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Monday, December 10, 2012





  Noa Grace Rose
Oct 23rd 2012 - Dec 8th 2012


How can we measure or express to you the size of this void left in our hearts? Pain you can't imagine or prepare for, even with 20 weeks of pregnancy and 46 days of living with the reality and seriousness of how sick Noa really was.
We want so badly to hold her tightly to our chest so that she would disappear back into us, away from the relentless sound of the ventilator or tightening of her blood pressure cuff... or all the memories of the medical care that we tried to help her with. The storm has been subsided, and if she's not in Heaven yet, she's sailing there on calm seas in the arms of "The Captain of the Storm"- Jesus. The comfort we find in truly knowing and believing this bring a smile to our face, but it doesn't take the heartache away. Haunted by what could have been and what we hoped for.
                                                                                                                         - Our Lament 


Friday and Saturday
Dec 7th and 8th
leading up to Noa's death

On Friday morning when I went in to see Noa, she seemed the same. Justin and I both knew that the time was approaching when we would need to discuss the "next steps" with Noa's doctor in the event her kidney's didn't wake up. I sat down with the nurse before I even said hello to Noa and we did a little review of her night (meds, stats, behavior, etc). During our talk, Noa's doctor came in and sat down with me to chat about the plan for the day, but more importantly...what her thoughts were about the near future for N. 

The goal for the day was to go up on her fluids, continue to keep a higher blood pressure and give her a strong dose of Lasix. They also had started giving her an albuterol nebulizer to loosen some lung secretion, and made some adjustments to her ventilator (up on oxygen) to help with her lungs. There had been some swings in Noa's blood pressure which the nurse couldn't understand, but the doctor said could be because of any number of things, i.e. lack of kidney function, brain damage.

Other than the plan for the day, she wanted to have a talk with us about the time frame we were working with in Noa's care (and later I had the same discussion with Noa's nephrologist). She felt that by the end of the weekend, if we hadn't seen any change with the kidney function we needed to let the medical staff know what direction we wanted to head in.  There were 2 choices:

1) Discontinue intensive care.

2) Move towards surgery to repair Noa's CDH and continue with dialysis towards possible transplant. Although we haven't gone into detail on the blog about what dialysis would look like after CDH surgery (assuming she could even go through surgery), Justin and I felt that it wasn't a road that was recommended by the medical staff, nor any medical resource they had pulled from. There would be layers of complexities on top of what Noa would already be facing as a CDH child. The likelihood of 'quality of life', none the less survival was unheard of.

When I saw the nephrologist that morning, she told me that she felt Noa's kidney function would not return. And If by some chance, the kidneys did provide some urine, she felt they were damaged enough to need treatment at some point in her life. Either way, we asked Noa's doctor if we could get one more ultrasound of Noa's kidneys...just to confirm. 

Justin and I were heavy hearted all day on Friday. We didn't want to give up hope or believe what the doctors were saying, but it felt like without a miracle...Noa's road was narrowing. 

Justin was able to take his friends Dave and Ian to meet Noa on Friday night, to read scripture and pray for her- it was a very special time. 

When I went in to see Noa on Saturday morning, everything seemed to change. They had stopped giving Noa fluids because she wasn't tolerating it and in the end, the results of the ultrasound showed Noa's kidneys had shrunk significantly and the blood flow was also low- confirming failure. Dr Baxter felt that Noa was a little 'different' that day and at this point wasn't strong enough to make it through surgery. They both agreed that Noa's 'reserves' were running out.

They said they weren't in a hurry to get an answer from us, but they wanted to know if they should continue intensive care or decrease it. We left without giving them an answer...knowing that we had to actually sit down and have a discussion about Noa's future.

We came back to the RMH, put the kids down for naps, had our talk and prayed. We didn't want to make this type of decision...all the questions and 'ifs'. So many things to consider, so many unknowns. We wanted God to take this from us if he could. And even though we felt like cowards for feeling this way, we couldn't imagine living with any decision we had to make. But we knew.

We went to visit Noa that night, so grieved. Was our sadness a lack of faith? hope? She looked smaller than I had seen her in a while. They had taken alot of fluid off of her to get her comfortable. They were no longer pushing her kidneys since they expected no results...and discontinued the Lasix. We both spent time loving on her and then headed back to the Ronald McDonald House, so numb and sad. We sat in the entry area with the kids, just zoning out when I got a call to come back to the hospital right away....they had lost Noa's heart rate and couldn't get it back. 

