Commentary by Diane Bahr, MS, CCC-SLP, CIMI, Infant Feeding Specialist
I would like to tell you about one family’s NICU (neonatal intensive care) experience from which we can hopefully all learn. I will also present some recommendations at the end of the article for parents who may find themselves in a similar situation.
The baby was born near term at 38 weeks (two weeks early). While the mom’s water was clear when it broke, the baby had meconium aspiration and very low blood sugar at birth. Both of the mom’s previous children (a 36-week preemie and a 39-week near term) also had low blood sugar at birth. The 36-weeker spent 5 days in NICU and was bottle and breast fed. The 39-weeker spent one day in a special care nursery and was breast and bottle fed.
However, the new baby (the 38-weeker) ended up spending 17 days in the NICU. By day 6, the meconium aspiration had been treated and resolved, but the baby was on continuous feedings via an NG (nasogastric) tube and had a PICC (peripherally inserted central catheter) line. The baby was only being placed at mom’s breast for nuzzling, although he had latched at birth. He also had approximately a ½ inch open sore on his bottom, severe diaper rash, and a hive-like rash all over his body. When one neonatologist was asked about this, he said the formula fortifier could be the cause of the rash. Yet, the breastmilk needed the fortification and only one type of fortifier was available. This particular neonatologist also suggested the low blood sugar may have resulted from the stress of delivery. Four different neonatologists attended to the baby during the 17-day stay.
The family believed the NICU staff members were well-trained based on the family’s previous experiences with NICU and special care nurseries. Therefore, the family proceeded carefully with thoughts and questions for the NICU staff. However, both mom and grandmother were speech-language pathologists with significant experience supporting near term babies, former preemies, and their families with various feeding issues. The grandmother had been a feeding therapist most of her career.
Around day 7 or 8, the mom asked why the baby was not being bottle fed as he was latching onto her breast for at least 5 minutes with a nutritive suck and the PICC line had been removed. The nurses then began some bottle feeding with a slow flow nipple (per mom’s request). Mom also arranged to have family members present for 4 to 5 feedings per day on the 3-hour schedule recommended by the hospital. The mom could not stay full-time at the hospital as she had two other young children at home and her husband was working.
Within a day of using a slow flow nipple, the nurses moved the baby to a regular flow nipple. The mom and grandmother noticed this when they fed the baby because his respiration was different; he was also coughing and refluxing even when well-positioned and offered paced bottle feedings. After he refluxed all of the formula from both the bottle with a regular flow nipple and then from the subsequent NG tube feeding, the primary neonatologist agreed to change the formula and the family again requested the nurses use a slow flow nipple.
Both rashes and reflux may indicate a baby is sensitive to the formula being used. Reflux may also occur when a baby’s stomach fills too quickly or is over full. Newborn babies have very small stomachs, and this baby had been continuously fed with an NG tube prior to the introduction of bottle feeding, so his stomach was likely very small. See http://www.ameda.com/breastfeeding/the-first-12-months.
Within a day of changing the formula, the hive-like rash went away, the diaper rash and open sore began to resolve, and the baby began taking the breast for approximately 15 minutes at a time. When originally presented with the idea of changing the formula, the primary neonatologist said, while one can’t compare babies to dogs, these babies are very sensitive and often won’t eat when formula is changed, similar to when a dog’s food is changed. However, the formula change was successful.
The mom and family then began to ask the primary neonatologist some other questions. When asked about the effect of the extended hospital stay on bonding, he said he didn’t see that problem with these babies. When asked about the possibility of the NG tube disrupting feeding and swallowing, he said these babies don’t have a problem with the NG tube. When asked about the protocol for discharge, he said there was not a protocol for these babies. While the mom and dad were frequently told by staff the baby would likely be discharged any day, the primary neonatologist said the baby likely needed to stay at least two weeks.
The mom and dad were concerned about the stress being placed on the baby (via the prolonged hospital stay) contributing to the baby’s low blood sugar. They were also concerned their baby was not being treated as an individual by the frequent use of the term “these babies” when speaking with the neonatologist.
