Lizzie's Journey

Tuesday, April 21, 2009

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

Saturday, April 5, 2008

Belly Bands/Belts for Babies!

So here we go….. Belly Bands/Belts, for kids with vesicostomies. When we got home after Lizzie’s vesicostomy surgery, we were a little overwhelmed to say the least. We had trouble diapering her at the hospital with the help of the nurses, what in the world were we going to do on our own? If we put a larger diaper on her, she leaked out the bottom. Doubling up on diapers was costing us a fortune, and our baby looked like the marshmallow girl. I couldn’t believe there was not a better solution out there, so I jumped on the old computer. Surely I could find some information on the internet…. guess again! Talk about frustrating! I knew who, when and what Brittney Spears had for breakfast, and how to enlarge my penis (if I had one), but there was no good information on how to care for, and diaper a vesicostomy. Luckily, necessity is the mother of invention, and I spent a lot of time trying to come up with a way to cut down on the number of diapers, and help in the way of convenience. So we came up with the Belly Band/Belt idea for Lizzie, and I decided that I needed to share what we have learned with you. If you have any questions or suggestions, we would love to hear them!

So here we go. These bands are easy to use, easy to wash and pretty easy to make. I am not a seamstress by any stretch of the imagination, so don’t laugh at my craftsmanship. On the same note, If I can make them, you can make them. Here are all the supplies that you need (fig1):

Sewing Machine/Thread

Cloth Diapers

Ace Bandage (I use 3” for day and 5” at night)

Velcro

Double Fold Bias Tape (I used 7/8”)

Ribbon (Optional – I used .375”)

Scissors

So let’s get started. Take one of your cloth diapers and make your cuts (fig2). In the pictures I used a 3” ace bandage, so I cut my diaper strips 6” each (they will be folded over for double absorption). Each diaper will make 3 belly bands at this size. After I had my strips, I trimmed 2.5” on each side of the diaper. You may want to lengthen or shorten this number depending on the size of your baby. I used 2.5” on this set, but I may try 3” on the next round and save these until she is a little bigger. Once you have your band cut, fold it in half and pin it. Cut your Bias Tape and ribbon (if using) the same length as your band (fig3). Next you begin sewing. I started by sewing the diaper at the top edge to help reduce fraying. Next I placed the bias tape over the edge, and sewed it onto the band. I then placed the ribbon across and sewed it in place (fig4).

Now we tackle Velcro. Turn the band over to the back and fold over the edge, and place the Velcro on top of the fold (fig6). You will sew the Velcro on both ends of the band (in the back). Be sure and use the softer side of the Velcro, it washes better and doesn’t stick to all of your laundry. You now have the front piece of your Belly Band complete!

For the stretchy part in the back, we used an ace bandage. During the day I use a 3” bandage and at night I made a bigger front section (5” when finished) and I use the 5” ace bandage. Trial and error may help you decide what size you need. We chose the ace bandages because they are stretchy, soft and can be washed. We simply cut them to the desired length (I used 10.5” for Lizzie) and then folded the edge over and sewed a piece of Velcro over the fold. Do this on both edges using the rough side of the Velcro (opposite of the front section). This becomes the back of your band (fig8).

Now you are ready for action! Just connect the Velcro of the two peices (fig9) on one side and place the bandage under baby. Then just connect the other side (fig 10, fig 11). Put a regular diaper on over it (fig12) and you are ready to go (fig13). Keep in mind these pictures show the band I just made. Washing them makes them much less stiff and a whole lot softer, and more moveable. When it is time to change her all we do is replace the front piece with a clean one, and attach it to the same bandage section. I have noticed that the bandages do tend to stretch out some after a few days of wear. You can make 6-7 bands out of each ace bandage, so you may have to replace them every other month or so. At least they are pretty inexpensive and very easy to make.

So far these have worked out great for us (almost a week now). They have cut down the frustration of leakage, and the cost of double diapers. They have held up well during many washes and wears and they seem to stay in place great. I love that it moves with her, so she can bend and play, but it still stays where it belongs. So far we have had no major leaks even during changes. It makes changing a dirty diaper so much easier because it stays in place to cover the vesicostomy so she is not leaking as I am changing her. I think it would have been very helpful when she was hooked to the IV and has constant heavy leakage.