When I rushed into the room holding Ruby in my arms...it was a scene I was familiar with. Instead of entering a dark and peaceful room...all the lights were bright, with nurses running around and medical supplies strewn about...but what was different was the nurse at Noa's side performing chest compressions. It was over. I knew it by looking at my baby's face. I told them to stop and let her go. We waited as they unhooked Noa from all her life support. Then they handed Noa to us... to hold our precious child for the first time. So wrong....

Our family had time alone with Noa and we will always treasure that. Oh God, we wanted her...we love her, we will always long for our daughter and look forward to finally hearing her voice and seeing her whole when we ourselves go to be with Jesus- our Wonderful Maker. We can't wait.

Thank you and bless you for loving our family and walking with us on this road. We didn't know what to expect or how it would turn out and we are honestly surprised. We had hope till the end. 

We've been wrapping up details here in Portland. I will donate the milk I've pumped, and we will work towards setteling Ruby and Emmaus back into a routine when we get  home. This is going to take some time...and we will probably always carry this hole in our hearts. Please keep praying for us and feel free to get in contact with us if you have any questions or just want to grieve with us....it helps.

Love Justin, Heidi, Ruby, Emmaus and Noa Rose.


32 comments:

  1. Oh Heidi and Justin. I don't think I can write the words that will take away all your hurt and pain. You are absolutely wonderful, placing Noa's fate in God's hands. I feel blessed to have been a part of her life. You are self-less, putting her needs before your own. I wish I could tell everyone how great you have been. I hope you do remember her good times and have many memories. I remember a day where I was on-call for ECMO priming and when I went to check on her the "boys" had bathed her and changed out her bedding and the room was so calm. How we talk about "when she was skinny on ECMO" and how she liked to have her mouth suctioned. I hope you know how much the nursing staff cared for her and about her, but we also cared about the both of you. Noa made the decision when she was done. She was definitely a fighter. I could go on and on. Please know that I am thinking of you and sending loving thoughts your way.

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  2. We've never met. I don't know any of you. I don't know Noa. But I miss her. I have worried about her worried about all of you. I miss Noa. I will keep your family in my prayers and will always remember Noa - especially when I think of CDH. May God comfort you. I grieve with you and your family.

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  3. Heidi, Justin, Ruby, Emmaus and little Noa

    My heart breaks for all of you and yet I know hard Noa fought and that she felt and still feels your love every day. I can't even imagine how hard this must be. I'm so glad you were able to hold her and spend that precious time with her. I know we've never met, but please please let me know if there is anything we can do to help. I'll continue to say prayers for all of you and hold you all in my heart. Blessings on you sweet girl and those who's lives you touched. Much much love and peace to all of you

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  4. I've never met any of you. I have followed little Noa's story since my church asked us to pray for her and you. I have checked for an update on her every night before going to bed. I have rejoiced in her progress and worried for her on her setbacks. She has touched my life and my heart. Your little angel is with her Maker now and she is watching over all of you. I will continue to hold all of you in my prayers. Take peace in knowing that your little Noa has reached and touched many lives and she was well loved, even by people who never met her.

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  5. My dear Heidi and Justin, I am so undone over this and do truly grieve with you. I know it's just a fraction of what you must feel and I know this isn't going to go away like so many of the other sufferings in life that we face. I so badly want her to be back in your arms, not gone. But I have to encourage you to be brave and hang on through this agony and don't let go of this beautiful life for one minute, even though you long to be with her. It's going to be incredible when you meet again, and this time here on Earth will seem so short. But for now, I love you and you are immensely loved and we honor you in how brave and selfless and honoring to God you've managed to be in this journey so far. What an inspiration. Noa knew your love and your courage and your prayers and had the gift of two parents who were giving her to Jesus continually. That's a gift most people never receive from their parents and that is priceless, eternal, profound. Well done Heidi and Justin. Now for God's strong love, his Peace that surpasses all understanding, some sleep and some rest for you. Grace. Her middle name. May you know Grace until you get to hold Noa again. With love, Jessie & Darren

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  6. I am so sad and heavy hearted for you. We have continued to pray for all of you often. You all have fought so hard and with grace. I can't even imagine the heartbreak and sorrow you are feeling. I do know that we serve a great God who will provide what you need each minute of the day. A loving God who only knows what you are going through. Although we haven't met our lives are connected in so many ways. Since we live so close is there anything we can do? Meals, shopping? We would love to do anything we can. Our love goes out to you and that sweet baby girl.

