Our 10-week-old daughter became very sick with a high fever and we rushed her to the Emergency Department. She was admitted for oxygen support, and shortly thereafter it was discovered that she had aspiration pneumonia. An NG-tube was inserted in her nose, and we were no longer able to feed her with a bottle. In a very short timeframe our world was turned upside down. Ava is our third child, and other than our first child being a “happy spitter,” we never had any experience with anything out of the ordinary in regards to feeding our children.
In the beginning, it was a tough adjustment, stressful and scary. I quickly asked the Occupational Therapist what we could do to help Ava. I didn’t want her to develop any of the oral aversions I was hearing and reading about. She gave us a vibrating Nuk brush and told us to move it around Ava’s mouth for oral stimulation, and that we could also use our clean fingers. She also suggested we let Ava keep her pacifier and use our fingers to help stretch her cheeks, so we did facial massage. Most kids who orally eat will stretch their cheeks naturally when food is in their mouths. We did not start formal therapy sessions at that time, since Ava was 3 months old.
I asked for swallow study after swallow study believing that she would pass that next test. After all, she came in drinking from the bottle. However, after 3 months of swallow studies, it became apparent that this was not a “quick fix.” Yes, she had come into the Emergency Department drinking from a bottle, but obviously not very well. There is a lot of energy and coordination that goes into swallowing, far more than I had considered, and we had to accept that it would take Ava some time to figure it out. Maybe she would never figure it out, and that had to be okay, but we would do what we could to help her, and at her pace. I never wanted feeding to be stressful for her.
After 3 months with an NG-tube our OT told us that we may want to consider a G-tube. I remember feeling relieved when she said that. An odd feeling when a mom is being told her child would need to have surgery for a more permanent feeding tube, but I hated the NG-tube – inserting it, taping it to her face, having to take it off and hurting her delicate skin. It was obvious that she would not magically begin swallowing properly, and I think that all of my hopes were so high for every swallow study because she would be able to have that tape off her face and that tube out of her nose. The truth is that when that OT told us to consider a G-tube it was like receiving permission to move forward and it wouldn’t make me a bad mom to ask about surgery for my child.
At 6 months old, Ava had her G-tube surgery and it was beautiful! We continued with the home OT exercises we had learned: the Nuk brush, facial massage, pacifier, tastes of food now that she was older. We continued to schedule swallow studies, but farther apart than before. If she passed honey thick we would practice with purees. However, she continued to get aspiration pneumonia when we would practice, so we took a break from any thicknesses for a long time, actually until she finally passed thin liquids.
Ava does not have any allergies or motility concerns, so we were able to transition her to a blenderized diet at the age of 1. We were able to wean her from continuous feeds to eating bolus feeds every 3 hours, 6 times a day to eventually 5 feeds a day – breakfast, snack, lunch, snack, dinner.
At 22 months old, Ava finally passed her thin liquid swallow study. She hadn’t had anything to orally eat in almost 1.5 years. She did not know how to drink from a bottle at that time so we transitioned right to a straw cup. I was terrified. I was afraid that even though she had passed the swallow study, she would get sick again like before when eating orally. She didn’t.
We introduced oral purees and puffs in addition to her tube feeds and Ava did fine with them, but was not very interested. I remember trying to substitute one tube fed meal with an oral meal and it took forever, so long that I had to physically restrain myself from just syringing it in. We then went back to just offering oral foods whenever she wanted for practice and tastes, but did not take away any tube feeds. Ava slowly gained more oral muscle control and coordination. After all, she had never really had to figure out how to coordinate all of the parts of chewing and swallowing. Her oral muscles needed a work out. She was also working on her pincer grasp with puffs and other soft items. We continued with this plan for 1.5 years. We did not take away any tube feeds until Ava was 3 years and 3 months old.
