A day with a Tubie

Our decision to have a Gastronomy Tube placed in Quinn was not an easy one. She had already been through anesthesia quite a few times, so I was terrified for yet another surgery or milestone. I was praying so hard that she would surprise us and just eat and drink before needing that tube. But she wasn’t ready, and we knew it was the best way to get her home and healthy. So we switched from the feeding tube in her nose to the more long-term one in her stomach.

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Her NG tube. Little mama did NOT like that thing. Must have ripped it out a handful of times!
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Our medical supply drawer system where we keep syringes, gauze, feed bags, tube extensions, emergency kits, etc.

And I LOVE the community of parents who care for tube fed kiddos that I’ve found online! It’s been so helpful for me to see what others do and to learn from others’ experiences with their children and their tubes. So I decided to make this post for anyone who is curious to what a typical day looks like with a tube fed baby.

I keep all of her medical supplies and such in this little drawer thing. Otherwise our kitchen would just be overrun with craziness.

Each morning she gets new parts for the tube to keep it clean and sanitary. We have supplies delivered once a month. EFF THAT NOISE IT IS EXPENSIVE. And insurance is a joke. aaaanyways…..

Every morning I put a new extension tube on Quinn’s button (see picture, the button is the little permanent piece that’s in her tummy). I also clean the site twice a day and put a clean “button pad” around it. This keeps it dry and keeps it from leaking onto her skin or clothes. LIFE saving. We really need to order a million more, but haven’t done so yet.

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That extension part that hooks into her belly is how the food runs into her stomach! We simply fill up the feeding bag with whatever food or forumla she needs and we run it through the mechanical pump and into her. There is also another way to do it, with syringes called bolus feeding (also gravity feed), and we do that sometimes, but we haven’t moved to doing that 100% yet. Also, when she is 1, we are hoping to move to something called a “blended diet”, which is REAL food and milk for her instead of a toddler formula made by the companies.

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Once the bag is all connected to Quinn’s tube, we mess with the math on the machine a little, then it feeds her!

Right now, Quinn gets 5 feedings a day in her tube of formula, as per her calorie needs. But for 3 of those (breakfast, lunch, and dinner), we put Quinn in the high chair and we try and feed her by mouth. She has feeding therapy every week at Vanderbilt, and we are working really hard at home to teach her to eat and drink too.

Teaching Quinn to take bites and how to swallow.
Teaching Quinn to take bites and how to swallow.

It’s a little tricky trying to balance keeping Quinn hungry and willing to eat by mouth but also getting her the nutrition she needs by putting it through the tube. We have an excellent team working with us to try and get her moving on the track to a tubeless existence! So we have very high hopes that by the time she hits preschool age, she will be tube free.

Whatever Quinn cannot eat by mouth, we compensate by putting the calories in the tube. She eats so little right now that she still gets most of her nutrients in the tube. Gradually as she starts eating more, we can lessen the amount in the tube until it’s not necessary anymore.

Sometimes we use this syringe to feed. It can get messy with an active kiddo!
Sometimes we use this syringe to feed. It can get messy with an active kiddo!

It’s a really long journey and it does take a very long time. But Quinn is making progress little by little, and that’s all we care about! We are just proud that she is taking steps! She’s healthy and happy, and that’s how we want to keep it, so we are practicing a LOT of patience 🙂

After Quinn’s last meal, we bathe her or clean the site again, cover it up, and she goes to bed.

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it glows in the dark, for when you need to feed her at night. We used to feed her during the night when her stomach couldn’t handle large volumes, but now she can eat all her food before bed 🙂

And that’s what a typical day with our tube fed kiddo is like! It can bring a lot of stress at times. If you also have a tube fed child, then you know what I mean! [How do you explain to people what it’s like when your curious and handsy baby decides to pop their gastronomy button right out of their body, leaving a gaping hole!?]

But life with a feeding tube is also something we’ve finally made normal for us 3, and the tube is such a life saver for our sweet girl who cannot eat or drink by mouth yet. We just keep trying every day, and she is a trooper. We look forward to the day when Quinn will eat and drink everything she needs for her body 100% by mouth. But until then, we are her biggest fans and will be doing everything we can to support her progress in a safe and happy way.

Questions? Comments? I’d love to hear from you!

3 thoughts on “A day with a Tubie

  1. Hello! I love this post, our daughter is going through an almost identical journey that you describe in this blog post. She is 11 months now and goes to the feeding clinic at nationwide children’s in Columbus, Ohio. It’s so nice to know we’re not alone on this feeding journey. I know your daughter is older now and I’m just wondering if over time she has made significant improvements? We’re hoping our daughter Lillian will the older she gets. 😊

    1. Hi Jenessa! I’m so glad we can connect and find others who are in the same boat 🙂 How is your sweet girl doing with her therapy? Quinn is 3 and a half almost and the toddler stubbornness has made it a littttle harder to make progress lately…But she’s probably eating and drinking 50-60% of what she needs by mouth. So we only have to feed her tube about half the time! It’s a loooong process but it’s slow and steady. Never give up!

      1. Well that gives me a lot of hope. Some days I feel like it’s a never ending journey. She can drink one ounce at a time 3x a day and one ounce of soup 3x a day. We are working on increasing this but as you know it’s a long, steady process. We see a feeding therapist once a week and we also see a clinical psychologist at the comprehensive feeding clinic at children’s in Columbus, Ohio. Lillian just turned one and I’m starting to have no expectations and I have faith that when she is ready she will gradually need the tube less and less. My daughter is already stubborn so I can’t imagine the toddler phase. Thanks for the reply, it gives me encouragement for her situation 😊

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