I’d written a post yesterday with an excerpt from a devotional I’d been given. It was followed up with a great report of Nora’s wonderful day. Just as I had finished up, Nora had a blue episode – the worst one yet. Paramedics were called and administered oxygen, then left after Nora got her color back. We later decided to take her to Children’s Hospital for observation until we get her echo done – here we still are. Nora is holding steady without anymore episodes. She’s on oxygen and hooked up to a million monitoring wires, but fortunately we’re still able to hold her and love on her.
DNR seemed to be the best plan of action while I was still pregnant and everything was still theoretical… But now that we have her and know her – I can’t imagine saying goodbye to her. The mere thought just about rips my heart out of my chest. I still trust my God and Savior, but I sure do hate this situation right now.
While Nora’s great report of yesterday no longer pertains, the exerpt from the Streams in the Desert devotional is still very relevant. It was from April 17, Nora’s birthday:
The hand of the Lord has done this. (Job 12:9)
A number of years ago the most magnificent diamond in the history of the world was found in an African mine. It was then presented to the King of England to embellish his crown of state. The king sent it to Amsterdam to be cut by an expert stone cutter. Can you imagine what he did with it?
He took this gem of priceless value and cut a notch in it. Then he struck it hard one time with his hammer, and the magestic jewel fell into his hand, broken in two. What recklessness! What wastefulness! What criminal carelessness!
Actually, that is not the case at all. For you see, that one blow with the hammer had been studied and planned for days, and even weeks. Drawings and models had been made of the gem. Its quality, defects, and possible lines along which it would split had all been studied to the smallest detail. And the man to whom it was entrusted was one of the most skilled stonecutters in the world.
Now do you believe that blow was a mistake? No, it was the capstone and the culmination of the stonecutter’s skill. When he struck that blow, he did the one thing that would bring that gem to its most perfect shape, radiance, and jeweled splendor. The blow that seemed to be the ruin of the magestic precious stone was actually its perfect redemption, for from the halves were fashioned two magnificent gems. Only the skilled eye of the expert stonecutter could have seen the beauty of two diamonds hidden in the rough, uncut stone as it came from the mine.
Sometimes, in the same way, God lets a stinging blow fall on your life. You bleed, feeling the pain, and your soul cries out in agony. At first you think the blow was an appalling mistake. But it is not, for you are the most precious jewel in the world to God. And He is the most skilled stonecutter in the universe.
Someday you are to be a jewel adorning the crown of the King. As you lie in His hands now, He knows just how to deal with you. Not one blow will be permitted to fall on your apprehensive soul except what the love of God allows. And you may be assured that from the depths of the experience, you will see untold blessings, and spiritual enrichment that you have never before imagined. J.H.M.
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Nora is getting an echo done right now. Please pray.
iwillcarryyou 
Good luck baby girl,
best wishes
praying in Oregon… linking from my blog, and sending prayer warriors your way. Much love to your family.
We are praying, Aleisa.
Ditto.
Thoughts and prayers for you, little angel!
Amen amen amen! What else could be said?
I found your blog on fb and had to read. Last August we lost our son Camden at 24 weeks. They induced my labor and we also prayed and prayed. I am blessed to have gotten to meet and hold my son.
Your blog radiated hope. We are expecting again in December and are very nervous but have faith. Thank you for sharing Noras story. We will be praying for you, Nora, and your family every day. God is good.
Jamie our daughter sent us this link, know that our hearts pour out to you and your family and praying for you and your baby girl Nora, our mass will be offered up for her, Gods blessings be with you always.
sending prayers! Praying for peace and healing. LOVE that onesie. It is absolutely fabulous and so is she
Praying in Budapest! Beautiful story of the diamond! So be it Lord Jesus!
Praying for Nora…praying for you and William….your family…. Praying that whatever God’s Will may be that you all find peace with it! Aleisa as you “carried” your sweet baby girl..that precious gem that God gave to you…. We are all “carrying you” with our prayers! xoxo
Praying so hard for your sweet little Nora!!
prayers for your family and sweet Nora. The Shinaults in NKY
We are also praying, Aleisa.
I am praying for her and your beautiful family.
