Five Things I Have Learned Transitioning My Son from G-Tube to Oral Feeding
In the past, Nathaniel's quarterly GI appointments offered reason to write about feeding issues and most recently his progress transitioning from g-tube to oral feeding. I skipped writing about April's appointment because there was nothing spectacular to share. Nathaniel's extended PICU stay at the end of February required us to return to full g-tube feeds. He lost two pounds while sick and had no desire to eat orally when discharged. I write a bit about that recovery here.
I probably should have written about feeding through that season. The ebb and flow between success with oral feeding and necessary reliance on the g-tube has been very much a part of the transition.
When we saw him in the spring, Nathaniel's gastroenterologist encouraged me to cut back on g-tube calories as soon as Nathaniel demonstrated a desire to eat orally again. We offered three meals a day and all his preferred foods consistently. It wasn't until the first part of May that we could reduce g-tube calories. By early June, Nathaniel returned to his previous regiment - half his daily caloric needs by g-tube. New this summer, I do not analyze daily how much he eats or add g-tube calories at night if his oral intake is low. He is receiving the same number of calories by g-tube daily regardless of how he well eats orally. He has good days and bad days. The most minor respiratory changes, even an increase in coughing when outdoors on a high humidity day, reduce his desire to eat orally. Some days the g-tube calories are all he receives. Some days he eats so well orally that I suspect the g-tube calories are not needed. The GI tells me the fluctuation is normal. Nathaniel had a small weight gain this last quarter; the physician encouraged me to continue what I am doing. We likely need a more significant weight gain to reduce g-tube calories further.
Nathaniel had a feeding therapy appointment in the spring too. His oral skills continue to improve. Tongue movement was drastically better. He no longer needs to reposition the food in his mouth with his hand. I was encouraged to offer him chewier textures in stick form to strengthen his jaw muscles and encourage chewing with his molars. Foods like beef jerky and stale Twizzlers licorice. The first challenge is getting Nathaniel to even put these things in his mouth; the second is to actually chew them. It is a process that takes time. Daily I offer a mixture of preferred and non-preferred foods. Sometimes, just tolerating a new food item on his plate is deemed a success.
So what have I learned in the last year about transitioning from g-tube feeding to oral eating? A few things.
1. Progress to oral eating is secondary to other medical conditions. Nathaniel's respiratory health influences what and how we feed him. Enduring and recovering from acute respiratory infections meant months with no progress and even set backs in feeding this last year. Feeling well is a prerequisite to eating success.
2. Remembering our original feeding goal keeps parental expectations in balance. When the Cincinnati team offered laryngotracheal separation surgery, the presumption was that Nathaniel would gain the ability to eat a small variety of foods for social benefit. We were advised it was unlikely that he would gain independence from the g-tube. These subtle comments during a clinic appointment are easily forgotten by hopeful parents. Weeks and months later, particularity if Nathaniel has experienced a streak of successful oral eating, it is tempting to subconsciously move the goal line. Instead of thinking "This is great. He gets to eat a little something while we eat," I start to be disappointed that he's not eating better. That he isn't eating green vegetables. That he doesn't drink much. Truth is, Nathaniel is eating orally far better than predictions. It is a tricky thing to recognize that progress, implement a therapy program and daily meals that continue to challenge and stretch him, and still be perfectly content if all he consumes over a whole week is a soft banana.
3. Progress is not linear. It doesn't even resemble zig-zags. Not only does that path plummet at times, the steps forward are equally unpredictable. Example: I have offered Nathaniel eggs cooked in every shape and form for months. No go. The best I could do was get him to cut a hard boiled egg for my salad. A couple weekends ago, I threw a bridal shower for my son's fiancee. I opened the fridge to make lunch on Monday and found leftover bacon sausage quiche. Not only has Nathaniel never eaten eggs, he's never eaten bacon or sausage. I prepared a slice of quiche for myself, a different lunch for Nathaniel, and we sat down to eat. A little hand reached over and stole my quiche. He ate it all. And another slice on Tuesday. He did the same with rotisserie chicken off of Rich's dinner plate recently.
4. Keeping food experiences social and allowing him to help with food preparation has encouraged Nathaniel's success with food. Returning to the above story - Will Nathaniel eat quiche and rotisserie chicken every time it is offered? No. But these significant leaps in tolerated food variety, texture, and taste affirms the importance of food experiences being social. Trust and relationship have been reinforced because eating is not something we force upon Nathaniel while he sits opposite us, but something we share with Nathaniel while he sits next to us. The quiche experience also highlights the value of continued exposure to new foods through meal preparation. Quiche looks nothing like a hard-boiled egg. But Nathaniel's willingness to touch and cut my hard-boiled eggs prepared him for touching and stealing my quiche. BTW - this kid and his dad make some killer brownies.
5. Knowing a bit about the developmental stages of feeding helps. Nathaniel has had twelve to fifteen months experience with food. His eating resembles a toddler at best. I sweep and Swiffer mop my floor multiple times a day. Tonight there is sticky residue in far flung places from the full hand immersed in yogurt and then waved around in circles at snack time today. We were suppose to be working on spoon skills; he resorted to hands. His peers can be especially pointed in their comments and observations. "Why does he eat like a baby?" asked a little friend one day this summer. Becoming a competent eater requires daily practice. Muscles in the mouth and hands must learn new patterns of movement and be strengthened. Learning to eat takes time whether you start the day you're born or when you are four. Lots of patience and grace are needed here daily. Often, I need a second serving of both before the end of breakfast.
Last August we celebrated the idea that Nathaniel would be able to eat cake for the first time on his fourth birthday. I was hopeful for a few bites of cake once a year. I never expected we would see him eat two slices of cheese pizza or red peppers or leftover bacon sausage quiche. Nor did I expect he would eat those sorts of foods one month and require full g-tube feeds the next. There is likely much I will learn about this process in the future and some of that might prove contradictory to what I think to be true today. In that way, Nathaniel is typical - a kid mixing life up just when the parents think we have things figured out.