The last 36 hours Juliet has started struggling.  She was doing so good for so long and then overnight we noticed a difference.  Her first set back.  This is the day I was dreading.

The week we brought Jules home she had a few apnea attacks at night.  She would stop breathing for a couple of minutes and then come back fighting hard.  Super hard for Mom and Dad to watch, and we said our goodbyes a few times during these.  A couple of days ago she started having more apnea episodes.  Our first real setback.  She also has had to be on oxygen 24/7.  The minute we take her off of it she starts to turn blue.  Something we haven’t had before.  It’s crazy how quick it can happen.  I was just writing my post on how she hasn’t needed any oxygen, and 24 hours later we are on oxygen non-stop.

I thought I had prepared myself for this moment.  I had come to terms with the outcome that this little lady would probably face.  But a mammas heart never changes, their maternal instinct is fierce.  I tried to even keep a bit of a guard up, to prepare my heart.  I had grieved her once already not thinking we would bring a baby home, and now to grieve her all over again is hard to accept.  During her attacks I want to tell her to just let go baby girl, your paradise is waiting…but I just can’t give up on her.  I try everything to keep her here with us.  Usually patting her back or kissing her head, which seems to help bring her out of them and start breathing again.  I have also learned about the human body.  It just keeps fighting.

I never thought I would have to witness one of my babies die in my arms.  That reality is coming a little too clear.  Jules has surprised us before and pulled through, and she may do it again..but it looks like her poor body is getting tired.  And her momma is getting tired. Tired of waiting for her baby to die.  Tired of watching her baby in pain.  Tired of not knowing the future.  Tired of the unknown.  This is where the true test of faith comes in.  This is where I choose to believe that God is in control, that He’s got this.  That I can hand it over to Him and that He will not only usher my baby into His loving arms, which is hard to believe but are even more amazing than her mommas, but also that he will not forsake me.  That he will carry me through this.  That He will use this for good and make us more in love with Him after this.

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.  Isaiah 46:4

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.  Romans 8:28

I serve a great God and he has used Jules in a mighty way.  What an honor to be her mom and be used by God to share her story.

What an honor that God chose us to be her parents.

About a week ago Ryan and I were laying in bed and he said, would you take any of this back?  Would you change it?  All of me wanted to scream YES!  I’d take a healthy baby that I could grow old with and keep with me forever.  But after thinking about it that just isn’t true.  I wouldn’t change it.  I wouldn’t want to miss the chance of loving on this little angel.  To see God’s hand working right before my eyes, using Jules to touch so many lives.  To experience the love of people that is so deep.  To experience the love of Jesus that has held our hand through every part of this journey.  To grow in our faith and knowledge of who God is.  No, I wouldn’t change it.

I always seem to end in prayer request, but I always see them answered, so I’ll put you to work again:)  Please pray for Jules to be comfortable.  And for strength and peace for mom and dad as we have some tough days ahead of us.  The unknown may be the hardest part.

I would love to post in a few days that jules is doing great and enjoying time with her family, or that she is dancing with Jesus in heaven with her perfect body.  Only God knows which it will be.


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65 thoughts on “Struggling…”

  1. Dearest Allie, Ryan & family~ Your precious angel has been in the prayers of all your family at Elim. My husband, Steve, shared a moving chapter from his men’s Bible study book “Stepping Up: A Call To Courageous Manhood” that brought him to tears. Chapter 3 describes the author’s time in the valley with the birth and susequent loss of his granddaughter, Molly Ann. I was deeply moved by this story, and thought the way they honored the Lord through events during Molly’s short life may be of comfort to you during the trials you face. I guess the video gave additional details of how the author has Molly’s handprint in his Bible, on the page of his life verse. A beautiful reminder of how God is the author of life, and how every precious life is a means by which He can be glorified. Prayers for you & Ryan, as God’s entrusted caregivers for Juliet, as well as all 3 of your beautiful little blessings, and your extended family… are being lifted up in abundance by your family-in-Christ. Thank you for sharing your precious angel with thousands of us who are inspired by her, and your passionate love for Christ. We are humbled and honored to be on our knees with you…

  2. I pray that God provides you all comfort and peace. Thank you so much for allowing me to meet your precious baby girl. Thank you…

  3. Thanks for sharing your story. You seem to have the eternal perspective, which is what we all should have more often. Praying for continued strength, peace, endurance, comfort, wisdom and love for your family. Keep up those hugs and kisses to your sweet baby!

