Every night, I prayed for “Life, breath and joy” for Vivien. Our God is the Creator and Sustainer of life. Every breath is a gift, every heartbeat a miracle. The day of her birth finally came and she was welcomed with open arms. The elation of finally “making it” to the birth was quickly followed by the heaviness of expecting her death. The doctors were grave when it came to her prognosis, giving her only 2 to 4 weeks at best. On her second day of life, she was listless, working hard to breathe and dependent on the oxygen.
I truly thought the hope we had felt over the prior months had come to the point of only watching our girl die in front of us. The doctors encouraged us to bring her home on hospice care. The idea of bringing a sick newborn whom we expect to die home to four other active kids, all while being sleep deprived and emotionally strung out felt like hell on earth. But after nine days in the NICU, we were resigned to the fact that at least having her at home would give us and the kids a better opportunity to love her.
Four days after arriving home, Vivien had episodes were she would stop breathing. She would need to be stimulated before taking her next breath. The pauses got longer to the point we needed a bag-valve-mask to inflate her lungs. This led to our emergent transport to Seattle Children’s. What we thought would be an overnight visit ended up being a three-week hospital stay. As a side note, the physicians, nurses and staff at Children’s have consistently been amazing with Vivien. We sensed that they truly cared for her and, in spite of her diagnosis, really did hope along with us for better days ahead.
Those first couple months seem like a lifetime ago. Vivien continues to amaze the doctors. The staff admits they don’t see kids like her (with T-18) doing this well. Caring for Viv has been a greater joy than we expected (not to say it has always been easy). I value the small things in life more. We’re more willing to give thanks for all we’ve been given. Our kids constantly rally around Viv, celebrating every milestone.
Recently, I was reminded of what I had prayed for her, every night before bed – for “Life, Breath and Joy”. I really wanted her to have joy here on earth. I was so afraid to see her have a short life filled only with pain. Five days after bringing her home from open-heart surgery, she smiled for the first time. Joy! Several weeks ago, she laughed (VIDEO HERE!) for the first time while we were doing some physical therapy with her. We were elated!
As we come up to her first birthday, we celebrate God’s goodness in bringing her to us. We love being her parents and we see the joy she has brought us. We know there will be bumps ahead, but we are confident of the fact that she has been given us by God for a reason. She is truly beautiful (something I tell her all the time) and has shown us the beauty of life.
And to celebrate her life:
Four days after arriving home, Vivien had episodes were she would stop breathing. She would need to be stimulated before taking her next breath. The pauses got longer to the point we needed a bag-valve-mask to inflate her lungs. This led to our emergent transport to Seattle Children’s. What we thought would be an overnight visit ended up being a three-week hospital stay. As a side note, the physicians, nurses and staff at Children’s have consistently been amazing with Vivien. We sensed that they truly cared for her and, in spite of her diagnosis, really did hope along with us for better days ahead.
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| We think she's SUPER VIV! |
Recently, I was reminded of what I had prayed for her, every night before bed – for “Life, Breath and Joy”. I really wanted her to have joy here on earth. I was so afraid to see her have a short life filled only with pain. Five days after bringing her home from open-heart surgery, she smiled for the first time. Joy! Several weeks ago, she laughed (VIDEO HERE!) for the first time while we were doing some physical therapy with her. We were elated!
As we come up to her first birthday, we celebrate God’s goodness in bringing her to us. We love being her parents and we see the joy she has brought us. We know there will be bumps ahead, but we are confident of the fact that she has been given us by God for a reason. She is truly beautiful (something I tell her all the time) and has shown us the beauty of life.
YOU ARE INVITED!
We will post details soon but Sept 12, 2015 from 3:30-5:30 we will be hosting an open house for Vivien's first birthday! We want the world to know and to see what God has done. We know there are many of you that we haven't even met that have prayed for her and loved her and wished the best for her so anyone and all are welcome. Be looking for an invitation in the days ahead and mark your calendar. Thank you for your prayers and love for our little girl!
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