Physio, OT + Therapies Tube Feeding

No, My Children’s Feeding Tubes Aren’t Convenient

January 27, 2019

Recently someone said something to me about the boys’ feeding tubes that I haven’t been able to shake. The comment was, “It must be convenient to feed them when they’re sleeping.” This comment was not meant to be malicious at all, but it stings. And I’m going to explain why.

Both boys have G-tubes, surgically implanted into the stomach, as seen here.

That one sentence sums up 99% of the abnormality I feel on a daily basis. (The other 1% just being my natural weirdness, hollaaaa.) The fact that I feed my children through plastic tubes surgically placed into their stomachs is very atypical of your average, everyday baby experience. There’s a real mourning there for the loss of that typical experience. It’s not a trivial mourning either. It’s big and it’s ongoing every single day.

I both love and hate every time I hook up their extension tube, tape it to their stomachs and set up their feed bags and pumps. That’s 6 times a day each, so 12 times a day. I love it because without these tubes, our twins would be dead. I love that they’re life-saving inventions. I hate it because do you know what I wouldn’t give for my boys to be able to eat like 99% of the other babies I know? I cried for MONTHS about not being able to breastfeed. Hell, at this rate, I’d KILL to be able to bottle them! ANYTHING via mouth.

For months, I was convinced it was all in the bottle. That if I could just find the RIGHT bottle, they would eat via mouth. I spent hundreds of dollars on all different kinds of bottles (now cluttering up my cupboards, unused). I thought, “This will be the one!” Of course, none of them were, at least long-term.

(However, I do really like practicing feeds with the boys with this Medela Special Needs bottle. It does not require suction to work, perfect for babies who can’t coordinate the suck/swallow/breathe thing. The boys both love it!)

It’s actually like I do 3 things… I still have to pump and warm up bottles… then dump those bottles into bags for the tube machine. It’s like breastfeeding, bottle-feeding and a friggin science experiment all at the same time.

Convenient, right?

We use the Infinity pumps for feeding, or bolus syringes.

So yes, sometimes during their feed times, which take a total of 2 hours from start to finish EACH TIME 6X A DAY might I add, they fall asleep because feeding time overflows into nap time. Bound to happen when they spend 2 out of every 4 hours hooked up to a machine. Yes, it IS convenient that they can sleep and be fed at the same time.

But, you know what’s NOT convenient?

  • Paying thousands of dollars for medical supplies.
  • Spending 1.5-2 hours out of every 4 hour block connected to a tube and pump.
  • Making sure they don’t grab the tube and pull it out of their stomach.
  • Running my milk through a machine, where their stomach is permanently stitched to the inner wall of the abdomen.
  • Getting stared at out in public as we hook up tubes, wires and the oh-so-subtle BEEEEEEPS of the Infinity pumps go off (if you’re a tubie parent, you know the song of our people). And as we pull out syringes to flush the lines with after they eat.
  • Worrying about if the power goes out, how will I charge their feeding pumps?
  • Always having to make sure I have enough supplies – feed bags, syringes, sterile water containers, sterile water, extension tubes, the good medical tape that doesn’t irritate their skin even though it’s $7 a roll (I experimented with many), cath tip adapters, extra G-tubes in the correct sizes, etc. Ya can’t go to the store for tube feeding supplies like you can when you run out of diapers. Organization is key.
  • Refrigerating the bag and extension between each feed, including when we’re on the go, so always having a giant cooler pack (for milk too).
  • Ordering medical supplies through a bureaucratic system (It took until January to get supplies for Axel who got his tube in October… In the meantime, I bought on eBay.)
  • Scouring eBay for deals on medical supplies (unopened, obviously) when our allotment runs out. The program we’re on only covers half of what we need. Yes, scouring eBay for deals on the items I need to FEED MY CHILDREN.
  • Making sure they stay upright for 45mins-1 hour after a feed finishes so they don’t puke it back up and/or cry from the pain of puking (reflux). It often still is painful for Jaxon especially with his very severe reflux.
We try bottles with the boys at all opportunities to practice oral eating skills.
  • Cleaning around and under the G-tube to prevent infection 3x a day.
  • Monitoring granulation tissue and treating it as needed (burning it off with silver nitrate or cream).
  • Cutting up little pieces of gauze to wrap around it when needed.
  • Making sure the boys are always dressed so that they don’t pull their tubes out.
  • Changing their sleepers, sleep sacks and crib sheets 1-5x a night, every few hours, after they vomit.
  • Changing the G-tube every 3 months which entails staring into a large gaping hole in my child’s abdomen that goes straight into his stomach, among other things. Helllooooo down there!
  • When changing the tube, sticking a measuring stick into the hole in their bellies to check if we need to change sizes. (It’s a special medical one, not just like a yardstick.)
  • Having to strap pillows to their bellies before we can do tummy time to protect the site and prevent irritation (which can cause painful granulation tissue). However I did get these super cute and budget-friendly ones from Taylor Hart Designs and they work perfectly with plenty of room to grow!
  • And, attending months or YEARS of occupational and feeding therapy to hopefully one day get the boys eating by mouth. They will literally have to learn that food goes in their mouth and makes them full – something I’m sure every non-tubie parent takes for granted. (And I know I take this for granted myself as an adult.)
  • Eventually, surgery to remove the tube after 6 months of not using it. Use it for one day out of 3 months? Clock resets! It could be years before we reach this day, or never, depending on their needs in the future.
  • Wondering if they’ll ever be able to eat by mouth at all? A very real possibility.
I have found syringe feeding to be easiest when out at doctor’s appointments where the pumps can be burdensome.

