Nora – 73 Days Old

I’m writing to ask for prayer and to let you know what is going on. It’s also a feeble attempt to get this crushing weight off my shoulders.

We went for the follow up appointment with the cardiologist yesterday, as I had mentioned. Both William and I were optimistic about the appointment. We were actually excited to be told how well sweet Nora is doing – come back in a few months, or so we thought.

As I understand it – the way that Nora’s little heart is operating is doing harm to her lungs. She will need surgery sooner than later to prevent any irreversible damage to her lungs- if that hasn’t been done already. She may or may not be a candidate for heart surgery. In order to determine if she is, she will need to undergo extensive testing on her other vital organs. If there is anything else not functioning properly, she is not a candidate for heart surgery. Even if she is a candidate, and she does get her VSD and ASDs repaired, it’s no guarantee that her blood flow will reroute the way it’s supposed to go. The lung damage will continue. She will never be eligible for a lung transplant. We are supposed to go back in a couple of weeks for another appointment to see if further testing is even an option.

I feel like I am suspended in the air by a flimsy fraying thread over a sharpened sword. The thread threatens to snap any second. It’s so against everything I know to be true about our amazing God. He’s not just going reach down with a pair of scissors and cut the thread, or give it a quick flick. His hand is right beneath us ready to catch us and hold us closely to Him. I KNOW that, I TRUST that and I BELIEVE that, but His merciful hand slips out of view here and there. All I see is that sword and it scares the hell out of me.

I can’t even begin to express the amount of love that I have for this precious baby that stares back at me in wonderment with her big blue eyes. She coos at me, having no idea there is anything wrong with her. It rips me to shreds to imagine life without her.

Here are pictures I had taken yesterday which I had hoped to use in a typical cute, light hearted post about how fabulous the appointment went. They’re still cute even through my tears.

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I just made tinkle all over my Mom! You'd think she'd learn not to change me on her lap anymore!

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Haha, Mommy!

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From a text I received this morning:

“He who trusts in the Lord, mercy shall surround him.” (Psalm 32:10)

At times, God required a season of waiting before He sends His blessing. Then trust becomes your greatest asset. If we don’t trust God w/our need, we will cry out in fear and panic. At one point during a storm on the Sea of Galilee, the disciples thought they would perish. Jesus commanded the wind and waves to be still. He taught the men how to trust Him even in the most tempestuous of circumstances, and He IS teaching you to watch and wait for His outstretched arms.

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I need to keep reading that over and over and over today. Please, God, have mercy on us!!!!

65 thoughts on “Nora – 73 Days Old

  1. Dear sweet Aleisa, how my heart hurts for you. There are a million things I want to say but my words are not as graceful as yours and I’d probably mess something up. I want you to know that I will be heavily in prayer for Nora, her heart, and her family. I pray knowing, expecting for God’s blessings and healing. Sending warm hugs, kisses, faith. -Shauna

  2. We also had a little girl, Rachel Ann, with trisomy 18 who was born November 13, 1999, so I have been following your beautiful blog with tremendous interest. When my husband saw me reading it, he said, “Who’s that holding Rachel?” because Nora looks so much like her. Rachel was sent home from Cincinnati Children’s Hospital after four days because she had three heart defects and other problems and they said she was “not a candidate for surgery.” (Really? You have to campaign for surgery?) We had also been given the dreaded “incompatible with life” diagnosis before her birth, but she lived and even thrived and enjoyed life for six weeks until God called her home on Christmas day. The hospice nurse had to come out the day after they sent her home to bring more feeding tube supplies and miniscule diapers and I realized much later that they hadn’t sent enough things with us because they thought she would quietly die at home that evening. Our pastor told us much later that the hospital had called him the day she came home and told him to expect a phone call in a few hours. So one thing I learned that I thought might help you get through this day is to realize that every beat of our hearts is a gift from God, whether we live six weeks or a hundred years (either time span is brief in light of eternity). We had much more time to enjoy Rachel and to get to know her than anyone in the medical field predicted, and while it was not enough for us, I now realize it was a miracle of God’s grace, a precious gift. I couldn’t stand the fact that she died on Christmas and thought Christmas was ruined for us forever, but our youngest son pointed out that Rachel was a special girl so God took her to heaven on the most special day in the year. If you want to talk or e-mail me at any time, please do so. My number is 513-574-5575 or 513-373-7482 (cell). Your blog is incredible and little Nora has had a greater ministry than most of us grown ups will ever have. Here is a link to Rachel’s web page if you would like to read more: http://www.mem.com/Story/17968/4038318/4038516?title=Biography
    Blessings on you and all your family. Please know that you are loved with an everlasting love.

