Tube Feeding: Not a “One-size-fits-all” (By Brandis Goodman, Chief Multimedia Momma)
by Feeding Tube Awareness Foundation on 04/10/13
Cross post with Feeding Raya: The Story of a Girl and Her Feeding Tube (http://agirlandhertube.blogspot.com)
My first introduction to tube feeding was at church. I was in the mothers’ room feeding my baby, and another mom came in with her 7 year old son, who had severe spastic quadriplegic cerebral palsy. She made friendly conversation while she expertly connected a syringe and bolus extension to his G tube with one hand while popping the tab on a can of formula with the other, and then gravity fed him without spilling a drop. Having never seen anyone do a tube feeding in person before, I was intrigued and she was very open in explaining what she was doing. I was impressed by how easy she made it all look, and even more so in retrospect. That was also my first exposure to the fact that older children can live off of formula. Who knew?
My next introduction to tube feeding was through a friend whose baby had been diagnosed with eosinophilic esophagitis and had an NG tube. When she explained more about what his diagnosis meant, I couldn’t help but ask what they were feeding him since there were literally no foods that were safe for him. She pulled a pitcher of Neocate out of the refrigerator. Two years later, I was mixing Neocate to feed my own daughter through her NG tube. I equated feeding tubes with formula.
I don’t remember when I first heard of putting pureed food through a feeding tube, but it made sense to me. The people I encountered that were doing a fully“blenderized diet” for their children had very compelling stories about why they chose to feed their children “real food” as opposed to commercial formulas. At one point, we were experimenting with blenderized food but it never really got off the ground for us. Making blended food that was a small enough volume with high enough calories and the right balance of nutrients was difficult for me. Plunge feeding it into a very active toddler who wouldn’t keep her hands to herself while trying to manage mealtime with 3 other kids never went well either. Before long, gastric dysmotility and multiple food allergies squelched my attempts at partial blenderized diet. It was disappointing. After having read so many accounts of mothers who were feeding their children perfectly balanced diets of various grains, fruits, vegetables, lean protein sources, healthy oils, and broths, I felt a little guilty that I had failed at blenderized diet, even though medically, it just wasn’t appropriate at that point in time.
I’ve thought about those feelings of guilt and disappointment often in the last couple of years. In many online forums, there tends to be an overall air of negativity towards formula in general. A simple Google search for“breastfeeding vs. formula” will yield 5.5 million results that argue both sides of the age-old debate. After having successfully breastfed my first 3 children, it was heartbreaking for me to be told that I could no longer breastfeed the 4th baby. Not only could I not breastfeed her, but after 2 months of painstakingly watching my diet so that I could pump and freeze breastmilk for her, we realized that she would never be able to use it. At that point, formula felt like my enemy even though I knew it was the only thing keeping her alive. Acceptance of formula did not come easily to me. I had to work for it, but I eventually made peace with the cans of smelly powder and liquid that showed up on my front porch every month. That did not mean that there was anything wrong with formula, or with any of my friends or family members who chose to use formula, it just was not what I had planned on. The choice to breastfeed had been taken away from me and that was hard. That was my personal feeling, but ultimately I was incredibly grateful for the formula that was keeping my baby adequately nourished when my breastmilk could not.
Within the world of tube feeding, the trend towards blenderized diet over commercial formula seems to be taking on a similar tone to the breastfeeding vs. formula debate. I sometimes cringe when I see what people write about formula in online forums. There are claims that it is nearly always better than commercial formula, references to commercial formula as “goop” and “chemically processed science in a can,” and touting the virtues of lovingly preparing a blenderized diet rather than use “synthetic formula with a long list of ingredients that you can’t even pronounce”. Here’s the problem with that undertone. There is no inherent virtue in any particular method of feeding a child. The virtue is in doing what is best for that child, no matter what that may be.
Truth be told, there is a large population of individuals who have only mechanical reasons for being fed with a tube. Many people lose the ability to eat due to cancer or stroke. Some simply cannot consume enough calories in a day to maintain a healthy rate of growth, and still others are unable to swallow safely. In the absence of medical conditions that preclude regular foods as an option, a blenderized diet of healthy foods is obviously much more natural to the digestive tract than a diet consisting strictly of commercial formula. However, for a large population of individuals with feeding tubes, there ARE medical conditions in which using a blenderized diet could be largely detrimental to their health. In our case, a wide variety of known food allergies and protein intolerances coupled with dysmotility make it incredibly difficult to find adequate sources of all of the nutrients that are provided by commercial formula in a caloric density that is well tolerated. I WISH that this was not the case, just like I WISH that I could have kept breastfeeding, and just like I WISH we had never needed the tube to begin with.
Not every woman who feeds her baby formula is compelled to do so for medical reasons, and not everyone has a medical reason for not doing blenderized diet. To be honest, even if the medical reasons had not been there, I’m not sure that a 100% blenderized diet is something that would be feasible for me at this point in time. There is nothing wrong with that, and there is nothing wrong with me as a parent for choosing formula over blenderized diet. It doesn’t mean that I’m lazy, or somehow not as loving as the mother who chooses blenderized diet, it just means that my life is different than hers.
Just as there is no inherent virtue in a woman’s decision (or lack of choice) to breastfeed or use formula, there is no inherent virtue in choosing to use a blenderized diet versus choosing (or lack of ability to choose) to use a commercial formula. Those of us whose children are unable to subsist on “real food” are eternally grateful for the technological advances that have led to the development of these highly-specialized formulas that keep our children alive and thriving, and I would venture to say that those who ARE able to do blenderized diet are eternally grateful for the ability to select food of their choosing and prepare blenderized meals for their children. The bottom line is this: there is no one way to use a feeding tube. Each individual does what he or she feels is best for his or her child and family, and no one needs or deserves to be made to feel like that choice is wrong or “lesser than” someone else’s choice for their family.
Brandis Goodman is mom to 3 year old tubie Raya her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon. In all of her spare time, she has returned to school to pursue another degree.
Roger Ebert and Awareness (By Traci, Founder)
by Feeding Tube Awareness Foundation on 04/05/13
I remember when I found out Roger Ebert had a feeding tube. It was the day he re-released this article http://blogs.suntimes.com/
I couldn’t believe that someone so well-known was talking about tube feeding and that it was reaching so many people. What struck me about this article was that he spoke so plainly about it. He described the experience from the physical to the emotional. He also understood the need for awareness. I am not sure if he understood the impact it would have on those of us who shared this world with him. It was so comforting to see the show of support for him and thus, the rest of us.
“Now why am I writing about this in the first place? Because so many people don't understand it. Every day my radar picks up subtle signs of people who wonder what the deal is. How do I eat and drink? What's going on? Do I actually have a tube going into my stomach? Yes, and they do too. It's in their throats.
I feel that the less mystery we make about life and illness, the better. When people know what's going on with me, they're not nearly as freaked out as you might imagine.”
Doesn't that just sum it up?
I posted on Roger Ebert’s facebook page the next day, and to my surprise he acknowledged it. https://www.facebook.com/
I can’t remember any of this without also remembering the late Aadhaar (Eric) O’Gorman, the author of Complete Tube Feeding, and one of the original founders of the Blenderized Diet Resource Group. He was the one who shared the article on facebook and thus, informed me of Roger Ebert’s feeding tube. He also may have greatly influenced Roger Ebert to start using a blended diet. Scroll through the comments on the article. Roger Ebert bookmarked Aadhaar’s blog. Aadhaar was a great lover of sharing knowledge, teaching people what he had learned and de-mystifying all that is tube feeding. He, like Roger Ebert, had lost the ability to speak and used social media to maintain a voice.
Roger Ebert wasn’t a big player in the development of the tube feeding movements, but his presence and his acknowledgement of our efforts, made a real difference in knowing we were gaining momentum. Moreover, it energized us. If I could have bottled the enthusiasm of the FTA staff when Roger Ebert tweeted about Feeding Tube Awareness Week (without any prompting from us), we would have the energy to run the organization for years.
Roger Ebert was a great man, who changed movie critiques and put “two thumbs up” into our vernacular. He was a great writer who connected with his reader. But, he also inspired a great many of us with his candor and willingness to discuss what so many would rather hide.
