Top Ten Tubie Items

I look back at when I was a first time mom and remember feeling completely overwhelmed by the millions of products available. I tried weeding through the items that didn't seem practical but also listening to the veterans that swore by certain things.  I used a cup from the kitchen to pour over heads at bath time, warmed bottles with hot water and a bowl, and my babies' butts were wiped with wipes that weren't warmed. This is what worked well for our family. I felt like I could use my common sense and determine what was needed and what wasn't.

Fast forward three years to my second son Arlo's birth and NICU experience. His team of doctors have coined the term "multi-factorial" when referring to his long list of medical complications that continue to present both new and ongoing conflicts with one another as he grows. I was quickly thrown into a new world of feeling desperate to get/have/use anything to help my son grow, thrive, leave the NICU, eat, breathe, develop, etc. Even though some of these items didn't make those things happen, some items simply helped heal this mama's aching heart and it's tough at the time to weed through which is which.

It's a very confusing place being in the NICU. Things that weren't necessary suddenly seem to have importance. For example, I was desperate to make his NICU room in the hospital feel like home. He didn't need a personal quilt from home on his crib to lay on... but he did need it. We all needed it. It made the cold, beeping, always bright hospital feel more like home. There's a new set of rules for tubies, NICU residents, or medically fragile babies, and after living this 'tubie' life with our son, my family has blended together what helps our hearts (wants) and what's best for him (needs). The world of feeding tubes can be a scary and overwhelming one to enter into and I've seen time and time again families starting off on this journey wondering, "what do we REALLY need?". This is a bare bones list of what we find helpful and necessary for life with a tubie. Think of it as a 'starter kit'. Hope you find it helpful!

As a disclaimer, I will say that this is very personal for each individual so I will not be going into food items, formulas, thickeners, etc. as everyone is on a different path when it comes to eating. Know that for OUR busy toddler son and his g tube, these our the top ten must have items for day to day ease.  

 1. Pump Back Pack  I'll never forget the sound of the IV pole rolling around on the wood floor the first week we came home. We felt like we were walking on egg shells with our son and were so afraid of hurting him while moving from room to room. If you're able to ditch the pole and switch over to a pump bag, it makes a world of difference. I've adapted these Skip Hop Back Safety Harness Back Packs. I used the strap to create the inside and external hooks. I'm not making them for sale quite yet, but they can be found on  Etsy  through other sellers. We keep an  ice pack  in ours at night time and have 3M hooks through out our home so that we can clip it up and move on with our day. Usually the hook attached to the back pack is the best way to keep mobil. We hook it on grocery carts, high chairs, pack and plays while he sleeps, etc. 

1. Pump Back Pack

I'll never forget the sound of the IV pole rolling around on the wood floor the first week we came home. We felt like we were walking on egg shells with our son and were so afraid of hurting him while moving from room to room. If you're able to ditch the pole and switch over to a pump bag, it makes a world of difference. I've adapted these Skip Hop Back Safety Harness Back Packs. I used the strap to create the inside and external hooks. I'm not making them for sale quite yet, but they can be found on Etsy through other sellers. We keep an ice pack in ours at night time and have 3M hooks through out our home so that we can clip it up and move on with our day. Usually the hook attached to the back pack is the best way to keep mobil. We hook it on grocery carts, high chairs, pack and plays while he sleeps, etc. 

 2. G Tube Belt  Once Arlo started doing tummy time I began worrying about his Mini One Button pulling from side to side, or even worse, it being pulled out.  I propped him up with extra pillows and blankets to cushion him. However, the first time he went down a slide on his tummy, I knew we had to find something to better protect the button from tugging or being pulled out. We don't use this  Benik Belt  daily. We use it for active times when we take a trip to the park, go to gymnastics class, or a play place. However, now that he wrestles with his big brother and slides down the stairs on his tummy, we may be using it a lot more in these toddler stages! They are pretty pricey, so we were able to have our pediatrician call it in as a prescription/recommendation and it drastically reduced the price.

2. G Tube Belt

Once Arlo started doing tummy time I began worrying about his Mini One Button pulling from side to side, or even worse, it being pulled out.  I propped him up with extra pillows and blankets to cushion him. However, the first time he went down a slide on his tummy, I knew we had to find something to better protect the button from tugging or being pulled out. We don't use this Benik Belt daily. We use it for active times when we take a trip to the park, go to gymnastics class, or a play place. However, now that he wrestles with his big brother and slides down the stairs on his tummy, we may be using it a lot more in these toddler stages! They are pretty pricey, so we were able to have our pediatrician call it in as a prescription/recommendation and it drastically reduced the price.

 3. Emergency Back Up G Tube Kit  Always have a back up button! Always. You never know when you'll be laying your child down on a play place counter, floor, trunk of a car, grass, or at home (yes, those have all been true for us) to change their button out or reinsert one that's been pulled out. I kept ours in a pouch at first but was so concerned about the balloon being damaged that we switched over to these fabulous air tight hard containers by  Sistema . You can check out my previous  blog post  about the details inside. We carry this in our diaper bag and would not recommend leaving it in the car to avoid temperature changes. We live in Wisconsin so it's a definite no no for us.   

