Thursday, August 27, 2009

Weary and Waiting

It was a long night for Samuel, and it's been a long day so far. Samuel's oxygen to his brain stays very low, and currently his oxygen saturation to his body is quite low too. He is continuing to decline.

We had a long talk with Samuel's attending cardiologist this morning, and he answered all our questions. He says Samuel will not be a survivor, and he called it "inevitable." He encouraged us to talk about what decisions we want to make -- if we want a DNR, if we want them to do chest compressions if his heart stops, if we want to take him off all the machines. We have no idea how to even approach these questions.

We just spoke with the nefrologist (kidney doctor), and he told us dialysis is not a good option for Samuel, and he wouldn't do it if Samuel was his son. At best, he thinks Samuel would pass away less puffy. He said that medicine is out of options for our little guy, and what we need is a miracle -- which by nature don't happen very often, but sometimes they do.

I had a very restless night last night. I stayed with Samuel until 2am at which point I was falling asleep on his guardrails. We were up at 6am to spend more time with him until shift change. We went back to bed during shift change, though I don't think much sleep happened.

When we came back in to see Samuel, he looked signifcantly worse than just a few hours before. We shed a lot of tears this morning, and the chaplain spent some time with us. Many nurses have been stopping by and giving us hugs -- which I have to say surprises me every time. I don't know how they have the emotional margin to hurt with all the parents who go through this pain. One nurse gave me a hug in the middle of the hall earlier which resulted in me sobbing, and another hugged me in the middle of the cafeteria with the same result. I am getting used to crying in very public places. Even the girl who serves the cafeteria food asked how I'm hanging in there. Compassion is both a beautiful and painful thing. It hurts me every time people show me compassion, and yet it blesses me too. And compassion by nature hurts those who show it to us.

Bryan and I asked about a private room for Samuel because our little dock is in the middle of the CICU. There are no walls between docks, and the desk around which doctors, RT's, and fellows cluster is right across from us -- 10 feet away. There are curtains they can pull around our space, and they have done so, but we feel exposed. However, moving him is a risky proposition, and, again, I can't help but wonder if God has us in the middle of everything for a reason. How can we be a light for Him even in the midst of these dark days? I pray for grace to love others and to weep for and rejoice with others even as our hearts are heavy and burdened for our own pain.

We are weary. We are sad. It is painful to see our son this way. Honestly, he looks dreadful. I am so glad Caleb and Joel came yesterday and not today. God was gracious in that. We so appreciate your prayers. This could go on and on, and it could end very suddenly. When I look ahead, it's overwhelming to imagine some unknown number of these days still to come, but God has given us the strength and grace for each day, so I will trust Him to do the same for each and every day ahead. Keep praying. We all need it.


  1. Oh Kathryn and heart is breaking.
    May God hold us all close, especially you two and these precious boys playing at my feet. Lord, we look to You to heal this baby. But whatever You choose, may we trust You. Amen

  2. I am so sorry that you are dealing with this "inevitable" situation that the doctors describe. I know that the resuscitation decision is more than likely the HARDEST decision you will EVER have to make. I pray that God gives you the answers to these difficult questions so that you don't have to make it yourselves. We will continue to pray hard and continuously for you guys. Love you!
    The Tates

  3. I'm sending my love and prayers for your family. May you stay close together in love. I miss you, Kathryn, and I want you to feel better.

  4. I am praying and praying. God is with you and Samuel.

  5. Dear Kathryn and Bryan,
    Our hearts are aching for you. No one should have to face such a decision. May God guide you with what's ahead.
    Our prayers and love are with you.
    Jeanne, Tom and Price

  6. Beloved Bryan and Kathryn, If I could, I would gladly take some of your pain. Know that you are loved by God and by all of your family, and that this love is greater even than the horrible pain you are feeling. My heart is with you.

  7. Lord, comfort Bryan and Kathryn. Only You can comfort a mother and father's heart in these circumstances.

    Thank You for Samuel. What a gift he is to all of us.

    Carry Samuel in Your Everlasting Arms to Your Presence.

    Judy and Jim

  8. Our hearts are aching for you. Praying that the Lord will comfort you both and will give you wisdom and peace. Continuing to pray for your whole family. Love to you all.

