Nora – 13 Days Old

It’s been a rough day for us which is evidenced by the fact that we’re still here in the hospital. We did have a nice afternoon with a sweet visit from Sophie. I can’t begin to explain what a neat thing it is to see these two precious lives right before my very eyes. These two lives, that by the very grace of God I said YES to, despite their possible “inconveniences” of being “unplanned” or “imperfect”. These two individuals were both very planned and very perfect!!

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A few hours later the cardiac team came to discuss Nora’s echo and EKG results. Basically, she has small ASDs and a medium sized VSD, neither of which would be causing her blue spells, nor do they require any immediate intervention if we were to decide to take that route. Our plan was to head home this evening with oxygen to have on hand should another episode arise. However, when we removed the oxygen it became quickly apparent that her little body couldn’t tolerate being without it. This came as quite a blow for me. She’d been doing so well, but turns out we’ve just traded one tube for another. I wondered out loud if we are simply just prolonging the inevitable for our own selfish reasons. I felt myself dangling from the thin wire I’ve precariously been balancing on for so long.ย  In Jesus’s own words I internally screamed,” MY GOD, MY GOD, WHY HAVE YOU FORSAKEN ME?” Just as I was about to “let go” the door to our room slowly opened and in walked a woman. I sensed immediately that she was overcome with emotion, but also wore a glowing smile. She proceeded to tell us how she has been following our blog for several weeks now and just had to come in and meet us. As she embraced me, my tears continued to flow, but for a very different reason. She reminded me of my great faith, how God has NOT let us down thus far, and of the multitude of lives this tiny, feeble little baby is touching. She had just resuscitated my faith in that moment and I began to breathe again.

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I truly believe that God sent Linda to me right at that exact moment to give me that big hug and that clear as day message that He has NOT forsaken me. He is very much present and is busy at work here. It was too perfectly timed to be regarded as any kind of coincidence.

Here’s a sweet picture from this evening:

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We are still here in the hospital because it was too late in the day to get all of the supplies we need to go home with (oxygen tanks, etc.) – Not necessarily for health reasons.ย  I’ll take that, as it could be worse!

Be strong and courageous. Do not be afraid or terrified because of them, for the Lordย  your God goes with you; he will never leave you nor forsake you. (Deuteronomy 31:6 NIV)

55 thoughts on “Nora – 13 Days Old

  1. Beautiful pictures, and I love how God sent Linda to you right when you needed encouragement. Because He’s big like that ๐Ÿ™‚ Praying for you and for the grace of God to carry you through every moment.

  2. May your Guardian Angles watch over you and your delicate little baby. Your messages keep us breathless and on our knees. May God continue to grant you whatever your needs be in these hardest of times. So much love is coming your way-from Heaven above and Earth below.
    Good Night, peace to you and your family and may God give you a most blessed day tomorrow!

  3. God is sooo good… He knows exactly what we need. His timing is PERFECT! May you feel His arms constantly around you & your family! God bless you.. Prayers being said daily!! Ps. Linda means beautiful!! what a beautiful blessing sent your way today!!

  4. “I wondered out loud if we are simply just prolonging the inevitable for our own selfish reasons.” – It’s hard not to question each and every decision you make when so much is at stake. Just know that you are making the best decisions for Nora with the best information you have at that moment. That’s all you can do. No one will ever doubt that your love for Nora is endless no matter what you decide or what happens. Soak up every moment you have. God is ultimately the one in control.

  5. While in the hospital with Kamryn, I was blessed by God’s timing. He always knew who and when to send someone to comfort and pray with me. I also learned that of there are not 6 people in your child’s room all at once your not in crisis. Praying for you kelli

  6. I PRAISE GOD FOR SENDING LINDA WHEN YOU NEEDED REASSURANCE. I PRAY THAT YOU ALL HAVE A VERY GOOD NIGHT. NORA IS SUCH A BLESSING TO ALL OF US. SHE HAS ALREADY TOUCHED SO MANY LIVES, AND HAVE BROUGHT SO MANY PEOPLE TOGETHER IN PRAYER, FROM AROUND THE GLOBE. I LOVE THESE PICTURES. THANK YOU AND YOUR FAMILY FOR SHARING THIS JOURNEY WITH ALL OF US. I FEEL LIKE I KNOW EACH ONE OF YOUR FAMILY, AND I LOVE YOU ALL VERY MUCH. I WILL BE SENDING UP MANY PRAYERS.GOD BLESS YOU ALL.

