So, my daughter's skin expansion went fairly well. The expanders themselves did not appear to hurt her or really get too much in her way. Kids have an unbelievable ability to adapt to their circumstances! We went in for weekly saline injections to fill her "bubbles." That was by far the worst part. She began to dread these visits to the surgeon's office and cried, "No more pokies!" Wednesdays became very difficult. We gave S a present after each fill, usually something from Target like a game or shopkins toy. It helped but the dread was still a factor.
Her surgeon put anywhere from 40-60ccs in each "bubble" at each visit. It was hard to watch:( It was also hard to keep a dancer off her feet. Somehow, one of her bubbles had a leak. The surgeon never did figure out where it was coming from. She said it could have been there right away and we just noticed it more as it grew. We will never really know for sure. Unfortunately, because of this leak we did not know whether or not her second surgery would be successful or if S would come out of surgery with another expander for a few more months.
When August came, her surgeon said she would be ready for the next surgery at the end of August so we got it on the schedule but let them know that we were very flexible and if they needed us to take a cancellation we could do it. Well, the next afternoon at 1pm I received a call saying that they would like to move us to the next day! It was a scary decision to make on short notice but after discussing it with my husband and finding out that her first anesthesiologist was hand picking the anesthesiologist for the next surgery we were ready. Our first anesthesiologist was very aware of the MTHFR mutation that S has so we felt like we were in good hands. She had come out of anesthesia without difficulty the first time so we wanted the same thing for the second surgery.
We are so lucky to live in such close proximity to an amazing children's hospital. It makes such a difference. The next morning we were as ready as we could be given short notice. I figured that mentally it was better to just get it overwith. There wasnt going to be a good time for this surgery.
The surgery took 3 hours, which is like 3 months when it is your precious baby! We placed bets on whether she was going to come out with the entire mole and expanders removed or just the partial mole and a new expander. Fortunately I won that bet!! The surgeon said she had just the right amount of skin to work with. Yay!!!! She tolerated the surgery well and when I got to see her she was asking for goldfish crackers so I knew she was okay. She was wrapped like a burrito and had two drains coming out of her little body to drain any fluid build up. This was a major surgery and her entire back was pretty much new skin that had to readhere to her back. Her incision was taped so we didnt get to see the scar fully for a couple of weeks.
When we first got S home, it was clear that this surgery was much more difficult on her than the placement of the expanders was. She was in more pain but still was able to rely on advil and tylenol. We were trying to avoid using the narcotics they gave us, but would have most definitely given them to her if the OTC pain reliever hadn't worked. She was not up and dancing for several days. The fluid built up and she had a hematoma. It didnt look right so we called the doctor on call. He suggested stripping the lines (a technique where you hold one end of the tube while you use your other fingers to pull along the tube to loosen anything in it and get the flow started again). Luckily the technique worked like a charm and she put out about 90ccs of fluid in a matter of an hour. She had been putting out less than 10 and her back was so puffy prior to that. I think S felt a lot better with the fluid drained. She ended up missing 3 weeks of school. We couldn't send her with those drains for fear of infection or accidentally getting the drains pulled out by another preschooler. OUCH!! Her class made very sweet Get Well pictures for her. Her teacher offered to help. Everyone was so sweet.
Here is a photo from one month post op. You can see a small scar at the bottom right. That is from one of her drains. She has a similar scar on the other side:
Here is a photo from 5 months post op. It definitely looks less raw:
For anyone who is researching nevus removal and has any questions at all, please leave a comment. I would be happy to answer any questions about how we decided to do the removal and how the process went. It certainly is a difficult decision. I worried that I would miss our daughter's beauty mark, and I did - for about 10 minutes. I quickly realized we had done the right thing for us and for our daughter though. We have no regrets!