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Feeding Tube Awareness Week 2018: Day 2

Nutrition: Fired Up About Nutrition Tuesday, February 6th
There are long-term consequences to malnutrition and being undernourished. For some people, there wouldn’t be life without tube feeding, but for others they would continually struggle with malnutrition. Tube feeding makes it possible for people who aren’t able to eat enough on their own to get the nutrition they need to live.

Each year, we have a different theme for Feeding Tube Awareness Week. Back in November, Traci (the founder of Feeding Tube Awareness Foundation) and I sat in a restaurant in between sessions of a conference we were attending, and brainstormed about this year's FTAW. Over the past couple of years, we have been involved in some projects with medical professionals from various locations and as we tossed around ideas for a FTAW theme, we agreed that it needed to have something to do with nutrition in some way. We were hearing so much about nutrition and malnutrition in our interactions with medical professionals that we felt it made sense to focus this year's FTAW efforts on highlighting the importance of nutrition and how feeding tubes can impact nutrition. We happened to be feasting on some delicious food at Bobby Flay's Mesa Grill while we talked, and it so happened that there are flames incorporated into much of the décor there. Putting two and two together, we landed on the theme of:

Fired Up About Nutrition!


Malnutrition is such an ugly word. The first and only time I ever heard the word "malnourished" in reference to one of my children, it felt like a kick to the gut. There I stood in the GI clinic, holding my darling little 2 month old baby while the doctor unwrapped her from the blanket and pinched her little inner thigh before telling me that she was underweight and malnourished and she was considering hospitalizing her. This was not at all what I had expected to hear and I was floored. It felt awful to hear that despite the exhaustive efforts I was going to, she was still struggling to grow. I had done EVERYTHING I could think of to do and followed all the pediatrician's suggestions. The pediatrician had put her on reflux medication at 1 month old. I had eliminated the top 8 allergens from my diet on the off chance that something I was eating was bothering her. I was tracking my calories and water intake to make sure I was still getting enough nutrition to support adequate breast milk production. We were feeding her every time she acted hungry PLUS waking her up to feed her. We tried adding rice cereal to the breast milk, and we tried feeding her from a Dr. Brown's bottle. We kept her upright for 30 minutes after she ate. We were pausing to burp her a couple times during each feed. We were doing EVERYTHING that we knew to do, EVERYTHING the pediatrician suggested, EVERYTHING that had worked with our older girls' reflux, EVERYTHING other seasoned parents suggested that made sense to do, and it still wasn't enough. 

There can be many reasons for malnutrition in infants and children, and many (possibly even MOST) have nothing to do with neglect. The reason the word "malnourished" made me cringe was that my greatest fear as a mother was the idea that someone thought I was being neglectful with her care, and had somehow caused the condition she was in. That could not have been further from the truth!

Even though she still vomited for several months after her NG tube was originally placed, the nutrition she received from her tube feeds allowed her to get back to a healthier trajectory on the growth curve. She went from NG tube to G tube to GJ, then back to a G tube, and also eats by mouth. No matter the route, the important thing was getting the nutrition into her. Because her nutritional needs were being met through tube feeding early on, she was able to meet many of her physical developmental milestones on time. She had the strength and energy to fully participate in physical therapy and occupational therapy sessions. Her participation in occupational therapy to address her sensory processing disorder helped her to tolerate her feeding therapy sessions. Her overall health has been very good, which we attribute to her receiving proper nutrition throughout her life. There has been a tangible ripple effect throughout her life due to the improved nutrition Raya’s feeding tube has allowed her to receive.

Raya’s cognitive development also benefited from receiving adequate nutrition early on in her life as a result of tube feeding. It is well documented that malnutrition during early stages of development can negatively impact cognitive development, and those negative effects can last into adulthood. By addressing Raya’s nutritional needs through tube feeding, we were able to support brain development during her infancy. She started in our school district’s early intervention preschool program when she turned 3, and is now in 2nd grade. She is right on track academically, and is even advanced in math and reading. I do not believe that this would have been the case if her doctor had not intervened early in her infancy with nutrition support through tube feeding.

The impact of nutrition on social and emotional development was something that I had not really anticipated. As her feed tolerance improved and her GI symptoms decreased, we started to see progress in other areas of development. The more she started to catch up in those areas, the more interested she became in engaging with peers. When children feel good, they are more able and willing to engage in the environment around them.

We talk a lot about how feeding tubes save lives, and that is true. However, it truly is the nutrition that saves lives. The feeding tube is just a vehicle by which to deliver it. While I am deeply grateful that we have had a way to get proper nutrition into Raya over the years in addition to what she eats by mouth, I am also deeply grateful for the specialized formula that her body is able to tolerate and thrive on. Before Raya came along, we had not used formula. Our older kids were all breastfed and only had a bottle of formula on very rare occasion. It wasn't really that I had anything against formula, I just felt that my babies needed breast milk. I didn't feel any different with Raya, until I saw that she was truly not able to thrive on breast milk. As emotionally difficult as it was for me to let go of breastfeeding, I could see that she needed something different than what our other kids had needed. All I really wanted was to see my baby healthy and growing, even if that meant feeding her formula. Before that, I had no idea how amazing formula can be. What I mean by that is, there is a formula for literally any specialized dietary need. There are formulas that have been created that allow babies with conditions that once would have been terminal to survive and thrive. There are also formulas that have been specially tailored to meet the needs of children whose bodies have difficulty breaking down whole proteins to an absorbable state, and whose bodies react to multiple foods. These amino acid, or "elemental" formulas are what has made it possible for Raya to grow and thrive. 

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