Simple Tubie Hacks
When we first arrived home from the NICU with our tubie we were completely overwhelmed. We set a lot of systems in place to make our lives easier and more manageable. Over time, we were able to adapt these systems to be even MORE efficient. We want to share these tips or hacks as we like to call them so that your life can be simplified as well! I will note that the goal of this post is not to promote specific products. If you're looking for items that are great for life with a tubie, you'll want to check our previous post about our recommended Top Ten Tubie Items. Take a peek, use what you like and comment with any other tips you'd like to add to the list!
HANG YOUR TUBIE PADS
Not only is this the best way to hang dry one of the smallest items in the washing machine, but it also helps you keep organized!
TUBIE FRIEND DIY
For a more realistic doll to practice on, check out our Tubie Doll Tutorial. However, to make your home (and stuffed animals) for tubie friendly, just for fun, snip a small hole in their tummy and insert an extra button you may have around the house. It's simple, cute, and a fun keepsake as well.
USE STICKY HOOKS
I bought a pack of 3M sticky hooks when we were adjusting to being home from the NICU with Arlo. Then I ran out to find about 32 more. 32 hundred. They were all over our house when Lo Lo wasn't mobile yet. We set out stations around areas where we spent a lot of time like near his swing, in the living room, etc. Now it's used to primarily hold his pump on his crib for his overnight feed. Either way, if you're able to ditch the IV pole, it makes life easier. And cuter because who doesn't love Bumble Bees?? This bag was adapted but you can fit the pump and bag in here. When Lo couldn't walk, I carried it around or clipped it on my baby carrier. I called myself "the one man band" but at least we did it in style. Now he wears it around like a back pack.
Somedays I feel like Wonder Woman and demolish my to-do list before 9 am. Some days, however, I can't remember if it's Tuesday or Friday or at 3pm if I'd had breakfast yet. One thing I don't want to ever slip up on is our schedule as far as feeds or meds go. Early on when we were adjusting to this crazy life or even on days when I just know we have a lot going on, I set timers on my phone. I usually have my phone on or near me so this way I know that (even if I have a top knot, coffee on my shirt and and am crawling through oodles of LEGOS) I know that Arlo's needs are met.
LABEL THE BAGS
This tip really holds true on 'surgery eve' as we call in our casa. Nights when we set alarms for the middle of the night to switch the pump over to Pedialite and are trying to calculate rates and doses as we're adjusting to the kitchen lights at night. You can also use this tip if you have a care giver ready to set the pump while you're away. (That or use this printable go to guide). Sometimes my hubby and I pass the baton of tubie responsibilities in the evening and it keeps us both on track. Scribble some sharpie on those bags and take the guess work out things, y'all!
Arlo has tracheomalacia. Long story short, his trachea or breathing tube is much smaller than it should be and flattened in two spots. When he's sick, it's much harder on his body than it should be and we use a nebulizer to get him back on track. The nebulizer is only 'as needed' so it's not part of our regular routine. I have to give Grandma Dee Dee credit for this great idea when she realized I missed one of his treatments and wanted to help. How genius is this?? Expo markers to write the times down first thing in the morning and cross off as needed.
HAVE MEDS READY
Remember when I told you that hubs and I pass the baton? He works until late at night and I pretty much crash at my earliest convenience. This is a great way to keep meds away from hands that can reach counters but are measured, ready, and give simple reminders. This is one of those times I asked myself..... "am I getting lazy?" But, after I appreciate the efficiency of this simple hack I felt like it was just one of those go-to tips that made sense and needed to be shared.
I'm super picky about how these get washed. Did you know you can actually pull sudsy, hot water through the extension while it's clamped? You can. It pulls any little drip of formula, milk or food through the tube and leaves it lasting MUCH longer than we anticipate via our supply company. Soak it in sudsy, hot, water first. Bring the clamp to the top of the med port, clamp, and pull everything down through the extension tip. Run just hot water through at the and then leave open to dry. Vioala!
This is a way to convert Inifinity Pumps into feed sets that can tolerate thicker fluids or blenderized diets. Pull off the rubber 'drip' logo side of the casette to reveal the clear plastic head. Snip it off with a pair of scissors. Pop it back into place and blended foods will flow easier though the set.
This is one for my hubby, Jeff. There was nothing that set him of more than holding the 'PRIME' button for what seemed like 15 minutes while he waited for the formula to slowly click it's way through the tubing, beeping all the way. If you hate this as well, do this simple trick. Elevate the new bag. Take off the cap from the end and add the extension on. Look closely at the cassette for the 'drip' icon. Yup, I promise it's there. Pinch that while making sure the extension and tip are LOWER than the bag and watch the milk fly through the tubing SO MUCH FASTER than with the pump. We start each and every day like this and knowing we're facing each day with a tubie hack right off the bat makes use feel all sorts of empowered. Hoping this does the same for you.
I promise you I have more tips and hacks that are part of our day and it's so hard to condense them all into one blog post. Hacks like the emergency g tube kit, speed venting, and of course our g tube onesies. Our goal is to make life easier for someone that has a difficult path they've been dealt.
Let me know if you'd like to see more posts like this and if you have more to share with us please comment below! Keep tubing, tubies. You're amazing.