Just prayed for Nora and your entire family! May God’s grace cover you this day!
Praying for Nora! May she go home soon!!
New to your blog…found you through a friend on facebook who posted Melanie’s photos & slideshow. Who couldn’t come to your blog to find out more about your tiny little angel after seeing the heart-wrenching, beautiful photos Melanie took of Nora’s birthday!?! My heart and prayers go out to you and your family. In reading Nora’s story, I find the things that most trouble me in my life to be purely insignifigant. You are amazing people and God has blessed you greatly with your own earthly angel. May he lay is hands on Nora and heal her…storming heaven with prayers for all of you! God Bless!
Such a sweet baby. Contact Mendmaddiesheart.com if you need any help. My great neice was born with tricupsid atresia. She is a CHD warrior. The two grandma’s that started MMH are there to offer you assistance financial or otherwise.
Praying circles around baby Nora like Honi did when he prayed for rain.
Believing for a miracle in Jesus’ name!
Just found your blog through Patti’s blog! What a precious gift Nora is. She is just beautiful. I am praying for her and your whole family. Thank you for sharing her with us.
Praying. God Bless
Praying 🙂
Prayers for baby Nora!
Praying for you and your beautiful baby girl!
Continued prayers from Michigan for Baby Nora and her entire family!
So silly, but I check your blog many times throughout the day to see what the day has brought to your family. Yesterday when there was no post I was immediately concerned and said a few extra prayers! Those prayers are continuing throughout the day today! You and your family are incredible. I hope that you can feel the love and hope people have for you all around the world. Much love from Nebraska!
Reading your blog, I am amazed. Not only about your strength, but your strong belief in God. I have struggled with my belief for many years now, and I dont know if it’s just from ignorance or that I have done nothing but struggled my whole life with finding out who I am and why life has been so hard for me. When I read your blog my heart fills with love, warmth, joy and sorrow. I look at your photo’s and see a group of loving people, whom I wish I could be more like. Nora has touched my life and hopefully someday soon God will return to mine..Thank you for sharing your story, and God has blessed your family.
Not to butt in here but I feel compelled to say that God has never left you, Coleen. He’s there just waiting for you to let him in! May He bless you with his peace and love and may you find what you’re searching for. Saying a prayer for you… 🙂
Praying for you and your beautiful miracle! Thank you for sharing your amazing journey with us!
A friend posted your blog on Facebook and I have just sat here and read it from the start while known little one is napping. I smiled, frowned, cried and was blown away by your strength. I lost my first pregnancy to a miscarriage and wonder if it’s because God knew I wasn’t strong enough at that point in my life to handle what would have been. Your daughter is a true blessing and I will continue to send prayers and smiles your way.
Prayers being said ❤
{{{hugs}}}
Go Nora! Sending all our love from sunny, warm California. We love you, beautiful girl!
anxious to hear
Sending lots and lots of prayers and good vibes…
prayers for your family and of course sweet Nora. She is certainly in the master’s hands and look what he has already created! Rejoicing in the news of her echo and praying she continues to WOW us, her evergrowing fan club!
I have come to understand why God says to hate the world and be seperated from it…not that we hate His creation but hate what rules it. It is all that He is not! Sickness, death, deformaty, cruelty, unforgiving, ruthlessness, painful, suffering, anticommunity! How ever a child comes n2 this world it is my belief they are to God -a report card -of how we who have been handed the responsibillity- respond to Him and the precious vulnerablity of a new life born no mater to what circumstances. Yesterday, my heart cried to God at the deplorable fate of a normal healthy newborn beaten to death w/black and blue swells covering its precious little vulnerable body and all at the hands of its own mother. The newborn returns to God along with a report that surely hangs the Wrath of God’s accontablity over a cruel heart of rejection. but if Nora returns- and we pray and believe she stays we you and grows healthy- Her report will shine in the face of God the execellence of your heart. And, this to Nora means EVERYTHING to her existance. She found love where the other little sweet one didn’t! So I pray that Nora’s life ministers to our Father God this favorable report that meets His standard of excellence and a miracle for a holistic healthy life will be granted. Thank you from all that live in this world for the Love that lives in your heart! Blessings to you and God’s sweet little Nora!