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  7. Justin and Heidi: You do not know me, but my husband and I have been praying for all of you since finding out about Noa through Jessie Clark. Our prayers, I promise, will continue for all of you over the coming weeks, days and months. Thank you for allowing us to share in your story. Mysteries we cannot fathom. God bless you, heal you, carry you through this time of immeasurable grief. With love, Elizabeth and Matthew M.

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  8. Justin and Heidi,

    I so want to make this pain go away for you both. Noa Grace will always be a special part of my life. She has touched me and people in ways that are normally not possible. We have cried, hoped, loved and prayed. As I sit and try to write this my eyes are full of tears, also of what might have been for you all. Know that you are loved, my baby boy continues to pray for Noa...he said last night in his bed time prayer "For baby Noa, please be good with Jesus." She is an angel, a fighter and a lesson of God's faithfulness. I am so honored to have shared this storm with you. Now we will move forward and daily pray that God will calm the waves of grief for you. PLEASE let us know if there is anything you need. We are far away but you are never a minute away from our hearts.
    Take care my brother and sister in Jesus,
    Love you,
    Nicola

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  9. Heidi & Justin. I don't even know where to begin. My sadness for all you have been through is a bit overwhelming. I have shed many tears over this precious little girl, but I'm sure it is few compared to you both. We were praying for a miracle & yet trusting that God had a different plan.
    As I read this updated blog post, I am thankful for His grace and mercy in taking her before you had to bear the weight of a huge decision. I find comfort in that.
    Our hearts are grieving for you. I wish so much that you were here for us to love on and walk beside you in all of this. Praying that your new Spokane friends will be able to do that when you return there. We will continue to pray that you would sense God's presence as you walk through this dark valley and that you would truly know Him as your comforter.
    Much Love, Sherry & Bryan

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  10. Rose Family....There are no words. My heart just aches for you. We will grieve for your sweet girl and will be thinking and praying for you. All of our love, Burns Family

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  11. Dear Justin and Heidi,

    I wept when reading your last post...Our hearts are aching for you two and your family. We are so sorry for your loss. While we were at the RMH getting to know you and your family, was one of the greatest things Drez and I could have experienced. You two are so strong and such an amazing family. We truly love you guys and if you need to talk or need anything please do not hesitate.

    To Noa, such a brave and strong little girl...the fight you had to live among us for such a short time will never be forgotten...May you look down upon your family and protect them and look after them and one day see them again...for you are an angel in the heavens, we all cannot wait to meet you again and spend our afterlife getting to know you. From our family we will never forget you...


    with all our love,

    Erick and Drez

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  12. My dear family,
    I have never been so humble and proud as I am at this time. You have shown all of us your love and ever lasting faith. You have shared with us this " journey of life " and allowed us all to experience the peaks and valleys of our beautiful angel Noa Grace.
    For this I am so grateful. Noa will always be loved and in our lives forever. She has made me a better person, never to be forgotten.
    Although my heart is breaking I am at peace knowing she is in loving warm arms and healing. I pray for grace in your healing process.
    As a parent all we ever want to do is wave the magic wand to make the hurt go away or to kiss the boo boo away. It has hurt to know as a parent there was nothing I was able to do to make it better.
    I love you,
    Eta.....Eta to baby Noa

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  13. What can we say that hasn't already been said so eloquently by others here. Please know that so many people around the country were following your journey and praying that everything would work out the way you wanted it to. Little Noa gave it everything she had to stay here on earth with you but her little body just couldn't keep up. Godspeed little Noa Grace Rose. - The Breen family

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  14. CCAG's prayer chain has been praying for your family and Adele Cor-Vey has been keeping us informed. Please accept our sincerest condolences. Your little Noa Rose has been bathed in prayer for God's perfect will. We will continue to pray that the God of all comfort will continue to immerse you in His grace and peace. You have a treasure in heaven awaiting a joyous reunion. Romans 9:38 says that not even death can separate us from God's love. Diane Barstow

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  15. JR and Heidi,

    I'm so sorry to hear about the loss of Noa. Thoughts and prayers to you and your family. Love you very much and pray for comfort during this time. Just know Noa is laughing and smiling in the safe hands of her heavenly father.

