• About Me
    • Disclosure and Disclaimer Policy
  • Blog
  • Shop Ebooks
  • Recommended Products

Pediatric Feeding News

Dedicated to up to date pediatric feeding and dysphagia information

Welcome!

Hi, I'm Krisi Brackett, PhD, CCC-SLP,C/NDT. This blog is dedicated to current information on pediatric feeding and swallowing issues. Email me at feedingnewsletter@gmail.com with questions.

Read More About Me Here...
  • Feeding Flock
    Research
  • For Parents
    & Caregivers
  • View The
    Resources
  • Pediatric Feeding
    & Dysphagia Newsletter
    • Volume 1
    • Volume 2
    • Volume 3
    • Volume 4
    • Volume 5
    • Volume 6
    • Volume 7
    • Volume 8
    • Volume 9
    • Volume 10
  • Workshops &
    Presentations
  • Work
    With Me
  • Links
    We Like

Feeding Harley

January 5, 2019 by Krisi Brackett 1 Comment

I am excited to share Harley’s story, written by his Mother about her journey to help her son wean from his g-tube and become an oral feeder. Thank you Liz for sharing and inspiring us all to continue looking for answers! I feel I do need post a medical disclaimer. All children are different and respond differently to intervention. Any post on my blog should be taken as general advice and any changes made to a child’s tube feeding should be done with consultation with the child’s pediatrician or a medical professional. -Krisi

Feeding Harley

By: Elizabeth Anderson, ea.boon@yahoo.com

Harley Jarrard Anderson was born on Christmas Eve, 2017,  at week 25 + 4.  He weighed 1 lb, 6.6 oz, and was 12” long. He was absolutely beautiful, and hooked up to nearly every type of NICU equipment.  His pregnancy had been extremely complicated and we were actually glad to be able to keep a better eye on him after birth.  He was fed intravenously for a few days, and then fed breast milk and HMF (Human Milk Fortifier) through an NG tube.   He continued to mature, and to overcome obstacle after obstacle.  On March 30, 2018, his respiratory support was lowered enough for him to try out a bottle. He happily drank 15 ml. 

The next day or so, Harley came down with a virus as well as a recurrence of e-coli in his bloodstream.  Feeding attempts were halted while he was again in isolation, and being given a 14 day course of antibiotics.  When he was feeling better, we continued to try to bottle feed him.  For the first time, on April 23, 2018, he drank a full bottle of 70 ml.  This was several weeks after his due date of April 4.  Unfortunately, this was the exception.  Harley tended to drink about 30% of his meals orally, and the rest of his milk was fed through the NG tube. He also practiced nursing, but did not drink full meals due both to his endurance and my milk supply.  He was fed every three hours on schedule, and was offered a bottle before each tube feeding.  To complicate matters, it was suspected that he suffered from reflux.  As Harley matured, his breast milk was fortified with Neosure, rather than the HMF.  This led to a terrible diaper rash.  We switched to fortifying with Nutramigen, which led to constipation.  We started to fortify his milk with Hipp Combiotic.  

There was talk of a G tube and Nissen Fundoplication surgery.  Harley’s father and I agonized over this.  We absolutely did not want either surgery for our son.  I stayed for 12 hours one day, and took charge of all of his feedings.  He barely ate for me that day.  Finally, we agreed to have the surgery done.  We were told that it was the only way to get him home as babies are not sent home with NG tubes in our city.  I will never forget how Harley drank a full bottle of unfortified breastmilk right before his surgery.  

The surgery was on May 4, and Harley came off of all respiratory support directly after the surgery.  This showed us that reflux indeed had been causing him to have trouble breathing. We were very happy to know that he would now be coming home without oxygen support.  His eating though, was not the same as it had been before the surgery.  Attempting to breast feed had slowed my milk supply, and recovering from surgery had slowed Harley’s oral eating.  He came home on May 10, with a schedule of continuous feeds at night, and hour long timed feeding during the day.  

When Harley was home, we found that he cried terribly every time we tried to feed him.  He reacted as if he was in severe pain.  His father and I were distraught because his eating habits were different than they had been while he was in the NICU.  He had been released to us with an “endurance” issue, but that was not what we experienced.  He would drink an ounce of milk, and then scream and arch.  We ended up tube feeding the rest of each meal.  