I regret not sending him a “Super Tubie” t-shirt, because he deserved the title.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen de Vries Syndrome.
Outreach and Spreading the Word! (By Traci Nagy, Founder)
by Feeding Tube Awareness Foundation on 02/14/13
One of the ways
that I spread the word this year was by attending Clinical Nutrition Week, a
conference held by the American Society of Parenteral and Enteral Nutrition
(A.S.P.E.N), where I was given the Lyn Howard Nutrition Support Consumer
Advocacy Award. A.S.P.E.N is an interdisciplinary organization made up of
physicians, dietitians, pharmacists, scientists, and educators – basically any
professional who works in nutrition support with IV or tube-feeding. They
promote research and have medical journals. They work with hospitals and
government agencies. They are the real deal.
Frankly, I am not sure if I would have made the trip to Phoenix and left my son
alone with my husband for 5 nights and 4 days if I wasn’t getting an award. But
faced with the opportunity to speak in front of a clinical audience that we
haven’t had much contact with, I had to go. Thankfully, FTA staff member
Brandis lives nearby and was able to attend. Now that I have gone, I will go
every year. It was just that good.
A lot of the clinicians we met hadn’t heard of us or Feeding Tube Awareness
Week. But in conversation after conversation we heard, “it is great to hear
this from a parent perspective” or “I am so glad you are doing this, it is so
important.” They really cared. They were thankful to be reminded of the
consumer and get insight into what parents go through when they begin
tube-feeding. It was refreshing. They took our buttons and brochures. They
listened to us talk about our experiences. A doctor from Colombia (the country,
not the hospital) stopped us and asked for brochures because there is nothing
like this in his country. We assured him that we would find someone to
translate if need be. He seemed so relieved. We did meet a few people who knew
of us through other parents. That was amazing to hear! It all leads to a better
understanding of us, as parents, and our children who are tube fed.
One of the more exciting outcomes was meeting people from the companies whose
products and services we use (Kimberly-Clark, AMT, Moog, Covidien, Abbott,
Nestle, Byram HealthCare, Walgreens, ThriveRx) and being able to give them
feedback. They listened and heard us. Please, if they have a Facebook page,
like it and participate. Take note of who makes what you use, the services they
provide and what they do to support the community. They want to hear from us to
make their products and services better.
One particular meeting is worth mentioning. We spoke to a group from Moog. To
date, they have been elusive; there is no Moog Facebook page and they are hard
to contact. They convened an on-the-spot session with us. We pulled over chairs
and sat around in a big circle for 45 minutes. We had pumps, bags, and
backpacks and we went through everything. Alarms, holes in bags, air in bags,
the current screw-on caps, how it would be easier if the Velcro didn’t have to
wrap around the bag in the backpack. If we heard it over and over on the page
from you, we mentioned it. Their Senior Product Manager took notes, which he
reviewed with me before we left. They were so appreciative, and it was amazing.
They didn’t know we existed. Now they do, and I hope we are able to continue to
provide feedback.
Spreading the word matters. It matters because it gives us a larger collective
voice – with clinicians, with companies, the media, and with the general
public.
If we had 500 people on our Facebook page, we most certainly would not have
gotten the same response, but we were able to say we would be at 10,000 by the
end of Awareness Week! We can make a difference in our own experience by doing
it together.
Awareness doesn’t stop when Feeding Tube Awareness Week is over. Here are some
templates to help you spread the word:
http://www.feedingtubeawareness.org/provider_letter.pdf
http://www.feedingtubeawareness.org/FTAWSchoolPresentation.html
Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen de Vries Syndrome.
I Love My Tubie! (By Hillary Savoie, Chief Communications Maman)
by Feeding Tube Awareness Foundation on 02/13/13
(This is an abridged post. See the full version at thecutesyndrome.blogspot.com)
It seems like such an appropriate thing to be writing about my daughter Esmé’s tubie for Valentine’s Day. You see, I love my girl’s tubie.
It saved her life.
But, I am not going to lie, I had a terrible time coming to terms with it.
Had I known more about tubies, had I known that there was a proud and invested community waiting to embrace us, or what freedom and safety a tube could provide my child, or the stress and fear that the tube would alleviate...I would have been less resistant.
We have made such progress and learned so much...the progress has been Esmé's and our own, as her caregivers:
It’s Easy! You see this was a surprise to me, but dealing with her feeding tube was super easy. It was just a matter of learning how to be a confident tubie caregiver. Once I learned that I knew what was best for Esmé and her tubie, it became the simplest thing in the world to deal with.
HELP!? I found my way onto the Feeding Tube Awareness facebook page by some bizarre accident. No one told me about FTA in the hospital. I just came across it searching for anything relating to feeding tubes. And I was all “OH MY GOD, there are more of us out there!” The feeding tube community is so amazingly knowledgable, thoughtful, and informative. The extent to which people will go to advise and aid their fellow tubies never ceases to inspire me. I am so proud to be a member of this tribe.
A sigh of relief. Of course, the most phenomenal part of Esmé’s tubie is the progress she has made. She is stronger and healthier. And, her airway is safer. The tube helped protect her both by reducing the risk for aspiration and by helping to keep her well-nourished and strong enough to fight off sickness.
How do other parents do this? But the most surprising part to me is how much the tube has become a part of our lives. I honestly forget that all children don’t come with these conveniences...other parents complain about their children refusing food, spitting out medications, and getting dehydrated, and I find myself thinking: “Just use the tubie, geez!” and then: “Oh right! How do they do it? Poor people, no tubie!”
It is funny, but the confusion shows the simple truth that Esmé’s tubie has become a part of our lives, a part of keeping her safe, a part of her. It’s not going away any time soon.
Which is good, because I love Esmé’s tubie
Hillary Savoie, Maman to 2 year old Esmé, is the Chief Communications Mama of the Feeding Tube Awareness Foundation. She also writes a blog about her journey with Esmé: thecutesyndrome.blogspot.com
We can all use a little help: Friends and Family (by Brandis Goodman, Chief Multimedia Momma)
by Feeding Tube Awareness Foundation on 02/12/13
Being told that your child needs a feeding tube is hard. Having to make decisions about whether or not to tube feed is hard. Managing the care of a medically complex child at home is hard. But one of the hardest aspects of having a tube fed child is being judged and criticized during a time when you are already feeling vulnerable, helpless, and perhaps even questioning your own judgment.
People are curious, and some of them were born without filters. Strangers sometimes say stupid things without thinking. We learn to deal with that, as all parents have to at some point. Even more difficult than thoughtless comments from strangers though, are thoughtless comments from friends and family, whether or not they are intended to be that way. Here are some things that you need to know if you have a friend or family member with a feeding tube:
1. We are struggling to accept the tube ourselves. As such, we appreciate support in reaching a point of acceptance rather than reinforcement of the negative feelings towards the tube that we are trying hard to move past. Understand that the tube is not the enemy, and it is not the worst thing that could happen to your loved one. If you have a loved one who has a feeding tube, learn to love their tube because without it, you may not have your loved one in your life anymore.
2. Learn to be comfortable with the feeding tube, even if you’re not. Don’t be afraid to hold or play with the child. Caring for a child with medical complexities is stressful, and parents need a break every now and then, but finding babysitters is difficult. Be willing to learn about the child’s medical conditions, how to care for the tube, how to administer feedings, and what to do in emergencies. If you’re not comfortable doing it alone, find another friend or family member to help you. A couple of hours out of the house alone together can do wonders for the parents, even if they spend it at the grocery store.
3. Please, please, please do not criticize the decisions we make in our children’s medical care. We are not doctors, and we are doing the best we can with the information we have. If you do not understand why we have decided to go ahead with a surgery, medication, or treatment option, use your very best manners and ask, but do it in the spirit of coming to understand the decision and not to argue with it. Criticism only makes us feel worse about an already difficult situation.
4. Respect our wishes when it comes to the care of our children, no matter how silly the request may sound to you. For the safety of the child, listen to what we tell you and don’t stray from it no matter what you think the outcome may be.
