When the truth hurts....

I suppose I stopped blogging for the last few weeks because it made it easier to forget about our world as it actually is. I guess if I ignore things I think they will go away. Well nothing has gone away, but they are certainly becoming easier to talk about.

A few weeks ago when Grace went in for surgery I mentioned some things that the doctor had shared with us as she was getting ready to enter the OR. I didn't have the courage to write them then. I haven't really shared them with too many people. They aren't things I necessarily want to talk about. It was awful timing, but when the surgeon came to talk with us before surgery he told us that Gracelyn would for sure need the next surgery. The Fontan. This is the surgery we were hoping to avoid. It basically re-routes her heart so that only half of it actually is working. After we handed her over I went to the car and cried for a while. It was harder to hear that news than it was to send her in for her surgery. I didn't know what to do or think. It was me that now had the broken heart. I really in my heart thought she was going to be okay after her Glenn surgery. I was convinced. I am coming to accept that she is a lot sicker that I ever thought she was. She really is like those OTHER babies. I have often thought and said she wasn't. Grace came out of surgery and all I could do was thank the Lord that she was okay. I would have been extremely ungrateful to feel otherwise, despite what her long term plan is. When we were ready to be discharged the surgeon came to speak with us. I questioned him then. I asked him to tell me that there was absolutely no way that her heart could grow. He told me it probably wouldn't, but anything could happen. It was the small piece of hope that I was going to survive on for the next few years. It was all I needed.

A week and a half later I was at a check up with our pediatrician. After he told me how great she looked he said, "So they have obligated her to the Fontan." I said, "No." He said, "Yes." Again I replied, "No." He pulled the report out and let me read it. He showed me where it read that they had over sewn her pulmonary artery, making it so that nothing was going to her right ventricle. If nothing is going there, there is nothing to help it increase in size. I was devastated. How did I not know? In my heart I knew it was right, but didn't want to get too upset until I heard it straight from the horses mouth. In the meantime I received the bill. I didn't know what one of the procedures listed was. I googled it. It told me what I didn't want to hear. Last Wednesday when we went down to Primary's for a check up we questioned them. It was the truth. Nothing short of a miracle will save my little lady's heart from becoming a single ventricle.

I have had some time now to deal with the news. Since them I have come across blogs where the parents were just praying that their baby would qualify for the Fontan. It would beat the alternative. We have a few years and I will pray until then, with everything I have, that there will be amazing advances in medicine. They are currently working on a tiny pump that would assist the heart of those that only have a single functioning ventricle. I hope that is in Gracelyn's time.

It is not the end of the world for Gracelyn. There are plenty of things much worse. I do realize this. It just wasn't the path I had placed her on. Yesterday we watched in the canyon as five young kids lost their lives in a split second. It helped put things into perspective. I know our time here is so precious. I know we should be so grateful for it, despite the challenges it has to offer. I know I am learning and growing, in ways I never thought I would have to. I am finding I am a lot stronger than I could have ever imagined I was. I know I have a lot more growing ahead. I am so grateful to Heavenly Father for giving us our little lady, for trusting us with her. We needed everything her sweet spirit has to offer in our lives. I feel so lucky to have been blessed with the beautiful children we have been given.