I’m not saying it’s all bad about G-tubes. Like I said above, they are life-saving inventions and I am so grateful my twins have them. Without a feeding tube of some kind (there are many), they would be dead. And, G-tubes have their benefits, especially versus the NG tube which is a huge pain in the ass to deal with (that was a long month with Axel pulling it out daily!).

I am SO GLAD our boys have them to enable them to grow.

This post is not to say I am ungrateful for the tubes. I am.

But what I reeeeally don’t need is people insinuating that somehow having twins with feeding tubes is so much more convenient that breast or bottle feeding. It is, to sum up this post, NOT convenient, easier, less stressful or cheaper.

It’s difficult, physically, logistically, emotionally and a helluva lot more expensive than I ever thought.

The tube coming out of Axel’s sleeper is called the extension tube and connects to the G-tube feeding port.

Everyone says stupid stuff sometimes, myself very much included. No big deal. But continuing to undermine or invalidate the experience of tubie parents by describing it as “convenient” ignores the months and years of PAIN and HARD WORK these kids have to go through just to eat.

And, the emotional toll it takes on their parents, besides their kids’ other diagnoses.

So, all I ask is that the next time you see a pump and tubes attached to my babies for hours at a time and think to yourself, “Boy, that looks convenient!”… have a word with yourself. No, it’s not fucking convenient. It’s life-saving, but not convenient.

This is what it looks like when a feed is running over the pump.

If you’re a tubie parent, how do you feel about your child’s tube? Do you get angry when others assume it’s “so easy” or do you let it roll off your back? Would love to hear your perspective in the comments. 🙂

AND, I’ve made a list of all my favourite (Amazon-Prime-able) products for tubies here, including the best tape for baby skin that doesn’t hurt and organization hacks. Click here to shop the list on Amazon.

  • Reply
    February 13, 2019 at 9:34 pm

    I’m not even sure how I came to follow you on Instagram, but I’ve been reading your story. I just want to say you’re a rockstar! You’re killing it for your littles.

    • Reply
      February 16, 2019 at 9:46 pm

      Thank you so much. 🙂

  • Reply
    Hazel Wotherspoon
    March 2, 2019 at 10:31 am

    My daughter is 20, a few weeks from 21. I had her on her second birthday, she was orally fed but not thriving and been fed for many hours rs a day.. She had a NG tube past 4 months before her 3rd birthday, a gastrostomy 5 months later. I still feel so sad she never gets to eat or taste food. She has been nbm since age 9 due to silent aspiration. X

  • Reply
    December 2, 2020 at 5:02 pm

    My baby only recently got her tube inserted. She will be 20 months tomorrow and she has had it a little over a month. Feeding her has been a struggle from day one. Never could breast feed which broke my heart and made me cry for months. Esp as I breastfed my first born. And she struggled to gain weight even when they had us switch to a baby formula with more calories because she struggled to eat much and she digests slow. For a brief period she seemed to gain and everyone stopped worrying for a while. It seemed to be working. But then as she got bigger and more active she just wasn’t consuming enough calories and she dropped a lb. She is only 18 lbs now. She had dropped to 17 lbs. Not a lot for a 20 month old. She has servers reflux issues and is low toned from her cerebral palsy. So her doc and I decided it was time for the feeding tube. After 19 months of struggling and fighting to get her to eat I was semi relieved at the idea of the tube. Feed her from the bottle what she would take then be able to put the rest down the tube and she would actually gain some weight. Relief some of my daily stress. But it did not relieve anything. It has been daily throwing up fits and never knowing which feeding she will keep down and which feeding I’m gonna wear. She has the gravity feeds and awake feeds are a nightmare. She has pulled the tube more than once. Has hurt herself. She always seems to have the granulation tissue. Comes back so fast. And hurts her, which makes me feel awful seeing her in pain. Some days I’m pretty sure I wear more pediasure than she eats. And she has started eating even less from the bottle now. Sometimes I can’t even get her to take the bottle at all. And I find the more I have to put down the tube the more she throws up. And it hurts her to throw up. At this point I have a love/hate relationship with the tube feedings. Like you said, I love that it’s helping keep her alive and give her the nutrients she needs, but I hate all the pain and the throwing up and the time consuming ness of it all and the laundry from all the throwing up. It’s overwhelming. Esp while also dealing with special bar shoes for her club foot that she has to wear 10-12 hours a day and while also taking care of an almost 8 yr old with behavioral health and learning disabilities and it’s a lot. Sorry for the book. Just nice to share my story with someone who understands the struggle.

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