Feeding tubes are often referred to as a “lifeline”- a provider of nutrition when the oral route fails. The definition of the word “lifeline” is as follows: a thing on which someone or something depends, or which provides a means of escape from a difficult situation. This couldn’t be more true for our guest blogger, Laesa Kim. Laesa is a mother of two children, a writer, and an advocate for families with medically complex children. It’s an honour to have Leasa share her story and tell us why she chose to use blended food for Evelyn’s tube feeding. Thank you so much, Laesa, for your contribution the the Natural Tube Feeding blog. ~Claire
My daughter, Evelyn, was born prematurely with a number of medical complexities throughout her body. Over the length of seven weeks, I held my newborn girl in my arms just seven times. She was intubated at birth, weighing 3lbs 14oz, and hooked up to so many tubes and wires that even with laying my hands on her body there was a disconnect. She needed ventilators and surgery’s and IV administered medicines. Not to be swaddled in the latest cotton muslin pattern or lying naked a top my body or tasting the sweetness oozing from my breasts. I grasped for anything that would connect me to my daughter. Something to do. Something to contribute to her care. Something to bridge us together. She was fragile and broken, and it seemed I had nothing in my hands as her mother to assist in healing her.
Except that I did. I sat by her bedside and pumped breast milk religiously. The one thing of myself I could give her, consistently. The one thing of myself I knew was healing for her. The one thing the doctors couldn’t say no to. I know I was lucky to have such a good supply that the milk kept flowing, despite the stressful days and anxious nights. I gratefully kept at it, one day at a time. Before long weeks had past, then months, and eventually we were home with our medically complex baby girl receiving all of her nutrition through a tube in her tummy. So I kept pumping. And we kept connecting.
Just before Evelyn’s first birthday she went in for her first open heart surgery. My milk was thick and fatty, and I know it prepared her body for this major event. Initially she did brilliantly. Until a few days following surgery when her team recognized chylous fluid was being produced from her chest tubes, and it was decided she needed to be put on a special diet to try and reverse this cloudy liquid from continuing to form. It seemed a simple and minor setback. Except, this setback became very complex and took more than four months to correct. I kept pumping at first, thinking she would be back on my milk in no time. But it wasn’t meant to be. After a month of pumping and donating excess milk I decided to stop, and let it go.
I began to grow very detached from our feeding routines. My now 16 month old had yet to have any real food. Mealtime consisted of pouring a premixed bottle into a bag, and pressing a button, “start”. It served us, served her needs at the time, yes. But it was very discouraging to think that that was going to be it. That for however many years it might take to get her eating whole meals by mouth, her nutrition would largely be commercialized formula.
Throughout this time I happened across the term blended diet more and more. I started overusing my Google search bar, scrolling through questions and answers in the Blenderized RN Facebook group, reading multiple blogs, and bits and pieces from various books. I decided on my own that we were going to do this, and after a go ahead nod from her main pediatrician, went ahead with it. I introduced foods slowly, small amounts through her g-tube, a single ingredient at a time. Just as I had with my son when he started to eat solids by mouth, sitting perched in the high chair.
When I finally had enough ingredients, that I knew she could tolerate, I went ahead and blended a whole meal. And I was giddy with the process! It felt therapeutic and energizing to be making food for Evelyn. As if I was contributing once again. Giving her something no one else on her medical team could give. I envisioned portion sizes and food varieties landing on a toddler plate, which in reality landed in a blender and through plastic tubing to her belly. I was proud each time she gained weight, as her hair began to finally grow, when her eczema cleared up. I did that! I thought. There was a bridge between us again, and tubie mealtime was now incredibly satisfying.
No one on her medical team has ever outright said no to a blended diet. In fact, many are very supportive of it, to just blend what we eat as a family, as long as we are reaching appropriate calorie and fluid goals. There were a couple though that tried to sway us another way. “It could get stuck in the tube,” they said. “You need to make sure your prep area is perfectly clean. Everything needs to be measured exactly so that we know she is getting all the right nutrients. This will be a lot more work for you. You could try this other packaged product instead.”
My answers? “Get an industrialized blender, over blend everything, modify the feeding bag; we’ve never had an issue. My kitchen is just as clean cooking for Evelyn as it is cooking for the rest of the family. No child is getting exactly the right nutrients; my son certainly didn’t at this age. (And, it should be added. Nutrients are especially funny to argue in regards to tube fed toddler. I can literally give her anything I want, and she cannot object. Guaranteed she gets better nutrition than an orally eating toddler.) It is no more work than if she ate by mouth and I prepared food for her that way.” And finally, “No thanks, the first ingredient in that package is corn syrup.”
Evelyn is now almost three years old. She’s been on an exclusively blended diet for a year and a half. The greatest challenge through it all has been going at it alone. Though no one on her medical team outright objected to a blended diet, even those enthusiastic couldn’t offer any direction or guidance. This was new to them, too. I had to figure it out for the both of us. There has been a lot of trial and error. Learning which foods blend best together, how to boost calories without adding volume, mastering quick calculations in my head and ultimately recognizing to follow my instincts.
Eighteen months later and I still get a kick out of feeding her, the same way I feed the rest of my family. I still feel satisfied creating meals that my preschooler cannot say no to. I am still grateful for the bridge that serving real food creates, in the normalcy of preparing and cooking and sharing. I have no doubt it is the greatest contribution to her care.