  4. Allie- it gives me comfort that maybe she and my little Uriel will dance together in the presence of God, however my heart is torn for all of you. you have my prayers and my tears and my gratitude for helping me see that none of us are alone in our losses. I feel so blessed to have been even a small part of your amazing journey no matter the outcome. It’s a testament to Gods power that through your family, that i don’t even know, my heart could be so deeply changed. MANY MANY thanks for being a true light in the darkness. Know that you are in my prayers every minute and that when we don’t even know what to pray for, God still knows what to do. Trust him, he healed me through you and i know he will heal you all as well.

  5. Your words and feelings bring me back to a very similar situation that my family has recently been throug. As I read your post I think about a song called All of Me, by Sanctus Real. You have to listen to the song, its so beautiful and talks about how it feels to love a child you may loose. Matt Hammitt wrote the song when his son Bowen was born with Congenital Heart Disease, I too had a son shortly after born with many medical conditions and one being very similar to Juliets. God is so big and so amazing and just as you posted you wouldn’t change a thing about the experience and opportunity to serve our Big and Mighty Lord. God is Good and he really does have the Whole World In HIs Hands!
    God Bless you and your family and our prayers are with you.

  6. Praying for you sweet baby girl, for comfort and peace. And for you for strength during the most difficult thing I can imagine as a mom. God bless and comfort you all.

  7. Ohhh sweetie!!! I just cannot imagine how heartbreaking and heart wrenching this must be!!! Please know that you have prayers covering you and your precious, adorable little family and your tiny little angel. Whether she wears her wings here or in paradise, she will forever be your angel. God is with you…He is right there!!!!
    Much love to you!!!

  8. I don’t know you, but as a mommy, my heart aches for you. Like me, there are thousands of mothers praying for you and I just pray that we could each bear a portion of your burden so you could just feel comfort and peace with your sweet baby. May the Lord wrap you all in his arms today and in the days ahead.

  9. So heartbreaking praying for you! I just had my daughter at 26 weeks on November 4th. She is 1 pound 8 ounces today and also has a unilateral cleft lip and palate. No associated syndromes that we know of. She has an older brother (6) and sister (5) just like Jules. I thought we had it hard but your story has totally changed my outlook. She is so beautiful!! You are sick an awesome mommy!

  10. My prayers for your family and for sweet Jules continue. May she be comfortable in the peace of her Fathers arms, and may your family all be at peace in the joy of knowing you were chosen to be her family, to help her through this and may timberjack the strength, warmth, and love of the Father as he guides youlovingly through these days. Peace, strength, and love be with you all.

  11. Oh Allie, I could tell what a special person you were when I met you while visiting Emily. Through all of this, I can see clearly why my sister feels honored to call you her friend. My husband, children and I are praying like crazy for all of you. So much love to you, sweet Allie.


  12. Hi Allie,Ryan, and family, Reading your latest post breaks my heart…but, oh, how I thank Jesus for His never ending love and care and watch over Jules and all of you. How He loves you. We are praying for His perfect peace for all of you and especially for Juliet. Love and prayers, Marcia, Marin, and Justin in SD.

