Question:

I was just consulted on an infant with a history of jejunal atresia with repair. He was born at 33 weeks GA and is now 41 weeks. He reportedly has consumed 50-90mL adlib on demand per physician of breast milk via bottle. Mother reports feeding every 3-4 hours. The OT that has been working with this little one has incorporated use of a slow flow nipple and external pacing which reportedly assists with coordination and reduces frequency of adverse events but the infant continues to demonstrate physiological instability. During some feedings he demonstrates coughing within a few minutes of onset of feeding. Mother reports that any change or disruption of coordination results in change of physiological stability. These episodes occur during as well as after feeding in which he is demonstrating coughing, occasional color change, desaturation, and bradycardia (both during and after feeds). The RN and mother indicate that on a couple of occasions at night, he has required blow-by. No significant spit ups noted, however, RN reports that on one occasion, small amount observed on external nares. They have reportedly attempted various nipples, positioning, and have also tried breast feeding (which resulted in a significant episode). Reflux strategies/precautions have already been implemented but without much improvement.

Reduced coordination is an issue, however, also suspect EER as piece to this. I am trying to determine differential and plan on completing MBS to get a better idea of swallow physiology. Does anyone have any experience with children with this particular diagnosis or thoughts on this case?

Answer:

The jejunal atresia repair in and of itself does not explain the decompensation you report. All we know about history is the infant is a preterm born at 33 weeks. Are there any other co-morbidities such as Neuro or respiratory? Post-op he may have some lower branch of the Vagus-driven atypical sensory GI responses but that would not typically lead to the clinical behaviors you describe. What is his WOB like at baseline and how does it vary with the aerobic demands of feeding? Does the infant otherwise present as a typical former 33 weaker at his current adjusted age? Can the events appear to be averted by co-regulated pacing that is more strict with an Ultra-preemie nipple? Without knowing the answers to these questions, I would be asking to complete an instrumental assessment to objectify swallowing physiology and determine if there is normal physiology which is being altered under certain conditions or if physiology is impaired, what the etiology is (or etiologies are) that lead to bolus mid-direction. The clinical behaviors you describe in this neonate are ones I typically see associated with aspiration. To continue to feed the infant despite volumes ingested given these adverse overt events does not support neuroprotection and may lead to feeding refusals.

I do not think the thermal stimulation suggested would be advisable as we have at this point no known etiology for the events observed. Every intervention should be thoughtfully matched with clinical behaviors and etiology, and used within an evidence-based framework. At this juncture in your differential, the data don’t lead us in that direction.

Of course EER (Extra Esophageal Reflux) may indeed be part of what is happening but we cannot assume that. It is possible that EER events are co-occurring during swallowing, which could result in bolus mis-direction if the infant’s swallowing physiology is indeed altered in the moment by the EER. It is possible the decompensation observed during PO feeding is due solely to EER events (bolus mis-direction from below) that is occurring both during feeding and at non-feeding times. Hopefully an incidental finding of EER would then be captured by the radiologist during the swallow study. Alternatively, the events of decompensation observed clinically may indeed reflect a true dysphagia –but if so, the etiology (or etiologies) can then be determined during the swallow study. An instrumental assessment will give us an impression of the possibly multiple factors impacting the dynamic swallow pathway. This then can inform the differential and then guide both the SLP and the entire team in terms of next steps for intervention as well as further diagnostic workup.

I hope this is helpful.

Catherine

Question:
I have not yet personally seen this baby (he’s 2-3 months old), but got some background info from our NICU ST. I’m trying to brainstorm before he sees me for a follow up appointment. Baby had VFSS in NICU and was safe on thickened formula (nectar, I believe) with baby oatmeal. Baby never took off with feeding while in the NICU and was d/c with NG and doing 1-2 bottles/day. As baby has been home he’s having painful constipation issues and thickened feeds have stopped. Baby is to have follow up with GI, but will end up seeing me before them.
He’s coming back as an outpatient for a repeat VFSS. Now, in a perfect world he’ll pass without thickener… but if not, I’m wondering what my options are for thickening feeds? Has anyone thickened for infants with something other than baby oatmeal/rice cereal? Is there another option besides cereal and NG tube?