You and your entire family awe and inspire me with your spiritual beliefs. I pray for your precious gem and for your families continued strength in the Lord.
Praying for Nora and for you and your family. I found your blog through a friend’s FB post and God has blessed me with your story and your example of obedience and faith. Thank you for having the courage to share.
What a precious angel! Praying for baby Nora!
What a wonderful and insightful message. God bless and prayers to Baby Nora and your entire family.
Prayers for little Nora and for you. Jesus is the Great Physician and God knows the plans he has for each of us. I pray for total healing for your precious daughter and for God to give you the peace and comfort you need during this time in your lives.
Just came across your blog and already love little Nora. She and all of you will be in my daily prayers. Lots of hugs from Spain 🙂
Prayers for darling Nora and you and your family. Thank you for sharing this incredible story. Love sent by the buckets full
I discovered your blog a week ago and have been following Nora’s journey every day since. We pray daily for her. May the knowledge that she is touching lives around the world bring you some comfort. Will pray for the doctor’s caring for her and her echo. Thank you for sharing Nora’s beautiful story with so many! She is precious!
I heard something was up last night through the grapevine… Praying and loving on you all!!!
Praying for all of you right now! Peace, strength, hope, comfort and some answers to what might be causing her blue episodes..
Hello,
Came across your blog/ Nora’s birth and story yesterday night on my friends fb page. I find myself crying tears of joy as I go through each picture of your beautiful child and family. I have said little prayers for Nora including the rest of your family as soon as I remember your amazing and brave story. I am a firm believer that the Almighty God whom I serve and you serve will not give us what we cannot handle. His will, will not take us where His grace will never protect us. Although we as humans wants everything to be perfect, it is ultimately God’s will and Plan for our lives that surpass all….God uses people to bless others and I know that Nora has been sent here on earth to touch many lives and bless us in return, including bringing us closer to God….You are allowed to get angry or be scared but remember that He who perfects everything will be there to carry you through. Nora is a very beautiful baby girl and your family is very lucky to have her in your lives….During these trying times in Nora’s life, you and the rest of the family have to be strong for her sake. I will continue to lift you all up in my prayers and may God continue to bless you ALL!!!!
PS: you guys are in great and excellent hands at Children’s Hospital. (I am a nurse there and I have taken care of amazing babies/ families with different unique birth stories). I always say that there is a very special bond that my families possess with their child and these children are very much loved not just by their parents/ families but all who come in contact with them…
I am praying for all of you… your baby girl is just so precious!
Praying for your beautiful daughter Nora!!
I am following your blog about baby Nora and sending many prayers your way. God has big plans for your precious angel. My family went though a very tragic time 4 years ago and lost two precious angels One of them Adam lived 54 days We all fell in love and were heart broken when we lost him but, we know we truley were blessed with an angel here on earth..Hold fast to the one who sent you your precious angel You are never alone in this journey.God Bless baby Nora and your family. Thank you for lettting us share your blessing
She is so beautiful! Definitely God’s blessing!
I am praying for Nora and for your entire family. You have been one a God’s warriors and i leave this quote that I wrote on my program in BIG BOLD letters for you today.. Romans 8 :28 ‘ And we know that in all things God works for the good of those who love him, who[a] have been called according to his purpose. ” God Bless Nora and your family continuously..
God I ask for faith to stand on the truth…the truth that “In the beginning was the Word, and the Word was with God, and the Word was God.” (John 1:1) God is the word. The word is truth. Jesus took trisomy 13 to the cross and I stand in the gap as a warrior (I wish my name didn’t even have to appear below, because it’s Jesus in me, not me)…..thank you Jesus that your resurrection power resides in me, and when you died, you said that the Holy Spirit would come and greater works would we do!….I stand and declare healing over Nora. ❤
I have been reposting and following your blog. It was found on Michelle Arnold’s facebook page. I pray for you and your family every day and have placed her name on prayer chains. I hope God’s plan for Nora is for her to have a long life with her Earthly family. She is a beaufitul little girl and I find encouragement and amazement at your strength as you journey through these difficult times.
We all appreciate you contining to share your story and Nora’s progress.
