The Emotional Rollercoaster of a G-Tube Fed Baby: Part 1

My daughter has been fed through a tube since she was 9 weeks old. It started out as an NG tube (that’s a little tube that goes through her nose, down into her stomach), and then she transitioned to a G-tube on March 1, 2023.  A g-tube is a tube that is held in place to the stomach by a surgical incision, leaving a “stoma” in place – the only reason the tube doesn’t fall out is because of a little water balloon inside the stomach. With a g-tube, you give meds, food, and water straight into the stomach – bypassing the oral method of feeding. The reason she needs it is because of trouble swallowing – her muscle tone is so weak that her muscles fail to protect her airway, causing what’s called “silent aspiration” – fluid goes into her lungs, and she doesn’t feel it in order to cough and protect herself. We practice oral feeding all the time! She manages to swallow maybe 2-5 baby spoonful’s of food a day, and we applaud her for swallowing, since it’s such a difficult exercise for her to do.

Having a g-tube fed baby is a very emotional process for me. I posted about this earlier in “My Baby is Fed Through a Tube”, but that was merely the acceptance of the g-tube. Now, I want to briefly talk about the emotions of feeding my daughter – in hopes that one of you, if you’re feeding your own child through a tube, can know you’re not alone.

I breastfed through a tube for 14 months – I pumped about 20 oz a day, and we or the hospital fed my girl breastmilk through a tube. I felt like a failure for not making the 28 oz she needed – it was the only thing I could feed her, and I didn’t make enough. I did super pumps, I pumped 7 times a day, and I kept trying to increase my supply through supplementation. I worked hard for 14 months to give my girl the best.

Then, at age 1, the doctors presented the different food formulas that we could choose from. Food formulas are basically shelf stable nutrition drinks, but in a thicker form and holding more nutrients, kept in a plastic or paper pouch.  You can then administer it through the g-tube, and supplement as necessary. It’s like baby formula but it’s for an adult. Insurance normally covers it, too! There are several different brands, and a few different meal options the child or adult can choose from.

I was determined to continue giving my girl the best. I knew that the processed formula was an option, but I also knew how hard mentally it would be to give my girl food from a bag for the rest of her life. I didn’t imagine that when I was pregnant for her. I imagined feeding her oatmeal with strawberries, letting her have milk from a sippy cup. Pulling her high-chair up to the table and seeing her expression when she tasted spinach. Never in my wildest dreams did I dream of giving her formula through a bag. So, I started the process of learning about a whole food blended diet for my 12 month old.

“You can’t just give vegetables and broth” was something a doctor told me – apparently some parents do this, out of ignorance. This is the world I was stepping into. A world where some parents can’t afford or don’t have insurance to pay for the processed food, so they gave their child vegetables and broth. “You could always do Pediasure” someone told me – something easy, something quick. But I had a heart to heart with myself – was I planning that life before the g-tube? Was I expecting quick and easy, feeding my child protein shakes? No, I was planning on cooking – on trying new things, so that my girl could experience what food is really like. Maybe she can’t taste it, but her body can feel the benefits. Learning to make a blended diet for my child caused me more emotional pain that I could’ve foreseen. It was mainly at first though, when bolus feeding (bolus is a “one time” feed, where you use a 60 ML syringe to push food into the g-tube) wasn’t an option. Feeding through a pump (an actual machine that manages the flow of the food, it’s called a continuous feed) is what we had been doing with milk, and until we got a bigger size g-tube (one that has a bigger tube so thicker food can go through it), we had to use the pump for my blends.

Recipe after recipe – trying to find ingredients that wouldn’t clog the pump. Rice clogs, avocado clogs, frozen food clogs, who even knows what clogged that one… I would watch the food in the bag, and watch the flow past the “clog avenue” I called it – and if it passed I got SO excited. I’d sit and watch to see if the oatmeal with strawberries would pass. I wasted food, I watched it flow, I just wanted the food to go through the pump. A pump was what was between me and feeding my girl her food.

At the end of about 2 months, I had found 2 recipes that went through the pump. “Fruity Cocoa Oats” and “PB Oats”. Then, I got baby food from the store (another coping mechanism, btw) and mixed it with milk, and that wouldn’t clog either. That’s how I managed to feed my girl for two months.

When we were allowed to bolus, it was the best gift to this mother! This meant that basically anything could go through that tube. My world expanded. I could give my girl quinoa! I could throw chicken in if I wanted to! I couldn’t wait to try new things. It felt like I got permission to feed my daughter. I had freedom to take care of her the way I wanted to. And that’s when I began the process of really learning how to make my girl g-tube blends.

To be Continued in Part 2!