    Nuge

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  16. I'm reminded of the lyrics in a song (I know I've shared it with you in the past) "Jesus bends to hear you breathe, His tender hands are holding you tonight. His heart is ravished when you look at Him, and oh the endless mercy in His eyes...God is here little light." Noa's light endures. It passes through the gates of heaven and into the hearts of so many here on earth. I am so sorry Noa was only here for such a short time, I know she will always be with you -- in your sadness and your joy. I pray that God will protect your hearts and give you strength to endure.

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  17. Dear Heidi and Justin,
    You do not know me but I found out about Noa from my daughter Nicky in Austria.

    We were really saddened by the news that Noa had lost the fight. We send you all a massive hug and a touch from the king that He will help you all through everything. We will keep you in our prayers and we have been honoured to be a part of the journey.
    Love from the Aunties in England.
    Dee Stone and prayer group, Dorchester Community Church.

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  18. Dear Justin, Heidi, Ruby and Emmaus.

    Thank you for letting me and my family be part of Noa's and your journey for the past 46 days and 20 weeks before. We have been praying, thinking, wishing and hoping nothing but the best for Noa and you all knowing that 'The Captain of the storm' was always with you and us. We thank Him for ending the storm for Noa and know that from now on he has Noa at his side to guide you all. It is little angel Noa that will guide and protect her mom, dad, sister and brother from now on until you will meet again and have the joy of being with her for eternity.

    At this moment our prayers for Noa and you all come not without tears just know that even that we have never met your little fighter girl Noa in person she has made a lasting impact on our lives because we now know more than ever before what it means to fight until the end.

    I wish that Ruby and Emmaus will help you in finding a new routine in live like they balanced the last 46 days by giving you and us a smile when seeing them in the park, the restaurant, under the Christmas tree, ........

    Like Noa you all will stay in our prayers and in our hearts.

    with love and hugs,

    Nancy and family
    (Becky Rose's friend from Belgium, Europe)

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  19. I've been reading for a few weeks now and praying with the rest of those who surround me (and LOVE you) here in San Luis Obispo. Of course there are no words to help ease the pain you are feeling... I feel it too after reading the latest post. I will continue to think of beautiful Noa, and her faithful family. Something Pasture Thom said in a service at Mountainbrook several weeks back comes to mind...
    Man is like a breath; his days are like a fleeting shadow. Psalm 144
    Also...
    May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

    Love to you.
    Katrina

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  20. ohhhhh Hiedi, Its Tamara from way back,(Bakeman Lane Days.) I am just tuning into this story. I am speechless. I cant imagine the grief. My love goes out to you and your family. :( The sharing of your journey is a representation of your strength and honesty and very admirable. truly, Tamara

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  21. Too much for anyone to bear, Heidi. We are overwhelmed with this news. Please let me know when you are home so I can drop off a meal or take the kids for a walk or just to talk. We are grieving with you.

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  22. Hi Heidi and family. Noa was so beautiful even in the middle of all the tubes and wires. My heart is wrenched as I can not imagine the desperate ache you must feel. I want to help when you come back to Spokane. I don't know how to help, so please tell me what you need. I cry out to God for his Spirit to comfort as only He can. Love in Him, Charis

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  23. Our thoughts and our prayers are with you. We have followed little Noa's journey for months now. I can't even imagine the loss you are feeling right now. You were so blessed tho to have her even if just for a short period of time. I'm sure too that your blog of the journey is going to help others. You wrote from your heart, and it shows.

