Baby Christina Lois was born Saturday, August 24th. She was full-term, weighing a mere 5 lbs., 3 oz. and measuring 18 inches. Her name comes from a matriarchal tradition to pass down the name Christina to the first born daughter. She is the seventh generation!
As soon as she was born, it was immediately obvious to me as the nurses rushed into the delivery room that she had Trisomy 2q Monosomy 13 (Meaning, duplication of 2q on 13q with deletion at the attachment site), a rare genetic disorder that runs in my family line.
Her life started off a bit rough and she needed to stay in the neonatal intensive care unit for just under three weeks. Once the doctors were confident in both baby's health and my ability to take care of her she was able to come home. She was able to avoid having surgery to insert a gastronomy tube for feeding. Getting her to eat is still a daily struggle, but she's improving. (And if anyone wants to sign up for the 1 AM and/or 4 AM feedings we are taking volunteers. The feedings take about an hour. Just kidding. But seriously.)
Because of Christina's trisomy she will have life-long challenges. Every cell in her body has faulty chromosomal material and this caused her to have a very imperfect body. She has multiple holes in her heart, problems with her eyes, kidneys, stomach, and many orthopedic issues. Coupled with her physical challenges, she will also have severe mental retardation.
We hope that friends and family will fully love and adore baby Christina as they would any other child. We hope everyone we know will get to know her and love her. Don't be afraid of saying the wrong thing and don't be afraid to ask us questions! We are still the same old Nelsons!
I know that we are blessed to have baby Christina in our family. I am so grateful to be her mother and I pray that I will be able to give her the care and love she needs. I know we will have challenges and hardships in this life, but that we will also have great joy and happiness. We do not know how long she will be on this earth with us but for how ever long it is we are so grateful to have her in our family.