Three Little Birds

Story of 3 little birds and one who soared above us all.

a new day

We sat down to today with Lydia’s cardiologist and her cardiac surgeon to have the most unpleasant discussion of them all. Basically her pulmonary artery pressures are too high from all the insults her lungs have had with prematurity, surgeries and infections to make her a candidate for the Fontan surgery she would need down the road to survive. They may improve over the next several months if we can continue the slow and tedious wean of her ventilator. Things may change for the better, but at the moment, they are not terribly optimistic about her long term outlook. We are hoping she will be stable enough to make the medical flight back to Children’s Mercy PICU so we can finally have her close to us again and let her meet the people that desperately want her home and healthy. They don’t feel she’s a good ECMO candidate either so if she takes another turn for the worse, that isn’t likely an option. She has made great improvements before and we long to see her smiling face and balloon kicking dancing legs again.

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10 Comments

  1. Kathy Veatch

    Clay and Amanda

    My heart goes out to you both. God is the God of miracles and that is what I am praying for Lydia. He surely knew what He was doing when He gave her to you. You have showered her with love and attention and kept us all posted on her condition so we could bombard heaven with our prayers. Hang in there. I am lifting you to My Father, and if I know My Father, here’s what He’ll do. He will lay at your feet all the things you persue. It’s no bother for My Father. He’ll do it for you.

    Kathy Veatch

  2. Clay & Amanda–

    Your strength, courage, and wisdom inspire me. I can’t even imagine being in your shoes, but I know God is walking this journey with you and already knows the end. We are praying for you all. We are living proof that God is still in the miracle working business, so that is how we will continue to pray. We will also be praying that God continues to bring strength, wisdom, encouragement and peace to you both. “Faith is the substance of things hoped for, and the evidence of things not seen, all things are possible if you have faith of a mustard seed.”

    Laurie Bonta

  3. Earl and Ann Fruits

    You may not remember me, Clay, but I am Jerry, Jenny, Keri, and Yuri Keuhn’s mother. I am SO sorry that your little girl and your family is going through this and I will keep all of you in my prayers. Ann

  4. arlene

    As always, you and your family continue to be in my thoughts and prayers. My heart aches after reading this latest blog and I pray Lydia continues to amaze everyone with her strength and courage. (((((hugs))))))

  5. Paula Bull

    Amanda and Clay, you are in my thoughts and prayers.
    Paula Bull

  6. Susie Thornton

    Amanda and Clay,
    Your family is truly inspiring, as you face these trials together with humor and strength and humility. I pray that you can somehow be at peace about Lydia’s condition, knowing that the God of the Universe holds her in His hand. Blessings to all of you and prayers that she can fly home soon to be closer to those who love her so much.
    Susie Thornton

  7. Valerie Thomson

    Sending positive thoughts and energy your way. Lydia will get through this. There are so many up’s and down’s, and constantly changing outlooks, we are forced to live in a day by day world with our kids. Please keep the faith and know Lydia will overcome this hurdle, as she has proven to us all so many times before. Praying to get her home back to KC, stablized, and a recovery down the path of least resistance!

  8. Jen Deister

    Amanda and Clay

    Words don’t come close to what I am feeling for you guys. You NEED to know you are surround my love from friends and family. THAT is what will get you through this.

  9. Jay and Hope

    We think about you all of the time. We are confident that Lydia will make a resounding recovery. Our prayers are with you always. Keep the faith and we hope to see you soon. Love, Jay and Hope

  10. The trach could also help with that pressure in her pulmonary artery. The trach has been such a blessing for Parker.

    Do you have a cardio who also specializes in Pulmonary Hypertension? And a really good pulmonologist?

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