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Wednesday, February 10, 2016

FTAW 2016- Development: The Power of Tube Feeding



Today's topic:
Development: The Power of Tube Feeding
What has tube feeding meant for you or your child? How have they grown, developed, thrived? What are they able to do because they are powered by tube feeding?



Development is not the first thing that comes to mind when the topic of tube feeding is discussed. The first thing that comes to mind is survival. Ironically, it is the act of living in survival mode that inhibits developmental progress for many children. I remember sitting in a class in high school and listening to the teacher lecture about Maslow's Hierarchy of Needs. It looks something like this:

I can still remember the teacher talking about the most basic, primal human needs. The bottom of the pyramid contained physiological needs like food, water, sleep, breathing, and shelter. She explained that once those needs are met, the individual moves up to the next tier of the hierarchy to the safety and security needs, such as employment, financial stability, health, and property. As the needs in each tier are fulfilled, the individual continues to move up to the higher-order needs. If the most basic needs are not being met, it is impossible for the individual to work on higher-order needs. How does this translate over to a tube fed infant? Development. 

When a child is facing a medical crisis (or multiple medical crises), the focus MUST be on survival. At that point, keeping the child alive is the priority, and often that comes at the cost of other higher-order needs or skills. There are many children who are tube fed, not because of a feeding disorder or a problem with their digestive system, but out of necessity due to other medical problems. For example, children with congenital heart defects are often given feeding tubes, either temporarily or longer term, because eating consumes too many calories, they lack the strength & energy to eat enough to grow, they have a higher caloric need than they are able to take in orally, or they need additional calories to help them reach the weight they have to reach to have open heart surgery. Kids who are intubated tend to develop oral aversions that hinder their ability or desire to eat by mouth. Obviously, all of these interventions are critical to their survival, but often come at the cost of being able to eat and drink orally enough to sustain their own lives.

Looking back at Raya's experience as an infant, I can see where we had to sacrifice certain developmental needs for the greater good of keeping her body nourished. It wasn't as drastic for us as it is for many of our cardiac friends, but we still had to sacrifice certain things in the name of survival. I think the most obvious example is that when it was decided that she was at risk of primary and secondary aspiration, her GI doctor and I agreed that it was in her best interest to stop oral feeds completely until she had a swallow study done. Allowing her to continue drinking formula by mouth when we suspected that she was not swallowing safely could have resulted in life-threatening aspiration, so the decision was made for her safety, but with that decision came the cost of oral motor skills and the natural progression of feeding skill development. At the age that most infants are starting to eat solid foods, we stopped feeding her by mouth completely. That meant that not only was she not maintaining the skills of sucking and swallowing that she already had (as lacking as they may have been) but she was also not continuing on with the next set of skills that come with learning to eat solid food from a spoon. Survival in the form of preventing dangerous aspiration was necessary, but halted that development.

Somewhere around 14-16 months, Raya inched her way out of survival mode. The switch from a G tube to a GJ tube allowed her to keep enough calories and nutrition in to actually start growing and absorbing the fats and nutrients that she was struggling to absorb with the NG and G tubes. As the vomiting slowed and then stopped, she blossomed right before our eyes. It was an amazing transformation.



The difference was that tube feeding had allowed us to optimize her health, and that allowed her to move out of survival mode and start working her way up the hierarchy. When we were constantly having to put out fires with her medical needs, we did not have the luxury of focusing much of our time and energy into working on her developmental delays. Those things just had to fall to the bottom of the priority list while we tried to keep her medically stable. Once her body was no longer in a constant state of stress, she was able to start working on those areas of development where she was struggling. All of that was made possible because of tube feeding.

Now that she is older, the feeding tube still supports her development through nutrition, but there is one other important way that it supports her. The feeding tube takes the pressure off of her. I have come to the painful realization that my daughter does not have a normal relationship with food. I mean yeah, that's obvious, but in a very real, psychological way, she does not have the bond with food that typically developing children have. Eating requires not only a great deal of physical effort, but also a great deal of mental and emotional energy for her. When the demands that eating places on her are just too much for her, being able to rely on the tube to get her by relieves the pressure that she is under. Now that she's in kindergarten, there are a lot of demands on her limited attention span. The tube is allowing her to have a balance in still working toward being an oral eater, and falling back on the tube for support so that she can focus on what she's learning.

