The Ostomy

In the other post I said that we donated the left over ostomy supplies that we had to the hospital. I don't know if I have really ever explained what we went through with the ostomy. Plus, if anyone is going through a similar experience and they happen to search on the Internet for information perhaps they will see this entry and know that others have been through it too.
It was such a struggle at first, and I think that is why it was hard for us to give away those supplies and really admit that the ostomy chapter had ended.
Samuel got his ostomy two days after he was born. The stoma for the ostomy was about 2 inches to the right of Samuel's belly button. (Well, it was on his left side, but if you were looking at him it would be to your right.) There are so many different options for ostomy supplies....you can have multiple pieces, you have to cut them to fit the stoma, there are several options for skin barriers, etc. The difficulty is that a baby's skin is so delicate so the adhesive needs to be gentle, but strong. Plus, a baby can't tell you if it isn't stuck on right.
When we were trying to find the system that would work best for Samuel we were going through several bags a day. Each bag should stay on for about 3 days. Some insurance companies figure that if a bag is suppose to last 3 days that the patient can only have 11 bags in one month. Well, when you are trying to identify a good system you could go through 11 bags in one day! The price of the bags vary greatly, starting out around $10 each and then you have the cost of the skin barriers. It can get very expensive quickly. Plus, when you are prepping the bag is it so easy to ruin it. You have to cut the stoma hole without cutting the bag which sounds so much easier than it actually is. We were so fortunate that we had a friend that had gone through this with her baby and she had extra supplies, plus we had great insurance that would let us order whatever was needed. Also, one of the ostomy supply companies had a rep contact us. The rep sent us some samples of different supplies to try.
Also, each time the bag comes off it makes the skin get more raw....I mean, just imagine putting a strong bandage on your belly riping it off, cleaning the area, putting on a new bandage, ripping it off, cleaning, and repeating it several times. Now imagine that on a little baby's skin. Plus the stoma is where it is so the ostomy barrier/bag will have to go in the same place each time with very little variation. This is what was happening when we finally got to bring Samuel home from the NICU. We were up at least every hour with him changing his ostomy bag. David took it on as a personal challenge and after a couple of weeks we had a system that worked great on Samuel, but getting to that point was hard.
Some people think it sounds like it would be worth it to not have to change any diapers so I should clarify. Samuel still had to wear a diaper because only the poop would go into the ostomy, the pee still went in to the diaper. Plus, to empty the ostomy bag we would squeeze the poop out of the little opening (picture a large ketchup packet that is stuck to Samuel's belly) into a diaper and then you would have to stick your wipe into the bag to get out the left overs, of course along with the wipe you would have to stick you finger....sometimes that was pretty nasty.
Right as we were discharged from the NICU we discovered that there were 2 other babies that were struggling with keeping their ostomy bags on. It is so common to struggle at the beginning because every baby is different and they are growing so quickly. We remember feeling alone and nervous that it we wouldn't ever find anything that would work. But we did, it got better. We found different clothes that would help to keep the ostomy bag in place as opposed to knock it off. I think it would have been nice to have a little support group of parents that were going through or had been through similar struggles. David and I would be happy to help any other family going through this, but it really isn't that common. So by donating those supplies we hope that other families are helped.