  3. I started following your blog several weeks ago and was worried when I opened my email this morning and there was no update. You don’t know me but I will keep praying for all of you.

  4. Trust in the lord with all your heart…and lean not on your own understanding….Prayers going out to you and your family….

    Blessings…

  5. Praying, praying, praying for that sweet angel of yours!
    Proverbs 3:5
    Trust the LORD with all your heart and lean not on your own understanding.

    Many Blessing!

  6. She looks like a strong beautiful little girl. God works in an amazing way. My daughter is proof that miracles do happen. My thought & prayers got out to you & your little miracle, never give up & take it one day at a time. Hoping for the best 🙂

  7. Even though little Nora’s heart is not doing as it should- she has strengthened and softened the hearts of many. Praying for her- and for you, that God will hold you all in His arms and that you will have peace through this tough time.

  8. Remember this, all our children are “on loan” from God. We never know how long we have with them. I did everything you did, prayed, surrounded myself with prayer warriors, etc…but in the end we had 3 days with Bryce. I know this is not the typical “cheer up” post but the reality of our situation with our T18 babies is dire. God is indeed in control, the catch is, we do not know the plans He has for us or our special babies? We have to trust and lean on His wisdom and grace. My heartfelt thoughts and prayers for sweet Nora and your dear family are with you! Remember, God IS Good! He will give you His Peace!

  9. Dear Alesia,

    My heart is hurting but I know (and you know) our God is so much greater than anything this world has to offer. I am praying for understanding and patience as you go thru these next few weeks waiting for the next appointment. God is NOT going to cut the thread or wave His hand to move you out of the way…..instead He will continue to hold you all in His palm. Oh how blessed we all are to know that He is able and willing to take care of us! I cannot go thru a day without hearing about your sweet Nora Rose; I know this is the might hand of God teaching me even more about His love and compassion for us all. Stay strong and remember that there is a WORLD of prayer warriors calling lifting you up each day!

  10. Your faith is sometimes all you have. Rely on that, and immerse yourself in the love of your family. God will be there to walk whatever path he has planned for you. Prayers.

  11. I am so sorry for the news you received from the doctor’s appt. I am 35weeks pregnant and my Margaret Lilly has T18 and hypoplastic left heart, so I know how it is to get nothing but bad news from doctors. I have been running pretty low on hope until I started reading about your precious Nora Rose. I want that. I want 73 plus days with my Margaret. Before, I was just praying she got through birth alive and was afraid to ask for more……now I want more! I have committed everything into God’s hands. He is just and good. I BELIEVE that! I am praying for you and look forward to many many more stories from Nora Rose. She is sooo beautiful!

  12. Aleisa, I’m holding back my tears…BUT let’s try to see things with God’s eyes:
    God has created Nora in a perfect way : the way she ‘s with the little holes in her heart and the lung problem.
    It’s not casualty , He’s not playing dice with her nor with you and William. He has a perfect plan for Her and has entrusted her to you for the time she needs to fullfil her purpose in life, even though we only catch a glimpse of that purpose seeing how many hearts she’s touching even before being born.
    All of us , healthy and sick people, are in God’s hands. Repit that to yourself when you feel anxious. God is a loving Father.
    Apart from that, let’s pray for a miracle. I know the case of a very sick girl with trisomy 21 and pulmonary and heart issues whose life was told to be a miracle by her doctors and after undergoing several surgeries is doing awesome. Miracles do exist. BTW her surgery was performed at Boston Children’s Hospital. In case you need any kind of information let me know and I’ll put you in touch with her Mom ( American).

  13. You and Nora have been an incredible inspiration to me. You remind me each day how valuable life is and how amazing of a priviledge it is to carry, love, and care for a child. The only way I can repay you both for what you have given me is with prayer. My heart aches for you even though I have never met you. I pray that little Nora’s heart stays strong. And I pray that your heart stays strong too, that it finds comfort and protection in this difficult time. hugs.

