Missing One X, Found One Miracle

September 19, 2011

I have spent many nights in the last few months begging for God to spare my daughters life. We haver certainly received the miracle that we asked for. I don't know why, but it came in the form of a 5 pound 9 ounce bundle. This little girl is here for a reason... She is going to do something amazing. She is sleeping in my room at the hospital right now, and has been since Saturday night. She had about a 36 hour NICU stay. The shortness of it still takes my breath away. Her MRI found no connection between the mass on her head and her brain. Her heart was found to be normal by the Echocardiogram. Her kidney function is normal. Her chromosomes however were found to be missing precisely one "X".

Lily officially has Turner Syndrome and while I'm supposed to feel sad (at least that's what people are expecting from me) I am instead overjoyed by the fact that she made it from my womb into my arms and that after months of waiting we finally have our answer. I feel like I want to go out and have a party!  After months of waiting we have a diagnosis and are ready to move on with our new life.  She is a survivor and we are happy to add her to our family. She has some cosmetic surgery ahead of her and yet she is one of few Turner syndrome girls that does not have a major kidney or heart defect.

Initially we were told they still wanted to do surgery on the mass on her head and I just found out it's canceled... We'll follow up with a cosmetic/general surgeon in a couple of months!

I'm not sure how to process this all right other than to say that if you still don't believe in a God and the reality of miracles and the power of prayers then you haven't yet met my daughter! She is absolute proof of a loving, living God.

By the way... I posted a picture of dear little Lily on Twitter this afternoon. Follow me (@fatlittlelegs) to see it. I will post more photos here once I get home.

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23 comments

  1. I. AM. ELATED!!!! I've been checking Twitter and here on your blog for updates even though I know you have to have been very busy (and recovering from a major surgery no less.)

    I saw her picture on Twitter earlier and got very teary. I was expecting tubes and wires galore but all I see is a BEAUTIFUL little baby girl. In pink jammies no less. :)

    Thank you so much for updating, I'll continue to pray for a smooth recovery for you and thankfulness to God for your precious blessing.

    Lynae

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  2. Congratulations on your little bundle of joy...I completely understand where you are coming from. With something like that possibility hanging over your family's head it can be such a relief with the little things (or not so little) You have truly been blessed with this little girl and I know you will make a great mother for her! A chronic illness does not always have to mean a life of sadness my daughter and I both are proof of that as we live with type 1 diabetes. You can do this! Congratulations and good luck!

    off to stalk twitter now and find that picture of your beautiful little angle

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  3. I've been lurking and following your status, not posting, just praying. I am so joyful for your family and Lily that I just had to post!! What a blessing! I am a believer in miracles and it certainly seems that your little girl is proof!

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  4. Wonderful news and she is a doll! Congratulations!

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  5. Amen. :) I am overcome with joy and gratitude for your willingness to share your blessing with the rest of us. Enjoy that sweet baby girl.

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  6. I saw her sweet picture on Twitter. She is so beautiful.

    I'm sure you are glad to finally have an answer.

    Congratulations on your sweet girl!

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  7. she is absolutely perfect and just the way God made her. She is beautiful! :)

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  8. Awesome news! I can feel the peace that you have with the answer! God is with you!

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  9. I showed Anneke the picture.

    "Mom, do you remember when we were scared that your friend's baby wouldn't make it? Now we're happy because we get to see pictures of her!"

    True, true. This is a happy time!

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  10. God is good! She is so beautiful!! I'm beyond happy for you and your family!!

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  11. We are all celebrating the arrival of God's miracle baby Lily! Such wonderful news!

    -Sarah Yost

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  12. OH MY GOODNESS!! SHE IS BEAUTIFUL!! Thank you Lord!! Wow ~ She is a miracle!!!
    Congratulations!!

    Love and hugs!!!

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  13. Congratulations to mom, dad, and big brother!

    So glad to hear that her stay in the NICU was short and already with mom :). The picture you posted is beautiful, she is perfect.

    Enjoy every second.

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  14. Awesome way to start my day. I am elated at your news, so I can only imagine how happy you and your family are. Congrats again on the birth of your beautiful Lily!

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  15. I, too, have been reading, following and praying, but not posting. God bless you and your family.

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  16. So glad things are going better than expected and that you have a definitive diagnosis! She's beautiful.

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  17. Sarah -

    Lily is a beautiful little girl - I am overjoyed to hear your news that she is going to be okay and that you have a definitive answer. What a miracle!

    So happy for you and your family - best wishes to you all!

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  18. Sarah & Family--What a blessing to know after the many prayers that I have offered on your behalf that you now have your wonderful little girl Lily to love and adore, and through her you are able to share the mighty power of God's love. Many blessings & much joy!!

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  19. Congratulations Sarah! I found your blog through the HELLP listserv and have silently followed your story, not posting but definitely praying for you. I am so thrilled for you and your family. In a string of erie similarities, I too am named Sara, I too had a HELLP baby boy the first time and I too had a sweet, sweet baby girl the second time (Lila Grace, to continue the similarities :)) We didn't know it until she arrived but she too was born with a (very) minor congenital defect. She is now almost two and every single minute has been a wonderful blessng and I know the same will be true for you. Congratulations again, I'm elated for you.

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  20. I'm so glad that you finally have your answers! I can't believe her NICU stay was so brief. WOW. God is good and has truly blessed you with a perfect little girl. I can't wait to see pictures! CONGRATS! I am so happy for you!

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  21. The picture is BEAUTIFUL and I am SO SO SO SOOOO happy for you!!! :) Sending SO MUCH LOVE and happy celebration for you and your family!!

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  22. I just happened on your blog from another blog. I have never read this blog before, but felt I needed to comment. My daughter-in-law has Turner's Syndrome. She is a beautiful, intelligent, and Godly young lady. I just wanted you to know that a young woman can have a wonderful life with this diagnosis. Will I have grand children that look like me? No, but I know God will take my son and his wife in the correct direction. God bless you

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