Have you ever noticed that some of God’s greatest gifts come in oddly wrapped packages? No one could have told me five years ago that a child that was given no hope of survival could end up being full of the greatest gifts and lessons we have had in our lives.
Lexie was fed by IV’s and tubes for the first few weeks and slowly grew a bit bigger and stronger. We taught her how to nurse and she steadily improved. Her heart issues resolved, one with a medication to close the valve and the other issues miraculously resolved themselves. Along with her growth, her head grew too. We held our breath every day to see how much her head had grown, trying to decide if she would need surgery to place a shunt in her brain to drain the fluid. Lexie steadily improved and we were able to take her home 4 weeks later, although her hydrocephalus hadn’t resolved.
During this time, Lexie’s system reacted badly to the multiple surgeries. She went through many tests as the doctors were trying to determine what was going wrong. She was in the ICU many times in severe pain which we later determined was due to morphine not working for her - she went through 3 brain surgeries without pain medication. It was so heart wrenching to watch such a small baby go through so much and not be able to do anything about it. At one point, Lexie was having difficulty breathing and keeping her oxygen levels up. Pat and I were trying to make the difficult decision of whether we would put her on a ventilator or not if it came to that. She had been through so much and was in so much pain. You could not even touch her without her screaming. Would it be better to just let her go?
Lexie’s favorite song is very fitting for her. It is called "Life Song" by Casting Crowns. And, its truly the message I would like to leave you with: Every Life Was Created for a Purpose.......... Every Life Has a Song to Sing.
(You can watch the video now!)
Here is a little video of Lexie at 4 years old singing her "Life Song". She's a little shy and quiet at the beginning, but keep watching, she cuts loose at the end! Update: Lexie is now six years old and has been eating on her own for a year. We pinch ourselves daily - what a blessing!