  7. You bring tears to my eyes! Your beautiful words and love for your family and faith in God touch me EVERY day! I can’t wait to see what eloquent words you write. I can’t wait to see how well little lovely Nora is doing. She is just a little fighter. You and your sweet girl have no idea how much you inspire people on a daily basis. When things calm down I would really love to see you again, and meet this sweet little Angel. Love and kisses to your entire family

  8. Praying for the Lord to continue carrying you all. Man, what a tribute to choosing life that first photo is! Aleisa, you are changing the world and people’s lives through your incredible faith and utter dependence on God. I know this has to be the most gut wrenching and utterly exhausting thing to go through but to see the way God is holding you up through all of this and to see His hands working so clearly, even when it (so normally) feels like He has left, is just regularly astounding. My heart cries out for yours. Sending much love and many prayers.

  9. Christ is being revealed so sweetly in you, my friend. I love you and am so thankful to have you in my life. Love the Linda story…Jon and I prayed last night specifically for encouragement from Blog world. He is so good.

  10. Your family is the last thought before I go to sleep and was my first thought when I woke up. Praying for you all at all times.

  11. What an amazing touch from our Father you received yesterday! I continue to lift you, precious little Nora, and your whole family up before the throne for His grace, mercy and peace. You all are amazing in your faith, your willingness to submit your will to His, and to be so transparent. Much love.

  12. Thank you Linda. 30 seconds after you were in our room I knew you were sent by God. Although by my wifes side I could not comfort her. I had no idea what to say in those moments because I was upset and feeling much like she was. Thank you for bringing her down “off the edge” and reminding us both it’s just a little oxygen. You spoke so sweetly to my wife and child and reminded us what beauty, love, and hope we have in Nora. We cried and laughed a bit shortly after you left our room. You were sent to us at just the right moment. Well maybe you were about 5 mins off…. ๐Ÿ™‚ Our faith grew stronger because of you. I hope you’ll make a trip to Hebron for a visit soon. Love……

  13. The Lord definitely works in mysterious ways! I admire you for being able to recognize all His works, and not just shrug things off as “coincidence.” Your faith continues to amaze and inspire me.
    Praying round the clock for your whole family…for peace, strength and continued faith.

  14. It’s so hard to read this post without wanting to give you all a huge hug and tell you “i promise. it will all be ok”… I am sending you so many prayers. I feel like I know that little Nora now and feel so blessed to follow her life’s story. God Bless you all.

  15. I am inspired by your blog, your family, your faith and sweet little Nora. You are giving hope to others who have children with a life threatening illness. Thank you for reminding me of the everyday miracles our special children provide. You all will be in my prayers.

  16. Wm and Leis, I hate that you are living with such anxiety, but I love that your daughter has such a following of prayer warriors, and has sent angels to visit at the right time. The only way I can help carry your cross from TX, is to keep you all in my prayers. I wish I could do more. I love you all so much. PS. I thought that first picture was of you and Nora, only to realize it was Sophie and Nora. Sorry, Sophie for mistaking you for a haggard, sleep deprived, middle-aged, postpartum mother! JK…You are still beautiful, Leis :)!

  17. I read this every day in anticipation for a miracle. I am so glad that Nora was given such wonderful parents to love her so much!

  18. There is no such thing as coincidence! God has the perfect plan for us and He is always right on time. My prayers continue to be with you and I may stop by later if time allows me to leave my desk for a little while. Stay strong and be encouraged!!!! God is with you.

  19. you and your family are awe-inspiring…..a true example of God’s love here on earth- continued prayers and blessings to you….

  20. God is still as present as he was during your pregnancy and her birth. I know things will betaken care of perfectly because God’s plans are always perfect. I will be praying that she soon no longer needs supplemental oxygen. Aleisa stay strong, I will be praying for you as well.

  21. We were down at Children’s yesterday for Wyatt’s PT and I thought of you all and said a prayer as I parked. And BTW, Nora looks so much like her Daddy in that picture! If you have any questions about oxygen at home, let me or Emily know – we can connect you to Jill, who has her daughter on O2 for a while now at home b/c of blue episodes, etc. Wyatt had those too a few times in the hospital and his little fingers still get a little blue sometimes. But it’s very scary to watch happen. Hold fast! He will give you the discernment and strength that you need, for what ever decsions are placed in front of you. And “Therefore do not worry about tomorrow, for tomorrow will worry about itself.”

