1. Keep extra supplies in the car! We are on the go a lot for appointments with Rowan so I keep an extra G tube, extension, baby wipes and hand sanitizer in the car at all times. If we use any of them, I replace them immediately. There has been an emergency when we were far from home and Rowan’s G tube got pulled out and I know we always have a spare one in the car to replace it so it doesn’t close up!
2. That leads me to the next tip, make sure you know how to put a new G tube in! I freaked out the first time it got pulled out, but luckily I remembered how to insert the G tube and how much water his balloon needed. It was way easier and less scary than I expected! Freshen up your memory by watching a YouTube video on how to insert a new G tube every once in a while!
3. Create an emergency kit with extra supplies, tape, and anything else you use frequently to put in your diaper bag. I got this cute first aid kit bag from Target: (https://www.target.com/p/band-aid-jungalow-brand-build-your-own-first-aid-kit-bag/-/A-76157662)
4. Join this Facebook Group for feeding tubes: G-Tube Babies (G/J), (J), (N/G), and (N/J) or another local feeding tube group. These parents are a great resource for support, tips, and often have extra supplies to donate.
5. Change the settings on your pump so it doesn’t constantly beep when it’s done! Find the PDF for the Infinity Teal pump here. Scroll down to page 19. It will change your life.
6. Vomiting will happen. We keep burp cloths, baby wipes, and clorox wipes in all rooms of the house where we spend the most time with Rowan (family room, bedroom, and kitchen). I also have a good carpet cleaner on hand and LOTS of spare blankets for Rowan to lay on in the family room.
7. Don't refill the feed bag halfway through the night. When we give Rowan his continuous feeds overnight, we use a PackIt lunch bag so we don’t have to get up and refill the bag with milk in the middle of the night. I just safety pin the feeding pump bag to the inside of the lunch box and zip it up! This is the one we have: https://www.amazon.com/dp/B07M9CX3X7/ref=twister_B082V2HY4F?_encoding=UTF8&psc=1
8. Get a feeding pump backpack from your medical supplier or make one! We currently use one from our supplier that is made for the Infinity feeding pump. It’s tiny, waterproof, and looks like a puppy. It’s perfect for traveling in the car or stroller! This is similar to the one we have: https://www.overstock.com/Baby/Triac-Bee-TIJ-Backpack-for-Use-with-Infinity-Enteral-Feeding-Pump-Holds-up-to-500ml/29794330/product.html?refccid=ZHNLJ4UI3QOJF3SGLT7GWOCXFM&searchidx=0&option=53123324&kwds=Backpack%20for%20Use%20with%20Infinity%20Enteral%20Feeding%20Pump&rfmt=
9. Use a carabiner or Command hooks to hang the feed bag or pump backpack from. I use a large carabiner hook on Rowan’s stroller and in the car to hang the backpack from. I recently bought the Command hooks to try to hang around the house (learned this tip from another tubie mom) so I don't have to cart the huge IV pole around with me everywhere. I found a huge box of Command hooks at Costco last week on sale for $9.99!