Answer:
Late responding to this thread. You may have already seen this infant for the repeat VFSS by now. We don’t know much about his history except that he was in NICU, which leaves a wide potential for possible co-morbidities that would be important to your differential in radiology. The GI discomfort you mention makes EER/GER a possible co-mrobidities but there are likely others that you will want to both peel apart and consider together “synactively” to better understand his dynamic swallow and its function during feeding given what you find out about his feeding “environment”, i.e., how he is fed, bottle used, his clinical presentation while he feeds and post-feeding behaviors

Hopefully you were able to get more information about why he was placed on nectar thick liquids post-NICU VFSS – the etiology for the apparent bolus mis-direction should guide you in the follow up study and help you problem-solve as well as look at optimal interventions to address that etiology –sometimes thickening is viewed as a solution but it is not, as you know. As Suzanne Evans Morris said years ago, it is merely a step along the way to improved swallowing. When the VFSS analysis and synthesis of information informs our understanding of the infant’s physiology, we can then develop a plan of care to address both the etiology as well as an interim plan to optimize safety.

We try both in the NICU and with infants either post-NICU, or who were never in NICU, to avoid thickening whenever possible. Because toady we have so many flow controlled nipple options, we are much more able in radiology to find a nipple flow rate combined with co-regulated pacing that optimizes bolus size and enhances timing of the suck-swallow-breathe sequence. There aren’t many options to thicken for infants. Our GI docs have concern for grain allergy in infants, increased constipation, and other MD specialist often have their own concerns (altering of caloric density and nutrients, electrolyte balance, free water etc.) Gel Mix is a newer carob bean based thickening product developed by a GI doc that some hospitals are using for some post-term infants. You can find more information on the internet or by talking to its developer. It is often helpful to partner with the attending, in this case likely a pediatrician, to ask, if thickening appears to be the least problematic option, what would he prefer his patient receive. As many previous list serve threads have expressed, the answers for each patient must be individualized, be the product of a team’s perspectives, and its effects be assessed in an on-going manner. It is challenging to live in the “gray” zone where the answers are not black and white nor are they immediately clear, but require deliberate and reflective thinking. Each of us in radiology is faced daily with this dilemma, and I think it makes us better clinicians at the end of the day. Our physician colleagues have always considered risk-benefit ratios for their patients regarding multiple options, and we can do no less, considering all levels of evidence and family/team input.

I hope this is helpful. Keep us posted on what the repeat VFSS suggested.

Catherine

I recently received an email with questions from an experienced SLP posed by the neonatologists at her large level IV NICU regarding swallow studies. There are of course no black and white answers, and the evidence-base is lacking, we know, but thought I’d share my comments/perspectives.

Her questions follow. My responses are in italics:

” A lot of concern has come to light regarding how we perform MBSS.  The physicians feel it is not a fair assessment given altered positioning, transport to the fluoroscopy suite which may negatively impact regulation and physiology of these infants, and strategies used.  The swallow study is only a moment in time and looks at physiology not just aspiration (or bolus mis-direction), so, given that, the data we can extrapolate during an instrumental assessment may be more useful, than they realize, to help complete a differential and develop a plan of care. 

Would you mind answering the following:

1. Do you always assess in sidelying?  If semi-reclined, do you start that way and transition into sidelying routinely or if you feel this position may change outcomes? If swaddled elevated sidelying is the typical positon the infant is fed in, yes; if not, I would look at typical position, and then determine if objectifying sidelying as a helpful intervention is indeed justified by the added exposure, based on physiology observed, co-morbidities and interventions trialed.

  2. Do you feed for a certain time frame or percentage of the volume that infant consumes bedside, prior to the study To build in a fatigue factor, I would observe briefly under fluoroscopy at the start of feeding and then feed off line with periodic imaging as indicated for that infant’s differential and based on what is typical for him. That way we see physiology at the start and then intermittently to objectify impact of fatigue on physiology over time.

3. Are there parameters for duration between studies if you note significant clinical improvements during bedside feeds? I typically image as infrequently as possible. If we are not chasing the ‘aspiration” event but rather assessing physiology in radiology, my sense is we then focus on and ask ourselves what component(s) of the etiology (or etiologies) observed on the previous study may have changed in the interim. And if the etiology or etiologies have not resolved, why radiate the infant again with little potential for change in physiology? Too many MDs want us to keep repeating studies to “look for aspiration” and therefore if we “just do one more study” maybe we won’t capture aspiration, right? And then we don’t “capture aspiration” in that moment, and someone concludes incorrectly, therefore, that the infant “passes”, is “safe to feed”, is “cleared to eat”?? That is the thinking I believe that incorrectly follows when the procedure is inadvertently presented as such or viewed as such. That is not the best use of the procedure nor in the infant’s best interest when we look at the “cost ” long-term of added radiation (which we know the AAP is quiet concerned about, especially with infants). The type of “revised” thinking that I am advocating for is often out of the box for many of our neonatologists, but I find that once we have this level of critical reflective thinking and dialogue with neonatologists, then they better understand the role of physiology (normal versus altered versus impaired) and the judicious use of video fluoroscopic swallowing studies in the NICU. They too can learn to look beyond aspiration if we guide them. But it starts with us and these conversations. The dynamic nature of swallowing in the context of the infant’s co-morbidities must always ground us and guide our clinical reasoning.