We started our long journey to eating recovery by going to our pediatrician.  Harley was prescribed reflux medication, and we were referred to our local GI specialist.  We gave him the medication, and we saw no difference.  When we saw the GI specialist, it was suggested that Harley might have a milk protein allergy.  We were given a sample of Elecare to try.  At this time, I also stopped feeding him the remainder of my breast milk because I had not been eating dairy free. Also, I really wanted him to drink it when he could enjoy it.  I had found it impossible to keep up with pumping while attempting to bottle feed, tube feeding and also taking care of his 2 year old sister.  

At this time, Harley was drinking about 5 ounces a day orally.  The one day that we gave him Elecare, he drank about 2 ounces.  We tasted it, and it was terrible! We went back to Hipp Combiotic.  We eventually settled on Hipp HA, just in case Harley did have some trouble with dairy proteins.  Harley was prescribed a stronger reflux medication though his GI specialist, and we also decided to seek further help through a different GI specialist.  We had too many questions that were not being answered.  Harley’s reaction to being offered the bottle was so severe that we were worried that something had gone wrong with his abdominal surgery.  We had a complete abdominal ultrasound done, and his digestive organs looked fine.  We had a swallow study done, and he was not aspirating milk.  We took him to a local speech language therapist, and she watched him eat.  He cried so hard that she suggested that he might have EOE, and referred us to another specialist, who found that he did not have EOE.  At this time, we had reached the end of the road with two GI specialists.  After a PH impedance test that proved that Harley did not have reflux at all, one GI specialist said that if he was still not eating as a toddler, that an intensive feeding clinic was a possibility.  At the advice of our other GI specialist, we took Harley to a neurologist, who found him just fine.  She suggested that we give him a break from oral eating and just tube feed him for a while.  We live in Savannah, Georgia, and we were on the verge of planning a trip to Boston to seek answers.   

During this time, Dave and I were keeping records of Harley’s oral eating.  He was drinking about 2-5 ounces a day, with an amount of 8 ounces a day, about once a week.  Every meal was agonizing.  At night, during his continuous feeds, he still grunted and grumbled.  We researched as much as we could.  We looked up the symptoms of visceral hyperalgesia.  One GI specialist had said that it could not be this, and the other was about to prescribe a nerve drug when we came across Rowena Bennett.  

During my daily research, I found the work of Rowena Bennett.  She offers support for children with G tubes and those with bottle aversion.  We scheduled a FaceTime consultation on July 29, 2018.  Ms. Bennett gave us a tube weaning protocol that would avoid dehydration.  The goal was to provoke hunger so that Harley would eat, in a safe manner that would not lead to dehydration.  We were to bottle feed him, and then top him off with a tube feeding if necessary.  I had been dabbling with this a little bit in the precious week, but I did not have the education necessary to do it in an informed manner.  I turned out that we did not need to do any calculations.  On the first day that we stopped tube feeding Harley, he drank 18 oz.  We gave him one timed tube feed that night.  I let Ms. Bennett know of his process and she said to just stop tube feeding him.  We did, and he was drinking about 20-21 oz of formula by the next day.  She also gave us a system of feeding that is used for babies with bottle aversion.  She was not sure if Harley was actually adverse to bottles or was simple not hungry enough to eat.  Having been tube fed on a schedule for his entire life outside the womb, Harley had never had the chance to respond to his own hunger signals.  

Harley’s G tube was removed on August 20, 2018.  His surgeon wanted to see weight gain on only bottles, and to give us a few weeks to make sure that we no longer needed the tube.  When we were discussing the G Tube surgery in the NICU, we were told that he would probably need the tube for three months.  In fact, this is exactly what happened.  What we were not aware of was that some babies are not able to learn to bottle feed when they are offered the bottle first, and then always tube fed the remainder.  In Harley’s case, he required medical support for eating for quite a while.  We realized that in our community, there was not professional support for tube weaning an infant.  I am so thankful that I was able to find this information on my own.  

Now that Harley is a big boy of almost a year, he has started to eat solids.  Again, this was a process.  We had first offered solids when Harley was 6 months adjusted, and we realized that he was not yet ready.  We tried again at 7 months adjusted.  He really wanted the spoon most of all.  I found some  soft silicone spoons, and fed him while he played with one of his spoons.  Due to his Nissen surgery, Harley has a complicated gag reflex.  He can spit up, but it is not as easily as it would have been had he not had this surgery.  Once, after successfully trying some avocado, Harley accidentally gagged on his spoon.  He spit up not only his avocado, but the entire bottle that he had previously drank.  I was so discouraged! 