  13. My thoughts and prayers are with you. A friend shared your blog on her Facebook page. So the testimony of Juliet goes out to the world and many you would NEVER have know are hearing of the love of God and strength of faith in Him. I pray for the relationship in your marriage. Hold tight together and forgive each other. You eaach will react differently and at different times. And that is ok!! You will not always be able to be there for each other. Forgive eachother for that. I hope that Ryan is getting lots of hold and hug and bond times as well. He will come home tired but so much needs this time with his littlest lady. God is our strength and our help Hold tight. He is there even when you cannot feel his presence, even when you cannot pray, even when your heart tears and rips. He will see you through.

  14. Daniella Trevino

    I came across your story on Facebook. I felt compelled to know more. So here I am on your blog. I too was gifted with an angel not for this earth 13 years ago. She lived 7 days. So I too feel your heartache and pain with all my heart. I pray for peace and comfort for your little one and your entire family.

    Bless you all,

  15. Praying for you and dad and Jules with all the strength and love of my heart! We serve a great God and I can see you know that and are a GREAT testimony of that! I am blown away by your strength and trust in Him and pray that you will enjoy beautiful Jules with all that you are forever, regardless of the outcome! How lucky she is to be born into such a wonderful family!!!!

  16. Sending prayers your way for peace for you, Ryan and your “big kids” and peace for baby Jules. I have been truly inspired by following your blog. I have an entire group of moms at my church lifting you all up in prayer.

  17. I just came across your blog and read your story..and wanted to let you know that my heart is breaking for you..Your family will be in my prayers..and sweet sweet Juliet she is absolutuly beautiful. I pray that Jesus wraps his arms around you all and gives you peace and strength and guides you through the days ahead.

  18. My heart goes out to you and your family. Praying for peace, strength and comfort for all of you. Sweet baby Jules has touched so many and so has the strength you have shown. I can not imagine what you are going through with the uncertainty. Thank you for sharing your story and know that by doing so you have the arms of many hugging your family as you go through this.

  19. Prayers you have !! It takes a strong set of parents to do this & Gods got his plan. We have lost a little & its not easy, but you do get to where its hard watching them suffer !! And your are right only God knows the future !!! I just love looking @ pictures of your beautiful family & I check almost every day to see if you had a chance to post anything on Juliet & family. Just enjoy all the time you have & I know you all will !! It is so touching & sweet to see Tate & Kinnley in pictures with her !! Keep us all posted….but put Juliet first !!! Will keep you all in out prayers.

    In Christ,
    Susan Howard
    South Carolina

  20. Having survived the death of my daughter, I can so clearly recognize the grace in which you have been given, to walk this road. You are bringing glory to His name and so is Jules!!!

    Jeremiah 29:11 I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you. Plans to bring you a hope and a future.

    I remember whispering into my daughter’s ear, as I cradled her in my arms, “it’s okay to let go, He is waiting with open arms”. Never had I ever thought I would say those words to one of my children but I did and it was the start of me letting go.

    I will be praying for your comfort and peace in the coming days and also for your sweet Jules comfort too.

  21. Ryan and Allie, know that we are praying for you continually. I know this is not an easy road to travel, but the Lord is right there by your side and knows the outcome. We love you bunches!! May the Lord of Peace give you that peace. Jules is blest to have you as parents.

  22. I am praying that whatever God has in store for you it is bigger and better than you ever thought possible. Losing a child is HORRIBLE and I wish for you all the strength and comfort of our Lord Jesus Christ whether he chooses to bring her home or leave her with you. Your family is an inspiration to all who have come to know you. Prayers your way.

  23. Praying for you. We don’t know what the future holds for any of us. But we can be sure who does hold our future and that it is the perfect plan.

  24. We’ve never met. I am Jaclyn’s MIL. One of our boys died when he was 4 1/2 years old. We were warned that 9 of 10 marriages fail after the death of a child. We survived. Be careful to look out for each other. You will each grieve in different ways at different times. Allow each other that space. God did not cause your beautiful baby’s condition. It’s part of living in a fallen world, but He promises to hold us always in His loving arms. He protects us spiriually and will cause even the trees and the rocks to cry out in prayer on our behalf when we are hurting so much that we can’t pray. He has given you an army of believers to hold you up. Lean hard. Our prayers ae with you.

