"She has come a long way..."

Jeff and I are sitting in the post-operation area with Gracelyn right now. She is doing very well. She woke up for a bit to eat and once we wrapped her up and gave her her binki she went right back to sleep. I am overwhelmed with gratitude to say the least. This place keeps you on such an emotional roller coaster. I was worried about throwing up the whole way down because I was so nervous. Right now I'm having a hard time keeping in the tears in I am so happy.


Gracelyn was scheduled to be in the cath lab for four hours and to stay overnight. An hour and a half into it we were called to come see her. We knew that if they were going to work on her they wouldn't have been done that fast. We expected to hear surgery would be soon and that is exactly what they told us. The papers have been submitted to get her on the schedule and it is expected to be in the next four weeks. We have tried to stay optimistic while realizing what reality actually is. We have been told that if her right ventricle was going to change in size we wouldn't begin to see improvement until at least six months. The conversation we had with the doctor after today's cath was a bit different from what it was when she was two days old. At two days the doctor could hardly look us in the eyes when he told us we had a long hard road ahead. Today as he showed us inside her little chest I couldn't help but interrupt him and question if it was just me or if there was a big improvement in the size of her right ventricle. He smiled and said, "We can definitely see a difference, she has come along way from the first time we saw her." We talked for a bit. He explained that she has had muscle grow around the ends of both her stent and shunt and the risk of trying to fix it to buy her a little more time wasn't worth it when we know she needs the Glenn surgery either way. We aren't excited for surgery, but are anxious to get it over with and get her back to healing again. If Gracelyn's heart continues to improve we have a chance of avoiding her third surgery, the fontan. The glenn shunt is actually made of her native tissue and would grow with her as she becomes an adult, so there would be nothing to remove and possibly be no other heart surgeries. During the next surgery they will remove her BT and stent.


Grandpa, Grandma, Camee and Mr. C were upstairs waiting for us. Unlike the last cath, where we sat down stairs not wanting to go up and break the bad news to our family, I could hardly wait to get to them this time to tell them of her improvement.


We are so grateful to her doctors. Gracelyn was a "pioneer" in what was done with her stent. That was the first time that the doctors have done what they did to her. This stent is what probably provided increased flow to her RV and gave it reason to grow. Before leaving the doctor, I asked him one last time about her future (knowing the answer to be "only time would tell" of course) and he responded, "Just live for today, that is what you need to do no matter who you are. You never know what life can bring."


I guess this is the point where we say THANK YOU! People are always asking what they can do to help us and we always respond that all we need are prayers. Today it became evident that all those that constantly remind us that they are praying for her REALLY are praying for her. So, THANK YOU to those that continue to pray for our beautiful baby and family. Prayers are all that we have to offer to help our girl improve. During the last LDS conference one of the shows in between sessions showed a mom of a sick child. At one point during her interview she said, "I had to decide between faith or fear, they can't exist together." That short sentence changed me. She was right. How could I say that I trusted Heavenly Father and have so much fear at the same time?


Since the doctors didn't do too much we will actually be going home tonight. We have a few more hours for her to be monitored and we will be heading home! YEAH! (and yeah if you made it through that long post :) )