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To the parents of new tubies

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. :)

Mommy & Raya, 4 weeks old and pre-NG tube. I was much more tired than I look. :)
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. (See How To page for NG tube videos.) 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) becuase 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. People are going to stare, ask you questions, and say stupid things, all of which will probably hurt your feelings on some days. 99% of them won't mean for their comments to be insensitive or rude. Some of them genuinely want to know, others are speaking in judgement so they can feel better about themselves, and some were just born without filters (or common sense). There are a lot of questions that are difficult to ask without sounding rude, like "what's wrong with your baby?". You will get tired of hearing, "Is she eating yet? Is this something she'll grow out of? How long will she have the feeding tube? Was she a preemie? Has she been tested for XYZ syndrome yet? My friend's ex-brother-in-law's cousin had a baby with that EXACT SAME PROBLEM and they fixed it by (fill in the blank). Did you eat (fill in the blank) during your pregnancy? You should take her to a chiropractor. Have you tried essential oils? What you need to do is (fill in the blank). Maybe you just haven't tried the right food yet. I bet if you gave her (fill in the blank) she would eat it." and so on. Like I said, most are well-intentioned, but when you're already questioning everything yourself and feeling like your best isn't good enough, those comments can sting. Or burn. Or just cut your heart out. It depends on the day and who's asking. I've found that having pre-formulated answers to those questions helps. Even if the person asking doesn't really intend to get solid answers out of me, they're going to, dangit! Even 2+ years later, some questions still bother me but I try not to let that show and just give the best answer I can give. I feel like I owe it to Raya and every other person with a feeding tube (and all her other diagnoses) to be a good ambassador by teaching people and spreading awareness with a positive attitude, even if I feel like screaming at them. I also keep a running list of the dumbest questions people have asked me. At the top of that list is, "Does she wear that helmet because you dropped her on her head?" Which brings me to #10:

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. 

Comments

  1. You are an amazing woman and are so articulate. I am sure this is going to be a great learning tool and comfort to parents who are just beginning this adventure in their lives. Keep up the good work!

    ReplyDelete
  2. We have just been fitted with an NG with a G Tube scheduled for next week. This post has saved my sanity and is one I will read again, again and again.

    You've let me know it is ok to be a million 'negative' emotions whilst still being positive and accepting. It is so difficult, but knowing there are people out there makes it so much easier!

    ReplyDelete
  3. Thank you so much for this entry. I found it on pinterest and it came at just the right time. I am overwhelmed with worry about my daughter's endoscopy and NG tube insertion in a week. She is 22 months and has failure to thrive. I needed to hear this tonight. You will never know how much it means to me.

    ReplyDelete
  4. Thank you for being so open and honest. My daughter is 5 weeks old today and has a trach and a g-tube. Reading through your posts has given me a sense of comfort.

    ReplyDelete
  5. Thank you so much for this. Reading this tonight brought tears to my eyes. Thank you Thank You thank you.

    ReplyDelete
  6. oh my! I'm sitting in the hospital reading this and bawling. We had the G tube placed today in my 9 mo old and this article.......I could have written it myself. I stopped in the middle to type this. Thank you so much for expressing my thoughts. ok, now I'll finish reading the rest. lol

    ReplyDelete

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