  14. Aleisa & William, I’m so sorry for the hard news. I don’t know what to say. I think of Job’s counselors and the wonderful job they did for the first seven days as they sat near by in silence. Then they opened their mouths and did more harm than good. Instead of words I will just follow Romans 12:15 “Rejoice with those who rejoice, weep with those who weep. 16 Live in harmony with one another.”

  15. Hello! I am writing to tell you your daughter Nora is beautiful. I understand your feelings and the concern that you maybe experiencing rt now, but I am also here to offer you hope. My daughter also has trisomy 18 and had a VSD/ASD fully repaired at a very young age. There are options, maybe even more than have been discussed. We were denied surgery and flat out lied to on more than one occasion, so as you may imagine it can often be a difficult road. We traveled a great distance from our home to find a surgeon to fix my daughter’s heart, and now she is doing very well and will be two next month! If you are willing, I would love to connect with you via e-mail.

  16. My heart weeps with yours. No one can feel your pain. Just hold her tight and give her a big kiss. One day at a time is sometimes all we can handle.

  17. We will be praying, praying, praying. The beginning of this journey is so uncertain and scary. Here’s what helped me the most in the beginning months with Lilliana…..I lived in the Psalms every chance I could. As I would read – an overwhelming sense of God’s faithfulness and trustworthiness would calm me until the next time I was in despair with the doctor’s words and the stats of T18. Try it and I’m sure God will remind you as often as needed that He is faithful beyond our understanding and He loves Nora more than you ever could. Hugs!

  18. Aleisa, tears just ran down my face to read your post. I know it feels like God’s hand is not visible all of the time but He is there. I saw a necklace with a pendant on it at Hobby Lobby and when I used biblegateway to see what the scripture meant, I thought of you.

    Isaiah 46:4 (NIV)
    4 Even to your old age and gray hairs
    I am he, I am he who will sustain you.
    I have made you and I will carry you;
    I will sustain you and I will rescue you.

    God has His hands on us all of the time. It is so hard when we see our loved one’s hurting, especially our children but He is there. I know that you know this but I can say I truly do understand the feeling of wondering where He is at times. I pray for God to show you He is there during those few seconds or minutes etc of wondering “where are you God”. I check on Nora daily, I may not always post (bc I do it a lot from my cell & I fat finger the buttons so I usually only post when I am on my laptop) LOL but in all seriousness, I pray for y’all regularly.

    Please let me know what I can do to help y’all out.

  19. Aleisa,
    I am a stranger to your family, but your sweet Nora Rose has stolen my heart. I so look forward every day to your photos and posts. I saw this one come up this morning and clicked right away. I had seen where the Mummerts had requested prayers for you so I have been praying all morning. My stomach did flip flops when I read your post, but two things kept running through my head as I teared up at my desk:
    1. I am so glad that God is in control- and that you know that. I cannot imagine the weight you are under right now. I pray a special prayer for you all to know comfort and peace in His providence and power.
    2. What a lucky little girl Nora is to have you for a mommy. As I said, I am a stranger to you, but you make me proud to be a mommy every time I read your posts. While I will hopefully never know what it is like to receive any of the news you received concerning Nora, I do know the pain of a congenitally-ill child and not knowing what the future will hold. I pray that as you look in to those absolutely gorgeous, big, blue eyes of your sweet girl, you will know how lucky she is that God gave her to YOU.

    Prayers of peace, comfort, healing and answers,
    Emily Miller

  20. Praying. You have so much strength mama. Thank you for showing me how to truly trust in the Lord. What an amazing witness you are.

    Blessings on baby Nora and her doctors, may they know just what to do.