3. Emergency Back Up G Tube Kit

Always have a back up button! Always. You never know when you'll be laying your child down on a play place counter, floor, trunk of a car, grass, or at home (yes, those have all been true for us) to change their button out or reinsert one that's been pulled out. I kept ours in a pouch at first but was so concerned about the balloon being damaged that we switched over to these fabulous air tight hard containers by Sistema. You can check out my previous blog post about the details inside. We carry this in our diaper bag and would not recommend leaving it in the car to avoid temperature changes. We live in Wisconsin so it's a definite no no for us.

 

 4. Tummy Tape  We have been playing around with Arlo's schedule a bit but for the most part, he does a few hour long feeds through out the day and then a continuous feed all night long. Because of this, we were leaving his extension taped to his tummy between feeds. This made it much easier on his sensitive skin. We also make sure to tape it down over night when he's rolling around in his bed. Tapes i would recommend are the typical  silk tape  that DME companies supply but can also be found on Amazon and in the hospitals. We 'clean the room' of all supplies when we leave the hospital and have a nice little supply going. When Arlo's tummy gets really irritated or red, we switch taping side to side and then also use a  paper tape  that is less sticky and intense. Once his tummy is healed, we switch back because he's a toddler and has been very grabby lately. 

4. Tummy Tape

We have been playing around with Arlo's schedule a bit but for the most part, he does a few hour long feeds through out the day and then a continuous feed all night long. Because of this, we were leaving his extension taped to his tummy between feeds. This made it much easier on his sensitive skin. We also make sure to tape it down over night when he's rolling around in his bed. Tapes i would recommend are the typical silk tape that DME companies supply but can also be found on Amazon and in the hospitals. We 'clean the room' of all supplies when we leave the hospital and have a nice little supply going. When Arlo's tummy gets really irritated or red, we switch taping side to side and then also use a paper tape that is less sticky and intense. Once his tummy is healed, we switch back because he's a toddler and has been very grabby lately. 

 5. Tegaderm  Bath water I don't worry about with the g tube. Water play outside with the hose in the summer i don't mind either. Lakes I don't trust. Chlorine I don't trust. I usually use the rule of them that anything that goes through his stoma should be safe to go in my mouth. When he is in a lake or pool we cover his tummy with this sticky tape and some split gauze. We use 2 inch split gauze to absorb any leaks and then the 4 inch tegaderm over that. be sure not to order the 2 inch size  tegaderm  or it won't cover the whole tube.  The first few times you use it it takes some practice but i feel I've gotten a good hang of making sure it's water safe at this point. 

5. Tegaderm

Bath water I don't worry about with the g tube. Water play outside with the hose in the summer i don't mind either. Lakes I don't trust. Chlorine I don't trust. I usually use the rule of them that anything that goes through his stoma should be safe to go in my mouth. When he is in a lake or pool we cover his tummy with this sticky tape and some split gauze. We use 2 inch split gauze to absorb any leaks and then the 4 inch tegaderm over that. be sure not to order the 2 inch size tegaderm or it won't cover the whole tube.  The first few times you use it it takes some practice but i feel I've gotten a good hang of making sure it's water safe at this point. 

 6. Granulotion  Once the g tube site is healed from the initial surgery, you'll feel very proud of how clean you've kept it and how nice it looks. Than the granulation tissue fairy will come to visit and BOOM you've got a new constant problem to deal with. it's not terrible but can be very sensitive and pop up with the slightest rubbing or irritation. My recommendation is to be sure the button is fitting nicely (to tight or too loose can both cause granulation tissue to develop). We've had it cauterized in the hospital a few times but it almost seemed to get worse after the frequency of treatments. We've also used a triamcinolome cream (a steroid) which didn't seem as powerful and caused hair to grow around the stoma. The magic answer to for us was to NOT use cloth g tube pads (the rubbing can cause irritation and granulation tissue) and to apply a small amount of  Granulotion . I used to use a Q Tip to apply this but it would absorb the medicine and you do NOT want to waste this cream because of how expensive it is. I've found that using a 1 mL syringe is much easier to apply and you can keep it in the syringe with a syringe cap to store for next time. This allows you to be more precise when applying as well. 

6. Granulotion

Once the g tube site is healed from the initial surgery, you'll feel very proud of how clean you've kept it and how nice it looks. Than the granulation tissue fairy will come to visit and BOOM you've got a new constant problem to deal with. it's not terrible but can be very sensitive and pop up with the slightest rubbing or irritation. My recommendation is to be sure the button is fitting nicely (to tight or too loose can both cause granulation tissue to develop). We've had it cauterized in the hospital a few times but it almost seemed to get worse after the frequency of treatments. We've also used a triamcinolome cream (a steroid) which didn't seem as powerful and caused hair to grow around the stoma. The magic answer to for us was to NOT use cloth g tube pads (the rubbing can cause irritation and granulation tissue) and to apply a small amount of Granulotion. I used to use a Q Tip to apply this but it would absorb the medicine and you do NOT want to waste this cream because of how expensive it is. I've found that using a 1 mL syringe is much easier to apply and you can keep it in the syringe with a syringe cap to store for next time. This allows you to be more precise when applying as well. 

