The biggest difference in Alexis' surgery being planned vs. someone who is forced to have it via emergency surgery is obviously, we were able to prepare her. When we first found out that surgery was no longer an option, but a necessity, I immediately tried to think of how I was going to break the news to her. She is 5, and is wise beyond her years, but this is a big deal, and there are many adults I know who would have a horrible time accepting this. I started googling pictures. Bad idea. I then tried to explain it verbally, and she cried. So I went to one of the many IBD/Ostomy facebook fan pages I subscribed to on facebook, and many people told me about these Ostomy Dolls.
Let me tell you, the doll has made such a difference!
There were 2 types of dolls I found (www.shadowbuddies.org) was a simple cloth doll with a small ostomy. I decided not to order that one due to the fact the ostomy nurses would be presenting her one at the hospital! The second one I came across was from (www.stomawise.co.uk/lifestyle/the-gastronauts), and instead of it being a simple cloth doll, it was a very detailed PUPPET! That alone was awesome, because I knew Alexis could interact with it, and the fact that it had a REAL working neonatal ostomy was a HUGE bonus. Once Alexis knew the puppet was coming, she watched for the UPS man everyday until it came.
Not only did the ladies from Stomawise send the doll, they also have sent me a GREAT book (http://www.amazon.com/Unwanted-Baggage-Comprehensive-Introduction-Surgical/dp/1456771558) which has helped me out tremendously. I no longer feel like I am in the dark and have to be scared about the transition...They have also sent Alexis coloring books and have checked up on her several times! She has such a following already :)
So, besides the dolls, I have also been able to get in contact with the major ostomy suppliers and they have sent Alexis a ton of samples. It was nice being able to see exactly what they looked like/felt like before the surgery so Alexis could have an idea of what to REALLY expect. Also a must have because they all seem to be made differently (shape, size, texture) so its nice to know what you will get before you go and waste $$ on them. They have also sent me random creams and barriers, but I still am unsure of what all we need (which sucks because I want to buy everything and have it BEFOREhand!!)
Another must have I read was a waterproof mattress cover! Because, lets face it..leaks are gonna happen...and they will probably happen alot in the beginning. I wouldnt skimp on this, as you know whats coming out of the bag.. and a mattress protector is cheaper to replace than a new set of mattresses! (http://www.amazon.com/SafeRest-Hypoallergenic-Waterproof-Mattress-Protector/dp/B003PWS9AI/ref=sr_1_1?ie=UTF8&qid=1341838052&sr=8-1&keywords=waterproof+mattress+cover+twin --here is the one I purchased! Great reviews all over the web, as well as several recommendations from several other ostomates)
Aside from all of the physical things that have prepared Alexis and I... talking about it has become a little easier, and shes to the point now where she willingly shares the information with other people! She asks me everyday "How many more days until my appointment, Mommy?" and then tells me she can't wait to have her belly fixed.
..and even tho I still am scared to death about the operation, I can't either
(P.S- My goal for tomorrow is to be a little more on the organized side..I still am trying to get used to blogging again! Bear with me!)