  25. Praying for you and your little angel. This verse came to mind:
    “The eternal God is your refuge and underneath are the everoasing arm.”
    Deuteronomy 33:27
    May His arms hold your family tight!

  26. It’s so tough to have to sit there and wait. That inner turmoil, the stomach that refuses to relax. I’m so sorry for your pain and that of sweet little Juliet. G-d I’m sure is preparing you in some great way to share what you’ve learned through this experience. This will continue to touch lives long after everything is said and done.

    My daughter Terah, lived 72 hours after her birth. But the morning she died, G-d gave me a scripture to let me know that she wasn’t going to make it, but everything was in his hands. Her death while shocking, was a confirmation of the scripture that was revealed. Her story continues to live on through my memories. The one thing that I learned through the experience was that, we have no guarantees here on earth, except that our Saviour lives and where He is, there will we be also. I look forward to the day when I can meet Terah face-to-face.

    Thank you from the bottom of my heart for sharing your stories, your loves, struggles and thoughts. My heart and prayers will be with you as you go down this lonely path. I will continue to pray for physical healing for either here on earth or to be healed forever.

  27. allie.. you have blessed so many of us with your words of faith, strength & wisdom. its our time to bless you. I just keep praying for your beautiful family & hope that you feel the prayers from all that u have touched. I pray that you can feel the lord holding you during this time as well as after. the lord knew exactly who to place jules with. she couldn’t be loved greater by anyone else besides the lord. he choose the four of you! what a brave little fighter you have. when I was a teen I wrote a poem angels all around. that’s just what you have in your arms.. an angel!

  28. Reading your blog just breaks my heart. I can’t imagine what your family is going through but God will bring you through it. Praying for comfort and strength not just for Jules but the whole family. Praying your family and all the unknown moments, minutes, hours and days ahead. God’s Blessings.

  29. To Juliet’s family,
    I am sending you all the prayers 1 person can at the moment. Your precious little girl, daughter and sister has touched every one of our lives in so very many ways. We have all loved to hear how great she was doing and so thankful you have had to get to know this little angel even more. Yes it is God’s plan that we all meet him someday and we never know when that may be…………my heart is saddened that she is struggling as well as the rest of you. Please know we are all praying for your little Juliet. With tears, love and a hug if you were next to me. Peg
    Please know there are many many prayers out there for you all.

  30. Sweet Allie….praying for a peace that passes all understanding…..for all of you. My heart grieves with you at this time of uncertainty. Your faith in God has blessed me many times over.

  31. Oh, the love mothers show to their children. We all know that our days on earth are numbered, some are shorter then others. I really had wanted to come and see you this last weekend (my daughter has been emailing you), but then a friend of the family suddenly lost their 3 year old daughter to a stroke and I ended up going to the service for her. I really would still like to get together with you and show you our memory box of our dear daughter that died of trisomy 18. Your story has been so dear to us as it seems so close to our hearts. Will definitely pray for you all. May Juliet have comfort in the time she has left here on earth, and may each of you find peace and contentment in whatever God has in plan for you. Email me if you still feel we could come up there to meet you guys and to meet your dear sweet daughter if it is so meant. I don’t want to infringe on time that you could spend with her since it seems she is struggling so, but would love to come if it works out.

  32. I can’t stop thinking about you, your family and baby Jules. You are not alone and in many prayers. Your strong faith is a true testament to others <3 This is an unimaginable struggle you, Ryan and the kids are dealing with but the only certain thing is God is watching and and will be waiting for Jules when he is ready. God bless your family!

