The G-Tube Club

I love talking about Nyana. In fact, I’m almost addicted to it. Well, that’s not quite right. It’s more that I’m getting addicted to hearing people say how wonderful she is, or how pretty she is, or how strong she is. I love hearing people who know her gush about how great she is, and I love strangers and the weird things they say to a baby with a hose for a nose. As most parents know, it’s safe to expect someone insistent on meeting your little one when you’re out and about for a stroll. Now imagine you have a tube and a couple wires connecting What You Made to some machines in the undercarriage. Naturally, people get curious. You get some looks, a few look-backs as people pass the other way, a lot of people that walk along the sidewalk just behind you and ride your blind spot so they can check out what’s going on. And almost every time you go out, you make a new friend.

“Your baby is very cute.”
“Thanks.”
“So…is she OK?”
“Yeah, she was born three months early and just needs some help with her lungs now. She’s doing really well.”
“That’s good. How long  is she going to need all that stuff?”
“Hard to say, it’s up to her, really. Hopefully she’ll only need it at night by this Christmas, but you never know. And then she needs to learn to eat after that, so…”
“She doesn’t eat right now?”
“No, not with all that air blowing into her lungs – the food would go everywhere and that wouldn’t be good at all.”
“How do you feed her then – that bag?”
“Yeah, that’s her lunch. It goes right into her stomach through this here. That’s her g-tube.”
“What’s a g-tube?”

Probably one of the most common questions we’ve had in the past six weeks. What’s a g-tube? And the answer has proven to be one of the most interesting conversation points I’ve had in a long time. Everybody seems to get the whole breathing thing. We all know that preemies can have a hard time breathing when they’re really early. It’s not that unusual and even if it is new to someone,  it’s something that you can see right away. A big snorkel hose attached to a facemask that’s strapped on the baby’s head – you get the visual immediately. Nowadays most people know someone who was, or was closely connected to, a preemie and are somewhat familiar with what they can go through so the breathing assistance isn’t that unusual. People just get curious, and then they get hooked in when they see Princess Blue Eyes in all her adorable glory. We give them the quick overview and they take it in stride, everything’s normal enough. But when we finally roll around to the g-tube…well, that’s a whole ‘nother thing altogether.

Nyana shows off her original g-tube. She had it for 6 weeks at home before getting the mic-key upgrade.

It’s a gastrostomy tube. You can Google it for hardcore details (but those of you who want them already have…). In it’s purest description, it’s the tube that delivers baby formula directly to Nyana’s stomach. In a cool twist on extreme piercing, one end of the tube is inside her stomach while the other end passes through her stomach wall, through the skin, and out to a fixture that allows us to connect another tube to it which is in turn attached to a bag full of formula fed through a dispenser pump. The whole deal is called an enteral feeding system. With her first model, the tube came right out and through a big blue rubber protective disc with a clamp to keep it in place. It continued on in a ten inch “tail”, which had to be anchored to her belly with a bandage called a Grip-Lok. A pad of guaze was slid in between the blue disc and her skin, to absorb any leakage. Yes, that’s right, I said leakage. And all of that would be taped down as needed with surgical tape. Every day the whole deal would have to be cleaned (except the Grip-Lok, which could go a couple days before needing to be cleaned and repositioned) with saline and q-tips.

Remove the tape, remove the guaze. Crack a saline bullet over a q-tip and get in under the blue disc to clean the site. Dry it up with a dry q-tip and cut a slit in a guaze pad. Slide the guaze pad between the blue disc and Babygirl and tape it in place. Pull onesie down so Princess Grabbyhands can’t mess up the brilliant job you just did.

A closeup of the g-tube ground zero.

As you know by now, we have just been upgraded…wait, let me rephrase that. We have just been “upgraded”…to a mic-key. Yeah, I think in the end it will be much better, but Nyana’s new g-tube adapter kit will need some getting used to. It was inevitable, and the mic-key that we’ve got now is what she’ll have until she doesn’t need it anymore, but it’s still another thing to get used to all over again. I’m sure as it heals and we get used to it we’ll come around, but for now there’s a big learning curve for everyone.

Nyana shows off her new gear, 2 days post-op.

