When I was 20 weeks pregnant with Lily Grace, we found out that she had significant cardiac defects. I still remember the look on my doctor's face when he said "we'll just take this one day at a time". When she was born in April of 2005 things looked even worse than we had thought. Along with the cardiac issues she had numerous other problems. She had 5 surgical procedures before she was ever discharged from the NICU. At three months old, she finally made it home from the hospital with more equipment that I have ever seen with a baby. She was completely tube fed, she had a central line placed that we used to give her IV antibiotics and she was on a monitor. Three weeks later she was back in the pediatric intensive care and two weeks after that, she was at Vanderbilt Hospital having open heart surgery.
I will never forget the Friday before her surgery. My mom and I had driven to Vanderbilt for Lily's pre-op work and we were told that the surgery to fix her heart might not be possible. According to the ultrasound done that day, her heart muscle had thickened to the point that it might prevent the surgery. We drove home with a mix of silence and tears. We were absolutely devastated. We prayed all weekend. We were not supposed to have Lily out in crowds but we took her to church on Sunday morning anyway. When we had prayer for her, the entire church was on the altar. On Monday morning when the doctor called out from the surgical suite, he told us that her heart was nothing like what the ultrasound had shown. The muscle was thinned and the procedure was done. Is anything to hard for God?
After that stay we had several other surgical procedures to remove her gallbladder, and fix various other problems with Lily. According to the doctors, nothing was quite right in her little body. I praise God that she is fearfully and wonderfully made.
It has been quite a while now that we have been home and well. Unfortunately tonight we are packing for the hospital again. Lily Grace has congenital scoliosis and other issues with her spine. The most serious issue is that her spinal cord is tethered to her tail bone. Tomorrow, she will have surgery to release that tethering. It didn't sound very serious at first until I realized all that the procedure entailed.
The procedure aside, this time Lily Grace knows what is happening. She knows that she is going to the hospital and they are going to "ouchie" her. I always thought when she was a baby that it would be better if she were older. I was wrong. This is much worse.
Please pray that God in his infinite mercy would spare my baby from pain. Pray that the Great Physician would guide the hands of the surgeon that operates on my precious angel. I pray that she would be healed. I pray that this procedure goes better than we could even dream because we serve a God who is more than able.