5. Be patient with us. Our lives are in upheaval, and once we make it past the upheaval stage, we have a lot of upkeep to do. Most of us don’t get nearly enough sleep and are entirely overscheduled, so forgive us if we forget things or have to miss out on things. We don’t have time for some of the things we used to have time for and getting out of the house can be difficult, but it doesn’t mean that we value relationships any less.
6. There’s no need to feel sorry for us or tell us that you don’t know how we do it. We are not doing anything that any other parent in our shoes wouldn’t do for their children, and we’re not doing it because we wanted to. We are just doing what it takes to care for our children.
7. Bring over a box of tissues and some chocolate and volunteer to mop up the latest puddle of vomit while we cry into a cup of hot cocoa and tell you all about it. Seriously. Some of us have had our social interactions reduced to people under the age of 5 and medical professionals. We need something in between. We don’t need you to fix anything for us, we just need someone to vent to who will still love us even though all we have to talk about is vomit and medical supplies.
The bottom line is that tube feeding is a learning process for everyone involved. It is difficult, and the support of family and friends is critical.
Brandis Goodman is mom to 3 year old tubie Raya her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon. In all of her spare time, she has returned to school to pursue another degree.
Been there, done that (by Stephanie McDowell, Chief Resource Mama)
by Feeding Tube Awareness Foundation on 02/11/13
Maybe it was
in the NICU, or the PICU, or the ICU. Maybe it was in the GI's office, or the
pulmonologist's office, or the surgeon's office when you heard the words
"feeding tube" for the first time. Maybe it was an NG, or g-tube, or
GJ, or NJ. Maybe it was first described as temporary, a few weeks, maybe a
month or two. Probably it wasn't temporary like they promised and probably you
felt like a boulder had been tossed at you, with no warning and no time to
prepare.
While I never blinked at the TPN or NG tube my son had in the NICU; it was the
casual, off-hand mention of needing a feeding tube before he could be
discharged that blind-sided me. The neonatologist tossed it off as I was
standing in the sink area, washing up to re-enter the NICU. I felt as if
someone had spun me around and punched me, all at once. A feeding tube?
How could that be? Feeding tubes were for people dying and in prolonged
comatose states. What weren't they telling me about my son, was his long-term
survival suddenly in question? And why were they being so casual about it??
That was three years and many lifetimes ago. We left the NICU with a long PEG
and a date to change it to a button six months out, "if it was even still
needed by then." My training, in its entirety, consisted of being shown
how to draw up a syringe, along with warnings about picking him and flipping
him over when he vomited so he didn't "aspirate and die." I spent the
first two weeks after being discharged from the NICU watching Teddy all night,
snatching up him up every time he refluxed, flipping him over and pounding on
his back. I was a basket case.
Three years later, Teddy still has his tube, and now a diagnosis of
eosinophilic esophagitis. There is a steep learning curve in tubie world, I'm
not going to lie. Managing the condition that required a tube in the first
place, the logistical issues of a tube, the results that come from tube feeding
before you've found your groove (hello, projectile vomit!). Feeding tube help
back in the olden days - 2010 - existed mainly on BabyCenter's tubie board, and
I relied on those mommas for everything.
That NICU doctor was so casual because she had long ago conquered the learning
curve of tube feeding and had forgotten how hard it is to be standing on the
other side of the mountain. I hope this makes your learning curve even just a
little bit less steep.
* Research, research, research. I am admittedly biased, but the best place to
start your tubie journey is by sitting down and reading our website and then
getting on Facebook and connecting with our Facebook page. Your doctors might
grumble and you will be asked if you are a medical professional (sometimes in a
nice way...sometimes, not), but you know your tubie best. You need to be an
informed advocate.
* Watch the video tutorials we have linked. A lot of tube feeding is easier to
figure out by watching and then doing. http://www.feedingtubeawareness.org/video-tutorials.html
* Tube feeding does not indicate failure, on anyone's part. Making the decision
to tube feed is a brave and courageous one, and you are commended for
recognizing when a little help is needed and doing it. Being ashamed or
embarrassed of the tube at first is not unusual, but embracing the "new
normal" makes it so much easier on everyone. It's not an easy journey but
there are more of us out there than you could ever imagine.
*You will screw it up. And it will be ok. You will catch the tube on something,
you will feed too fast or too much, you will Google "remove formula stain
from mattress and car seat and carpet and couch and clothes and walls",
you will cry. And it will still be ok. It might require a trip to your tubie
doctor or buying a new sofa, but you will get through it. And eventually you
will laugh -- and sometimes still cry.
Stephanie is a master at finding useful resources and is a wealth of creative ideas. She is also momma to Teddy, who epitomizes the active continuous tube feeder.
It takes a village (by Laura Wagner, Chief Operations Mama)
by Feeding Tube Awareness Foundation on 02/10/13
When you enter into the world of tube feeding, it can be so isolating, especially since it's likely your immediate friends and family know nothing about tubes. That's when it's especially important to know you are not alone. There are others out there who have done this, who are doing this, and who have the same questions, struggles, joys, and triumphs.. Quite a lot of them, actually.
When my daughter was in the NICU, and her Doctors
concluded she needed a "g-button," I googled my fingers off trying to
figure out what that was, what it looked like, and how that would help us feed
her. I had a terrible time finding any useful information. It was no big thing
to her Docs and nurses, but it's not like they would be going home with us to
take care of her. I remember wondering after discharge who we were supposed to
go to with questions. It's not like her Pediatrician knew anything about all this.
I tried turning to the message board I'd been a part
of during my pregnancy, but I felt like I no longer fit in. Thankfully, another
Mama pointed me to private message board, one that was full of other Tubie
Mamas! It was life-changing! I'd found others who had been there/done that, who
could answer my questions and ease my fears. They had kids that were like my
daughter, and they totally understood what I was going through. Over three
years later, those Mamas are still some of my best friends. They are who I go
to for help, support, and understanding, even though I have not even met most
of them in person.
One of my personal goals for Feeding Tube Awareness
Week is just getting the word out. The resources on our web site need to be
easy for anyone to find. I want those new to the world of tube feeding to know
where to find a community full of people just like them, so they don't feel
scared or alone. I want veterans to tube feeding, including tubie-graduates, to
know their experience and knowledge is invaluable.
Tube feeding really does take a village, even if that
village exists online. Help to raise awareness this week, awareness of this
village. You may be the life-line to someone who really needs support!
Laura Wagner, mama to 3 year old Harmony, is the Chief Operations Mama of the Feeding Tube Awareness Foundation. She also works full time for a strategic consulting organization.
Taking the Stress out of Feeding Therapy (by Brandis, Chief Multi-Media Momma)
by Feeding Tube Awareness Foundation on 01/09/13
Feeding therapy can be immensely helpful to
parents who are struggling with knowing how to help their child eat. Until I
had a child who literally did not know how to eat, I had never thought about
how to even go about teaching a child to eat. We have now had 3 feeding
therapists over the course of less than 3 years, and although we have learned
great things from each of them, there is one statement spoken by our first
feeding therapist that has remained my mantra when it comes to feeding my
daughter. On one of our first visits with this therapist, she told me that at
that point, we needed to be realistic about the fact that my daughter was not
ready to actually eat anything. She was still spitting up and vomiting several
times a day and clearly lacked the oral motor skills to effectively swallow her
food. Then she said to me, “Right now, our focus needs to be on helping her to
have positive interactions with food.”
Positive interactions with food. When she
said that, it was like a switch flipped in my mind. It made so much sense. Of COURSE we want her to develop a
positive relationship with food! How in the world could I expect her to WANT to
eat food or put anything in her mouth when the majority of her oral experiences
at that point in time were vomit? I would never expect my other children to
want to eat when they had a stomach bug that made them vomit, and I realized
that I shouldn’t expect that from her either. From that point on, we moved
forward with the assumption that until we figured out and resolved whatever was
causing her to vomit multiple times a day and got her reflux under control, she
was not going to want to eat, and that was okay. Instead of stressing myself
out over trying to get her to let me put food in her mouth, we played with it.
