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The story of our precious little girl's 17 months of life with Trisomy 18 (July 4, 2010 - December 15, 2011) and of us, re-learning to live "after Lilly."
"I will praise you for I am fearfully and wonderfully made ...." Psalm 139:14

Thursday, September 9, 2010

Lilly's Trisomy 18 physical features


Weight check = I don't have the courage to check today. I have started adding powered formula into her bottles of breastmilk, so I am hoping that will add weight.

I took this picture of Lilly in the red chair this past weekend when we visited family at their river house. Miss Lilly is wearing her nautical stripes.

On a happy note - Lilly has begun cooing! I've had a couple of sweet conversations with her. What a blessing!

Lilly has the most common type of Trisomy 18. It is called Full Trisomy 18. That means that in every cell of her body, there are three of the 18th chromosomes, instead of two. What causes this? It is not known. It can happen to babies of parents of any age or race.

This plays out in some common physical features for children with this disorder. I thought I would share Lilly's.

"Rocker bottom feet" - there's an extra pad on her heels:













I don't know what to call this next one, but I read someone's description of their T-18 baby and the doctors said the way the hair grows on the back of the head is from T-18. It's like there are two swirls on the back of her head. The result is the hair in between grows together and up. (Punk rockers would envy this natural mohawk!) By the way - Lilly doesn't seem to have lost any of the beautiful dark hair she was born with:




















The next picture shows several of Lilly's T-18 features. First, the shape of her small head is called "strawberry shaped." Her mouth and jaw are very small. She's got different looking ears - known as "elf ears." (A photographer recently told us Lilly had "the strangest looking ears" he'd ever seen. Can you imagine saying that to a child's parents? It did make me think if I ever saw odd features on someone else, I would wonder if they had a serious life threatening disorder.) In spite of those things, I don't think this is a face only a mama could love:














Lilly still holds her hands with her forefingers tucked under the rest of her fingers and thumbs crossed over. They're not always as tight as they used to be:














Those are Lilly's external T-18 "markers." Internally we know that her heart has a hole, also very common with T-18 children. Ultrasounds I had while she was in utero showed some issues with her brain. Other than that I don't know about other internal problems. Nor do I think I want to know yet.

UPDATE:  Click HERE for Part 2 of this post.

26 comments:

  1. we love that little face too:)

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    1. I think she is beautiful. I mean that sincerely. And I am so very sorry she's not with you anymore. My daughter is gone too so I do know somewhat how you feel. It's a very painful time. Again, I'm so sorry.

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  2. I love the picture of her in the red chair! I'd know that chair anywhere :) I think, other than the T-18 features, she also has some of Tabby's features and Bubba's. Love and prayers for you all!

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  3. Such a precious little Dear...I look forward to getting some hugs in person one day. Love and kisses to you all.

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  4. Your sweet Lilly is beautiful, My son is 3 and has Trisomy 21 (Down Syndrome) and he is the biggest blessing in my life...I will keep your precious baby in my prayers and if you ever need a ear to listen to you I will,, I have heard some comments myself and they are hurtful but you have to understand ignorance which is not easy..I have also become a support parent and advocate through many organizations and I am several boards and on the Governor of NC's Interagency Coordinating Council, we oversee the needs of families with kids who have special needs, ages 0 to 5, you can find me on facebook!! Would love to hear from you, Pamela Smith Ross

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  5. Lilly my little one, remember I love you, mom

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  6. Hi, I'm a friend of Lilly's Uncle Stephen and want to pray for her upcoming surgery. Lilly is so precious and I absolutely fell in love with her sweet, little face! I pray for a successful surgery and for results and recovery that stun everyone! God bless Lilly and your family.

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  7. for her hands...have you tried using the baby rings? my daughter was in the NICU for 5 months - born at 23 weeks - nothing like your child has and I pray for her continued health! I digress...the occupational therapist who was working with my daughter would tell me to get the rings and just let her hold them. It helps open the hands up and helps her learn to hold things and eventually play. might be something to try? much love your way, rachael

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  8. I think she is absolutely precious and adorable....just the way she is. Obviously, that photographer was looking through a broken lens :o) She's created by God and we all know that there are no mistakes in his creation!