  33. Hi, Allie & Ryan,
    My heart is breaking while reading this. I don’t know you personally, but I have been praying for you & your family since before Jules was born. I believe this little Angel was born to touch all of our lives for a reason. Only God knows what’s in store for all of us. We must Believe that His plan is greater than anything we have here on Earth. Some day we will know what that plan is & be comforted by it.
    My youngest daughter Cailie is now 12, but she was born with several birth defects & we didn’t know if she was going to live beyond her first days. Even the Doctors didn’t know. But she is still here & loves life to the fullest. She loves animals & understands them more than she understands people. She is a fighter as she puts her older sister & brother & certainly her father & I through the wringer with all her inquisitiveness about anything & EVERYTHING!

    Take care & just love your little girl,

  34. Father, be so very close. Father, bring comfort and healing and peace and tender, tender moments. Surround Jules’ family with Your grace and carry them through…xoxox

  35. Sweet Lundeen Family,
    There just really aren’t words. Our hearts are with you and we will not stop asking God to surround you with His love, comfort, peace and kindness. Xoxo

  36. Praying for peace, comfort and strength. May you feel embraced and surrounded with so much love and gentleness as you walk through your journey together.

  37. Syneva Richardson

    Prayers for comfort to little angel Jules! Prayers of strength and comfort for mom and dad, you have done a remarkable job with your situation.

  38. So sorry for these difficult times–my heart goes out to you and little Jules and just love her for the rest of us because we so want to help you…..

  39. Ardis (Olson) Johnson

    We have learned to love you…….all, and our prayers are for you each day, Knowing that our God is able to give you the strength and peace that you need. Jules is so precious.

  40. Having a little one dancing with Jesus (as you put it) I know how hard it is to let go. But I also know how much sweeter the thought of heaven is because of it. Praying for peace and comfort, for strength, for the rest of your family too. I remember how hard it was to explain to our 4 year old that his sister was in heaven. Praying for wisdom for you and Ryan and understanding for your children

  41. I can’t even remember now how I got linked to your blog. But I have been following since before Jules birth…..and praying…and rejoicing in all the good days God has given you with her. as a mama myself, my heart aches so much for you, knowing Jules’ time is limited and hearing about her struggles. I will pray for her comfort and I will pray for you and your family….Hugs.

  42. I am keeping Jules & your family in our familys prayers . The future is unknown but one thing is certain . She is and will be held in Jesus arms.

  43. Praying for comfort, peace, & wisdom. Your story has touched so many. God has & will continue to bless your family! Thank you for sharing your story with all of us!

  44. Tears for you, and for sweet baby Jules. I have prayed for her since I first read of your story, while you were in labor. I prayed you would hear her voice and that she would breathe air into her lungs. I rejoiced when she came home and thrived. I find myself checking throughout the day for updates on how this angel is doing.

    My heart hurts that her journey may be nearing the end, though I know the next chapter is so much richer for her.

    I have introduced Juliet to my 3 children – 9, 11, & 12, so they too may see how beautiful she is, and that beauty comes in many different forms. They, too, agreed she was amazing and wanted to know more about her and her story.

    Prayers that she is comforted and that whatever God’s plan is for her, it eases her struggles. Prayers that God gives your family comfort and peace, too. I know that you cannot prepare to say good-bye to a chld, and my heart aches for you. Your family will be close to my heart and thoughts as your journey continues.

    God Bless!

  45. Dear Allie and Ryan you have been amazing through this all, and will continue to find that strength and faith that you all know is there. I can not imagine in a million years what this is like. We will pray, and look forward to more posts.
    Love from all of us.

  46. Praying for comfort and peace for all of you. I can’t imagine being blessed with such a beautiful baby girl and having to let her go :( My heart breaks for all of you but one day Jules will be free from pain and with the Lord. Love to you all!

  47. You have been in our prayers everyday since I start following and falling in love with your story and family. My hearts for you as a mom of four I can just feel your pain and the joy of Jesus at the same time. Jules do your best to hang in there for your mommy and daddy, You are one loved little lady. Trust in the Lord is sometimes a hard thing to do but it’s the only thing to. do. I pray today for you and Jules to have some peace and strength for today, remember go day by day and take the whole day in. Tomorrow will be there waiting for you, but today is going by fast so live for today and know that you and your family are well loved and a lot of prayer warriors are out there!.. blessing to all of you


  48. I have been following your journey with Juliet and the rest of your beautiful family. God brings you all to my mind several times a day. Please know you are prayed for.