  9. This is just so painful and frustrating. I don't understand it...all you want is for your baby boy to get better and to take him home...not to go through any of this.

  10. Dear Lord,
    Please hold Bryan and Kathryn gently in your hands. Surround them with Your light, love and comfort. For as words fail mere mortals, You can speak directly to Bryan and Kathryn's hearts. They need You and they lean on You for help, courage and strength. Samuel continues to love and teach all who meet him. But his parents' hearts are heavy. Carry them gently. Oh Lord. My constant thoughts and prayers are with all of you.
    Sharon Bigge

  11. We are thinking of you and praying now as we wait. What a journey. Father, please comfort our friends by your Holy Spirit. Give them the grace and peace in days and nights like these. Uphold them by your love and Presence. In Jesus Name.

  12. My mother and I were just on the phone talking about you, Bryan, and your three boys. I felt so heartbroken about the decisions you are facing, which I cannot begin to fathom. We are in awe of how many lives you have touched through your love, faith, and communicativeness. And those you and Bryan have touched will also be touching others in positive ways that cannot be fully anticipated. We hold you in our prayers constantly. My mother has wanted to respond to your letter, but health iproblems have kept her from the computer. We send our love and most fervent hopes and prayers for your family.

  13. Still praying. What an awesome testimony you all have and what a blessing little Samuel has already been to so many.
    So thankful his brothers got to see him yesterday. We're pregnant with our third right now, so I'm feeling all the more aware of the reality that we live in a broken world and we're not entitled to anything here.
    May God continue to wrap you in His arms!

  14. Dear friends, I'm sitting here with tears in my eyes. I cannot imagine what it must be like to be faced with such decisions. And I cannot imagine what it must be like to see your son like this. I am so grateful for the people at Egleston who have shown you compassion, even though I understand why it also causes pain. We are praying for you and hurting with you in this time. Please know that so many people are helping you to carry this burden, though I'm sure it still seems unbearably heavy. And God is carrying all of us! We are praying for God to make your decisions clear, for your physical health and emotional strength, for the impact you're having on those around you, for Samuel's health and comfort, and for a miracle!

  15. Dear sweet friends, how we love you and love this sweet baby. Thank you for sharing your hearts and your pain - we are praying without ceasing - God has put Samuel on our hearts and his story is bigger than we can even imagine. We love you!

  16. my heart breaks for you. We are friends of Marta and Adam in Harrisburg and I have been praying for you...God gives strength to the weary, hard to imagine your pain.
    Prayers from PA

  17. Everyone including Samuel is weary and understandably so. Again my heart goes out to you all. love and comfort be yours.

  18. Lamentations 3

    22 The steadfast love of the LORD never ceases;
    his mercies never come to an end;
    23 they are new every morning;
    great is your faithfulness.
    24 "The LORD is my portion," says my soul,
    "therefore I will hope in him."
    25 The LORD is good to those who wait for him,
    to the soul who seeks him.
    26 It is good that one should wait quietly
    for the salvation of the LORD.

    Psalm 91:2 I will say of the Lord, He is my Refuge and my Fortress, my God; on Him I lean and rely, and in Him I [confidently] trust!

    I trust that the Lord himself is showing you compassion in this trial, and though it is both sweet and painful to you, it is costing Him something as well. I am sure that it is hurts Him to see how you suffer. Jesus, who died for your sakes, weeps with you. I do too. I will pray that his presence would be very real to you and that it would be a sweet balm to your hearts while they ache. I will pray for wisdom in making decisions; I also continue to pray for healing for sweet Samuel. All my love--Ki

  19. Brian - you were such an inspiration to us over a year ago as we went through similar circumstances with Olivia. It broke my heart to read what you and Kathryn are going through. If you want to talk as we have been through similar experiences, please do not hesitate to contact us. We would love to be able to reach out to you and your wife.

    I know that many people have already told you this, but as I read your blog tonight, not only is your faith so strong, but you have come to realize this is in God's hands and that God does indeed have a plan for your little Samuel.

    I wish that I had had the same faith as you and Kathryn have had. I have grown so much by reading this. If this blog has had the same impact on others as it has on me, then Samuel has a made a difference in people's life.

