A year ago today we found out Luelle has spina bifida. It was an intensely emotional, scary, and overwhelming day. Nothing could have prepared us for that. Now as I think back, I am amazed at the hope and blessings we experienced that day that we could hardly see amidst the fear. Now I see them so much more clearly and am in awe of Gods hand holding and guiding us. Bobby Ross almost didnt come with me to the ultrasound because Chale was sick and we felt bad leaving him with a babysitter but last minute we decided to. Our friends, Monica Seth Christensen were such a blessing. Not only did they insist to we leave Chale snotty nose and all but they watched him many times in the weeks after. They are one of so many in our community that walked with us so lovingly through such a hard season. I had scheduled that ultrasound at exactly 18 weeks because I was so eager to see our baby. Im so glad it was not much later because we had time to make appointments, get procedures, not rush our decisions, and ultimately get the fetal surgery. We had our basic ultrasound and after we were told something wasnt right, they said we needed to get a high level ultrasound. They said that the Tufts Medical Center Specialist doctors come only once a week to the building across the street and it just so happens they were there that day. We were able to go over immediately and get a more detailed ultrasound instead of waiting anxiously for days to understand fully what was going on with Lu. Dr. Kleeman was the doctor who explained to us about Luelles condition and the severity of it. She was sensitive, patient, and understanding. She gave me her personal cell number and checked in with me frequently over the coming weeks. She was the first one to mention fetal surgery and ultimately was the one to help us get into CHOP to be considered. A few months ago I was able to send Dr. Kleeman a letter and picture of Luelle. It was so neat to share with her how she had played such a major part in our journey and to thank her for encouraging us to pursue the best care possible for her. I remember struggling with the idea of having to make life changing medical decisions and not knowing how to balance them with our faith. I called a dear friend, Diana Adams, who specializes in maternal fetal medicine and high risk pregnancies among other things. She just happened to be off that day. She has incredible faith and wisdom and has always treated me like one of her daughters. She not only prayed for me and spoke truth and hope, she was able to explain and help us make informed decisions with eyes of faith despite the major risks and negative prognosis we were given. We talked with her multiple times the weeks following and Im am so grateful for her. I love Luelle so much and am confident of the Lords hand in her life from before she was even born.
Posted on: Tue, 28 Oct 2014 13:50:07 +0000
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