Nutrition: The Power of Tube Feeding
There are long-term consequences to malnutrition. 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.
Nutrition can be a touchy subject among tube feeding families. In the tube feeding world, I think many of us have different feelings toward nutrition in its various forms at different points in the tube feeding journey. Before Raya was even born, I planned on breastfeeding her just like I had done with her 3 older siblings. It wasn't that I had anything against formula, I just wanted to breastfeed. (and formula is 'spensive) One of the hardest things that happened in the beginning of all this was being told that my breast milk was literally harming my daughter and that I had to stop giving it to her. For a while, I kept pumping and freezing the milk and clung to the hope that we would be able to get her back on breast milk and I could go back to breastfeeding her. I did try giving her breast milk through her feeding tube a couple times. I did not go well. I had to accept that what I planned for her and for us was not going to happen, and I had to let go of that. It may seem silly and be difficult to understand, but I went through a kind of grieving process over the loss of, not only breastfeeding her, but also the loss of having control over how I nourished my child. I had never experienced anything like that before.
The first couple of weeks after the tube went in, we played a guessing game of sorts as we tried to find a formula that she could keep down, that would help her gain weight, and that she would drink by mouth. Ultimately, we found out that when a baby is in dire straits and facing malnutrition, you sometimes have to do some bargaining and accept the lesser of evils. The first formula we tried was horrid. Even the name sounded unappetizing. Pregestimil. Blech. I did not blame her one little bit for refusing to drink it. I'm sure it tasted horrible. It smelled horrible going down, and it smelled horrible when it came back out. And it did come back out. And then we ended up with another unpleasant side effect: blood in the stool and constipation. At that point, we had to switch to something else. The next one was an elemental formula called Neocate, that had the proteins broken completely down into amino acids. That one was definitely better than the Pregestimil. At least when she vomited, it just smelled like French fries. She did drink some of her formula by mouth early on. She just couldn't drink enough to sustain herself. Trying to get her to drink her formula was exhausting. Keeping up a feeding regimen of every 3 hours, 8 times in a 24 hour period with a baby who had little to no desire to drink anything was hellish. I tried the best I could though. I set alarms on my phone to wake me up every 3 hours, and I woke her up to feed her like they told me to. I could only do that for so long before I just couldn't keep up anymore. We had to let the tube do more of the work for her because she just couldn't do it herself, and I couldn't make her.
At some point, I came to terms with formula. I was still sad that I had been robbed of being able to feed her the way I wanted to, but as I saw her start to turn a corner and gain weight again, I couldn't help but marvel at the fact that something existed that could replace breast milk. I remember looking at the can and thinking how amazing it was that science could create something that replicated the nutrition found in breast milk, and that it could be done in a way that would help children with mysterious medical conditions like Raya to still grow and thrive when they would have otherwise slowly starved.
As time went on and Raya became more stable, we dabbled in baby food. That did not go well. Exhibit A:
During a hospital admission shortly before her first birthday, she was switched from Neocate Infant to Neocate Jr. According to the label on the can, Neocate Jr would be nutritionally complete for her for the rest of her childhood. Hmmm... I wasn't sure how I felt about that. I must have been very out of touch with the medical world because even though I knew of people who had feeding tubes, it was hard to wrap my head around the concept of a child growing up to adulthood solely on nutrition provided by powdered formula from a can. With that realization came another twinge of sadness at the idea that Raya could potentially be one of those children.
I knew that we had no way of knowing exactly what the future held for Raya, and I knew that for the time being, formula was doing the trick. She was still a sick little girl and we didn't know why (and no, the formula was not making her sick), but with the help of the nutrition provided to her by the formula, she was still growing and progressing developmentally. Even so, I still felt like she was missing out on something because of the lack of food in her life. Completely apart from the actual experience of eating food, I felt like her body was missing out on the health benefits of having food. With the blessing of her wonderful GI doctor, we started doing small amounts of pureed food through her tube. I felt like if we ever wanted her body to be able to digest enough food to not need the feeding tube anymore, we should give it some practice, and that was a great way to see how her body handled foods that she wasn't quite ready to eat yet.
As time went on and things calmed down a bit more for her, she did start to eat food. She even got to a point where she was consistently eating 200-300 calories a day for a while. (until she got a sinus infection and didn't take a bite of anything for a month, but that's a story for another day) However, with more food exposure came the realization that Raya had food allergies. In retrospect, it explained so many things. Even the exorcist vomiting the weekend before she was admitted to the hospital for the first time. We had been adding rice cereal to her milk, as directed by her GI doctor, and then 2 1/2 years later, we found out she is allergic to rice. It turned out she was allergic to pretty much everything she had decided she liked to eat. We had to start over from scratch, and with some difficult dietary restrictions.
Ugh. Dietary restrictions. I get so frustrated by the combination of food allergies and intolerances in this household. There are only 2 of us who don't have any foods that have to be avoided for one reason or another. As I was walking through the grocery store last night, I caught myself thinking of a meal that sounded good that I wanted to make but then was suddenly yanked back to reality with the realization that I cannot feed that meal to at least 3 of us, and it can't be modified to accommodate the allergies. That thought was followed by a twinge of sadness and a wish that we could just have a one day pass from all of the food restrictions and have everybody eat the same things. What does all that have to do with nutrition? I suppose it just illustrates how difficult it can be to find "perfect" nutrition for a medically complex child. I don't love that my child subsists almost completely on formula, however I'm extremely grateful that it is POSSIBLE for her to grow and thrive and be healthy on 100% formula. I mean, LOOK at this girl!
|This one didn't make the Christmas card.|
But what else is there aside from traditional commercial formulas? FOOD! Yes, food. As in, regular old food, thrown in a high-powered commercial-grade blender, and pureed until it's smooth enough to flow through a little bitty G tube. For some, blenderized food is a fantastic option but for one reason or another, the actual preparation is not do-able. For those people, there are some relatively new and very exciting products on the market in the form of commercially prepared blenderized food. I know of two companies whose products are currently available and gaining more and more insurance coverage and distribution availability on a regular basis. One is Functional Formularies (makers of Liquid Hope and other products), and the other is Real Food Blends. I don't know quite as much about Liquid Hope because it will never be an option for Raya since it contains some ingredients she is allergic to, but I have heard from many who use it and love it. It was created with adults in mind, so it is more nutritionally appropriate for adults, but the company did just announce a pediatric product (which Raya is also allergic to). Real Food Blends was formulated with children in mind, and offers a variety of "meals". (and there's one Raya isn't allergic to. yay!) Both companies are doing great work on behalf of those who want options other than traditional formula.
I have seen a lot of heated debates in the online tube feeding community over the topic of nutrition. When the debates start, they often take a "mommy wars" tone. As parents, we are passionate about our children, and that often leads to a "my way is the best way" attitude. It makes me sad to see these debates, and also to see "formula shaming," because when it comes down to it, there is no one way to feed a child who is tube fed. According to the Feeding Tube Awareness Foundation, there are literally HUNDREDS of medical conditions that can lead to tube feeding. There cannot possibly be one single method that would encompass all of those conditions and meet the needs of every single one of the hundreds of thousands of people who are tube fed, just like there cannot possibly be one diet that meets the needs of all people who eat by mouth! When you think of it that way, it's a little absurd. Each of us must do what it takes to nourish our children. For some, formula is literally the only way to do that. For others, there are options either in place of or in addition to formula. ALL of these options are right, but not all of them are right for each individual. No one should ever be made to feel guilty about what they choose (or are forced to) feed their tube fed child. The important thing is that feeding tubes and formulas of all kinds allow those who rely on feeding tubes to have the nourishment they need.