Wednesday, June 16, 2010

Ella's Story - Part 3

Our second surgery happened on August 27th when Ella was 9 months old. This was to repair her palate and insert ear tubes. Since the lip had been repaired the gap in the palate was much smaller, but our surgeon was still unsure if it was going to be too far of a stretch. Even though it was our second surgery, we still went through the same uncertainty of what to expect. We went into surgery at 7:30 a.m. and since the cleft was so much wider and longer than they had expected, it took a lot longer than the first procedure. Dr. Shehadi was able to completely close the palate, which was great news. Once again we spent 1 night in the hospital however, we should have stayed longer.

The recovery process didn't go quite as well as the first surgery. Ella was not eating and very sad and cranky after the surgery. We struggled to get her to eat anything. We were told that in order to leave she had to drink a certain amount of liquid. Since she was so unhappy she didn’t meet the requirements. Joe thought that since she came close enough, we could take her home and figure it out from there. So, we packed up and came home. The moment we walked in the door she was a completely different child. She was happy and excited to be home and instantly got into her bouncy horse and went crazy.

Maybe it was the fact that the house was filled with family that she loves, but as soon as they all left the atmosphere changed again. She returned to her unhappy phase and refused to cooperate. We were once again struggling with no eating, no drinking and no sleeping. I was starting to panic that she was going to become dehydrated; wet diapers were few and far between. Since Ella refused to sleep through the night, my mom thought that I needed a break and came to help out.

Almost an entire week and a half after surgery was pretty painful for all involved. It was frustrating but I most of all I felt so awful for Ella and the pain she must have been going through because normally she is the toughest kid I know. We were beginning to worry that the experience may change her personality forever. Then, finally the day before I had to go back to work she turned over a new leaf and returned to her normal, happy and smiling self. We were so grateful to have her back and even more appreciative for just how special she is.

At the follow up appointment with our surgeon I understood why Ella might have been in so much pain during recovery. Even though Dr. Shehadi initially closed the palate, the gap was just too far and stretched to thin. Sadly, part of the palate tore open after the repair and a hole remains there today. I can’t imagine how painful that must have been for Ella at the time. I now completely understand her sour mood. Poor girl!

We thought we would need the palate repaired immediately in order to encourage normal speech development and prevent other issues however, we have been back to our surgeon a few times and at this time he thinks it’s OK to wait. We trust him so we will wait until then. We go back to Cleft Clinic in October where we will meet with the team and learn what our next plans of action are. As usual, the waiting game continues.

1 comment:

  1. The waiting game must be so frustrating and draining emotionally for you as a mama. I can imagine wanting to have one super surgery where everything is fixed in one fell swoop or the other extreme of not wanting any surgeries at all because of the worry, stress and pain involved. My heart and prayers go out to you and Joe as you navigate your way through this long process. I have been a supporter of Smiletrain for many years which for a donation of just $250, pays the entire cost of a surgery by doctor volunteers who travel the world saving the social lives of little children who may well be outcast in their own society because of a simple blip in their development in the womb. It is so heartwarming to see all the progress Ella has made and how you and Joe have helped her become such a strong, outgoing little person!