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
By: Elizabeth Anderson, firstname.lastname@example.org
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.