Lizzie's Journey

Diapering a Vesicostomy

A lot of people have asked me how we keep Lizzie dry while she has her vesicostomy. Too be honest, there are a lot of times that we don't, but we keep on trying. :) Keeping Lizzie dry is sometimes a challenge. Sometimes we win, and sometimes not so much. Here are some of the things that we have learned along the way.

Lizzie got her vesicostomy when she was 11 months old. We had no idea what to expect at first, and it was pretty overwhelming. She stayed wet all.the.time. She was nursing constantly, and we were going through tons and tons of diapers. I was losing my mind, and we needed a better solution, and quick. So I busted out the old sewing machine and started a game of trial and error. What I came up with was kind of like a diaper belt if you can imagine such a thing. It basically consisted of a cloth diaper rectangle in the front (the buckle if you will) that was held in place by using velcro to attach it to an ace bandage. So the bandage goes around the back, and velcros to the cloth on each side. Here is a link to an old blog post that shows you how I made them, and has some pictures to explain what I'm talking about.

This first solution worked great for a while. It was excellent to use while she was small, and not as mobile. It also worked well with breastfeeding because I knew when and how much she was taking in, so I could kind of judge after a while how much would come out. The front cloth was easy to change, and easy to wash so it was pretty successful for a few months. I met recomend tyring it for an infant or small toddler.

The problem was taht after a while she got pretty mobile, and once she started drinking on her own, there was a lot more urine output. She was soaking through the inserts and leaking quite often. We fumbled around for a bit, and then turned to pull-ups. We chose a size larger than she would normally wear and then we took a small (size 1) diaper and turned it inside out and tucked it in the front of the pull-up. This way we could easily change the small diaper insert without having to change the pull-up as well. This would also work with a cloth insert, but we chose to use disposables at this time because of chronic yeast infections. It is a little bulky, but we avoid stretchy material on clothing, and use a onsie to kind of hold things in place.

This has been pretty much what we have stuck with. As she gets taller, this becomes a little less ideal, because we need larger pull-ups, and they aren't tight enough for her legs which have thinned out as she has grown. We do have some issues with the leg holes being a little too big to keep everything in sometimes, but for the most part it is manageable. For us, this system keeps her the driest overall, and we are able to use the same pull-up for a number of changes if we keep the little diaper changed often.

The most helpful thing that we have learned so far is that onesies are a necessity. They keep everything in place, and prevent little hands from pulling out inserts. It also helps keep little hands from trying to put things IN the stoma too! We have found that for us personally, pants are not a good option. They tend to irritate her abdomen, and sometimes actually cause the insert diaper to pop out or push down. We continue to try periodically, but it never turns out well, and for the most part we avoid anything that is tight around the middle. Until recently this has been pretty easy to accomplish, but I am finding again that the older she gets the more difficult it becomes. It's really hard to find one piece outfits in size 3T, although I have found 3T onesies online, which is very helpful. We can do dresses as long as we have the onsie to hold everything in. I was also excited to find onsie extenders, which is just material with snaps on either side to extend the bottom of the onsie and make them longer.

Something else that we found useful for a while (although not so much lately) was that she sometimes stayed drier at night if we put a Goodnites or Large Sleep diaper over her regular pull-up and insert. It's kind of a trial and error type thing, and you just have to keep working at it to find what fits best with your child.

Another helpful hint for night-time is to layer your bed sheets on the crib. Lizzie is almost always wet through the night. Most nights she will sleep through, but many nights she wakes up wet and needs to be changed. I find it helpful to have all my "supplies" handy, new PJ's, wipes and diapers, so that I can quickly change her without turning on the lights. As for the sheets, I have them layered with a sheet, then one of the crib mattress covers and then another sheet. When she is wet in the night I am able to remove the top sheet and mattress cover, and still have a dry sheet underneath. I can even do most of it one handed now :) The things that we are proud of! LOL! But really, the more quickly I can get her dry and back in bed, the more quickly we can both get back to sleep. If she get good and woken up, it can make for a really long night.

So that's about it. I wish I had better answers, but we get by pretty well. We change her often and always carry extra clothes. It's not a perfect system but it works ok for us, and we continue to learn as we go. Hope maybe this is helpful to someone, if anyone has any suggestions...I'm all ears! :)

Labels: Diapering vesicostomy, special needs diapering, Vesicostomy, Vesicsotomy care