Continued prayers.
I posted about my miracle daughter the other day who wasn’t suppose to survive either. She is now 18 and her name is Kinsley. She now follows little Ms Nora every day and prays for her. One miracle interceding on Nora’s behalf for another miracle. How extraordinary!!
And I understand your thoughts on DNR. We did the same thing. It is so easy to say that you can just let go but then when you have that child in your arms it is a whole different story.
God gave her to you because he knew of your perfect love for her. And that you will fight for her.
I read the comments posted tonight and one was from Budapest!!!! How amazing that in 12 days her story has traveled the world over!! No matter what she will continue to touch lives for many many years.
Get some rest!!!!!!
Praying in VA.
Amy and Kinsley
Dear Nora and Family, May the Lord bless you and keep you, continue to fold His loving arms around you, and give you peace that passes all understanding. Jan, Indiana
Good luck and all our prayers from South Africa!!
Hope it went well, please keep us updated.
You have my prayers, Alesia! Thanks for your hope and courage and your beautiful daughter’s picture. Thanks for bringing her into this life! We are all sharing in the beauty of her life!
Praying for sweet little Nora 🙂 I love her outfit 🙂
Nora, you are so strong.. You are one of the toughest little ladies I know. I’m praying that you get to be home soon in your warm cozy home with your siblings laughing and playing around you. Sleep well.. Nora and Mom.
I too have been touched by your story! I pray for little Nora Rose daily as I pray for your entire family. Your story has touched my heart and your blog is so inspiring. Your faith in God despite the challenges you have been faced with reminds me of what is truly important. Thank you God for the gift of Nora Rose and the gift of her mother’s beautiful words. Hugs and love to the Yusko family from NKY.
Your blog continues to amaze me with the profound thoughts you have given through this walk with Nora and your continuing walk with God. Blessings for all of you and the echo also.
Since you already on Facebook you may want to join this Group. These are over 700 Families with Trisomy Children. Lots of Advise and Help if needed. Also please come to http://www.trisomyhelp.org if you ever need Help. I have a Son with full Trisomy 18 that turned 3 Years old in December. We have Families on the Facebook Page that has Children that are 13-14 Years old. Please join our Page.
http://www.facebook.com/groups/T18Mommies/
Aleisa and William, we pray for Nora Rose and your entire family . Your faith is an inspiration to all of us.
Jenny, When Lane was Born i had to do CPR 4 Times in a little over a Month. I was not ready to let him go. Well it all worked out and 3 years later here we are with a thriving spunky 3 Year old Boy with full Trisomy 18. Don’t let it beat you, fight everyday, Advocate for your Child and never let Doctors tell you to just let go!!! The Joy you will get from your Daughter is amazing!!! Trust me when i say that Trisomy Children are a Gift from God!! A Gift to show you how precious Life can be!! You will realize that the little things are not as important anymore!! And most of all you will enjoy Love as you have never known before!! Tell Nora Rose that she has a Trisomy 18 Friend here in Texas, Lane sends his XOXOXOXOX to Nora Rose!!!
Beautiful child!! I am praying in GA.
I have shared before about the little girl with T18 that I had the joy to work with as her physical therapist. She is still living by the way, I think she’s 10 and doing great. All of her doctors are at Cincy Children’s. Anyway, her mother shared a story with me about how they lived with hospice throughout her childhood and had a DNR set up when she was born, but then when she was 4 or 5 she got pneumonia really bad and coded and they of course wanted her saved. After the whole ordeal, her mother laughed about them forgetting that they still had the DNR on file because they had come so far from the time where it was day to day not knowing. Just thought I’d share. Prayers for Nora from IL.
A Perfect Lily sent me here to read your story and see your slideshow. I am just amazed by the beauty of the blog and your precious little Nora. I am a pediatric nurse and recently came to have a patient who has Trisomy 18. Victoria is 14 years old and such a precious little girl..she’s had a will to live this long past her expectancy. Have faith that whatever God brings to your family, He will bring you through it!