Around this time, we went to a dietician appointment.  She said that Harley should be eating 100 more calories a day.  Easier said than done, I thought! However, I found myself inspired and we have had success with this. I decided to put him on my lap and feed him by hand.  I feed him purees from my finger just as one would eat cake batter or sample frosting.  He loves it! He cannot gag, and there is no spoon for distraction.  Our dietitian had also mention that I should add fat to his diet.  Each day, I feed him a half teaspoon of high vitamin butter oil, and a serving of infant fish oil.  He laps the butter oil off of my finger, and I mix the fish oil with his food.  So far, Harley enjoys applesauce, winter squash, avocado and the meals from Serenity Kids, which are paleo pouches of meat and vegetables.  He is putting on weight and enjoying his meals.  Sometimes, he even yells at me for more food, and this is truly music to my ears.

As we have just celebrated Harley’s first birthday, his journey is fresh in my mind.  We are so thankful to the medical professionals who saved our boy.  When it came to feeding him, we found a lack of information, but we were able to overcome this through our own research.  I am excited to share our story in hopes that it inspires other parents to keep seeking, and offers another point of view to medical professionals.  

Addendum: I asked Liz, if Harley lost weight during the tube wean. She replied:

The first day that we cut out tube feeds, we did give him an overnight 4 oz. He had already had 18 oz that day. That was the last tube feed! We never needed any water, though it was in the plan to avoid dehydration if necessary.  He really did just start eating. Prior to stopping tube feeding, Harley had always gained as expected because we had tube fed a prescribed amount (23 oz) every day. 

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)

Related

Filed Under: Case Studies, Uncategorized Tagged With: feeding case, tube weaning

Comments

    Leave a Reply Cancel reply

    Your email address will not be published. Required fields are marked *

  1. Ann says

    February 4, 2019 at 6:51 pm

    Very empowering!
    My son also was born with very low weight ,we still struggling getting him to gain weight at 15month of age.
    I love to read stories which always can open our eyes to a different techniques that we never thought about.

    Thank you for sharing, God bless your family and your little one.
    I hope every child find the answers to his feeding difficulties.

    Reply

Work with Krisi

Professional Consulting
Individualized Professional Training
Caregiver/Family Coaching

Girl Image
Click here for more infomation

Cart

Products

  • When Your Child Can't Or Won't Eat When Your Child Can't Or Won't Eat $10.00

Recent Posts

  • Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • A Gold Standard for Meals with Children Using NG Tubes
  • Feeding Matters – Get Curious!
  • Universal Aspects in Feeding Intervention
  • Handout Info- Feeding and Syndrome Info

Recent Comments

  • Taralee Morgan on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • Debbie Frierson on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • NEYTZA RODRIGUEZ on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • Tara Wiley on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • Gloria Macias-DeFrance on Feeding Flock – Feeding Assessment Tools

Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar

Hello! I wanted to let you know about a free talk I am giving tomorrow with my colleagues Dr. Carmen Caruthers and Janet Martin. We are going to talk about our collaboration between the UNC TEACCH program and the feeding team and how we are working with some of our kiddos. Sorry for the late notice. It's 9-11:30 (not recorded)- please come if you are free! - Krisi Keep Reading >>

Feeding Treatment

Universal Aspects in Feeding Intervention

Let's talk about universal aspects in feeding interventionThis is any idea I have been playing around with for awhile now. We all know that there are different strategies and philosophies in feeding treatment. This is a good thing- we need many Keep Reading >>

Understanding Parenting Styles in Feeding Therapy

As feeding therapists, we work closely with caregivers and parents. Perhaps our biggest success in feeding intervention is helping a parent be able to feed their child. One way we do this is to help caregivers understand their child's cues and how to Keep Reading >>

Involving Caregivers in Feeding Therapy

Feeding children is a dyad between the child and their caregiver who is responsible to buying, preparing, and presenting food. In all of my classes whether it be for professionals or graduate students, I talk about the importance and benefits of Keep Reading >>

Adapted Baby Led Weaning

Information from Jill Rabin CCC-SLP/L, IBCLCI wanted to share some resources for adapted baby led weaning from Jill Rabin. I was lucky enough to catch a free seminar last month from Jill which inspired me to add in some of these techniques to my Keep Reading >>

