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**I am not a medical professional and the information on this blog is not to be construed as medical advice of any kind. ALWAYS consult with your child's doctor before making any kind of changes to his/her treatment, feeding schedule, etc.**

Wednesday, June 22, 2011

A little bit of tube humor

A few days ago on the Feeding Tube Awareness facebook page, there was a list of "You know you're a parent of a tube-fed child when..." that we really got a kick out of. Ever since then, I keep noticing things that should be on that list. For example, yesterday Raya's 3 year old sister Kaida wasn't feeling well and it turns out she has a bad UTI. When the doctor told me to make sure she drinks lots of fluids, my first thought was, "Can't I just drop an NG tube in her for a few days?" Before Raya came along, that thought would have never crossed my mind. :) I decided to make my own list, so here it is.

You know you're the parent of a tube-fed child when/if...
  • one of your other kids gets sick and won't drink any fluids or take their medicine and you tell them that if they don't at least take their medicine, you'll have to put a tube in their nose like baby sister used to have.
  • all of the storage furniture you bought to put blankets and other things in is full of medical supplies.
  • your purse is full of syringes, tubing, gauze and medical tape.
  • you hear your child's feeding pump beeping everywhere you go and then realize you're just hearing things because you don't even have your child or their feeding pump with you.
  • the GI nurse recognizes your phone number and answers it even though you were calling to talk to a different doctor's nurse about a different kid.
  • your other kids want to do science experiments with the bile you drained out of their baby sister's tummy. And you let them.
  • you doze off on the couch late in the evening and then wake up and panic at 2am because you missed giving meds & starting the night feed. (lucky for me, Donny picks up my slack. :)
  • your baby's favorite toys are syringes and a stethoscope.
  • there are spots on your ceiling from when you accidentally shot formula out of the syringe.
  • you don't bother buying masking tape anymore because medical tape works just as well and you have plenty of that.
  • you pick up your friend's baby and have a minor panic attack because you can't feel their feeding tube button (they don't have one).
  • you don't want to spend money on squirt guns so you just give the kids 60ml syringes instead.
  • you have used a spare 60ml syringe to baste a turkey.
  • you walk right past the rack of footie pajamas with zippers without even looking at them because there's no way you could put them on your child without having to cut holes in them.
  • you forget to put diapers in the diaper bag because you're too worried about making sure you have all of the other necessary supplies in case of a tube emergency.
  • you feel like it's Christmas every month when the UPS man delivers boxes of formula, extension tubes, syringes, gauze, tape, etc.
  • you have ever held a vomit bag in front of your child's face in a restaurant, airport/airplane, grocery store, or other public place while reassuring grossed out spectators that your child isn't really sick.
  • you've ever felt like kicking random strangers that stare at your child or ask, "What's wrong with her?" (there's nothing WRONG with her, she's a delightful child who just happens to be fed through a tube in her stomach! :)
  • you go out to dinner with the family and people give you odd looks when you keep taking food away from your child instead of feeding her.
  • you have finally been compelled to learn the metric system and now converting mls to ounces is second nature.
  • you've ever thought about making your child a shirt that says, "I have a feeding tube because I vomit and don't know how to eat and no, my mom doesn't know how long I'll have it for."
  • the amount of stuff you have to pack for just an afternoon outing makes it look like you're leaving for a month.
  • you have ever had to show a PCT or nurse how to prime the feeding pump or load the pump set while at the hospital.
  • you have 4 volumes of feeding/medication/vomiting records because in your sleep-deprived state, if you don't write things down you'll forget what you did and when you did it.
  • your other kids are jealous of all the doctor's appointments that your tube fed child has and get really excited when it's their turn to go to the doctor.
  • you hear other moms talking about how they cried when their baby got shots and you have to bite your tongue to keep from saying, "Shots? Big deal. That's nothing." as you have flashbacks of helping to hold your screaming baby down while 3 different people spend 2 hours trying to start an IV on her in the middle of the night.
  • you've ever kicked yourself for not going to nursing school and wonder if practical application would count for any credits if you were to go back to school.
  • you give your child high fives for doing a good job squirting their medications in their tube.
  • you've ever woken up in the morning and NOT smelled formula puke or heard vomiting and panicked thinking something must be wrong.
  • your baby's first discernable word was "backpack" and you're pretty sure she said "blood pressure" once too.
  • you tell your child, "Good job!" and give her a high five when she actually burps out of her mouth.
  • you have ever had to stifle laughter when a well-meaning stranger asks if the feeding tube is an oxygen tube. (yes, we pump milky white oxygen into our daughter's belly :)
I'll stop now but I may add more later. :) Some of the other people's comments on the FTA facebook page were so funny. One girl said that she was at a restaurant and it was time for her baby's feed so she laid him across her lap, took his shorts off, and started to unsnap his onesie so she could get to his tube and a waiter came running up to her and said, "I'm sorry ma'am but you can't change your baby's diaper in the dining area." Another mom said that you know you're the mom of a tube-fed child when your friend hands you her 11 month old and tells you that you can give her a drink of water if you want to and you realize that you don't know how. :) Sometimes you just have to laugh about things!


  1. I don't have a tubie, but my purse was full of syringes. Henry actually likes to play with stethescopes too. I walk past footie jams too, but for other reasons. And YES, the crying over shots (which I've done too) seems overly dramatic given what we've put our babes through. And sometimes I do think about going into the medical field because i know all this stuff. I tell Henry good job when he burps. And I might just have to make Raya a t-shirt now. :)

  2. Hi,
    I just happened upon your blog and was reading some of what you have experienced with your little one. My son, who is almost 2 1/2 has had quite a few feeding issues as well. Although not nearly as bad as Raya. He was exclusively breast fed and grew normally until 16 months, although we had been trying food since he was about 5 months old. He has pretty severe reflux and has been on meds for that since he was just a few weeks old. At 16 months we put him on an appitite stimmulant because the doctors finally started listening to me when he began quickly falling off the charts. I am guessing at that point my breast milk just couldn't sustain him any longer. He had MAJOR food aversions and what did go in his mouth always came out whether it was 10seconds later or an hour later! One night he spit out some meat that he had "had" for lunch and he had pocketed in his cheeks for hours.
    Anyway, the main reason I wanted to comment is that I was wondering if Raya sees a feeding therapist? I had asked my doctor about Ben seeing one for a long time and she never felt it was needed! WHAT?!?! HE CAN'T SWALLOW FOOD AND NOW HE IS BARELY PUTTING ANYTHING IN HIS MOUTH! I decided to contact early intervention to see if they could do anything to help even though he was thriving with all other development. However, I will tell you it was one of the best calls I ever made! With in a month of that first call Ben had his first feeding therapy and has made leaps and bounds! He still has challenges, still has pretty significant reflux, and is still on his appitite enhancer (which we tried to wean recently and it was a big failure :o( ), and sees his GI doc every couple of months. He also has a few other medical things going on that affect eating.
    OK, Long story short! LOL! I didn't see if Raya has feeding therapy and wanted to let you know that it has made an amazing difference in Ben's, and our, lives!

  3. LOL, ok just ignore my comment above as I just saw that feeding therapy is definately part of Raya's life already! Sorry!


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