    Hugs,
    Mary & Hal

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  24. There are no words to take away your sorrow. You've been on my mind frequently over the last couple weeks, and I've taken a moment to pray each time. You guys are going through, and have been, such a deep valley. Apparently, God thinks you can handle a lot because He's certainly dishing it out. I am praying that God that would bind the wounds of your heart and body in the coming months (especially as you take care of yourselves and your two children). I am so sad that you lost this precious baby...my heart has been aching for you... Blessings. Dana Kangas

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  25. Dear Rose family, my heart breaks for you and I can't begin to imagine what you have gone through, are going through. Your strength through this time has been inspiring. I pray for peace for your sweet family and the opportunity for you to come back to SLO to be with loved ones. Much love, Kristin (& Eric & Benny too)

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  26. So very sad to read! May God who gave such a brief time with an angel from heaven, named Noa, keep your hearts safe, close and comfort you in this time of morning. He is Abba father. Love Francois and Roelien Pretorius

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  27. Heidi & Justin,
    I cannot fathom the depth of your grief, but I know that He cares for you, & that underneath you are the everlasting arms. Praying for your family whenever you come to mind...
    If I can be of any help or comfort, please let me know.
    Ruby Johnson

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  28. I went to take the decorations off the Christmas tree by your room and the first one I so very gently took off was your sweet Noa's. Unsure if it is to be returned to you or kept here I placed it in my pocket. After I finished taking the decorations off of the tree I returned to the desk where I took out Noa's ornament to look at it for a moment and I discovered the web address on the back. Your words are so beautifully said just like your beautiful daughter. As I sat here and read I realized I was crying and sitting at the front desk so I stepped to the back, my heart grieved for you! The pain of losing a child is unbearable at times and it is actually difficult to breathe, grief actually affects the lungs it helped me to realize this and know what I was experiencing. I too am grateful you did not have to make the final decision, I remember talking with Justin that weekend and him saying exactly that, "we don't want to make that decision". God heard your request. Thank-you for sharing your testimony and I will continue to pray the Father's peace over you all!

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  29. Justin, Heidi, and Family,

    This is Erica Layton, my son, Jake is in class with Ruby and I had been trying to find this blog since December but had the wrong address. Mrs. Getman put the correct one in her newsletter and I am just reading through your journey. Tears streaming as my heart breaks for all of you and what you have been through and continue to endure. Jesus does love the little children and I know your sweet Noa has been made whole and is wrapped in his loving arms at this very moment. I am in awe of your strength to share your story and will be praying for each of you that you will feel the peace and comfort that only our Heavenly Father can give.

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  30. My son has the same pre-school teacher as Ruby, and I read your blog on Thursday and Friday after I got the teacher's newsletter. I've been thinking about Noa all day. My thoughts and prayers are with your family. I am so very sorry for your suffering. Noa is a beautiful baby, and your story touched my heart and brought many tears, whether from grief or love I don't know because they seem the same in times like these.

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  31. Wandering through Googling about central lines I stumbled across your blog. From November 2012 posts I became interested in your NICU experience... Having recently spent a stretch of time in one myself, as I'm sure you can relate, I find myself googling things like central lines and medical hardware. Jumping forward to more recent posts I felt a lump in my throat having read that your little Noa did not make it.. Now I read past to this post. Why did I come here? It's not pure curiosity per say . my story is one that ended with the life of my child preserved by the Lord for now. Maybe it was him calling me to seek and know how blessed I am. Maybe I wanted to see more into the lives of the other families that I shared the NICU with. Silent struggles. Your loss is not one that I can fathom . your bravery to share your journey and to be so faithful in our Lord is absolutely beautiful beyond this earth. Thank you for sharing your journey and for being so brave . Thank the Lord for allowing you to be a conduit for this message of faith and surrender.

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  32. Wandering through Googling about central lines I stumbled across your blog. From November 2012 posts I became interested in your NICU experience... Having recently spent a stretch of time in one myself, as I'm sure you can relate, I find myself googling things like central lines and medical hardware. Jumping forward to more recent posts I felt a lump in my throat having read that your little Noa did not make it.. Now I read past to this post. Why did I come here? It's not pure curiosity per say . my story is one that ended with the life of my child preserved by the Lord for now. Maybe it was him calling me to seek and know how blessed I am. Maybe I wanted to see more into the lives of the other families that I shared the NICU with. Silent struggles. Your loss is not one that I can fathom . your bravery to share your journey and to be so faithful in our Lord is absolutely beautiful beyond this earth. Thank you for sharing your journey and for being so brave . Thank the Lord for allowing you to be a conduit for this message of faith and surrender.

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