10. Snap-up onesies will be your best friend. I rarely dress Rowan in anything other than snap-up clothing. It just makes everyone’s life easier! It’s easy to find snap-up onesies up to the 9 month size, but it’s tricky to find them larger than that. I recently found some at Primary.com that go up to 24 months! They are a little tight in the belly and wrist areas and I think Rowan fits better in one size up! https://www.primary.com/shop/baby/rompers/the-snap-romper?color=heather-gray&ref=plp_pdp_g1_5 Also, Buy Buy Baby carries a few brands of snap-up onesies that come in larger sizes like Kyte Baby https://www.buybuybaby.com/store/product/kyte-baby-snap-front-footie-in-crimson/5024372?brandId=7251
11. Get organized. I LOVE storage containers and organizing Rowan’s supplies. It makes my heart happy and life a little easier. I have multiple areas in my house for medical supplies. We keep a lot of large boxes with dialysis and feeding supplies in our guest bedroom closet. We keep them in their original boxes or I organize the smaller items into plastic drawers or clear containers. I also have a small cart from Michael’s in our bedroom (where Rowan’s bed currently is) that has supplies that I use a lot along during our nighttime routine. This is the cart we have: https://www.michaels.com/clear-10-drawer-rolling-organizer-by-recollections/10468254.html?cm_mmc=PLASearch-_-google-_-MICH_Shopping_US_N_Papercraft_CraftOrganization_N_N_N-_-&Kenshoo_ida=&KPID=go_cmp-6723841577_adg-83047654487_ad-388126270256_pla-520245456472_dev-c_ext-_prd-10468254&gclid=EAIaIQobChMI88aLtLHM5wIVUb7ACh0knwDfEAQYASABEgIPDvD_BwE
In the kitchen, I have a drawer dedicated to Rowan’s medications, formula supplements, syringes, and other gtube-related items. On the counter I have this cute three-compartment basket from Target to organize more things that I use frequently during the day: https://www.target.com/p/small-rectangle-3-compartment-woven-bin-gray-and-white-room-essentials-8482/-/A-52071049?ref=tgt_adv_XS000000&AFID=google_pla_df&fndsrc=tgtao&CPNG=PLA_Storage%2BOrganization%2BShopping_Brand&adgroup=SC_Storage%2BOrganization&LID=700000001170770pgs&network=g&device=c&location=9015107&gclid=EAIaIQobChMI4IKsnLHM5wIVzMDACh1tog_CEAQYASABEgI9gvD_BwE&gclsrc=aw.ds
12. I alternate every other day between two G tube extension pieces. This helps to make to sure I always have a clean, unclogged one for Rowan. Rowan’s extension gets so gunky and clogged with old milk from his overnight feeds that I constantly felt the need to use new ones more than I needed to. Every morning I soak the extension from the previous day in hot water and then rinse it out until it’s clear. Sometimes I have to quish the tubing all the way up and down to get the dried milk off of the sides of the tube. Then I let it air dry on the bottle drying rack.
13. Don’t wash medication syringes every time you use one. Put your used syringes into a “dirty syringes” bin and wash nightly or every other night if you have enough syringes. Every night, we soak them in hot, soapy water to loosen any medicine that might be stuck and then rinse and clean with bottle brushes as needed. Then just lay them out to dry on a towel overnight. It’s become a simple routine in our house.
14. Prime the Infinity pump manually before the first feed of the day. It is SO much faster than using the prime button on the pump. Before you load the cartridge in the pump, find the blue part with the water drop on it. Push it inward and hold the bag up in the air or hang it from the IV pole. Make sure you take the christmas tree lid off the end of the tubing before priming to allow the milk to flow to the end without creating a bunch of pressure inside and having the lid fly off.
15. Buy a G tube belt! I got Rowan a G tube belt because he figured out that the G tube existed and therefore grabs at it every time it’s out in the open. I’m scared that he’s going to pull it out and I’m not trying to deal with that every day! We got these cute belts on Etsy that wrap around his belly and have a small opening so you can get to the G tube to connect the extension and then close it up with the velcro to keep everything hidden from little hands. It also has extra straps to hold the extension and extra tubing if you want to keep it connected to the G tube. I got Rowan’s from this Etsy shop: https://www.etsy.com/shop/GoodGrannyGTubeGear?ref=simple-shop-header-name&listing_id=732075884
16. Teach others how to use the G tube and feeding pump. My family has been a HUGE help since they learned how to do this. They know the basics of Rowan’s medical issues and tube feedings. It gives me the ability to take a break or run errands without constantly needing to be home at certain times to feed and care for Rowan. It seems scary and confusing to others until you show them how to work everything. Once they do it one time, it becomes easier and less scary, which means it is easier for you to feel comfortable getting away for longer periods of time!
I hope these are helpful! What are some tips and tricks that you've learned with your tubie?
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