 7. Adhesive Remover  As mentioned above, g tubes extensions and taping become a huge part of your daily routine. Tape always leaves a dark sticky residue after pulling it on and off day in and day out. I use these  adhesive remover pads  before bath time. It's almost like Goo Gone but for the body. It does have a strong scent from the alcohol in them so we do a warm sudsy bath right after. We also 'collect' these from the hospital at the end of each trip.

7. Adhesive Remover

As mentioned above, g tubes extensions and taping become a huge part of your daily routine. Tape always leaves a dark sticky residue after pulling it on and off day in and day out. I use these adhesive remover pads before bath time. It's almost like Goo Gone but for the body. It does have a strong scent from the alcohol in them so we do a warm sudsy bath right after. We also 'collect' these from the hospital at the end of each trip.

 8. Stain Remover  Thanks to my siter-in-law Jordan for this awesome find. Have you learned the meaning behind the term "fed the bed" yet? It means there was a tube or pump malfunction overnight and you will most likely wake up to formula, milk, or blended diet all over your child and crib. It's a mess. Find a trusty  stain remover  that really works. This one is a great pre treat for laundry and has worked wonders saving some favorite sheets and outfits. On that note, you might want to splurge and treat yourself to the  Little Green Machine  for cleaning carpet stains as well. This one is a great price and REALLY easy to use and clean up quickly after stains compared to large vacuum sized carpet cleaners.

8. Stain Remover

Thanks to my siter-in-law Jordan for this awesome find. Have you learned the meaning behind the term "fed the bed" yet? It means there was a tube or pump malfunction overnight and you will most likely wake up to formula, milk, or blended diet all over your child and crib. It's a mess. Find a trusty stain remover that really works. This one is a great pre treat for laundry and has worked wonders saving some favorite sheets and outfits. On that note, you might want to splurge and treat yourself to the Little Green Machine for cleaning carpet stains as well. This one is a great price and REALLY easy to use and clean up quickly after stains compared to large vacuum sized carpet cleaners.

 9. Oral Sponge for Medications  This item has multiple uses. For us, we use it to wash Arlo's mouth out after his medicine is given. One of Arlo's conditions is that he has EOE or an esophagus disorder. His esophagus swells and becomes inflamed with certain foods, so to prevent this he take a steroid medicine that coats his throat. If it stays in his mouth, he could develop thrush so we use this sponge to wash his gums and mouth out after each application. We used to use a wet washcloth but we kept getting our fingers bit in the process so this was our best solution. You would also use these for oral stimulation or even for help with brushing teeth for any kids with oral aversion.

9. Oral Sponge for Medications

This item has multiple uses. For us, we use it to wash Arlo's mouth out after his medicine is given. One of Arlo's conditions is that he has EOE or an esophagus disorder. His esophagus swells and becomes inflamed with certain foods, so to prevent this he take a steroid medicine that coats his throat. If it stays in his mouth, he could develop thrush so we use this sponge to wash his gums and mouth out after each application. We used to use a wet washcloth but we kept getting our fingers bit in the process so this was our best solution. You would also use these for oral stimulation or even for help with brushing teeth for any kids with oral aversion.

 10. Adaptive Clothing  Last but not least, adaptive clothing! Target has come out with a new line. I've heard mixed reviews on this. Most seem to be happy that it's offered at a store (online only) like target but the g tube holes in the shirts are fairly large and the right arm extensions have been snagging on the holes. They do offer a  cute sweatshirt  but in my opinion it's better to have the SHIRT have the adaptive hole and the extension could easily go out the bottom of the sweatshirt.   As we sat in the NICU over a year ago, I kept wondering what to do about all of the clothes we had saved for Arlo once we finally came home. We wanted to create a way to adapt his onesies while also delivering a positive message. My husband (who is a creative designer) and I created these onesies available in our  shop . You can check out the  story  behind them on our blog. We have lots more designs in the works, too! This way it keeps grabby hands off of the tube, protects the button, but allows access to the extension (while taped the to tummy). We sure hope our efforts can help you and your family!

10. Adaptive Clothing

Last but not least, adaptive clothing! Target has come out with a new line. I've heard mixed reviews on this. Most seem to be happy that it's offered at a store (online only) like target but the g tube holes in the shirts are fairly large and the right arm extensions have been snagging on the holes. They do offer a cute sweatshirt but in my opinion it's better to have the SHIRT have the adaptive hole and the extension could easily go out the bottom of the sweatshirt. 

As we sat in the NICU over a year ago, I kept wondering what to do about all of the clothes we had saved for Arlo once we finally came home. We wanted to create a way to adapt his onesies while also delivering a positive message. My husband (who is a creative designer) and I created these onesies available in our shop. You can check out the story behind them on our blog. We have lots more designs in the works, too! This way it keeps grabby hands off of the tube, protects the button, but allows access to the extension (while taped the to tummy). We sure hope our efforts can help you and your family!

Emily JasinowskiComment