The story of Melisa
I was beginning to think Emma would never make her appearance. 5 days after my due date, June 5th, I was induced, and my sweet, seemingly perfect baby girl was born. Jason and I were the two happiest people you could find. The doctors gave her the all clear and the next day we were ready to go home. Mom went home to fix dinner, dad was back at their house, and Jason went to get our car and pull it around front. That is when a nurse came in and asked if she had a bowel movement. I didn’t realize that was even important. She said she didn’t feel comfortable with us leaving if she hadn’t, and she wanted a NICU doctor to take a look at her. I called Jason and mom and told him it would be a few more minutes. We waited in the room watching tv, and the doctor finally came in. When he reached up and turned the tv off I knew something was wrong with my baby. He told us that something was wrong, but he wasn’t sure what. There was something he had heard of called hirschsprungs disease, but that he wasn’t even qualified to diagnose it, much less treat it. They made arrangements for us to be airlifted to a bigger hospital. Those next few hours were the scariest of my life. Just the uncertainly of what was going to happen. It was finally decided to send us to Charlotte, because they were the only hospital that had any beds that could handle her situation. Funny part….mom called dad and told him to get back to the hospital because something was wrong. It should take about 40-45 minutes to get there….he was standing in my hospital room (after packing a bag for them) 15 minutes later. I hate to know how fast he drove!
So off to Charlotte we all went. The following day, when Emma was 3 days old, the doctors said they needed to take her to surgery. He was very confident that is was in fact Hirschsprungs disease, but the only way to know for sure was biopsy. He warned us that it was very possible that when she came back from surgery she would have a colostomy bag. All we wanted was our baby healthy, and here we were at 3 days old sending our baby to surgery to save her life. I knew we had the right surgeon when he told us he wanted to pray for her before they took her to surgery. They allowed us to walk with her to the OR. We were about 1/2 way there when she started having green bile come out of her nose and mouth. The nurses started screaming for everyone to get out the way and ran the rest of the way. We didn’t get to kiss her or anything before they took her back to surgery.
She did indeed have a colostomy bag when she came back from surgery, and I was actually ok with that. I had seen one before and was at peace with it. She got to come home from the hospital on fathers day, the best gift Jason could have gotten. The next couple of years were non stop trips to the hospital for entercolitis. We spent an average of 1 week in the hospital every 1-2 months. At about 5 months old she had her second major surgery to re-connect all her guts. No more colostomy bag for Emma!! I had this crazy thought that all was going to be over then. No one told me it continued forever. The enterocolitis continued to be an issue, and the diaper rashes that poor child had were unbelievable. She has scars still from some of the diaper rashes she had.
The doctors told me one problem she would have was that she would most likely be late to be potty trained. I was ok with that, but I didn’t realize just how late they were talking. By the middle of 1st grade she was still having daily accidents. After multiple tests were done they determined that she had no feeling at all in her rectum, so she didn’t know when she had to use the bathroom. So in April of 2014, she had another surgery to have the MACE. The tip of her appendix was pulled up as a stoma, and every night we put a catheter in, hook it up to an iv bag, and flush her out. All of that just to have a bowel movement and keep from having accidents all day long. At 10 years old, she still has to do all that just to do something that is just another part of life for most of us.
I often find myself asking why. Why my baby. What did I do wrong. I mean, its not fair that my sweet baby has to go through all this. But then I sit back and look at her. She is the strongest child I have ever seen. She never complains, lets it get her down, or is embarrassed by what she has or has to do. God gave us a very special little girl, and we are blessed to have her. She is my hero! I truly hate to think of what would have happened if that nurse had let us go home. I could be sitting here today telling you all a very different story.