I saw kids at the APFED conference walking around with their tubes hanging out of their shirts and to my horror I saw that they were not even pinned to their undies! My first thought was that the moms must be extremely neglectful. My second thought was maybe I'm way too uptight about this. Maybe I've put way too much thought into it and need to be more relaxed. After all it's not the end of the world. To each his or her own. As for me I'll stick to my obsession with safety pins and tape.

Here are some of the buttons we have "owned" and different ways to secure them.

Securing the Bard Button

This is Nitara's Bard button about a week after surgery. There is a clear spacer under thebutton to allow for some growth. The "ooze" is normal healing ooze. The button site takes 2-3 months to heal, and more months to have an established stoma.

Here is the Bard about 2 months after surgery. The spacer has been removed. The Bard is nice becaus it sits flat to the skin, flatter than any other button on the market. However it has the disadvantage of not having a lock on it for the extention tube. The tube can fall right out or easily be pulled out.  I had to tape the tube in place in order to prevent messes. There is Polyskin around 3 sides of the button to protect the skin from frequent taping. The Polyskin allows the skin to breathe and will come of by itself after about one week. Note: I did cloth diapers, so please look only at the pink diaper pin for the purposes of securing tubes. The white and blue ones are for the diaper itself.

Here is the extension tube attached and taped into place for night time. There is also gauze around the button to prevent leaking at night. I made the mistake of using too much gauze and not allowing the skin to breathe. This led to granulation tissue. I have put a tab of tape around the tubing and used a diaper pin to secure it to her cloth diaper. This is so if she pulls on the tubing, it will not pull on her button and hurt her.

Do you see that gauze? Very very bad!! Find out why gauze is evil and why we don't use it anymore.

The next photo shows an AMT MiniOne button, but it's so similar to the Bard. She got a defective one of these and so the tube was not staying locked into the button as it should have been. Bard buttons don't lock their tubes at all even when they are not defective, so I thought this photo would be best put here. I took a piece of yarn and basically tied it under one side of the button and then up and over the tube. It worked great!

Securing the AMT Mini Button

This is the AMT Mini Button. I really, really liked this button! Very well made, no leak problems like the Mic-key.

Here is the AMT button with the tubing attached. It locks into place so no worries about it coming undone during feedings! The Polyskin is there to hold the gauze into place. I no longer use gauze and you'll see why if you go to the page on granulation tissue. Below is how to secure it without using gauze. Pardon the pureed carrots in her tube!

I developed this method of taping after Nitara's button was pulled fully out after I accidentally sat on her tube while I was hooking her up for a night time feed. I use a full square of tegaderm and then a 1/2 square of it. As the tegaderm peels off on its own, I rotate the button and tape in a fresh spot so her skin does not get distressed from being taped constantly. For the button stabilizing, I put the 1/2 square of tegaderm down very close to the stoma. Then I take a strip of silky tape and twist it in the middle to look like a bow tie with both sticky sides down. I stick one sticky side down, then wrap the twisted part of the bow tie around the button, and then stick the other side down. It basically crosses over under the button to keep it very stable. Then I take another short strip and tape over the bow tie to keep it more secure. That tape stays on until the tegaderm falls off on its own. After securing the button, I put the extension tube on and figure out a good place for the tubing to be on her stomach so that the tube won't come undone. Then I put the full square of tegaderm down. I put the tube over the tegaderm and then tape a strip of silky tape over the tube, making sure that all of the silky tape is stuck to the tegaderm, not her skin. I create a small tab on one end of the silky tape so I can peel it up, release the tube, and "store" it on the tegaderm until she needs to be fed again. One tape will last about 3-4 feedings. Finally, I put some tape on the extension tube to create a tab, and then pin that to her undies. The waistband of the shorts helps to hold it down even more. The only bad thing about the pin/tape is that I have to undo it for her before she goes to the bathroom. She is pretty good about asking for my help. The pin/tape is probably not 100% necessary but right now she's sore and the more stable I can make it, the better.

The stoma itself is exposed to air for healing.  Very important.

Securing the AMT Mini-One Button

I thought the AMT Mini was nice but I love, love the AMT MiniOne. It is a non balloon version of the AMT mini. The downside is it has to be changed at the doctor's office. The upsides are that it's very very small, there is very little risk of it coming out unintentionally, and it will last a very long time (up to 18 months).

Here is the button and I'm also showing off her pretty stoma. No more granulation tissue!