Whether it involved putting cooked rotini noodles between her toes or finger
painting in the bathtub with baby food, the focus was on helping her to realize
that food COULD be positive.
Due to certain conditions, there are some
children who will need feeding tubes throughout life. However, the vast
majority of children who spend their early months and years with feeding tubes
WILL reach a point where they no longer need them. Children need and deserve to
have a positive relationship with food, even if they only have a handful of
foods that are safe for them to eat. Pushing them too hard too fast does not
foster that positive relationship. As my daughter has come to be more
interested in food, the battle has shifted from wanting nothing more than to
see her take a bite of SOMETHING, to wanting to see her accept a wider variety
of foods and eat larger quantities. There is still a great deal of frustration
involved in trying to move forward, but setting the priority on making eating a
positive experience rather than focusing on the number of calories she’s taking
in has reduced my stress level and allowed her to blossom in her own right. We
celebrate the victories, big and small, and when we have a frustrating day, we
take a deep breath and try again the next day.
"A crust eaten in peace is better than a banquet partaken in
anxiety." ~Aesop
Brandis Goodman is mom to 3 year old tubie Raya her 3 older siblings. She currently serves as the Chief
Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers
as a Tubie Friends Surgeon.
The Joys of Cold and Flu Season (By Traci, Founder)
by Feeding Tube Awareness Foundation on 12/06/12
The first sign of illness at my house is often feed
intolerance. As soon as my son starts not tolerating feeds (meaning coughing,
retching, vomit, becomes more irritable), I just wait for the fever or other
signs of obvious illness to occur.
When you are sick, food moves through your system more
slowly. Think of when you are sick yourself and don’t feel like eating much at
all. It is the same for our kids. The focus needs to be on hydration, not
calories. This can be a painful thing when your child is failure to thrive. But,
keeping calories the same is likely to result in additional vomiting and loss
of both nutrition and hydration.
The first thing I do is dilute feeds so that they are about
50% formula and 50% either water and/or Pedialyte (depending on how much vomit
and diarrhea is going on). Very often you need to slow feeds down. Whether you
are continuous or bolus feeding, you likely will need to run feeds for longer
than you usually do. I also try to get in a bit more “free water” if there is
fever. This is often in the form of water flushes throughout the day.
If you are using a blenderized diet, consider the foods you
include. Stick to the basics of what you would eat while you are sick. Avoid
harder to digest foods like dairy and oils.
This can involve some trial and error. If your child still
isn’t tolerating, you may opt to go to 100% Pedialyte and/or water and slow
feeds down further.
If you are J feeding, you may not have to make as many
modifications. I found when I was J feeding, my first sign of illness was more
G output and some additional retching. However, tolerance was a lot better and
I didn’t have to lower calories or feed rates as much as I do when we are G feeding.
It can take a week or so for full motility (how food moves through the GI tract) to return to normal – longer depending on the severity of the illness. Increase calories and rates as they are tolerated.
When to Call Your Doc
· If you are new to this and this is the first
illness your child had since tube feeding
· If your
child has blood sugar issues then you need to have a protocol in place for when
they are sick and not tolerating feeds. Some kids need more sugars than is in
Pedialyte and may require D10.
· If your child has a health condition where they
are unable to have Pedialyte
· If you child is getting dehydrated. Watch for
these signs of dehydration - http://www.mayoclinic.com/health/dehydration/ds00561/dsection=symptoms
· Obviously, if your child needs to be seen
because of the illness itself. This may be a visit to the regular pediatrician,
rather than the GI.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation.
Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen de
Vries Syndrome.
The “What Happens if I Get Hit by a Bus” Moment (By Traci, Founder)
by Feeding Tube Awareness Foundation on 10/18/12
I feel like a lot of tubie parents have had the “what if I get hit by a bus” moment, but not too many people are taking about it. I remember so clearly when it hit me. My son was about a year and a half old and had a GJ. I was in the car for a longer drive with my husband without my son for the very first time for a day trip. (We live in a city, so we don’t drive much and frankly, we don’t get out all that much either.) About 15 minutes in, I said something about not getting into an accident. He said he just started thinking the same thing. We had both realized that we were the only two people who really knew how to take care of our son. Sure, the babysitter knew the basics, but that was it.
Now, that was nearly three years ago and not much has changed except we rarely have a babysitter with my son in school. But, recently I am more focused on it. Let’s call it my mid-life crisis. Since entering my forties I am a lot more aware of things like needing insurance, a will, a special needs trust (though very daunting and expensive) and who would take care of my son if I were to get hit by a bus. I am envisioning a will that actually has directives like “go to the Feeding Tube Awareness website” and ask the tubie mommas if you have questions.
Like so many mommas, I handle all the doctors, therapists, school, case manager, pharmacy, supplies… the everything it takes to keep my son going. I started taking my mother or husband to doctor’s appointments so someone else besides me would know the doctor. I have my husband do things like set up the pump, formula and meds so that I know he can. I have tried to teach my mother how to vent and she fixes the pump when it beeps. It all falls short of complete knowledge sharing. What I need to is actually make a comprehensive list of all that information, because it is all in my head. No one else knows I have the endocrinologist’s phone number in a pile of post-it notes and business cards on a clip on the fridge because we only see her only once a year. I have put this “comprehensive list” on my lengthy “to-do” list.
My comprehensive list is going to include the following:
· Doctors: Contact info, which hospital they are at, how often we see them, last visit
· Medications: Dosage, times administered
· Pharmacies: Contact info and what we get where
· Medical Supply Company: Contact info – what supplies we get monthly and which we get less often
· Feeding Schedule: Formula prep, pump rates and schedule (including any other instructions about using prune juice, probiotics, etc. – and what brands I use)
· Therapists: Contact info, schedule (agencies and how billing is covered, if needed)
· School : Contact info for Teacher, class social worker, bus company (with bus number)
· Case Manager: Contact info, how often we see her and what she handles for our waiver program
· Insurance Info/protocols: Contact info and who you need to call
· Tubie mommas “on call” – where to find mommas who I know will know how to answer questions – and a link to http://www.feedingtubeawareness.org/what-you-need-to-know.html for video tutorials (how to change a g tube, etc) and other frequently asked questions.
Laura, our Chief Operations Momma, has all this info organized in an Excel spreadsheet. We mommas love our spreadsheets! I love that idea, but know I am going to need to print it out and keep it in a fire safe box, too. Some of my loved ones aren’t computer people.
There are other resources for medical binders :
Jonah & The Whale Foundation has an online version to help you get started - http://www.jtwf.org/ResourcesBinder.html
Mommies of Miracles has downloadable Care Pages by subject for your binder - http://mommiesofmiracles.com/resources/care-pages/
The resolution for me right now is not to get hit by the bus. Take precautions. And, hopefully I will get my comprehensive list together, teach others what they need to know and sleep better knowing that.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie who has the newly named, Koolen Syndrome.
Why is My Kid Vomiting? (By Traci, Founder)
by Feeding Tube Awareness Foundation on 08/15/12
This is a frequently asked question and it isn’t one with an easy answer. Here are the variables you should consider. Of course, you will need to discuss your child’s situation with your doctors. It may take some trial and error. More likely than not you have to adjust a number of different things. It is an ongoing process as tolerance changes.
Illness
· The first thing to consider is -- Is the child sick or getting sick?
Motility (meaning how food moves through the GI tract) slows down with illness. It can even slow for a week to 10 days after depending on the severity of the illness. Think of when you are sick, you often don’t feel like eating, but hydration is very important. With illness I often cut the calories fed and add in Pedialyte. I start at half strength formula (half formula/half Pedialyte) and see how tolerance is – I increase or decrease calories per ounce depending on how things go. I slowly work back up to full strength formula. When a child is sick, they often need feeds to go slower than they normally do, even with the lowered calories.
The Feed Schedule
· How fast are you feeding? Are you bolus or continuous feeding? Could it be too much volume in too short a period of time?
