New To Tube Feeding

By Stephanie McDowell

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 tube 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 throughout the website. A lot of tube feeding is easier to figure out by watching and then doing.
• 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.

By Brandis Goodman

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 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.

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 Feeding Tube Awareness Foundation and the rest is history. :) Answers to any possible feeding tube related question can be found on the website and/or the 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 child who is medically complex so much less stressful.

7. 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.

8. 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.

9. 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.

10. 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.

This is a reprint from Feeding Raya: A Girl and Her Feeding Tube on April 24, 2012. 

By Kelly

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) child with cerebral palsy. 

By Stephanie

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.