  21. I want to be very clear before I ask you (or your husband) to read this – this post is NOT an easy read. But it has been heavy on my heart to send it to you ever since a friend posted it (in a pro-life group). If nothing else, I want you to come away from reading it knowing that you and your husband may have to fight for your little girl to get the care she needs as others may not see her as the bright blessing of God that she is. And please know that sweet Nora Rose will continue to be in my prayers.

    http://buddzoo.blogspot.com/2012/04/medical-futility.html

  22. My son went through heart surgery when he was 10 months old. He had a “whopping” VSD, ASD and pulmonary stenosis. They were able to put him on meds to hold us off until he got bigger. (Lasix and Digoxin). His was caused by a del/dup/inv of his 8th chromosome. It was a hard time- but after the surgery he was like a new baby! And kids heal so quickly. We were home from the hospital in 4 days. I had made a video for him after we got home. http://www.onetruemedia.com/shared?p=ad50b12e261ee50d69499a&skin_id=1703&utm_source=otm&utm_medium=text_url
    If you need someone to talk about what to expect during surgery 1st hand feel free to e-mail me :). AND to give you some hope- remember the IMPROVEMENTS Nora is making. Being able to keep her sats up is no small thing. We are all praying for you. Miracles do happen. And no matter what that little girl is a miracle.
    ————————————————————————————-
    Helpful quotes to get through tough times….
    Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.
    Psalm 94:19
    In the multitude of my anxieties within me,Your comforts delight my soul.

  23. You are a beautiful mother. This is just my own faith speaking, but I think what you are facing is a little like what it must have been like for Mary…to accept with faith what has been blessed upon you, and to trust in His plan even when you have no idea where the path leads. I will be praying for you and your family and Nora. God certainly picked the exactly right parents for Nora.

  24. Aleisa,

    I am a mother of a micro preemie and our NP and friend Caroline Kistler has shared this on her wall. I thought of this verse that was framed and given to me while my son was in the NICU. ..It is a version of II Corinthians 12:9 “…for my grace is strongest when you are weak” I will pray for your family and for baby Nora. My favorite image when I prayed for my baby was of him sleeping on his belly in the palm of God. I will place Nora in God’s palm as well.

    Jennifer

  25. Aleisa,
    I can’t wait to get on the computer each morning to read about your beautiful Nora. I was so hoping you all got good news yesterday. God knows that you can handle anything that he throws your way. God gave you Nora for that reason! He knew she needed someone special that would love her no matter what. I will keep you all in my prayers and will pray for your strength and courage in the decisions you are now faced with. God Bless you and Nora Rose!

  26. Aleisa,
    I truly feel for you and your family. Our daughter Abigail had Trisomy 18 and lived for 118 days. I remember agonizing over every decision we made with her care, worrying if she could handle surgery, deciding weather or not to sign a DNR, and all those major decisions that can weigh heavy on your heart. You really truly realize how many decisions you make in a day when you deal with something like this. Your faith is strong and I know it will help you make the best choices for little Nora. Your are in our thoughts and prayers!

    Jessica

  27. Praying for all of you. I pray that you will feel the arms of Jesus holding you through all this. He is there, and we are with you in spirit. God Bless and Keep you.

  28. A wise woman wrote this:
    “Please don’t worry about what the future holds for you or for your baby. I promise you it is going to be beautiful in the end. Just as you carry this baby, I will carry you.” (Day 13)

    Your strength may feel minimal at the moment… but it’s truly immeasurable to all of us who follow you. Go back and read through your journey from the beginning… i think it will bring you peace.

    Thinking and praying for you & your family.