The feed schedule is often set by your doctor or nutritionist/dietician to get in a set number of calories. Often they start out with a schedule that is fairly generic and not tailored to your child. There is nothing magical about what they recommend yet, I remember adhering to it like it was set in stone. Very often when you first start tube feeding, you need to make adjustments to the feed schedule to find out what works best for your child’s tolerance. When bolus feeding, think of it as a meal and how long a meal may take when you eat orally. It is important to understand that tolerance changes. What worked 3 months ago, may not work now. Sometimes you find out tolerance has improved or decreased. Adjustments often need to be made.
In time you start to learn patterns of your child’s tolerance/intolerance. For example, my son doesn’t do well with feeds in the morning. I schedule his overnight feed to end at least an hour before he wakes up. My best advice to parents is to work with your health care professionals to understand your child’s caloric and hydration needs to work towards adjusting feed schedules to best fit your child. Changing the feed schedule is often one of the biggest things you can do improve feed tolerance.
Calories Per Ounce
· How many calories per ounce are you feeding?
The higher the calories per ounce, the lower the tolerance can be for some kiddos --- especially those with delayed gastric emptying. Because kiddos can be volume sensitive the thought by some medical professionals is load up the calories per ounce. Adding calories without volume can seem attractive when kids are Failure to Thrive. However, some kiddos have a harder time processing higher calorie formula. I think I might still have PTSD from 30 calorie an ounce Elecare with added rice flakes and MCT Oil. I am not sure how my son gained any weight with all that vomit. He actually did much better and kept more in with lower calories per ounce. I have been hearing 45 calories per ounce lately and that is really calorie dense. Think of the foods you eat or the foods you would feed your non-tubie children. Few foods are that caloric and they tend to be the foods we don’t each much of. It is often worth testing different caloric concentrations to see if that helps with tolerance.
What You are Feeding
· Does it contain milk or soy? Could your child have food allergies or intolerances?
A lot of kiddos have trouble tolerating formulas with milk or soy even if they have been tested and do not have food allergies. Some kiddos do better on formulas that are free of milk, milk proteins and soy. Some kids do better on a blended diet where parents have greater control over the ingredients and can avoid ingredients that cause allergies or intolerances.
Venting
· How often are you venting? Do you get a lot of air when you vent? Do you see a lot of formula when you vent?
Many kiddos with G tubes, even GJs, need to have their stomach vented to let out air. Venting prior to a feed is recommended to clear out the air before hand. Lots of air can lead to vomits. Continuously fed kiddos also need to get the air out. I used to time venting to diaper changes, but now I do it more by feeling – a cough, a sneeze, a look. I err on the side of venting more often. Some kiddos need to vent more continuously, particularly if they have a Nissen Fundoplication. Farrell Valve bags allow for more continuous venting, even while feeding. If you see a lot of formula when you are venting (in comparison to the volume or rate of the feed) or you see formula hours after your child was fed, your child might have delayed gastric emptying. If the stomach is emptying slowly, you will see more vomit.
We have video tutorials on venting -- http://www.feedingtubeawareness.org/video-tutorials.html
How Much is Fed in Total
· How many calories does your child require for their current weight, activity level and muscle tone?
If your child needs to gain weight, they may be receiving more calories than they would if they were more in weight maintenance mode. A lot of times tube fed kiddos do not need as many calories as orally eating children. Tube feeding is a pretty efficient way of getting food in and the body doesn’t use as many calories for things like chewing, swallowing, breaking down foods, etc. Also, a lot of tube fed kids have activity levels that are lower than other children. Throw in lower muscle tone (muscle burns more than fat) and you may have a child that is being overfed. Often times, weight is used as a guide. Too much weight gain, too quickly and calories are usually dialed back. In the meantime, though, your kiddo may be vomiting because they are just getting too much.
Conditions
·
Does your kiddo have
a condition that is linked with vomiting? Have they been tested for these
conditions?
Often vomit gets blamed on reflux or GERD. But, when you see a lot of vomit, it is likely that more than GERD is going on. A lot of things mimic reflux and cause vomiting – motility disorders (most often delayed gastric emptying), food allergies and intolerances, Eosinophilic Disorders, Visceral Hyperalgesia, Autonomic Disorders, Hiatal and other hernias, etc…
Type of Feeding Tube
· What type of feeding tube does your kiddo have? Might it be time to skip the tummy and move to J feeds?
NG tubes can exacerbate reflux. So you may see a bit more vomiting from that because the NG holds open the entry to the stomach. However, more likely than not this will end up being a discussion on whether or not the stomach is handling feeds well enough or if you need to bypass the stomach entirely. I am a big fan of trialing continuous G feeds BEFORE moving to J feeding. With J feeding, you end up on continuous anyway, so why not give continuous G feeds a shot. In fact, reviewing the caloric concentration, feed schedule, and what is being fed should really occur before moving to J feed.
Hydration Levels
·
With all this
vomiting is your kiddo a little dehydrated?
Dehydration can lead to more vomiting. If your kiddo is vomiting a lot, watch for signs of dehydration - http://www.mayoclinic.com/health/dehydration/ds00561/dsection=symptoms If you see signs of dehydration, see your doctor immediately to address it.
Medications
· Is your kiddo on the right dosage of reflux meds? Are motility meds appropriate?
If your kiddo does have reflux… make sure that meds are where they should be. Kids can grow out of dosages. Some people have better success than others using motility meds like eryped, reglan, domperidone, periactin, etc. One thing to note about most motility medications is that they aren’t designed to improve motility. The motility benefit is a side effect, which means not everyone gets it. Also, as a parent you do have to weigh how much it helps your kiddo with the potential side effects and effects of longer-term usage. Consult with your doctors. If these medications work, you will know fairly quickly. If they don't do all that much, most likely they aren't worth being on.
Take Note of What Is and Isn’t Working
Once feeding becomes so medical, parents are scared to do the wrong thing. I certainly was. We defer to medical professionals, which is understandable and expected. If you spent a lot of time in the hospital early on, you may not really trust your parenting skills at first. I remember getting the best night sleep in the hospital because there were nurses there (looking back, I find this crazy). But, it was because I was so afraid I wasn’t going to know what to do.
However, take a step back and remember this is feeding your child and you are with this child day in and day out. You get the most immediate feedback on how feeds are going – vomit, retching, discomfort. Trust that parent instinct if you think that something is wrong. I kept detailed notes on everything the first 3 years or so of tube feeding. I have rates, schedules, calories per ounce, weight, etc. I logged vomits, spit ups – whether or not they were from tube feeding or oral feeding. I had always worked with our GI and nutritionist on feed schedules armed with my notes on what I saw happening at home. Your input is important to the process and can help mold feeding plans that your child can better tolerate.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie and Super Vomiter with gastroparesis due to a 17th chromosome microdeletion.
Ten Tubie Things I Know for Sure (By Stephanie, FTA Advisor)
by Feeding Tube Awareness Foundation on 07/12/12
10. Making formula in the middle of the night sucks and if I don't do it before I go to sleep, I will wake up frequently, thinking about how I need to make formula and how much I don't want to get up to make more formula.
9. I still sometimes go to bed without making the damn formula.
8. Sleep deprivation leads to some bizarro dreams.
7. Medical supplies multiply like gremlins and take over the house, but it's never the supplies you actually need.
6. Asking your [mother/nurse/babysitter/child] if they've seen the K/Y when you have an emergency button change is never going to NOT be mortifying.
5. If I smell the wet spot and it's "just" pee, I don't worry about -- unlike if it's formula or gastric juices, which sets off the hunt for the source of wetness.
4. I can calculate calories and milliliters and ounces and grams and volumes and rates in ways I'd never imagined.
3. Tubie parents (and patients!) are a wonderful and generous group of people who understand this Twilight Zone reality we all live in.
2. I hate the tube.
1. I love the tube.
Stephanie McDowell is on the Advisory Committee for the Feeding Tube Awareness Foundation. Her charming two year old son Teddy has been tube fed since birth.
What do you do for birthdays when your kid doesn’t eat cake? (By Traci, Founder)
by Feeding Tube Awareness Foundation on 06/21/12
We get this question a lot, mostly for first birthdays, but it really applies to any birthday.