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  9. Lilly is fearfully and wonderfully made. She is a lovely little baby and given to godly parents for a reason. Our family is lifting you up in prayer and are inspired by your faith and trust in the Lord. The Winter-Hartley family

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  10. My son was born in 2008 with most of the physical traits of Trisomy 18. After many genetic tests, it was determined that he is "genetically normal". We've never been sure whether that is a good thing or not, as we have no answers. However, I see many similarities between him and your Lilly, and they are beautiful in their own little ways. I could slap that photographer who made the comment about her ears. We've experienced similar ignorance. Weight has been an ongoing struggle for my boy too, as he is almost 3 and just made the 20 pound mark. But he is a fighter and he is creative. He will overcome what many believe he cannot. Many prayers for your precious angel (and you!).

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  11. Lilly is a beautiful and adorable baby. Hugs and kisses for her.

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  12. Leah- mommy to fourMarch 11, 2011 at 3:36 PM

    My goodness, she is such a sweet little thing! And she is very pretty! Mother or not!
    Praying for strength for Lilly!

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  13. Your little girl is very beautiful. I see the features of her extra 18 but I think she is one of the prettiest children of this disorder I have ever seen. I do believe Heavenly Father only sends children like this to special parents. these are HIS children and he wants them taken good care of. My daughter was born without a rectum. I had never heard of that. I had never heard of this that Lilly has. How proud I would be to show her off to everyone. I sincerely hope I remember her in prayer.

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  14. Thank you for sharing Lilly with us. I never got to meet my son Brody....who had T 18. There isn't a day that goes by that I don't think about him. It breaks my heart that I never got to meet him but I know that I'll hold him someday. Peace and GOD be with you. Hollie W mom of 3 living angels and 1 angel that lives in heaven.

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  15. my nameis barbara i competetly understand what you are going through .on jan.9,2012 i gave birth to a beautiful little girl summer hope at 21 weeks i found out she had t18 and hlhs the drs. wanted me to terminate but i didnt i carried her 9 months and had 9 wonderful hrs with her after birth she weighed 4lbs 2 oz and was 17 1/2 inches long. IN the9hrs.summer gave us we learned alot about our little angel she was left handed like her daddy,had her brothers eyes nose and feet and my ears and lots of my black hair.MAY Lilly and SUMMER forever be in our hearts and prayers."HEAVENS LITTLE ANGELS" IF YOU EVER WANT TO TALK CALL ME 270-987-2017

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  16. I came across your story when I was researching about GOP Candidate Rick Santorum's daughter. Thank you for sharing your story. Lilly was and is a truly amazing little girl who touched many lives and left you many wonderful memories. Wishing you and peace and comfort in this trying time for your family.

    Stacey

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  17. What a beautiful baby. 5th picture down, Lilly's eyes show a deep soul

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  18. What an absolutely beautiful baby. She had a face that everyone should love. I pray for the holes that are now in your hearts that can only be filled by memories of Lilly. Dawn LaPorte RN Derry, NH

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  19. She's absolutely beautiful.
    My thoughts and prayers are with you as you grieve the loss of your child. May God bless you and keep you safe until you meet again.

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    1. There is no God. Prayer will do nothing for this unfortunate little girl. Surgery and science could help her situation, but there is nothing to be done to fully help her.

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  20. I just came across this blog in doing some research on Trisomy 18. Your little angel was beautiful. Sometimes I don't know what goes through a persons mind when they criticize any child for their appearance. Sorry to hear she passed. I know just in reading your blog, it touched my heart and saddened me to know she is no longer in this world. May God, family and friends see you through the loss you experienced.

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  21. Hi there! I have a friend who just found out her baby has T-18 so I was doing some research and I came across your blog. I just wanted to let you know how absolutely beautiful your baby girl was and may she rest in peace. I hope you are finding comfort knowing that you have a precious angel looking after you! Many blessings to your family!

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  22. im carrying a baby with t-18 and am getting soo much pressure off the doctors to end her life now, but shesmy first daughter im 45 and was told id never carry a girl baby, people dont understand that although inside me, she is still my baby and i just want to give her a chance, am i cruel? selfish? i just cant give up on her and take her life x Your story has given me hope xx

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    1. Oh bless you! It's so hard! But I'm with you - give your baby a chance. Lilly's life of 17 months amazed so many doctors. And even more amazing are the number of other T-18 children out there that are so much older than Lilly was and still living and are HAPPY little children! Feel free to email me anytime. Also Facebook has a good support group - Trisomy 18 Mommies. My family and I will be praying for you and your little girl. She will bless your life more than you can even fathom. I hope you get my reply to your comment!

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