It’s street name is “a button”.  It looks very much like a spout for an inflatable mattress or  pooltoy. It’s got that same rubber fliptop  – you know the one. And it’s just this…plug…button…fixture thing. Picture that fliptop sitting on a stack of three or four nickels and you’re getting into the right neighbourhood. There is now an adapter tube that replaces the ten inch tube that stuck out from the older model. That can detach now, so Princess Yankyfist won’t be grabbing at things she’s not supposed to anymore (that’s a plus). Just plug the adapter tube into the button and turn it clockwise a full rotation until it clicks. Plug the feedbag tube into the other end of the adapter and you’re off to the races. It’s even got a sweet little medication on-ramp so you can administer meds without removing the feeding tube. Handy. The site doesn’t require the guaze pad anymore but still requires some cleaning and maintenance around the skin. It’s worth mentioning somewhere here that both models are safe for bathtime. Because of the lack of tail cord, Mr. Button means that swimming pools could actually be options for exercise, when she’s ready for it. But the big question…what if Mr. Button falls out? Well yes, it can happen but don’t worry. We’ve got that covered.

There’s a little backdoor outlet on the button that accesses the balloon bladder of the unit – the little donut of inflatable tubing that maintains the secure seal on the inside of the stomach. It’s filled with water and we need to change it out every three months or so. If Mr. Button falls out, you empty the balloon bladder, lube him up and reinsert him back into the site, then reinflate the balloon bladder with water to seal it back up. Everything’s done with syringes and tubing and adapters. That’s pretty much the deal. Did we ever mention how we got to practice all that in the hospital on a g-tube doll before we could bring her home? Yes, a g-tube doll. It was a doll, with a hole in it’s stomach, and that’s what we learned on. Very handy, yes, but not something you ever thought existed until you realized that it’s kind of the only way you can really learn how to do it.

You still with me? Getting weird yet? Don’t worry, it’s cool, I get it. It can be a bit strange at first but hey – if it has to be done, that’s what you have to do, right? Besides, it’s a small price to pay to have her home, in the grand scheme of things. And it’s not all bad, really. Once you’ve paid the price of admission, there are actually quite a few benefits to being a member of the G-Tube Club. For example…

Nyana gets fed throughout the night continuously, 41ML/hr from 9pm to 6:30am. Ish. We start it at 9PM, add the second part at 1AM, and then change out the empty bag at 6:30AM. She never wakes up hungry. I hear some babies need a bottle in the middle of the night or something. We have no idea what that’s about. I usually go to bed around 1AM anyway so now I feed her, go to bed, and she wakes us up with googly noises in the morning. Ususally. I mean, she is a baby – there are going to be occasional fusses and screamytimes, but I know at least none of them are from her being hungry.

It doesn’t matter if she doesn’t like the taste of it. Since the g-tube passes the tongue altogether, it doesn’t matter if the Princess is picky. She’s going to get fed whether she likes it or not. I mean, she’s got some muscle in her little legs, but not enough to kick me off that tube. It’s like being thumped on with a stuffed animal – she’s can kick as hard as she wants, but it wouldn’t even be enough to massage my shoulders…or would it? I digress. She can hate the taste but that girl is still going to eat at 9, 12, 3, 6, and 9. (sidenote – luckily, she seems to like the taste of this formula anyway. We use it for her oral stimulation times and she hands big, goofy smiles out like candy at Halloween)

She doesn’t have to be in the mood to eat.  There are no fights at dinnertime. There are no games to be played, no tricks to be pulled, and no coaxing or pleading or negotiations. She can be distracted with TV or something shiny, it doesn’t matter. Let her go about her day as she would normally, this is an order to-go at it’s finest.

She doesn’t even have to be awake to eat. I know some parents have to schedule naptimes and activities around feeds to maintain a schedule…yeah, we don’t have to do that. The pump and bag fit in this little Nyana-sized backpack so she’s completely portable. She can nap while she has an afternoon meal, she can eat while we’re shopping in the mall. She’s very versatile that way.