What parent doesn’t want that birthday picture with their child covered in cake, frosting or ice cream? For many tubie parents, that is near impossible. Even if your child can eat any of those things safely, some children have such strong sensitivities and aversions that touching food, having food on their face or lips will make them vomit. Other children want to eat and are unable to, so you need a cake alternative. So what do people do?
Have a cake anyway. Let
your kid ignore it and don’t stress it.
We had a cake, in fact two cakes, at my son’s first birthday party. My son ignored both of them. Like many one year olds he wasn’t very interested in his birthday party. We took some pictures with him and his cakes. He was crying in most. I didn’t try to have him smash it or wipe his name out. He was already way too sensory overloaded. We all had cake and he ate some puree foods in his own time. He subsequently has ignored cakes for his 2nd, 3rd, and 4th birthdays. At least he no longer cries when we sing happy birthday.
Instead of that picture with birthday cake on his face, we took great pictures with him and his birthday cards a couple of days later.
Make a “cake” they can eat.
I have heard of mommas making allergen free cakes, lollipop bouquets, dishes of whipped cream that looks like cake, jello cakes, you name it. Decorate a bowl and put a puree in it. If your kid can eat it (or is willing to eat it)… why not?
Have a cake alternative.
There is the Counting Candles™ Birthday Cake by Leap Frog. The candles light up and there are songs. Melissa and Doug has a wooden birthday cake toy where you can decorate the cake slices. Older kids may enjoy decorating a “cake” made from cardboard boxes or foam. Have a piñata and fill it with small toys. I recall one momma made a cake out of a stack of cardboard boxes. She put small toys for her child in the top boxes and party favors for the guests in the bottom box. Think outside of the “box.”
Have a party that doesn’t revolve around food.
For my son’s 3rd birthday we had a party at the local zoo right in the middle of the afternoon, not at a meal time. The kids did some crafts, got to pet a snake and got a guided tour of an area of the zoo. The food was an afterthought. At first, I wasn’t even going to have any, but I caved. The last 15 minutes we had pizza and a cake. If my son was sensitive to others eating, I would have put it on the invitation that no food was going to be served. Another alternative would be to have food in another room away from your child. Parties at home can focus on games, dress up, bubbles, music, crafts, scavenger hunts… anything other than food, particularly if they aren’t scheduled at meal time. Whatever the food situation is going to be, make sure Aunt Betty knows in advance so you don’t have to hear about it during the party.
Don’t feel pressure to have a party at all!
For my son’s second birthday, we opted not to have a party. He really didn’t enjoy his first birthday and sensory issues prevented him from enjoying every other birthday party we went to that year. Instead, we took him to the Bronx Zoo and to our local playground to swing. He really enjoyed the swinging. Later, the grandparents came over for a quieter gathering. We took awkward photos with hats and ate some cake. Lucas had a good day, so that is really all that matters.
In the end, you need to do what you think is best for your child, not about what everyone else expects.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie with gastroparesis due to a 17th chromosome microdeletion. In her other life, she is a market research analyst and consultant.
To the Parents of New Tubies - (By Brandis, Chief Multimedia Momma)
by Feeding Tube Awareness Foundation on 06/13/12
This is a reprint of “Feeding Raya: A Girl and Her Feeding Tube” From April 24, 2012 (http://agirlandhertube.blogspot.com/2012/04/to-parents-of-new-tubies.html)
Lately I've been talking to several moms who are brand spankin' new at this feeding tube business. Hearing them talk about the feelings they're having, the things they're worrying about, and how exhausted and overwhelmed they feel has made me think a lot about how I felt when we were new at this. It was HARD. To all of you parents who have babies, toddlers, or even older children who have brand new feeding tubes, here are some things you need to know:
1. You are exhausted, you feel overwhelmed, you feel inadequate, you don't feel like you know what you're doing, you're worried about your baby/child's future, you're tired of vomit, and you wonder if any of this will ever get better. IT WILL! Your child's problem will not go away overnight. It may not go away for months, years, and maybe not at all, but you WILL find a routine. It will change often, but you will adapt. Medical conditions may stay the same, but YOU will change. You will learn more every day about how to live with the feeding tube and you will become more confident and comfortable with your new normal. You might not get all the answers you're searching for, but answers don't always equal progress, and progress doesn't always depend on answers. My mantra for the first 18-ish months of Raya's life was "It won't be like this forever." I had no idea when it would get better, but I believed that it would and just kept telling myself that. :)2. NONE OF THIS IS YOUR FAULT. I knew deep down that Raya's dependency on a feeding tube was not my fault, but when you're the mom, you're supposed to have all the answers. In my head, I knew I had done everything I could to help Raya feel better even before I had a clue that a feeding tube was going to be considered. I had gone on an elimination diet where I removed everything that possibly could have bothered her out of my diet. It didn't work. I stopped breastfeeding and pumped so I could add rice cereal to the milk for added calories and thickness and feed it to her out of a special bottle to reduce the air she swallowed. It didn't work. I fed her every 3 hours around the clock and held her upright for half an hour after every feeding. It didn't work. I asked her pediatrician to put her on Prevacid. The Prevacid didn't work. In spite of our exhaustive efforts to do whatever we could to help her feel better and gain weight, Raya's problems were beyond anything we could do at home and she needed the tube. Even though I knew in my head that I had done everything I could have, there was still a part of my heart that felt like I should have done more. If you're feeling this way, you need to let go of it. As parents, we have superhuman love for our children but we do not have superhuman abilities to heal their bodies when they don't function properly. If we did, NONE of our children would have feeding tubes.
3. Just get the G tube. If your child's doctor has ever brought up the subject of getting a G tube, they are probably trying to give you the subtle hint that your child is going to have a feeding tube for more than just a couple of months and they know that living with a G tube is better in the long term than an NG tube. In hindsight, after Raya had gotten her G tube, I realized that all of those times when her doctor had asked me if I was ready to move on to the G tube, she was really just trying to tell me that this wasn't going to go away quickly. I didn't understand that at the time and didn't want to believe that Raya would need a feeding tube for more than just a few months. We were pretty naive about that. I wanted a diagnosis so we could take a course of action and resolve the problem so we could get rid of the feeding tube and didn't quite understand or want to accept the fact that it wasn't going to happen that way for us.
For at least the first 3 or 4 months that Raya had her NG tube, I was operating under the assumption that because an NG tube doesn't require surgery, that it's less invasive than a G tube. I no longer believe that. Raya had an NG tube for 6 1/2 months. During that time, I know of at least 62 times that the tube came out and I had to put it back in. This meant that I had to wrap her tightly in a towel so that she couldn't get her arms free, sit over her and carefully hold her still with my knees, hold her head still with one hand, and put the tube in with the other. Sometimes it wasn't that bad and other times it was very traumatic for both of us (and our neighbors if the windows were open). I defy anyone to tell me that having an NG tube placed at least 62 times in 6 months is not more invasive than a surgery that typically only requires a 24 hour hospital stay and a 2-3 week recovery. NG tubes are MUCH more invasive than a G tube. (in my humble opinion)
Before her surgery, I was hung up on words like surgical, permanent, and invasive. I didn't have any other parents to talk to whose kids had lived at home with an NG tube and switched to a G tube. I don't regret giving ourselves ample time to do our research and become comfortable with the decision to put in a G tube. Logistically we weren't able to put it in sooner because of conflicts with the GI doctor and surgeon's schedules, but if I had it to do over again, I would have had it done sooner.
4. Support is available online, so go and find it. This includes emotional support AND technical tube-related support! I did a lot of things by trial and error that I could have avoided if I had realized that resources existed online. When our home health company dropped off the feeding pump & everything that went with it, the one thing they didn't bring me was an operator's manual. We learned our way around the Kangaroo Joey pump and then later the Zevex Infinity pump without the help of an operator's manual because it didn't occur to me until much later that the manuals were available online. Some of the medical supply manufacturers have AMAZING websites and great social media pages. (MicKey and AMT are on facebook, Zevex has a lot of techincal information on their website, etc.)