Shortly after her 3rd birthday, she was enrolled in an intense therapy program with Physical Therapy and Occupational Therapy. The OT portion focused on eating and teaching her biting skills. The OT would take a bite of a cracker and chew exaggeratedly and talk to Ava. Part of the exaggerated biting was to put the cracker in her mouth lengthwise – so she had to bite down quite far in order to close her mouth, which was a natural response for Ava to do. Talking her through chewing was another aspect of the therapy because Ava would bite the cracker and then let it sit in her mouth. So, we would say, “chew, chew, chew,” while mimicking the chewing. She would open and close her mouth like us with concentrated chewing. They also worked on spoon feeding with pudding or thick yogurt. We are still working on that coordination of spooning foods and not having it fall off the spoon before it gets to her mouth.
During the intense therapy program we began to notice that Ava liked crunchy foods. We introduced cheerios and other toddler foods. My husband is more adventurous than I am and started to let her have pretzels, little pieces of chicken nuggets, fish sticks, pasta, and pizza. Ava’s traditional vegetarian blenderized diet was getting substituted with traditional toddler foods. We began to feed her dinner foods at the table with us while she was simultaneously tube feeding via pump. At one point I wondered how she was fitting all of it into her stomach. We spoke with our dietitian and agreed that we could cut out the dinner tube feed and see how she did. She continued to stay on her new weight curve, which was up from her original curve when we started with the NG-tube 3 years earlier.
Surprisingly, it was our dietitian who encouraged us to continue to cut out feeds and replace orally. I thought I would be the one trying to convince her we were ready. I was scared to do this because the tube had become so integrated into our routine, I could control the amount of vegetables she was getting, and I had to figure out how to get all the calories into her and how much time it would take. The surprise was that Ava led us. She continued to grow in strength and how long it took her to eat meals. Sometimes she was the first one done. Her favorite foods became spaghetti with whole noodles and eating whole pieces of pizza. She would get mad if we cut it for her because she wanted to be like the big kids. We slowly took away the afternoon snack feed, then the lunch feed, then the morning snack feed, and last to go was the breakfast feed (because mornings were more rushed for us, I kept that one the longest).
In hindsight, I was the one who had to be brought along. Ava was ready, but I also believe that we didn’t rush her and so mealtimes stayed positive. We never forced her to eat. Once Ava was ready for more oral meals, the process went fairly quickly. It probably took a few months to completely eliminate tube feeds, but to get to that point took 3 years.
We purchased reusable squeeze pouches and in the morning we use that to help with timing, but we are still working on using a fork and spoon. Ava has low muscle tone and coordination, so this is taking more time, but she is eating everything orally. She loves to drink water and milk from her straw cups. We stopped using her tube completely 3 years after her first NG-tube was placed and removed it altogether 6 months after that.
Why do I believe we were able to successfully wean at home? Patience and Support. I loved Ava’s tube, I did not look at it as a source of stress or something I needed to get rid of, and I looked at it as a blessing that we could safely feed her. I thought I would keep the tube forever, even if she was eating and drinking orally, but the truth is that we kept it when we needed it, and now she is done. There was no time table in my head, and when the right time came to stop using it, we were all ready.
I would like to add that we were fortunate to have a great support team for Ava. My husband, my mom, Ava’s nanny, her school, her pediatrician, her dietitian, and her various therapists all supported Ava with her tube feedings and with her transition to oral eating. Nobody rushed us, scared us, or held us back. This support system and shared goal of helping Ava orally eat on her timeframe was critical to our success.
Summary of timeline from NG tube to 100% oral eating and drinking:
- 10 weeks old – NG-tube placed
- 6 months old – G-tube placed
- 22 months – Thin liquid swallow study passed, oral foods introduced
- 26 months– Learn to drink from straw cup and continued practice with oral foods, keeping tube feeds
- 3 years old – Intense PT and OT program
- Next 3 months – Replace tube fed meals with oral meals
- In the 3rd month – First day of all oral eating and drinking
- Six months later – Button removal