  29. ALEISA, I AM SITTING HERE TRYING TO TYPE THO THE TEARS ARE RUNNING DOWN MY FACE. I WAS HOPING AND PRAYING FOR REALLY GOOD NEWS. WHEN NOTHING HAD BEEN POSTED BEFORE I WENT TO BED, I FELT LIKE SOMETHING WAS WRONG, BUT I PRAYED AND PRAYED FOR OUR LITTLE NORA, YOU AND THE REST OF YOUR FAMILY. I CAN’T EVEN BEGIN TO KNOW HOW HARD THIS IS RIGHT NOW, BUT PLEASE KNOW THAT ONE PRAYER AFTER ANOTHER IS GOING UP. I KNOW, LIKE YOU, THAT GOD KNOWS BEST. SOMETIMES IT IS SO HARD TO SEE THE RAINBOW THROUGH THAT DARK CLOUD. I DON’T EVEN KNOW IF WHAT I AM TYPING MAKES ANY SENSE AT ALL, BECAUSE I REALLY EXPECTED SUCH GOOD NEWS. I HAVE FOLLOWED YOUR BLOG EVERY DAY, AND HAVE GROWN TO LOVE NORA AND YOUR WHOLE FAMILY SO MUCH. I FEEL LIKE I KNOW ALL OF YOU SO GOOD, AND WE HAVE NEVER MET. NORA HAS BROUGHT SO MUCH SUNSHINE TO SO MANY OF US EVERY DAY, AND HERE LATELY I HAVE HAD SOME DARK DAYS, BUT AFTER SEEING OUR BEAUTIFUL NORA’S PICTURES, THE DARKNESS SEEMS TO FADE AWAY. GOD KNEW WHAT HE WAS DOING WHEN HE SENT NORA TO YOUR FAMILY. I THINK HE PICKED THE PERFECT FAMILY THAT WOULD LOVE AND TAKE CARE OF HER, AND ENJOY EVERY MINUTE WITH HER. NORA IS SUCH A BEAUTIFUL LITTLE GIRL, AND EVEN THOUGH SHE IS NOT VERY OLD, I CAN SEE THE LOVE IN HER BIG BLUE EYES WHEN SHE LOOKS AT HER FAMILY. THANK YOU ALEISA FOR DOING YOUR BLOG TODAY. I KNOW THIS ONE WAS HARD FOR YOU, BUT YOU DID IT ANYWAY, AND I JUST WANT TO SAY THANK YOU AND THAT I LOVE YOU AND YOUR FAMILY. I WILL CONTINUE TO PRAY THROUGH EACH AND EVERY DAY THAT GOD WILL GIVE YOUR FAMILY STRENGTH TO ACCEPT WHAT HIS PLANS ARE. NONE OF US KNOW WHAT GOD HAS IN STORE FOR US, BUT HE DOES AND I CANNOT HELP BUT PRAY THAT NORA WILL BE HERE MUCH, MUCH LONGER. I WILL CONTINUE TO LOOK FOR YOUR BLOGS, BUT IF THERE ARE DAYS THAT YOU CANNOT SEND ONE, WE WILL ALL UNDERSTAND. LOVE AND PRAYERS FOR ALL OF YOUR FAMILY.

  30. Hi Aleisa,
    Do you remember my story about the 3 Little Birds and the nest on patio? We went around back last night to see how the nest was doing and do you know how many babies are inside? Three. I immediately thought of you. You are processing a lot right now, but as you were doing that, I found our 3 little birds, so I know that they are here for you just as much as they are for me. Keep breathing and imagine all of us here on Earth for you, shielding you from that sword. I have a quiet place in my mind I go to when I am spinning and in pain, it’s a forest of birch trees where it’s always a crisp autumn day. In between two trees is a large hammock, and I sit down and swing gently. I breath the air, listen to the leaves, and soak in all of the amber, orange, red, and brown colors mixing in with the white of the birch. When I am feeling peaceful again, I open my eyes and tackle my day. My hammock is free for you to use any time you want. Wrap Nora up and sit quietly, or go by yourself. But remember, you are never alone.

    xoxoxo
    April

  31. dear aleisa and william, you are not alone. I hope you can replace the image of the sword with a picture of a thousand open arms ready to catch you.. we are praying every day for your whole family that you get better news next visit. love jenny and greg

  32. I an thinking of all of you and saying a prayer that God has made her string extra thick and stronger so that many years pass before it is broken!

  33. “so Jesus answered her, ‘o woman great is your faith. What you want will be done for you.’ And that moment her daughter was healed.” matthew 15:28

    Praying for Nora.

  34. Prayer for little Nora, mom and dad. God knows the plans He has for us and although we may not understand the things in this life, we can know and be assured that God is with us through it all. I believe in Miracles and I believe in prayer. Blessings to you and your family.

  35. “Seeing” Nora and her big beautiful eyes that take in the world just makes my day – I stop by your blog every day to see how she (and you!) are doing. Please know that you are all in my prayers. God has His hand in little Nora’s life, and has since before she was even conceived… may you find the strength to trust that He will see you through this. I know that you and your family know every day with this beautiful little miracle is an incredible gift – and I hope you get so many more of those days to cherish!

