Thursday, May 5, 2016

Bent Knees and Broken Hearts

As you all know, our sweet Avelyn has been plagued with complications. Her prognosis going into her first open heart surgery was quite positive, but things have drastically declined since those early days. She has survived seemingly insurmountable odds in her short life, and yet we are only faced with more. 
Our precious Avelyn has struggled since her tenckhoff catheter placement and most recent heart surgery. She has packed on so much fluid that at times she was barely recognizable. She has struggled with pain and mechanical issues like a clogged and/or leaking PD catheter. She went days without dialysis due to these issues. Now she struggles with ventilation. She is on such high ventilator support it is causing damage to her lungs. Yesterday she developed a pnuemothorax and today her left lung collapsed due to trying to keep her right side elevated to heal the pneumo. We have also learned her kidneys are scared, meaning permanent damage-though we don't know the degree. 
When you add all this up it doesn't look good for our precious girl. We had a care conference today, where we met with those involved in her care. We were told that the chances of her surviving at all aren't good, and the chances of her surviving with a quality of life Sean and I would hope for her are quite slim. 
She was given a week to try and the extra fluid off. Getting her back to normal size will be a challenge that she may not accomplish. Even if she does manage to get back to her dry weight, she'll still have so many other mountains to climb. First and foremost, she'll have to come off the ventilator. We don't know if she'll be able to accomplish that, the doctors aren't too hopeful that she will. She's been ventilated for months.
While we have not given up hope, or given up on her, we have to be realistic. And that means the next couple weeks are likely all we have left with our precious baby. She has been put through so much pain, and while she continues to fight on, we do not wish to put her through any further pain unnecessarily. 
As one can imagine, Sean and I are beside ourselves. I am supposed to return to work tomorrow but can't bring myself to leave her room, let alone drive 5 hours away. We have been trying to savor every moment we can with our beautiful daughter.
She is such a precious soul. 
She deserves comfort and peace, please pray God sees fit to grant her such and that we may bear witness to it.
 

15 comments:

  1. My heart is broken. As I lay in bed with tears rolling down my cheek. Avie's story touched my life and my heart. I always anxiously awaited your blog as praying and hopeful! I am without words. God bless you all and sweet Avie!

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  2. My heart is breaking. I am so in love with this adorable girl and want so desperately to see her go home healthy. I have been worried since before her birth that we might not get to hold on to her, but she has proven herself to be quite the warrior. She has come through every surgery and procedure but just can't seem to progress to a point beyond critical. We love her so much and I can't and won't stop praying for a miracle. Father please hear our cries for mercy and grant Sean & Somer peace & our little Avie the miracle of healing she needs 🙏😩😪

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    1. Sonja I have been praying for you along with Somer, Sean and sweet Avie. I could not imaging what you are going through, seeing your baby girl in so much pain because her baby girl is in so much pain. Bless you and I'll keep praying for everyone. Lisa

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  3. Thank you for the update. You & Sean are far from alone as so many have taken this little girl as their personal prayer request, any/all of the info you share is greatly appreciated. No words for handling such a situation besides may absolute peace continue to blanket Avie, you, Sean & all everyone else who's pushing so hard for her healing.
    With the utmost respect & love
    Gabe Curde & family

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  4. Thank you for the update. You & Sean are far from alone as so many have taken this little girl as their personal prayer request, any/all of the info you share is greatly appreciated. No words for handling such a situation besides may absolute peace continue to blanket Avie, you, Sean & all everyone else who's pushing so hard for her healing.
    With the utmost respect & love
    Gabe Curde & family

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  5. Sean, Claudia and I have had you all in our thoughts and prayers. We are sending much love and support for you two and Avie. May she find peace and always know she was loved and adored by so many. Amazing people you two are, remarkable strides she has made and so many hearts she has touched.

    With love,
    The Estes Family

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  6. I struggle for words of comfort at such a time when hope strives against grief and despair. I pray that our sovereign Lord will grant a miraculous recovery, but if His perfect plan is to welcome precious little Avie home to await a heavenly reunion I pray for His gracious comfort and peace to you and all her loving family. Your sweet baby has already touched so many hearts with her extraordinary will to live. May God grant you strength and encouragement in the days ahead.

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  7. Even people you don't know are following Avie and praying for you all. You all have been through so much. I hope your job gives you flexibility you need at this time. You won't ever regret giving up your job to be with her.

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  8. I will keep praying for you her parents, and for little Avie; for peace and comfort for all of you and that God's love surround you and hold you close. I can't imagine what you are going through.

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  9. God Bless your family and especially little Avie. Prayers for peace and grace.

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  10. Somer and Sean,
    Our hearts and minds are with you and your family. Praying for Avie and your whole family. Praying for God to have grace and healing for Avie. I can't imagine the feelings in your hearts right now. God be with all of you!!

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  11. on this mothers day I can't help but think of you and your sweet sweet little fighter. I hope you get to hold her close and kiss those precious cheeks today. I pray for you all almost everyday. Avie has brought me closer in my talk with God, and I'm thankful to know your story and have the fortune to follow her updates good and bad. I know it may not make sense to you. bc we don't know one another, but I love that little girl and she has touched my heart so deeply. I pray for her to heal and be touched by God's love so very often, I want so much for your family to have only good things. Happy Mother's day, Somer! You are strong and wonderful!

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  12. on this mothers day I can't help but think of you and your sweet sweet little fighter. I hope you get to hold her close and kiss those precious cheeks today. I pray for you all almost everyday. Avie has brought me closer in my talk with God, and I'm thankful to know your story and have the fortune to follow her updates good and bad. I know it may not make sense to you. bc we don't know one another, but I love that little girl and she has touched my heart so deeply. I pray for her to heal and be touched by God's love so very often, I want so much for your family to have only good things. Happy Mother's day, Somer! You are strong and wonderful!

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