In any surgeries there can be complications and unfortunately during Sadie's Glen Procedure, a small nerve was damaged that maintains her diaphragm placement. With the damage, her right diaphragm moved up and was getting dangerously close to her lungs. The surgeons wanted to placate her diaphragm before it caused any respiratory issues so she was scheduled for surgery on August 26th. Sadie's doctors waited to see if it would go down on its own, but after several weeks they felt they should perform the procedure to be safe. Although it is not as complicated as open heart surgery, it is still surgery on a baby.
We had literally just sat down to meet Dr. Herrington, the doctor who would perform this surgery, when an earthquake struck Los Angeles.
As I heard people yelling and running around we realized what was happening and grabbed the girls out of their strollers and headed for the door jamb. I had never been in an earthquake before and I was really scared. I can't believe the earth can shake like that. Dr. Herrington ran down to the OR to make sure her surgeries were OK and we stood there staring at each other in disbelief. It was over just as soon as it had started- but our meeting with Dr. Herrington was just beginning as was our shock that Sadie needed another surgery.
The next few weeks were very tumultuous as we were scheduled and canceled 3 times for Sadie's surgery. The cancellations were due to a cold Sadie had that she just couldn't shake. Finally, on September 30th, Sadie had her surgery. The surgery went well, but ironically following the least complicated surgery she had had yet, she suffered the most complications. With backed up bowels and a huge, hard distended belly she was put on complete intestinal rest which included no food, no water and no pain medicine. Despite Sadie's high pain threshold this was very difficult for her and we could see it in her eyes. Her usually sunny disposition had been replaced by a moaning, distant little girl suffering through her pain. An angiotube in her nose suctioned stomach acid fluid out and there were chest tubes draining out even more fluid. She was extremely uncomfortable and spent hours moaning and crying in her bed. Even during the removal of her chest tubes, no pain medication could be given. Our hearts broke again and again watching her in such pain.
Thankfully, things began to move again for Sadie and she was on the road to recovery. On October 4th, we all went home!
In times like this, one's faith is deeply tested. Despite a heart breaking prognosis from the first specialist we saw when I was pregnant with Sadie, my inner voice kept reassuring me that Sadie would be fine and that the only medical problems she had were with her heart. My husband stood fast in his beliefs as well and felt confident that his little girl was going to make it.
We were right.
Sadie will require one additional surgery that will most likely happen later this year. It is called a FONTAN and this will complete her path to functioning with a single ventricle heart. Her long term prognosis is extremely positive. Sadie is now 2 years old, 30 lbs and healthy. She is full of energy and promise. Her light shines so brightly that everyone who meets her immediately falls in love with her beautiful spirit and huge smile. Every day when we see Sadie playing with her big sister, laughing, smiling, running and climbing we realize how truly blessed we are and how grateful we are to Dr. Starnes and the Children's Hospital. Sadie is a precious gift from God and not a single day goes by that we take for granted.
She is so strong and has already overcome many hurdles. As we begin to get the full picture of the complexities of her heart, we are more and more amazed at the strength of this little girl as well as the miracles that have brought her along this far. She has fought hard to be here with us and she has already made the world a better place.