I started reading heart blogs because so many of those kiddos have feeding tubes too. Eventually I Googled something about feeding tubes and came across a blog about a little girl whose story was similar to Raya's. She had a link to www.feedingtubeawareness.org and the rest is history. :) Answers to any possible feeding tube related question can be found on the website and/or the Facebook page. There is also a wealth of knowledge in all things special needs related to be found at the Mommies of Miracles website and Facebook page. Support is out there so don't try to navigate this alone.
5. The acute care/discovery phase won't last forever. Eventually they'll run out of tests whether you have a diagnosis or not and you'll get to the maintenance and progress phase, which is still busy but more consistent and much less hectic. For us, this happened around the 2 year mark.
6. The feeding tube is your best frienemy. You will hate it for all of its inconveniences and resent it because it represents the ways you feel like you have failed at the basic task of feeding your child. At the same time, you will learn to love it because it means that your child is alive and MUCH healthier than he or she would be without it. You will learn to love the little perks, like being able to feed them while they're sleeping, run Pedialyte into them when they're sick so they don't get dehydrated, and never having to fight to get them to take medicine. Loving the feeding tube is not easy but it makes life with a medically complex child so much less stressful.
Being in the mindset of getting rid of the tube as soon as possible no matter what is a very stressful way to live because there is so much of the process that is out of control of the parents. Some things just can't be forced and have a good outcome. A child deserves to have a positive relationship with food, and forcing food on them when they're not physically capable or mentally and emotionally ready will not foster that positive relationship. I'm not saying that you should give up on your child ever getting rid of the tube, but it's SO important to view the tube as a tool in your child's recovery and not push too hard too soon. Some kids, due to diagnosis, will always need a feeding tube. For other kids, the time for pushing to get off the tube will come. Let them discover and explore food at their own pace and take advantage of the feeding tube while it's there. As many negatives as there may be about having a feeding tube, it is also a security blanket and a safety net.
7. You have a voice as your child's health care advocate and the sooner you find it and learn to use it, the better off your child will be. Generally speaking, hospital employees do want what's best for patients. I think most of them do what they do because they enjoy at least some aspect of it. We've had dozens upon dozens of nurses, doctors, and medical assistants and there were only a few of them that I felt like were unhappy with their jobs. You can tell when someone doesn't enjoy what they're doing.
For the most part, I have been treated like a valid part of Raya's health care team but there have been times where decisions have been made without a doctor or nurse sharing that information with me or explaining why they're doing things. Ultimately, every situation like that has led to conflict and frustration, and the times that were the most frustrating were the ones where I didn't speak up and voice my opinions or ask enough questions.
There are two that stand out in my mind. One was the time that an ill child was put in the room with my well child in the middle of the night. I was LIVID when I woke up in the morning and found out about it but I wasn't bold enough to speak up and voice my concerns. That child had NO business being in Raya's room and I can guarantee that (if the hospital still had shared rooms) nothing like that would ever happen again after that experience.
The second was after Raya's G tube surgery when the doctor gave orders to switch from Pedialyte to formula. At the time, Raya had serious vomiting problems and I knew full well that no matter what feed rate they put her on, she was going to vomit first thing in the morning. As soon as I heard the feed schedule that the doctor had put her on, I knew it was going to cause problems. He had her continuous rate at 75ml/hour (which was faster than her usual rate) and her "bolus" rate at 45ml/hour for 2 hours at a time (which was slower than her usual bolus rate) because we had been trialing bolus feeds just before that admission. (A bolus feed is supposed to be short and fast like the equivalent of eating a meal and a continuous feed is supposed to be long and slow.) Once again, I went along with what he ordered without discussing it with him even though I knew his plan was going to cause problems. I don't have a lot of regrets but looking back, I wish I had trusted my own instincts and spoken up in both of those situations.
8. There is NOTHING wrong with asking questions!! Ask questions until you understand what, why, how, when, where, and who. If one person explains something and you don't understand them, let someone else explain. The hospital environment can be so overwhelming, especially when you're trying to learn in a few days what nurses go to school for a couple of years or more to learn. Don't feel bad if you don't remember everything all at once and never feel bad about asking the same question more than once. You're not the first one who has gone through this process and you won't be the last. Lean on those who have been where you are and someday you'll be the one that people are reaching out to with questions.
9. FIND SOMETHING TO LAUGH ABOUT!! If you can't change the situation you're in, you might as well find something to laugh about, right? One day I took Raya to a therapy appointment with her Anat Baniel Method therapist. Her office was 60 miles from home and it took us a solid hour to get there. At that point, Raya almost always vomited immediately after a car ride, so I would always turn off the car, run around to her door, and yank her out of her carseat as fast as I could so she'd vomit on the ground instead of in the car. (hence the stain on the floor in the garage) On this day, I got Raya out of the car and went into the clinic thinking that the vomiting was done for the moment. During these appointments, I was always within arm's reach with a cloth diaper to catch anything that came out because it happened so frequently. While her therapist was working with her, we heard/saw the signs that something was coming up so with cat-like reflexes, I reached down and stuck the burp rag in front of Raya's face. I had underestimated the force with which it would come flying out of her mouth, and my hand was too close to her face. Instead of being absorbed by the burp rag, the stream of vomit hit my hand, shot straight up in the air, and came down directly on my head. The therapist quickly went to get me a towel and we shared a pretty good laugh. Sometimes you just HAVE to laugh!
Just remember that it won't always be this way.
Brandis Goodman is mom to 2 1/2 year old tubie Raya her 3 older siblings. She currently serves as the Chief Multimedia Momma for the Feeding Tube Awareness Foundation and also volunteers as a Tubie Friends Surgeon.
Where is the love for continuous feeding? (By Traci, Founder)
by Feeding Tube Awareness Foundation on 06/01/12
We see a lot of questions from parents about continuous feeding and really wanting to avoid it at all costs. When you start tube feeding, no one wishes for continuous feeding. But, if your kiddo needs it, it is actually a lot easier than you may think. I am all for trying different formulas, blended diets or other things to maintain bolus feeding. But, more often than not changing feed schedules can help tolerance, especially kiddos with motility issues. You adapt, just like you did to tube feeding.
I joke that my son has been on a continuous feed since September 2008. We have continuously fed through NG, G, GJ and back to G again. My son has learned to roll, crawl, walk, climb, dance…well everything he can do while being continuously fed. We have had periods where he was on 23.5 hours a day (off for baths!) and down to our current low of about 15 hours a day. My son has low muscle tone, poor balance and is very farsighted. He started cruising at about 16 months old and walked at 19 months. He didn’t have the strength and coordination to carry his own backpack with formula and the pump until around 2.5 years. So, we followed him around for more than a year carrying his backpack for him.
I remember the first time I heard my GI mention the move to continuous feeding. My first thought was “how am I going to do that with a 3 month old?” We had been unsuccessfully bolus feeding for a month. We were bolus feeding 8 times a day, 24 hours a day. We had slowed feeds down so that they were running over an hour and my son was vomiting so much I started using hand towels instead of burp clothes. Bolus feeds weren’t working at all and we were working on no sleep. It was scary and miserable.
We were admitted to the hospital for testing and observation when we started continuous feeding. It wasn’t dreamy, but it was a lot better. There was less vomit. But more importantly, my son seemed a lot more comfortable than before. He was sleeping better.
When we got home, it wasn’t as bad as I thought. I was kind of relieved. We finally broke out the backpack and put the pump in it. We placed the backpack next to him wherever he was. He was 3 months and not moving around so much, so this was pretty easy. We hung the backpack on his stroller when we went out and it could sit next to the car seat. Continuous feeding had actually allowed us not to be tied at home like our lengthy bolus feeds had.
We rigged his crib so that we had him on an incline at the top and at the bottom we had an inclined changing area, so we didn’t have to unplug him to change his diaper. I laugh at this now, but at the time, we thought this was ingenious. Then I discovered Huggies Overnight diapers, which start in size 3 and we didn’t have to do those middle of the night changes. And, then I learned about ice packs in the backpack with the feeding bag and no more adding formula at 2am! If I had only known the Infinity pump had an interval setting then.
