To answer these questions, here is a little glimpse of what I look at each and every day:
There are moments of sheer panic for me as I learn to live with a baby that has medical issues. At times I feel on edge as I watch for any signs that could begin to tell us that his heart is not doing well. But, day after day he continues to not only live his life, but to absolutely thrive doing it. What a privilege it has been to watch him grow stronger and to watch as his heart continues to be stable. Though I would not have chosen this life for him, I have been amazed as I get to see miracles happen on his behalf constantly. Prayers being answered, results being normal, and tests showing stabilazaiton. Since so much has happened since our last blog, here are some of the answered prayers:
1. Long QT genetic test (would require him to have a pacemaker immediately) came back normal!!
2. Chromosome Panel test (any other genetic issues) came back normal. This means that his heart is an isolated issue rather than caused by another genetic disorder.
3. His heart rate is consistently in the 130 range for beats per minute. While I was pregnant he was always in the 80 beats per minute as well as for the first 7 days of his life. It wasn’t until Day 8 of his life that he began to use an accessory pathway to conduct through. Since then we have ran 24 hour holter periods on him and they have hardly seen a glimpse of any heart rate lower that 130.
4. He meets no other standard for a pacemaker at this point. This is the same baby that had a pacemaker surgery scheduled for September 13th, 2011, and was canceled 3 hours after it was suppose to start.
I could continue on and on about how God has been faithful in our lives. From our smallest of worries to our greatest fears, God has shown himself incredibly powerful! We know that so many people around of us have stood faithfully in prayer for our little boy and for that we are forever grateful. Never in my life would I have imagined my life to be so richly blessed with the deepest of love possible. For the days that I feel at my lowest I now have a perfect physical reminder of just how far God has taken us. It’s not just the body of a little boy, it’s the giggle on his face that tells me that God is not done yet… this is only the beginning of something incredible!