphagia, 22: 150-60.
5. Lau, C., Kusnierczyk, I. (2001). Quantitative evaluation of infants’ non-nutritive and nutritive sucking. Dysphagia, 16: 58-67.
6. Fucile, S., Gisel, E.G., Lau, C. (2002). Oral stimulation accelerates the transition from tube to oral feeding in pre-term infants. Journal of Pediatrics, 141: 230-36.
7. Bragelian, R., Rokke, W., Markestad, T. (2007). Stimulation of sucking and swallowing to promote oral feeding in premature infants. Acta Paediatrica, 96: 1430-32.
8. Thoyre, S.M., Shaker, C.S., Pridham, K.F. (2005). The early feeding skills assessment for preterm infants. Neonatal Network, 24: 7-16.
9. Shaker, C.S. (2010) Improving Feeding Outcomes in the NICU: Moving from a Volume-Driven to an Infant-Driven Approach. American Speech, Language, Hearing Association. Swallowing Disorders Division 13 Perspectives – Oct
10. Shaker, C.S. (1999) Nipple feeding preterm infants: An individualized, developmentally supportive approach. Neonatal Network, 18(3), 15-22.
11. Smith G.C., Gutovich, J. et al (2011) Neonatal intensive care unit stress is associated with brain development in preterm infants .Annals of Neurology. 70(4), 541-549.
12. Browne, J. V., & Ross, E. S. (2011). Eating as a neurodevelopmental process for high-risk newborns. Clinics in Perinatology, 38(4), 731.

I hope this is helpful. Good critical thinking on your part!

Catherine
Catherine S. Shaker, MS/CCC-SLP, BCS-S
Board Certified Specialist – Swallowing and Swallowing Disorders
Florida Hospital for Children
Orlando, FL

www.Shaker4SwallowingandFeeding.com

Problem Solving: Newborn with feeding problems

Question: I completed a new eval on a newborn infant, 7 weeks old.  PMH: NAS likely, looks/acts premature, removed from parents at 3 weeks and is in foster home, dehydrated upon custody, limited history.  Intake is great and she is growing/gaining since in foster home.  Last week she started struggling with feeding.  Her tongue tip remains elevated with nipple presentation.  This was present in eval.  Once she drops her tongue and accepts the nipple she will drink very well.  Great suck and coordination.  Jaw opening is limited with nipple stim to lip.  Seems like she is anchoring her tongue to stabilize her jaw.  Is this correct?  If so, what approach is needed to assist with feeding?  And what can foster mother do at home?  Various feeding positions do not assist to extend her trunk.  Stim with soft gum massager does not assist.  Her mouth is very tiny (weighs ~6 lbs.).  Suggestions, please!

Answer: 
Good problem-solving and asking questions!

Given that the infant can actively lower her tongue to the floor of the mouth and establish an effective latch, tongue-palate seal and coordinated sucking pattern, this is likely a compensation (i.e., an adaptive behavior). I see it most often in infants due to  increased work of breathing. Infants will often elevate the tongue tip to the alveolar ridge when the work of breathing creates challenges for suck-swallow-breathe. I suspect the contact/pressure of the tongue tip at the alveolus may help to stabilize the tongue in such a way that it give the feeling of a more open pharyngeal airway. This may sound funny, but one of my favorite neonatologists at my old NICU, who is a marathon runner, told me that when he runs in marathons, he often places his tongue tip at the alveolus to get through the respiratory work during the run. Knowing my great interest in the pathophysiology and co-morbidities of infants with CLD (Chronic Lung Disease,) he postulated the reason as I stated above. It make sense to me (and did to him!) , as we knew we had often seen this behavior co-occur in infants with extra breathing effort during feeding (and at rest too). Though the WOB may be slight, it can interfere with the fine coordination of swallowing and breathing, and infants make adaptations, i.e. use compensatory or adaptive behaviors to “get them through” the feeding or in an attempt to ease stress associated with breathing. Unfortunately , some of the adaptations they use can become maladaptive behaviors if the underlying issue causing the need to adapt is not addressed and rectified.

This would make sense for this infant, given his known/suspected co-morbidities, i.e. being a preterm (which would account for the increase in WOB) and NAS/Neonatal Abstinence Syndrome (which can result in frantic disorganized approach to feeding that leads to an increase in work of breathing).

The “closed jaw” is likely another adaptive behavior — the infant does not actively open her mouth until she is done breathing; when she is  done breathing, she roots, opens her mouth actively and latches. She is communicating by her behavior, as infants do, to you and to mom, and telling you how to help her. So continue to use her rooting reflex to initiate the feeding; if she does not open her mouth and root, then wait  a few  seconds and re-root her; don’t put the nipple in passively or pry her mouth open. She knows how to open her mouth when she wants to, right? 🙂  Just be patient and listen to her:-)

A swaddled elevated sidelying position with her head higher than her hips will help ease WOB and facilitate organization as well. I’d also suggest you consider a controllable flow rate (slow flow rate) as that may indirectly also help the infant manage optimally if there are even subtle breathing issues, likely with his co-morbidities. Dr. Brown’s preemie (slow flow) nipple has worked well with similar infants in my experience.

Take a look at my article “Reading the Feeding” in the ASHA leader archives or you can find it on my website http://www.shaker4swallowingandfeeding.com under the publications tab. It details infant breathing behaviors/cues that guide the feeder to understand what is happening and why.

I hope this is helpful.

Catherine