Initially he didn’t roll much in his sleep, so I never had to tape the NG tubing down his back. He never got tangled in it. When we moved to the G tube at 6 months, things changed. We had to increase calories and volume because he was still Failure to Thrive. Increased calories were a nightmare. He rolled around and got tangled more because he was uncomfortable. He vomited more in the middle of the night. When continuous feeding round the clock to a G fails, it is time for a GJ.
He got super tangly when we went to GJ at 13 months. We had a continuous G drain and continuous J feed . Two tubies are way more tangly than one. We always tape the extension set(s) to the tummy with paper tape, run them down the PJ leg and keep the IV pole a few inches from the crib so you hear it when they tangle enough to run out of line. I was up a few times a night untangling him. The easiest way to untangle is to unplug the feeding set from the extension set. I hadn’t learned about using pool noodles or paper towel rolls to corral the line until after he stopped tangling. Around 2, he stopped rolling around as much and by 3 he would untangle his legs himself.
During the day, it was interesting. He got that he was connected to his backpack after dragging it with him a few times. That is what you get when you leave your sitting kiddo with the backpack and go to another room. Ha! I learned to stick him in his high chair or exersaucer if I needed to go to the bathroom. We scheduled breaks in his feed throughout the day to correspond with times of greatest activity, like more active therapy sessions. Other times when we knew he would be napping or sitting – in the car, in the stroller on the park swing – we had his backpack. Carabiner hooks are the best thing in the world. With them you can hook a backpack to a park swing. Or you can put the backpack in the bucket swing with smaller kiddos. You would think a swinging pump would alarm a lot, but it doesn’t.
Was it a pain at times? Sure. But it was doable. I have heard of parents creating carts to pull the backpack for kiddos who can’t wear it yet. SN parents are really creative and you figure out ways that work for you. Some kids can wear their pack pretty young. The backpack doesn’t seem to slow them down. Once my son started wearing his backpack, we noticed he got a lot stronger very quickly. I actually think we should have had him use it sooner than we did.
What does continuous feeding do to oral feeding? Well, you do have to make room for it, much like you do when you bolus feed. When we were G feeding nearly 24 hours a day, we did do a small oral feed once a day. As we were able we did 2 oral feeds a day. Now, we are able to continuous feed around preschool. So, about 5am we stop the overnight feed. He gets some water flushes before school. At school, he eats with his classmates for snack and lunch. (oh that peer modeling thing only works so much for some kiddos, mine included) When he gets home, he gets hooked up to his backpack until bedtime. He may still ask for few sips of smoothie while running. There may be a time when he needs to get fed at school with a longer school day. We will make that work, too. Plenty of parents and kids do.
Do I dream of a day of bolus feeding? Absolutely. How cool would it be to do a syringe bolus on the go!! Tube feeding tolerance is at its highest when you respond to the cues your kiddo’s body is giving you. Don’t be afraid of continuous feeding if that is what will help your child.
Traci Nagy is the Founder of Feeding Tube Awareness Foundation. Her 4 year old son Lucas is a Super Tubie with gastroparesis due to a 17th chromosome microdeletion. In her other life, she is a market research analyst and consultant.
My Journey from Feeding Tube Hate to Feeding Tube Love (By Kelly, President of the FTA Board)
by Feeding Tube Awareness Foundation on 05/25/12
My daughter Julia has had a feeding tube since birth. She experienced a lack of oxygen at some point during labor and delivery, and as a result, her brain was damaged. She lost her gag/suck/swallow reflex and was not able to coordinate eating. She started out with an NG (nasogastric, which goes in through the nose and down to the tummy) tube, but due to reflux, she aspirated milk into her lungs. So they placed an NJ (nasojejeunal) tube, which bypassed her tummy and fed right into her upper intestine. But, in order for us to bring her home from the NICU, she had to have a "permanent" feeding tube (a G (gastrostomy) tube) placed. So at 5 weeks old, she had surgery to place a g-tube and she also got a Nissen fundoplication to decrease the chances of reflux and aspiration.
I hated her g-tube. I’m not even sure “hate” can fully convey the depth of feeling I had toward this thing that protruded from her previously perfect and unblemished tummy. It was big. It was ugly. It was artificial. My daughter was being kept alive by artificial means. Without this tube, she would cease to be. Wow. After already having been through 5 weeks of the worst hell I’d ever known, I felt like I was being plunged further into despair. Getting this “permanent” tube (as the hospital staff so cavalierly kept referring to it) felt like giving up. And, the worst part was there was nothing I could do to change it.So we learned how to take care of her and her tube. We learned how to keep it clean, deal with granulation tissue, feed her and burp her. We even learned how to switch out the tube once her stoma (the tract that forms through the skin and abdominal wall to accommodate the tube, sorta like a pierced ear) healed. In the beginning, I cursed the tube daily. But, it wasn’t because it was hard to deal with. It was because of everything I felt it represented. I was still reeling from her birth and the myriad of other issues she was facing—would she walk, talk, see, hear? What would her quality of life be? Would she be smart, have friends, go to college? Would she ever learn to eat by mouth? The g-tube, honestly, was a very small part of what made everything so scary. But, it was the physical manifestation of all of those thoughts and feelings, and I took my anger out on it.
But, gradually, as the days turned into weeks and then months, we got used to it. All of the sudden, I did not have this visceral reaction to her tube anymore. I didn’t well up every time I fed her and I stopped worrying about the stares we got when we fed her in public. I don’t know when it happened, it just did. I guess time really is the only thing that heals. And, now I am happy to talk to anyone who is interested in learning about her tube. Kids are the best. They are so honest about it. “What’s that? Why does she have it?” And, I explain that she can’t eat like other kids so she eats through her tummy. They ask when she will eat and I say I don’t know. They like to make predictions. “She’ll eat when she’s 6.” Sounds good to me.
I’m not going to say that tube feeding has been without challenges. It has been difficult at times. J had a lot of GI issues we had to contend with during that first year. But, our research eventually led us to a great team of professionals who have helped her (and us) immensely in overcoming some of the challenges. And, now we are able to feed J real food that we blend each day for her. We know she is well-nourished and she is growing.
We have been working hard with J to overcome an unfortunate oral aversion (thanks to all of the lifesaving but invasive efforts of the NICU), to strengthen her throat and facial muscles to improve her swallow, and to teach her to eat. For a very long time, we saw little to no progress, save for her increasing ability to swallow, for which we are very thankful. But, in the last few months we have noticed some improvements, including a more relaxed tongue, improved range of motion in her lips, and an improved ability to bite. We do her oral motor exercises 3-4 times a day and work with small tastes of food to help her experience textures and flavors.
The fact remains that despite our best efforts, J may never be an oral eater. That is disappointing, but it is not the end of the world. I know parents of oral eaters can't imagine their child having a feeding tube, and it definitely wasn't on my priority list when I was imagining what life would be like for my little girl, but it's all relative. Her feeding tube allows her to get the nutrition and hydration she needs, which in turn helps her to grow and develop and be strong for all of the other things she has to work on, like rolling and crawling and walking and being the super cute Tubie diva she is! And, her tube lifts one burden off of her parents' minds and allows us to focus on the myriad of other things that she needs to live a long and happy life. Heck, at this point it’s so much a part of who J is that I honestly can’t imagine what it would be like to have a child who eats by mouth. I’m not saying I wouldn’t like to give that a go, I’m just saying that it’s such a foreign thing to me. The same way that I’m sure tube feeding is to my friends who have typically developing kids. I never thought that I would get to a point where tube feeding would be our norm, but it is. It just goes to show you that you can adapt to pretty much anything when you have to. So don't be sad for J because she has to eat through a tube; be happy that she is alive in an age when such medical interventions are available to help her grow and thrive. It took me a long time to get here, but I’m not looking back. :)
Kelly Brooks is mom to Julia, a tube-fed (and exceedingly adorable) 2 1/2-year-old with cerebral palsy. She currently serves as President of the Feeding Tube Awareness Foundation Board, where she hopes to help other parents as they navigate life with a tubie. In her other life, Kelly works for a nonprofit healthcare organization that strives to improve the quality of care provided to dialysis patients.
