December 1, 2011

I had always intended on writing after we returned home with Jackson. After all his journey is far from over. I knew that I would love him, but I don’t think I could have prepared myself for the amount of emotions that his little body brings to my life every day. That is exactly the reason that I haven’t found the time to sit down and blog about our journey after finally bringing him home to Austin. I had no idea just how different my life would be with Jackson in it. I spent much of my time before he was born wondering if he would make it and if he did how his life would be. Would he be in pain? Would his body be tired all the time? Would he be in and out of the hospital?

To answer these questions, here is a little glimpse of what I look at each and every day:

Almost every picture I take of Jackson he is smiling. It’s not just a coincidence. He is the happiest and sweetest baby you could ever hope for. He is growing like a weed and much to the surprise of our pediatrician he is in the 95^th percentile for both length and weight. When he smiles at me, my heart literally skips a beat. His face lights up when you talk to him about how handsome he is and he absolutely loves his sister given nickname “Superman Baby”.

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 13^th, 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!