  22. William and Aleisa, I was made aware of your story by a friend of mine. We had our son Tristan John go before us to heaven after 23 days last fall. We had to make such similar decisions to yours, with the exception of deciding whether to continue to carry the pregnancy, as we didn’t know about his Trisomy 18 until he was born. I clung to the truth of Psalm 139:16, “All the days ordained for me were written in Your book before one of them came to be.” The fact that God had not arbitrarily said, “Oh, I think I’ll bring Tristan home today if I get around to it,” but that He had intentionally and in His perfect plan written down each of Tristan’s days in His book (just as He has done for Nora) was a huge comfort. He knows how He will be most glorified in your lives, and in Nora’s, and He has written it all down. I will be praying for you as you work through each moment, trusting in the perfect grace He has for you. *Psalm 34* In Christ’s love, Taryn

  23. I am praying for you. I am praying for your beautiful daughter, who is a light in this world that God has provided. I can’t begin to imagine your pain but as I continue to read your journey I am assured that he has brought her to you because you and your husband are loving people of God who can handle this. I wont pretend I know how you feel, Ill never imagine, but I can see that there is no one better to handle this journey. I am overwhelmed every time I read your blog. I can’t make sense of my own emotions because I am filled with such love for this family who I have never met and for this GORGEOUS baby. You remind me the most important things in life, and for that I thank you. This isnt about me or any of the other people who read your blog but I thank you because in a time where most people would be too scared you are sharing your journey with us so that we may grow. Beautiful, you and nora, just beautiful.

  24. To your beautiful family,
    I’ve been following you and your living acts of faith since Mel shared your story with me. Although we don’t know one another, I want you to know I pray for your family and Nora of course. I also pray that I may work towards having the faith you exhibit each and every day. Your strength and faith inspire me. I am thankful God brought Mel in my life for lots of reasons ( I mean really, she is just awesome and talented beyond my imagination). I am especially thankful though that i can learn, grow and witness your miraculous life.
    God bless you all.
    Prayers your way!
    Amy

  25. Thinking and praying for you and your little girl all the way in sunny So Cal. ! I found your story on facebook and have been following you ever since. Thank you for sharing your beautiful daughter and story. God bless

  26. Deborah and I are praying for all of you. I hope that you don’t mind, but I shared this link with our Church. I figure the more prayers the better.

  27. I am so blessed reading your blog. You two are AMAZING parents and one of the most Godly couples I’ve ever read about. I wish I could meet you in person. Praying for you daily. You have a beautiful little family. In Christ’s love, Sam.

  28. I am one of hundreds, I am sure, who read your blog daily but can’t find the right words to say. We sit back and read and nod our heads in agreement with the comments. So I speak on behalf of the countless readers that you have allowed to share in little Nora’s life and say thank you. Thank you for teaching us about love, courage and above all, that God will carry you through. Thank you for reminding us that life is bigger than our work, our bills, our errands. What can be more important than our relationship with God or our family? Nora is a beautiful baby. Thank you for sharing her with us.

    • My heart hurts and feels your pain. Your beautiful Nora is God’s little angel, sent here on a special mission. Nora has affected us in ways we don’t even know. Your blog evokes feelings in me that make me aware of God’s presence in my own life. He truly will show you the way. Thank you for sharing your journey with us.

  29. I have been following your blog for days & am so touched by your faith. Your entry today took my breath away. I was diagnosed at the age of 31 with breast cancer. As a mother of four small children, my initial response was in inner screaming in my head of “My God, My God Why Have You Forsaken Me?”. It took awhile to realize God had not forsaken me but was rather holding me tighter than I had ever been held. That was 11 years ago.
    May God continue to hold & bless little Nora, you & your beautiful family.

  30. You have a beautiful faith and a beautiful daughter! I love the story you shared about the woman who visited you. I agree… In that moment (a moment when you SO needed Him), God used her arms to hold you. Such an amazing gift of grace! =) Praying for you from afar…

  31. We have been praying for Nora and all of you each day in class. The other day I forgot I say Nora in our intentions and one of my students raised her hand and said “let’s not forget to pray for baby Nora.” ๐Ÿ™‚

  32. I started reading your story a couple of days ago and it has deeply touched my heart. What a beautiful little baby. She is so precious! Looking at her pictures, you just can’t help but smile. Nora is a very lucky little girl to have been blessed with a family like yours and all the love that you have commited to giving her. I will be praying and hoping for the best for you. You are truly an inspiration.

  33. My sister sent your blog to me the very day I most needed to hear from our Father in heaven. It was Day 9 of your journey, I think. I’d just called out to God, asking if “just sometimes” it might be okay with Him if we give up the fight. At that moment I was led to read your blog and you used the exact words I had prayed. I knew, then, for sure, it was a message from God, lovingly carried to me through your eloquence. Your love, faith, and assurance have been an encouragement to me and thousands of others who read your blog daily. Thank you for sharing.

  34. You are a living real act of faith! I will pray and pray and pray for you and for me to find a way to have faith like you show.
    God bless your family
    Amy

    • Also I must have signed in yesterday incorrectly. I met you, your story, your courage through Mel. I’m so thankful God brought Mel into my life. She is just all around awesome and her God given talent is amazing. Because of what Mel I feel closer to God. That is pretty cool…..i am totally inspired by you all!

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