I know I've shared this video a lot, but I think it really illustrates what my ramblings are getting at. We started with a baby who was to busy trying to just survive, to ever attempt to overcome some of the developmental struggles she was facing. Heck, we didn't even RECOGNIZE a lot of what she was struggling with because we were so busy trying to keep her from puking her little guts out! Anyway, here's the video that still makes me cry every time I watch it.






This week is also Congenital Heart Defect Awareness Week! When I first started searching out other parents of tube fed kids online, it was the heart moms that I gravitated toward. There were so many awesome heart mom blogs, and so many of those kiddos had feeding tubes. Over the years, I have come to know and love so many CHD warriors and their warrior mamas, We ♥ tubies and we ♥ the ♥ kiddos!

Tuesday, February 9, 2016

FTAW 2016- Nutrition: The Power of Tube Feeding


Today's Topic:
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. 

Monday, February 8, 2016

FTA Week 2016- Energy: The Power of Tube Feeding

Today's FTA Week topic is:

Energy: The Power of Tube Feeding
Post your story or pictures of you or your child thriving with energy as a result of tube feeding. Or post before and after pictures to show how much tube feeding has improved you or your child's energy.


I've seen a lot of really incredible before and after pictures over the years that I've worked with the Feeding Tube Awareness Foundation. We've seen so many children who have struggled for months or even years to keep from losing weight that they can't afford to lose. They are skin and bones. Shadows of the children they used to be, and a far cry from their peers. Then they get feeding tubes and the life is restored to them. They gain weight. They grow. They run and play and do all the things they didn't have the energy to do before.


Our before and after pictures aren't quite like that, but they are incredible nonetheless. This is our before:
3 weeks old

4 weeks old, 7 lbs 8 oz and spitting up everything
The nightly routine of "do whatever it takes to get her comfortable 
and then DO NOT MOVE FOR ANY REASON!"
When I think about Raya's "before," this is the picture that comes to mind. A pale, skinny, 8 pound 2 month old who cried for hours on end no matter what we did for her, spit up and projectile vomited no matter what we did for her, was starting to refuse to eat, and stopped gaining weight. I still remember laying her on a blanket on my bed and taking pictures of her after her 2 month well-check. At the time, all I saw was my baby. Now, I look at it and see a baby that needed help.
January 2010


I suppose this could be considered our "after."

Now we have a beautiful, vivacious 6 year old who is loving kindergarten, enjoys playing with her friends and her siblings, works hard in her therapies, pushes through her daily struggles with a {mostly} happy spirit, and adds a huge and unique energy to our family and home. Raya has a presence that cannot be ignored.


We can't fully appreciate the difference between before and after without looking at the "during" though. We went from a baby who was weak and becoming malnourished, to a baby who had the strength to meet most of her developmental milestones in a normal time frame because of the nutrition she was receiving through the tube.

She learned to sit up:

She learned to crawl:
Trying to crawl her NG tube out of her nose on the day of her G tube surgery
She learned to pull herself to stand:


She learned to walk:

She learned to climb on playground equipment:

She learned how to climb out of her crib:


She learned to jump:

She started preschool:


She learned to ride a tricycle:

She learned how to run:

She learned to swim (well, we're still working on that...):

And she started kindergarten:

And NONE of that would have been possible without the feeding tube! 



Sunday, February 7, 2016

FTAW 2016- Awareness: The Power of Tube Feeding

It's Feeding Tube Awareness Week again! Today's topic is:

Awareness: The Power of Tube Feeding
Share information about why you or your child is tube fed. There are hundreds of medical conditions that can lead to tube feeding - most of which you can't see.

There are many reasons why Raya has a feeding tube. There were many reasons why she got one at the age of 10 weeks old, and there are many reasons why she still has one 6 years later, so I will explain both.