I hope this is helpful to my NICU colleagues!

Catherine

http://www.Shaker4SwallowingandFeeding.com

Question:
Hello!  I work in a children’s hospital with a level 4 NICU.  Our SLPs know that thickening is our last resort, so to speak, in terms of interventions that we provide for these infants (positioning, nipple flow rate, etc.)  Our hospital is currently using rice cereal to thicken feedings if needed based on MBS.  We are exploring GelMix as an option, but this hasn’t been cleared by our Neos or GIs.  Does anyone have any evidence/research to support using a combination of 50/50 breast milk and formula and thickening with rice cereal?  We know that rice is broken down in breast milk, but if we do a 50/50 mix, is that enough for the rice to bind and maintain a thicker consistency?  Do any of you have protocols for those infants with swallow dysfunction in terms of breast-feeding?  Thank you so much for any feedback!!

Answer:

At the end of that post you asked about protocols for “infants with swallowing dysfunction in terms of breastfeeding”.

I am assuming you are asking about infants who are bottle-feeding and breastfeeding and had a swallow study done that showed an impairment or alteration in swallowing physiology with bottle-feeding that resulted in bolus- misdirection and potentially aspiration?

An infant may indeed have an alteration or impairment in his underlying swallowing physiology that will adversely affect the biomechanics of swallowing and lead to bolus mis-direction both toward/into the laryngeal and/or nasopharyngeal airway. In infants of course, who are by nature obligate nasal breathers, the mis-direction and its etiolog(ies) must be carefully considered.

Because of the unique physiology of breastfeeding, it is uncommon that infants will show overt decompensation with breastfeeding but possible. I have found clinically that those infants who decompensate during breastfeeding often have a true alteration or impairment in swallowing physiology. Breastfeeding is actually easier than bottle feeding, even for preemies, so it is possible an infant may not experience an alteration or impairment of swallowing physiology at breast though it was observed in radiology with bottle-feeding. Take a look at the multiple “gold standard’ writings of Paula Meier, Goldfield and Nyqvist regarding the unique physiology of breastfeeding suggesting it is likely most supportive of airway protection for infants.

My clinical experience and reading of the literature has lead me to hypothesize  that those infants whose etiology for impaired swallowing physiology is flow rate and/or coordination of suck-swallow-breathe, in the presence of normal structural integrity of the airway and oral-pharyngeal mechanism, may do quite well with breastfeeding. Breastfeeding optimizes flow rate regulation and provides “windows of opportunity” for breathing so well described by Goldfield; it is this then that likely optimizes bolus control. However when there are issues with structural integrity of the airway (i.e. vocal cord paresis/paralysis, laryngomalacia, tracheomalacia) the “protective nature” of breastfeeding may no longer be realized, if you will.

There is no way to study my hypothesis since we cannot observe breastfeeding under fluoroscopy. However, working closely with pulmonologists, ENTs and neonatologist’s, we have together carefully considered each infant, his co-morbidities and what we know from the science of breastfeeding to inform our decisions about breastfeeding given objective data obtained during bottle-feeding.

I suspect your question, which is a good one, may have been prompted by infants who had a swallow study with the bottle from which “aspiration” findings are being generalized to breastfeeding. I don’t think its that simple, as I hope my thoughts above suggest.
Unfortunately the complexity of the infants we follow requires us to pause at each juncture in the clinical process, and allow ourselves to think in the “gray zone” as I like to call it. Not expecting quick answers but rather allowing reflection, carefully weighing that infant’s history, co-morbidities, clinical and instrumental findings and the evidence-base to complete a solid differential. From there, we dialogue with the team to develop a plan of care and interventions to hopefully minimize risk while optimizing both neuroprotection, skill progression and the infant-mother relationship. It is a challenging balancing act every day for us and so we keep asking questions and learning.

I hope this provides some food for thought and is helpful.

Catherine

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

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

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

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.