The nurses (of whom there were many) were provided with Catherine Shaker’s article on the benefits of using a slow flow nipple. Catherine Shaker is a neonatal speech-language pathologist who specializes in feeding preterm infants. While the family requested a slow flow nipple be used with the baby particularly since mom was breast feeding, most nurses continued to use the regular flow nipple when they fed according to report. They also reported significant reflux which family members did not see after the formula change and while using the slow flow nipple.
The baby did well on the slow flow nipple (which the family requested each time they fed) with paced bottle feeding. During the course of the NICU stay, the parents were told the baby’s blood sugars were not as much of a concern as his nippling. This seemed ironic, since he hadn’t been given many opportunities to nipple with the use of the NG tube. On days 13 and 14, the mom and other family members stayed for a number of consecutive feedings and found the baby seemed to want an on demand (approximately every two hour) schedule for feeding. The baby was becoming very agitated, disorganized, and inconsolable with the 3-hour feeding schedule.
The family requested a 3-day record of the baby’s blood sugars which fluctuated between 40 and 75 but were told they needed to request this information from medical records. The baby’s blood sugars mostly seemed to drop when the family was not present and he was receiving NG tube feedings. So the mom requested a family meeting for herself and her husband with the neonatologist. This occurred on day 15.
The NICU was beautiful and relatively new. They only had a few babies in a large unit, so the census was low. The baby had good attention from NICU staff. The hospital also reportedly had a feeding therapist whom they did not ask to consult to the family’s knowledge. At some point the mom and grandmother mentioned to the neonatologist, nurse practitioner, and nurse (after expressing carefully phrased questions and thoughts for a long time) that they had a Hazelbaker feeder, both types of Medela special needs feeders, syringes, and cup feeders at home to feed the baby if needed. The staff seemed to ignore this as they had the article on slow flow nipples which the family provided. The family also asked if mom and grandmother could do some infant massage and were not given an answer. However, the family played classical music while they were with the baby which seemed to calm everyone.
During the family meeting (Day 15), the mom and dad were finally offered the opportunity to room-in for two days with the baby. The hospital had a beautiful rooming-in suite. During these two days, the mom and dad breast and bottle fed while family members stayed with the other two children at home.
However, the mom said the nurses still wanted to NG tube feed the baby (which she refused). By the end of the two days of rooming-in, the baby’s blood sugars were consistently in the 70s, and the baby was completely breast and bottle fed. The neonatologist said he no longer had a reason to keep the baby in NICU. He also said he had had a number of NICU babies readmitted because the babies were not being fed properly at home. So, apparently mom and dad had to prove their skill no matter what their knowledge and experience. The baby finally came home on Day 18 with a very large hospital bill to follow.
The baby visited the pediatrician the next day who said the baby was doing well despite all he had been through. So, the family wondered, “If this is what two well-trained feeding therapists experienced, what are parents without the training going through?” The family still believes that most NICU staff members are well trained. They are not sure why they experienced this particular series of events. Perhaps it occurred, so they could share their story with you.
During the NICU process, the family felt extremely powerless. While there were a number of very caring staff, somehow the individuality of the family and baby seemed to be lost with so many staff members treating the case. This was a troubling and extremely stressful experience for the family, and it took a period of time after the baby came home for the baby and family to recover from PTSD (posttraumatic stress disorder) type symptoms. While the NICU staff listened to the family’s concerns during the hospital stay, they seemed reluctant to move forward with the family’s requests. This was likely because they felt they knew best what the baby needed based on their own clinical experiences. However, this goes against evidence-based practice where the best research evidence, clinical expertise, and patient values/preferences are given equal merit.
If you are a parent of a newborn baby in a NICU or a special care nursery, please ASK QUESTIONS about everything that concerns you and advocate for your baby. Attain the best information you possibly can. And, know that most NICU and special care nursery folks are very well trained. Here are some recommendations to assist you with the process:
• Be a partner in your baby’s treatment from the beginning of your process. You, your baby, and the professionals working with your baby are all part of your team.
• Know that asking questions is a way of gathering information and sharing another person’s perspective which may give everyone on the team a broader perspective. Well-placed questions can help everyone think through the process in partnership. You may want to begin your questions with something like, “I am wondering about _____. What do you think?”