Aleisa, I just found your blog, by way of Melanie’s blog, by way of iamviable’s FB page. Reading back through some entries, you are filled with the faith and strength from our Lord. Thank God for little Nora Rose! She has and will continue to not only bless the lives of those that have known her in person, but have come and will come to know her from your postings on the www. I have already prayed for Nora, for you – Alesia and William, and the rest of the family. Such little lives are so important in the big scheme of God’s creation. May God’s blessings continue to pour on you. With much love~
I had the priveledge of meeting this inspiring family today! Such love—I feel so blessed!
Aleisa, William, Greta, Gavin, and Nora,
Our hearts go out to you and your amazing family. God has blessed you with Nora. We too were blessed with a special needs baby, Maddy, she has Down Syndrome along with many medical complications. It has been a wonderful journey that we would not trade for the world. As you said you knew that Nora was where she should be,so is our Maddy. I came across your blog through a friend, Michelle Arnold, who also has an amazing family. Also, my husband coaches Gavin’s b-ball team. It’s a small world and everyone is brought together for a reason. You have strengthened our love and devotion of Maddy,once again through your words. We will pray for your family and your special, beautiful daughter. May your faith continue to guide you on this journey.
With Love,
The McKenzie Family
Ian, Kimberly, Max, and Maddy
Sending our prayers from independence, ky.
I just had surgery on Tuesday. My baby is now with god. Nora, I will pray for you baby and your family. God love you and be with you.
I just had my first baby this past February. We named her Sophie Therese. I am praying for little Nora and for you and your family that God will bring much peace into your lives. God bless her precious perfect soul.
I am praying for baby Nora!
Beautiful baby Nora. Your strength is amazing. Your family is awesome. And God is great! Prayers from Wisconsin!!
All I can say is that Nora’s story is sad, happy, inspiring, full of faith. I think of her and your family often thru out my day. Hoping it’s fills with new milestones. I pray that Nora will have a long healthy life. I have had situations in my life where I needed to let go and let God, it is so tough being human and letting God take full control. But your story has intensified my faith and I want to thank you. Prayers are being sent constantly from Florence, Ky to God for her health and well being and for your families strength and courage. Missy
Your story is such a testament and inspiration. I cry for the joy of this precious child and I cry for yall in dealing with this journey. I pray for Nora and you guys. My sister n law and brother in law have been diagnosed with a child who is missing part of his 13th chromosome and she is now 23weeks. The docs have given the child a 3percent chance of making it to term. Your story is an amazing example for others to follow. Please know how much Nora and your family mean to so many people who have never met y’all bc we all believe in god and the love for him and each other. May god continue to give you strength and bless this child
I LOVE THAT PICTURE OF LITTLE NORA ROSE. GOD BLESS.
I have been very blessed and encouraged by reading your story of your pregnancy, birth and now little Nora! My precious daughter who is 36 has breast cancer. It is the same kind I had 8 years ago and God has helped me cancer free so far! My mother died with breast cancer as have other relatives. My heart has grieved for my daughter, mother of 4 children, and at times I feel my heart is being ripped out of my chest. God has been a constant strength and comfort to me in this journey. My daughter has a strong faith in her God and this is carrying her through many sick and painful days of chemo. The devotional you shared from Streams in the Desert from April 17 about the diamond was one that has been my favorite. In fact, I just copied it and gave it to my daughter with a little congratulation note when we celebrated her first 8 weeks of chemo being completed a few weeks ago! Your faith and trust in God has greatly helped me face another day with her white blood cell count very low and unable to get her next chemo and a fever is beginning. Your thoughts about little Nora having a specific purpose in this world given to her by God has greatly encouraged me to see this in my daughter ‘s life and my own.
One of my favorite scriptures is Isaiah 66:13, “As a mother comforts her child, so will I comfort you.”. Thank- you for sharing your story and showing us the love and faithfulness of God in your difficult trial. God has appointed your family as a mighty vessel to work through to touch, teach, encourage and strengthen many other people in their difficult circumstances, too! My prayers are with all of you and baby Nora. May God richly bless, comfort and love you today and always! Only God and eternity knows the profound difference her little life is making!
Praying for your beautiful baby- wait, believe, pray and hope.
God will give you what you need- understand which therapies and solutions work best for your child. I pray for you and your child…