Burping her takes on a whole new meaning. When your g-tube baby has gas, just draw it out! Having a portal to your baby’s tummy is a huge advantage when she’s got gas. Just attach a syringe to the extension cord and pull the plunger! We can draw out excess air from her stomach and what’s even better than that is we can measure it with the syringe! 20mL of burps here, 15mL there… It’s noteworthy to mention here that she’s also a lot less burpy than a normal baby. There’s none of that air-sucking that can happen during bottle feeds, so gas just isn’t really a problem that much. But when it is, it’s not a problem for long. 😉

Medicating is super easy. Meds would be a whiz if you could just get them into those little ones a little easier, am I right ladies? Yes, now they are. From hydrochlorothiazide to baby Tylenol to spirolactate to gripe water. Load it up, pop the cap, and drop the hammer. Done. No muss, no fuss, no taste, no waste. Everyone’s happier.

So there are some things that suck, some things that rock. There are some things that are probably an even trade (bottle care vs. feedbag care). Some things that might be a bit of extra work, but there’s also a list of things that we don’t have to do at all…it’s all starting to feel just like normal parenting. This is kinda what it’s about, right? There are things that we can be appreciative of because of the situation we’re in, instead of resenting them for what we’re missing out on. Things trade-off both ways, and you have to find the upsides where you can – especially when you’re a cord-carrying member of the GTC. But you know us. We’ll focus on the sunshiney things and let the rest work themselves out. I mean, come on.

Look at those eyes.

Did someone say downside? What downside?

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About Donners

Thirtysomething father to The Royal Princess of The Sunshine Brigade, a 27 week preemie who survived 222 days in the NICU. The Queen and I are still crazy in love, and life in Vancouver's West End is getting back to a whole new normal that we've always been waiting for but never knew we would get quite like this.
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12 Responses to The G-Tube Club

  1. Holly says:

    Don, I love your posts–I feel as though I’m sitting talking to you! And Nyana gets cuter with every picture you post. She’s just a super-trooper, and such a special wee one. Most definitely gonna be a daddy’s girl 100%.
    Much love to you all.

  2. Jennifer says:

    Thanks Don, that was very enlightening. The whole thing seems a bit confusing but it’s most likely second nature to you by now.

  3. My god she’s cute.. and just keeps getting cuter. LOVE the new banner.. and her dress.

  4. Lynn duncan says:

    Is it strange that I already knew almost all of that?

    And about J tubes and various ostomies, shunts, ports, picc lines, vest treatments vs manual percussion, and too many other issues to mention that way too little kids have to deal with not to mention their parents?

    But I like hearing it all from the point of view of just how it all fits into real life, and with illustrations. Really cute illustrations.

    Without meaning to, Nyana is out there showing the world that Princesses take thing in stride and cope, with help, of course.

  5. Linda says:

    Wonderful post, Don!! If I ever come down to visit I can give you a couple of days off…you have given so much in-depth instructions on how to care for Nyana all I would have to do is print out these instructions!! And with all the positive sides to having a g-tube baby you just may have many mums going to their pediatricians and requesting that their babies get the latest in feeding care!! Maybe B.C. Children’s can hire you to teach new recruits of g-tube feeding – you are a natural at it!!
    Thanks again for a very informative blog post on your g-tube adventures!!
    Love,
    Mum

  6. Tasha says:

    She is so beautiful! ❤

  7. robyn says:

    LOVE this post 🙂 agree with holly, i love how you write- seems to really show what youre like IRL… a wicked funny, loving doting daddy ❤

  8. Max's Mum says:

    Max welcomes you to the button-club, Nyana! It looks pretty snazzy!

  9. agilemom says:

    Beautiful girl. And the new banner is just awesome!

  10. Duncan & Dorothy Gillies says:

    Hello Don, Karen and Nyana
    What a great description of the reaction of strangers and the reality of life with Nyana’s G-tube. As someone else said, you could be a trainer for other families – or at least by sharing your positive experience, you will make them feel more comfortable in looking after their own G-tube babies.
    Keep the good news flowing. Loved the photo of the three of you – kissing those chubby little cheeks!!
    Love Duncan & Dorothy

  11. OMG! I read this entry the day it was published, but on my ipod and I don’t see the banner there, just came here now to check on Nyana’s weeks at birth (because a tvcher asked for prayers for a neice put on bed rest with 23 week triplets still in utero and I wanted a comparison, so where better to check?) and wow, the newest banner picture in all its glory.

    I love it!!!!!

  12. Twiggy says:

    She’s doing great. Thank you Don for explaining it all. I am learning all this from you all.

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