    A psalm that helped me through some hard times in my life is Psalm 121.

    “I will lift up mine eyes to the hills. Where does my help come from? My help comes from the Lord who made Heaven and earth. He will not let your foot be moved. He who keeps you will not slumber. Behold He who keeps Israel will neither slumber nor sleep. The Lord will keep you from all evil. He will keep your life. The Lord will keep your going out and your coming in. From this time forth and even forevermore.”

    May God lift you and hold you and your family. Praying for each of you and for each of your hearts.

  49. Allie and Ryan,

    Praying for strength and peace for all 5 of you as you go thru whatever God has ahead in His plan. God has continued to use Juliet to touch more lives for Him than you will ever know. You are continually in my thoughts and prayers.

  50. I am praying for your family and your sweet baby Jules. I have been following your walk like many since you found out about Jules having T18. What a miracle of time you have with Jules. Our daughter Abby who died of t18 never rested in our arms, but walked right into Jesus’. I pray that God do his will and hold both your hands though this journey. I too wouldn’t take a day back to change anything about our outcome. Our Abby touched our lives and many others too just from my womb and I’m blessed just to be able to have loved on her and to be her mama. Keep enjoying every minute you are blessed to hold her.

  51. I haven’t stopped praying since I first read your blog about Jules and I will continue to lift you all in prayer. God’s peace and blessings to you and your family.

  52. Love and prayers. So thankful our God is so good, and His arms are more than big enough to hold this all together and make His love shine.
    Isaiah 25:1-9
    Lord, you are my God;
    I will exalt you and praise your name,
    for in perfect faithfulness
    you have done wonderful things,
    things planned long ago.
    2 You have made the city a heap of rubble,
    the fortified town a ruin,
    the foreigners’ stronghold a city no more;
    it will never be rebuilt.
    3 Therefore strong peoples will honor you;
    cities of ruthless nations will revere you.
    4 You have been a refuge for the poor,
    a refuge for the needy in their distress,
    a shelter from the storm
    and a shade from the heat.
    For the breath of the ruthless
    is like a storm driving against a wall
    5 and like the heat of the desert.
    You silence the uproar of foreigners;
    as heat is reduced by the shadow of a cloud,
    so the song of the ruthless is stilled.
    6 On this mountain the Lord Almighty will prepare
    a feast of rich food for all peoples,
    a banquet of aged wine—
    the best of meats and the finest of wines.
    7 On this mountain he will destroy
    the shroud that enfolds all peoples,
    the sheet that covers all nations;
    8 he will swallow up death forever.
    The Sovereign Lord will wipe away the tears
    from all faces;
    he will remove his people’s disgrace
    from all the earth.
    The Lord has spoken.
    9 In that day they will say,
    “Surely this is our God;
    we trusted in him, and he saved us.
    This is the Lord, we trusted in him;
    let us rejoice and be glad in his salvation.”

  53. Oh Allie, this momma’s heart breaks for you as you ride this emotional roller coaster. Praying for you and Ryan as parents and praying for precious Jules. {I pray for you when my little ones wake me in the middle of the night.} The Lord knows what each of you need and He knows what is best for you. I am praying and urging you on in your faith. “Blessed is the man (and woman) who remains steadfast under trial, for when he has stood the test he will receive the crown of life, which God has promised to those who love Him.” James 1:12

  54. Praying for your family and the all the unknown moments and days ahead. I have 3 healthy children and I could not imagine for one moment what you are going through but you are right~ Jules has been a gift! Your story is so touching and as I read this blog today I could not help but cry….THANK YOU so much for sharing your daughter with us!
    We all need more angels in our life

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