• If professionals refer to “these babies” in their comments, ask if they are talking about trends they see in the babies they treat. Then, ask how your baby is unique in his or her medical needs and care. Share what you experience with your baby and what you observe.
• Ask about the short and long-term medical impact on what your baby is experiencing (e.g., What is the medical impact of low or shifting blood sugar?) and what the doctor and staff want to see as the plan of care progresses (e.g., What is the short and long-term plan of care?). Ask to obtain the hospital protocol for your baby’s condition in writing if possible.
• Involve your baby’s pediatrician if possible. Pediatricians are an extra set of eyes, usually know the family, and can assist with decisions regarding discharge.
• Read the information on patient/family rights provided by the hospital.
• Work with the charge nurse, unit manager, and primary doctor to attain family-centered care. The family should be involved in care planning as appropriate. This can help avoid inconsistencies in treatment (e.g., nipple use inconsistencies, default to NG instead of on demand feeding, etc.).
• Be a part of your baby’s treatment planning/team process via family meetings and asking for the best research evidence, clinical judgement, and respect for your values (i.e., the three components of evidence-based practice).
• The family has a right to request items for the patient as long as it does not contradict prescribed care. This can be ordered or documented in the medical record and chart. Additionally, reminders can be posted on a board at the patient’s bedside (e.g., use a slow-flow nipple during feeding).
• If many staff members are attending to the baby, ask for the most consistent staff possible.
• Trust your gut or intuition as a parent, and find an advocate if needed. Many facilities have patient care advocates and/or quality assurance folks who can help.
• Get the medical records you need if the staff cannot supply them. Maintain your own record in a small notebook or on your phone regarding tests (e.g., blood sugar results), medications provided, etc. reported by staff.
• If your baby has any type of severe rash or severe reflux, ask about a change in formula. There are formulas that are more easily digested particularly in children who have allergies and sensitivities running in the family.
• If you are not an experienced breast feeding mom or have any problems with breast feeding, ask to have an IBCLC (International Board Certified Lactation Consultant) work with you daily.
• If the hospital NICU or special care nursery has a feeding therapist, ask to work with him or her.
• Read Catherine Shaker’s articles on her website that apply to infants struggling with learning to feed (e.g., https://shaker4swallowingandfeeding.com/posts-2/).
• Get your information from those who typically work in NICUs and special care nurseries such as Catherine Shaker, Heather Clark, Marjorie Meyer Palmer, and Erin Sundseth Ross.
• The book Pre-Feeding Skills by Suzanne Evans Morris and Marsha Dunn Klein has outstanding information on working with preemies and at-risk babies. Most NICU and special care feeding specialists have a copy of this book.
• The New Visions website is a wonderful feeding resource. And, Feeding Matters is a group that provides valuable feeding information for parents and families with a provider directory: www.feedingmatters.org/find-help-in-your-area.
About the Author
Diane Bahr is a visionary with a mission. Her mission is to keep or get children’s mouths on track from birth in feeding, speech, and mouth development/function. For more than 30 years, she has treated children and adults with feeding, motor speech, and mouth function problems. While she is a speech-language pathologist by training, she has also honed her skills as a feeding therapist, published author, international speaker, and university instructor.
Diane has been studying feeding, motor speech, and mouth function for most of her career. Her textbook ORAL MOTOR ASSESSMENT AND TREATMENT: AGES AND STAGES (Allyn & Bacon Publishers, 2001) was the first of its kind, addressing the assessment and treatment of these areas across the lifespan. Diane also co-chaired the Oral Motor Institute study group for 5 years to help improve understanding of oral sensory-motor treatment within the professional community.
Diane's current parent book NOBODY EVER TOLD ME (OR MY MOTHER) THAT! EVERYTHING FROM BOTTLES AND BREATHING TO HEALTHY SPEECH DEVELOPMENT (Sensory World, 2010) is the comprehensive instruction manual for parents and professionals. It outlines and explains specific details of feeding, speech, and mouth development in the first 3 years of a child's life in a parent-friendly manner. Free Parent Book Guides make this book easy-to-use.
Contact Information for Diane Bahr: firstname.lastname@example.org; 702-875-2888; www.agesandstages.net.