It started a little something like this:

And this:

In short, we had a miserable, refluxy, crying, screaming, projectile vomiting baby. She wasn't our first refluxy baby. She wasn't our first to spit up what seemed like most of what she had eaten. She wasn't our first to cry more than the average newborn either. She WAS different from the others though. She was the first of our babies to projectile vomit. She was the first to not respond to the comfort measures and interventions that had helped the others, and she was the first to lose weight instead of gaining it, AFTER we had been trying all the tricks and remedies that we could come up with to try. She was also the first to ever vomit to the point of passing out. The first to start refusing to eat. I mean, what infant refuses to eat?! Isn't eating an instinct?? Yes, but so is self-protection. For my sweet baby, like so many others, eating became too painful. Her instincts told her to stop. She found a balance between eating to relieve the gnawing hunger in her stomach, and stopping to keep the reflux and retching at a minimum. She was pretty smart.

This is where the tube entered the picture. Clever as she was, we could not trick her into eating enough to grow when eating made her feel sick, and her throat hurt from acid reflux and vomiting. She reached the point where she was no longer taking in (and KEEPING in) enough calories to sustain her life, even with all of the less-invasive things we were trying. (and believe me, we tried a lot of things)

There comes a point where the damaging effects of malnutrition become a greater risk to the well-being of the child than the risks of tube feeding.

We reached that point on January 20, 2010. We were 2 days into our first hospital admission, and nothing had changed since we arrived at the ER 2 nights before. Weighing in at just over 8 pounds at 10 weeks old, she was refusing to drink anything by mouth at all. We had no choice, and so we did what needed to be done to save her life. It worked.

One aspect of tube feeding that I think is widely misunderstood by those who are on the outside looking in is that for many kids, the point at which the tube goes in is often not the peak of the child's medical "crisis", for lack of better word. On the outside, getting to the point of needing a feeding tube seems like the worst of the worst. It seems like the lowest point. The crisis moment. And yes, often it is a crisis moment, but it may not be THE crisis moment. Tube feeding often prevents a child who is heading toward a health crisis from actually having one. For many kids, the feeding tube is what sustains life while their parents and doctors try to find what is at the root of the problem. Vomiting is a symptom. Weight loss is a symptom. Food refusal is a symptom. Feeding tubes, medications, specialized formulas, herbal remedies, and holistic treatments are all ways to help alleviate those symptoms while the team is in search of a diagnosis that may or may not lead to relief of the need for the feeding tube, but there is almost always something else going on. There was so much more happening inside Raya's little body that we could not even begin to figure out until we started tube feeding her.

From the outside looking in, it may seem that getting a feeding tube is when the child hits rock bottom, but it's actually not. For many kids, including Raya, the feeding tube keeps them from dying when they DO hit rock bottom. It preserves their strength to fight whatever illnesses and ailments they are fighting. It allows them to get the nutrients they need so that their brains can continue developing. It allows them a chance to meet developmental milestones. It allows kids who cannot or will not eat to still thrive.



Now here we are, 6 years later and still relying on the tube for 100% of Raya's nutrition and medications. I know it is often difficult for people who meet Raya to understand why she still needs a feeding tube. I hear a lot of "She seems so healthy!" and "She doesn't look like there's anything wrong with her." And I know anyone who spends more than a couple minutes with her will question how a child with her energy level can possibly have medical problems.

She CAN eat. She does eat SOME food, but she has heavy dietary restrictions due to food allergies and difficulty digesting certain foods, but mostly it boils down to the fact that eating is just not her favorite thing. She feels about the same way about eating that she feels about coloring. She'll color if someone tells her it's time to color, but she doesn't usually think of it on her own. Sometimes she finds a coloring page that she really likes and she'll color the whole thing, but most of the time she colors a little bit of it and then she gets bored with it and she's done. Coloring takes a lot of effort and she doesn't get enough enjoyment out of it for the payoff to outweigh the effort. The same goes for eating. The biggest difference between how she feels about coloring and how she feels about eating is that eating and digesting food is often physically uncomfortable for her. She has a chronic pain condition in her digestive tract that makes the presence of food uncomfortable and often painful. She still has reflux. She has a difficult combination of food allergies. She has a very short attention span. She has a difficult time maintaining a healthy growth curve on food calories vs. elemental formula calories.

There are still unanswered questions, and we do still hope for the day when Raya won't depend on a feeding tube anymore. For now, we are just happy to have her alive and thriving, and we owe it all to her feeding tube!



For more about Feeding Tube Awareness Week, check out the official Feeding Tube Awareness Week website, and follow the Feeding Tube Awareness Foundation on Facebook


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