22 Tips to Keep Your Sanity as a Tubie Mom

Being a mom to a tubie is not easy. It is actually pretty confusing, especially in the beginning, and very frightening. I have been on this tubie journey for 15 months now and want to share some of my tubie mom wisdom, so maybe it can make your life a little less stressful, because let’s face it–life is anything but easy right now!

Disclosure: This post may contain affiliate links that earn me a small commission, at no additional cost to you. I only recommend products I personally use and love, or think my readers will find useful. View full disclaimer.

Please keep in mind that this list is for informational purposes and it is not to be taken as medical advice. This is what worked for MY child but yours may have different needs. You need to discuss this with your child’s medical provider before trying any of these or do so at your own risk.

1. Use a pencil box like this one here to house syringes, meds, and extension while out and about.

   

   

2. Accept the fact that you WILL feed the bed. If you have already, Congrats! You have joined the club. I have a waterproof cover on her mattress (like this one), PLUS two dog pee pads under her fitted sheet. This way, it isn’t that big of a mess to clean up when it happens.

   

   

3. Vomiting will happen. Unfortunately. Keep puke buckets around the house. I literally used whatever I could find that was easy to wash out (e.g. plastic tray, toy bucket, even a small baking pan…don’t ask). Also helpful to line everything with a dog pee pad. We ordered ours by a 100ct box off Amazon.
4. Make a G-tube emergency kit. In fact, make three! One for each car, and one for the house. Here is a look at one of my mini kits. I also have bigger ones (check out my post on g-tube emergency kits) that have a feeding bag and back up formula in case of a bigger emergency.
   

   

   

5. Hoard as much supplies as you can. It is stressful to think you will run out of “life-saving” supplies. Ask your durable medical equipment (DME) company for as much as you can (e.g. back up buttons, feeding bags, extensions, syringes, gauze pads, tape, formula, etc.), and just donate to another tubie mom later if you don’t need them.
6. Join the Facebook Group for feeding tubes: G-Tube Babies (G/J), (J), (N/G), and (N/J). These mommas are such a wonderful resource for support, tips, and place for supplies.
7. Always double check the bag is closed tight (the lid can be difficult to close tight the first time around).
8. If you are using a Kangaroo or Infinity pump, make sure to get all the air out of the bag so in case your bag tips, it won’t pump air in the line. And, learn the trick to priming the line without holding the Prime button down.
9. Have your DME’s number saved on your phone. There will be emergencies and you will need to contact them quickly. Don’t search paperwork for that.
10. Change the settings on your pump so it DOES NOT beep when done. Get sleep! Find the PDF for the Infinity Teal pump here. Scroll down to page 19.
11. When we give continuous feeds overnight, we use a lunch bag with icepacks so I did not have to get up and refill. Ours looks like this.

    

    

    

    

    I will add that the rate we set the pump overnight is very slow that when the formula/food reaches to her tummy, it is room temp and not cold anymore. (note: use caution and consult with your medical providers to see if your formula/food is cleared to do this!).

12. Make a chart / schedule for all the feeds and medications. It will ease your tired mind and allow others to follow directions so you can get a break.

    

    

13. Watch and learn how to reinsert a g-tube. It will happen. I panicked and screamed the first time it happened but I took a deep breath and put on my big girl panties. You can do it too!
14. Not all babies are the same. If your baby continues to vomit or have problems with feeds, and your GI doctor/nutritionist don’t seem to really help, get a second, third, fourth opinion!! Unfortunately providers don’t have all the answers and us mommas need to advocate for our babies.
15. Get a feeding pump backpack from your DME or make one! I have both and LOVE my waterproof owl one. I ordered it here. We use it even though we don’t use the pump during the day anymore. I put her food, button supplies, emergency kit, diaper, wipes, etc. in it. It makes traveling so much easier and cute!

    

    

    

    

    

16. GET THE MIRACLE O-RING SYRINGES. PERIOD. You will not regret this. The disposable ones from the DME have caused me to send food flying to my ceiling and the roof of my car, twice. They cost about $3 something for a 60ml syringe from this website. The numbers don’t rub off and they last months! No joke! Worth. Every. Penny.
17. When I have needed to vent my girl’s tummy, I found connecting the extension to a large 60ml syringe without the plunger worked best. I just have her lay on her back, hold it above her tummy to allow air to travel upwards. It is burptastic!
18. In case of an emergency, I have GENTLY pulled back with an empty syringe to check for stomach contents when I had to replace a button instead of going into a hospital and expose her to nasty germs (note: If you decide to do this, use so much caution and be very gentle as to not pull when there is resistance).
19. Use a mommy hook to hang the feeding pump bag from your stroller, like this one.
20. In this journey you will become many things, and wear many hats, a nutritionist, a gastroenterologist, a feeding therapist, even a scientist. You will learn to try different things and record results each step of the way in hopes for positive change. Keep a journal! See how I used my bujo for this.

    

    

21. I don’t know your story exactly or where you live, but if your child has a feeding tube, there is a chance that they will qualify for Medicaid based solely on medical need, even if you are over the income requirement. Look into medical waivers in your state as well (if offered in your state), you will probably qualify for in home nursing care. We live in SC and thankfully have these resources available. Initially I said no to nursing, but I am glad I took a chance. It has been a major blessing! I can now work part-time, run errands, do housework, and even have some me-time because of this wonderful resource.
22. Last and most important, don’t forget to breathe. Tubie life is not for the faint at heart but you got this! We never thought feeding issues were going to be in our future as a mom, but these kiddos are strong and so so special. I swear my girl has taught me so much being her mom, things I don’t think non-tubie moms could ever know.

Take a bow momma–you are amongst the badass tubie mom crew. Wear your crown high, and if you falter… have no fear, we have to stand together. No? Too much? Yeah, Okay, I know. I am just so tired that I get all giddy 😉

Again, please keep in mind that this list is for informational purposes and is not to be taken as medical advice. This is what worked for MY child but yours may have different needs. You need to discuss this with your child’s medical provider before trying any of these or do so at your own risk..

What are some things you have learned along your tubie journey? I would love to hear from you!

Last updated: February 9, 2019.