More This Way

Swallowing

Implementing FEES for Infants in CVICU & NICU

BackTable / ENT / Podcast / Episode #165Implementing FEES for Infants in CVICU & NICU with Olivia Brooks, SLPIn this episode, pediatric speech language pathologist (SLP) Olivia Brooks (University of Florida Shands Hospital) shares her experience Keep Reading >>

What is a MBSS- video for kids

I wanted to share a video we made to help children coming to UNC for a modified barium swallow study. Please share with your clients if you think it is helpful. It's also on our feeding team page Keep Reading >>

Swallowing Difficulties May Be Caused by Misfiring Neurons

in Genetic Engineering & Biotechnology News (GEN)Pediatric dysphagia (swallowing difficulties) is a frequent and serious clinical complication in a large number of clinically defined neurodevelopmental disorders including the genetic childhood Keep Reading >>

Swallow: A Documentary- Dysphagia

Nice Documentary on Dysphagia from the National Foundation of Swallowing Disorders. Keep Up the Good Work Everyone! Keep Reading >>

Oral-Motor and Sensory

Impact of Oral Motor Impairment in Infants with Poor Feeding Webinar

Impact of Oral Motor Impairment in Infants with Poor Feeding Presented by Debra Beckman, MS, CCC-SLP, https://www.beckmanoralmotor.com/A few weeks ago I had the pleasure of attending a wonderful free webinar presented by Debra Beckman, MS, Keep Reading >>

Musculus masseter pars coronidea

Scientists Just Identified a Brand New Muscle Layer in The Human Jaw DAVID NIELD23 DECEMBER 2021 It turns out there are still exciting new discoveries to be made in a field as well-studied as human anatomy: researchers have confirmed the existence of Keep Reading >>

Poster: Child Cain’t Chew

This poster from 2018 was shared with me by Sally Asquith who gave permission to post here. The objective of this study: REVIEW CURRENT LITERATURE PERTINENT TO THE ROLE OF ORAL-MOTOR DEVELOPMENT IN DX AND TX OF PFD. COMPLETE A RETROSPECTIVE CHART Keep Reading >>

The Sensory-Motor Approach to Modified Baby-Led Weaning for Babies with Feeding Challenges

by Jill Rabin & Lori Overland Baby-Led Weaning has become “all the rage” with many parents choosing this method of transitioning their little ones to solid foods. Everyone is jumping in, with speech pathologists, dietitians, occupational Keep Reading >>

More This Way

Case Studies

Challenging case with advice from Suzanne Evans Morris, PhD

In this post, I have described a challenging case  and solicited advice from Suzanne Evans Morris, PhD, one of the experts in our field. Suzanne graciously provided commentary and advice and challenged me to look differently at the feeding Keep Reading >>

Complex Case – Changing Therapy Strategies When Needed

Complex Case - Changing Therapy Strategies When Needed*I shared this case with Suzanne Evans Morris and she provided some   guidance and analysis at the end. Hope you enjoy John is a 6 year old male with a complex medical history:Downs Keep Reading >>

Feeding Harley

I am excited to share Harley’s story, written by his Mother about her journey to help her son wean from his g-tube and become an oral feeder. Thank you Liz for sharing and inspiring us all to continue looking for answers! I feel I do need post a Keep Reading >>

Cases From Clinic

Cases From Clinic This is my second post highlighting some of our kids and how we provide multidisciplinary intervention using a medical/nutritional/behavioral approach. I post this hoping it might give some treatment ideas to clinicians. There Keep Reading >>

More This Way

search

Categories

Recent Posts

  • Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • A Gold Standard for Meals with Children Using NG Tubes
  • Feeding Matters – Get Curious!
  • Universal Aspects in Feeding Intervention
  • Handout Info- Feeding and Syndrome Info

Recent Comments

  • Taralee Morgan on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • Debbie Frierson on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • NEYTZA RODRIGUEZ on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • Tara Wiley on Special Considerations in the Treatment of Pediatric Feeding Disorders in Autistic Patients (2.5 Hours)- Free webinar
  • Gloria Macias-DeFrance on Feeding Flock – Feeding Assessment Tools

Archives

search

Categories

Archives

My Account | Shop | Shopping Cart
Copyright ©2025, Pediatric Feeding News. All Rights Reserved. Custom design by Pixel Me Designs
 

Loading Comments...