I use the classic tab-taped-to-underwear most of the time, especially at night. It's the most secure method by far. However she's now potty trained and it's very important for her to go to the bathroom by herself. The AMT MinoOne does not have a ballon water valve to use to secure it like the AMT Mini does. I had to come up with something else. One method (not pictured) is to run the tube up and out the shirt collar. Pin at the shoulder and the tube goes right into the backpack. She does not like that method very much because she says the tube bothers her neck.  But some kids are fine with it.

Pinning to the front of her shirt is no good. The shirt gets kinda pulled funny, and if the shirt gets caught on something like when she's going down the slide on her tummy, well the button might get pulled out along with the shirt coming off. So the next thing I came up with was to secure the pin to her necklace.

How to Avoid Feeding the Bed

This will happen to you. No matter how good you are with trying to prevent it, it will happen. Just accept it. You will go in to wake your child in the morning and the smell of formula will hit you first. Then you will see your child lying in a pool of rotten formula, or better yet, formula mixed with stomach contents (a.k.a. tube vomit). You will swear that it will be the last time that ever happens. Until the next time it happens.

Tape is your friend! My favorite tape is cloth athletic tape. It's strong and cheap and you can buy it most anywhere. You have to start taping at the clear part of the pump tubing, around and around over the attachment parts, and keep going until you have covered the whole extension tube part and are up over the clear part of that tubing. It will be about three inches of wrapped around tape. Create a little tab at the end of your taping so you can find the end and unwind it the next morning. After I started being liberal with the athletic tape I did not have any more feed the bed incidents. Until I got a faulty batch of extension tubes and the parts leaked where the tubes connect. It was very ugly because it happened at a hotel and they were not happy about it. See, it just happens no matter what. Accept it and live with grace.

That leads to lesson two: waterproof your child's mattress. I don't just mean cover it with a fitted waterproof sheet. That is very important. I should have bothered to take such a mattress protector to the hotel but I didn't and I paid for it. Literally. So after you get the waterproof protector on, take an old thick cotton quilt and put that on the bed. Over that you can put your fitted sheet that the child sleeps on. The theory behind the quilt is that if the tube leaks, it will soak into the quilt and be contained. If you don't do that, it will just reach a point where your child is either sleeping in a puddle of formula, or the formula will start to flow off the bed and onto the floor if your child sleeps near the edge of the bed.

How to Give a Tube - Fed, Mobile Child Their Freedom

We started out with an infant who was tube fed and that was hard enough. It was like she had an extra appendage on her. I had to wear her pump in a fanny pack while carrying her in the Snugli or frame backpack. I found creative ways to hang her pump on the high chair or stroller handle. It was a lot of trouble but we got by. Enter the crawling stage. I was thankful that she had the energy to learn to crawl thanks to her tube, but it presented a whole 'nother ballgame. I survived that stage by following her around with the pump and getting nothing else done at all. Some parents used those big corrals but Nitara would not have gone for that at all. One very creative mom on a tube-feeding board bought a toddler safety harness for her son. She attached the pump to the leash of the harness and he was able to drag it all over the house. She left some slack in his tube so that the leash was shorter and that's what was getting pulled on. I wish I had thought of that. Another idea that did not work for us, because we had a lot of carpet at the time and Nitara was not strong enough, is to attach the pump to a baby walker.

Then we got to the walking stage. By then I had petitioned my insurance company for a truly portable kid-friendly pump and she was able to wear that on her back at 14 months of age for short periods of time. It was too heavy to wear all the time but at least the light was starting to shine at the end of the tunnel. At about age 2 she started to understand that she could put her pump in a doll stroller or toy shopping cart and push it around when she got tired of wearing it.

Now she's 3.5 and wants her freedom. Our big issue has been that she is attached to a feeding pump all night long. In the morning she wakes up very very early before her feeding is done and needs to go to the bathroom. She currently does not need to use her pump during the day unless she's sick, so I charge it during the day and at night it runs off battery. I put her whole night feed in a large backpack with a huge ice pack (we live in the desert and it gets warm in the summer) and I set it to go. The whole thing goes into a doll stroller next to her bed. I pin her tube to her necklace or shirt. In the morning I can hear her wake up and roll the stroller to the bathroom and go, and then she rolls it to the livingroom and plays with her sister until we wake up at 7. (Yeah I told you they wake up early!)

There are a several pumps that are made for kids. They are small and portable and if you don't have one yet, please beg, plead, and threaten your insurance provider and/or home health company until you get one. The key to having a happy tube-fed kid is to have tube-feeding be secondary to the rest of their lives. The Zevex Enteralite, Zevex Infinity, and Kangaroo Joey are in my experience the three best kid pumps out there. You also need to ask for a kid-sized backpack for the pump. The companies don't always automatically send them so you have to make sure you ask.