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.
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What a little miracle baby! She is gorgeous! I know how hard it is to have had a baby in the Nicu and then to all of the sudden have them home and not be able to be OCD and know their heart rate and blood pressure and oxygen at every second. Love you guys and miss you! Let me know when you are down here! You are so blessed she chose you to be her momma-you must be pretty special :)
ReplyDeleteTotally crying over here -- she is beautiful and this post was such a beautiful introduction of her to the world. I remember reading a really beautiful piece during the presidential campaigns about Rick Santorum's daughter who has Trisomy 18. I know I have a copy of it somewhere, but I have never been able to find it online again. That piece and this post touched my heart so much. Thank you for sharing.
ReplyDeleteLove how happy James looks holding her!!! Watching your parents take care of your brother, James, is one of my only distinct memories from my childhood. They were so tender and good with him (and so good at helping others interact with him) that even as a little girl, I was never worried by him and actually remember thinking he was quite funny and very lovable. I should probably mention that to your mother, haha. Anyway, I look forward to seeing little Christina develop into her own little person as well, even if I have to watch from across the country :) So glad she's here safe! Love you guys. She couldn't have better parents.
ReplyDeleteYou are such a wonderful mother. Christina is so lucky to have been sent to such a loving home. I really want you guys to know how much I admire you both. And I can't wait to meet this little angel! It's so exciting to have a new niece! My favorite photo is the one of her "smiling" - absolutely precious.
ReplyDeleteSo sweet. We would love to have you guys over for dinner of you are ready to get out of the house.
ReplyDeleteMelissa Hardman
Oh Christina! I just cried reading this. James and I feel horrible we haven't called and talked with you and Brian yet! Christina is absolutely perfect! Although I am sure every day will bring new challenges, I am also certain she will bring the best love and spirit into your home and lives. Heavenly Father obviously knows that you two are amazing parents to entrust you with such a perfect spirit. We love you and can't wait to meet darling Christina. PS - James looks like he is a thrilled big brother. I see many good times for these two in the future.
ReplyDeleteChristina, you are such an amazing person. She couldn't have come to a more loving and capable family. I hope one day I can meet her. So glad she is home with you now.
ReplyDeleteChristina, what a beautiful post! I am crying right now. Your parents are special people and obviously that has trickled down. I didn't realize from your facebook posts that Christina's early problems were related to Trisomy. I am sure your family experiences have prepared you well for this blessing and challenge. I wish I could help you with those 1am and 4am feedings. Knowing your brother James was a privilege and I remember well your father's beautiful words at his funeral about all the blessings he brought to your family. Christina is beautiful and I'm glad you are carrying on the tradition. Love you!! -Sarah (Wanlass) Gotfredson
ReplyDeleteI can't wait to meet her!! She is beautiful :) I hope it's not too far from now!
ReplyDeleteThank you everyone for your loving words and support! They mean so much to us!
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