  36. I am the mother to a 3 1/2 year old son with Full Trisomy 18. The best advice I can give you is to please get a second opinion. I would also get a “pro-life” Pediatrician. All you have to do is Google “How do you find a pro-life doctor?” and a list will come up for you to search through. Having a Pediatrician be your child’s advocate, is the best way to get appropriate medical treatment. Hugs and Prayers!!! Alisha Hauber

  37. My heart hurts for you with the heaviness of the news you received from the doctor. Then my thoughts are drawn to reading the many notes that people who have walked your path with similar situations; those who haven’t been there – but most of all the many prayers that are being sent upward to our Lord and Healer. Little Nora is a beautiful child of God and He loves her more than any of us could possibly know. I know that He will only bring good to all and though it is hard to feel that trust and faith – He understands this also. Hold tight to those walking with you knowing that others are now picking up the honor of praying for you. Rest in peace knowing and feeling all this love for you. May His peace be with you.

  38. so much love and prayers to sweet little Nora, as well as to you and your family. sometimes we have to handle things not just day by day, but also moment to moment. praying that your joyous moments outnumber your dark ones…..

  39. Praying for all of you. GOD has a plan and a purpose. I pray HE will give you strength and courage in the days ahead. Little Nora is such a doll!

  40. I offer up our pain of not being able to have a baby at this time for you and little sweet Nora and your husband and all your family!

  41. Aleisa, I have yet to comment on your blog, but I have been following since the day Nora was born (thanks to Katherine Flynn.) Your courage and unwaivering faith in God is beyond inspiring, and the fact that you share your faith so openly makes you even more special. Nora’s effect on this earth is yet to be determined, but she has certainly proven that there is a God and that any child can thrive with love and faith. I am constantly praying for your family and for Nora. God bless all of you!

  42. I read about Baby Nora on Facebook (I am friends with Tori). Nora is absolutely beautiful and I am praying for her and your family. God bless your sweet baby and I pray that God heals her.

  43. I have read your posts each day, since I saw them shared by a friend. There have been many days when I wanted to reply, let you know you are in my prayers. Let you know you have brought a smile to my face with a little quote or a picture, but frequently (due to my location) my internet access is very limited and I don’t take time to reply. Today I needed to, though. You know there are many people throughout the world praying for Nora and your family. But today, I just wanted you to hear from one more of those people. Praying for your miracle!!!

  44. I am so sorry. She and your family continue in my pairs. God knows what he is doing. It is not for us to understand.

  45. Dear sweet Aleisa, My daughter and I follow your blog. Its funny I seem to get so excited every time I get an email update on the blog. We love little Nora even though we have never met her. I feel she or you guys are my family sometimes. I always get home from work missing my kids so badly. Then I run to the computer to check on Nora. Just remember Nora and you guys are in our thoughts and prayers every day. Hoping, Praying, Believing In HIS great power!

  46. I have been a follower since before Nora’s birth. I wanted you to know that with your belief in signs, you just posted one! I pray for Nora on a daily basis and am broken hearted with this news, BUT the text message your received was the exact same as the scripture lesson from our church service last Sunday and the basis of the sermon! See? Another sign. God is with us. More prayers headed your way.

  47. Heal Nora wholly and completely, Jesus. In one moment you can change everything for the better and we boldly ask for miraculous healing and change needed in Nora’s body. Make all necessary changes in her to give her life and longevity. Blow the doctors away! Comfort her family through the power of the Holy Spirit and let this tiny baby girl grow old and strong. Amen!!!

  48. Prayer for you, you dear, wonderful momma. Nora’s journey and your family’s journey is reaching so many and spreading beautiful examples of faith, and grace… My heart aches for your pain. Know that whatever happens, your decisions will be the correct ones as you have sought guidance from Him all along. Don’t question your decisions once made. Each one will be the right one.. Blessings and love and hugs

  49. Aleisa and William – Praying for you and Nora and hoping you will get many more days, weeks and even years with your precious daughter. She is such a fighter and knows nothing but your endless unconditional love. She is a blessed and beautiful little girl.

  50. I am praying for you and your family right now and I know that Jesus can heal Nora…by His stripes we are healed! God bless sweet little Nora and heal her we pray in Jesus name.

  51. Prayin for your sweet baby. I am an emergency medicine doctor at CCHMC. Back when I was a young doctor- one of my first patients was a sweet baby with T13. My time with her and her family has stuck close to my heart for the past 12 years. God is good- thank you for allowing us to follow along on her sweet journey.

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