    We are praying for you and your family and hoping that there is a miracle in the future for Samuel.

  20. Hey yall,
    It was good to meet you. Jennifer sent me your blog. I will try to stop in tomorrow and give you a hug. this is just the pits and we are all praying for you and the boys as well as Samuel.
    Love, Dr. P.

  21. I have no words...only prayers.

    My heart is with you,

  22. Bryan and Kathryn, I am so sorry to hear the latest news. We are praying for a miracle, comfort and wisdom.
    Blessings, Lydia and Jeremy

  23. Kathryn and Bryan: We all are thinking of your entire family and can only hope for a miracle.

    Garry Siegel

  24. Praying...I have no other words.

    You are loving Samuel well.

  25. Dearest Kathryn and Bryan,
    Though we none of us know how long Samuel's or anyone's life on earth may be, it is absolutely certain that little Samuel's life is already an epic. His is an epic life not just because of the momentous, singular medical crises he has survived one after another, not just because of all he has overcome, but because of all he has accomplished! He has already touched so many hearts and souls, has inspired so many people, more than anyone can know, and they in turn will touch others' lives. His heart beats for God and his birth and life are miracles of God's love and mercy. You both, Kathryn and Bryan, are mirrors of the Holy Spirit, with mercy and truth hung around your necks and engraved in the tables of your hearts. The hugs you receive, the words and kindnesses offered to you are no surprise to anyone but perhaps you. You have engendered them by the seeds of compassion, empathy and love you have constantly sown in others in the midst of your own immeasurable trials and pain. I pray for rest, renewal, comfort and well-being for each of you, certain that just as surely as Samuel knows and responds your voices and touch, you know and respond to God's. We all see it in your words, your actions, your deeds. In the hospital, as in your lives, you are His priests, serving others just by being yourselves. God chose you as the perfect parents for Samuel, and you chose the perfect name for him, Samuel, God's tiny priest. Through his heroic struggle to live and breath and grow, with his radiant angelic face, he inspires others with hope, love, peace and grace. Thank you for sharing him, yourselves and your lives so transparently with so many more of us than you can know. We love and pray for you, are constantly with you in your vigil.
    God blesses you, Mary

  26. These are such challenging times for you and your family, yet you have remained God's ambassadors even in the toughest circumstances. I'll continue to pray for strength and guidance for both of you. Thank you for posting the difficult updates and for being the loving Christians we all wish we could be when the road is so rough. I love you both so much.

  27. y'all are bright lights for Him even during this difficult time. pleading and praying to our Heavenly Father for you, your family, and sweet Samuel.

  28. Kathryn and Bryan,
    I am sad with you. I know that The Lord is walking with you through this. I found that when hard decisions had to be made that He was there helping me make the correct but difficult choice.

    My prayers are with you!


  29. praying, still believing in a God who weeps with you

  30. I cannot fathom how you are feeling right now. I hurt for you so much.

    The two of you and your precious little Samuel have truly been a light for God these past few weeks. Your faith and steadfastness has encouraged and inspired so many. It has certainly helped to remind me that these little day-to-day things are just that – they’re not crises. All of you have touched so many. We so appreciate both of you taking the time each day when you must be so weary to write and keep us updated so that we are able to share somewhat in this journey with you and know some specific things to pray about.

    You are constantly in our thoughts, constantly in our prayers, and I have shed so many tears for you. I pray that in some small ways, God would rest at least some of this burden on all of us who care about you to make your load even a little lighter. None of us may ever understand exactly why God chose this path for precious Samuel and your family, but I do have hope that one day we will all see how this very strange piece of the puzzle is an integral part of God’s beautiful and perfect plan. And perhaps you will have some understanding of why it had to be this way.

    You have brought nothing short of honor and glory to God through this journey – thank you for being such a true example of what it means to be faithful to God.

    We are continuously praying for you as you face the minutes, hours, and days ahead, asking Him to provide you with everything you need at each moment. We pray for His peace and guidance in whatever difficult decisions you are faced with in the coming moments and days.

    Love, The Padillas

  31. Thinking and praying for you all like crazy!!! I can't even imagine all the emotions that you are going through. Calling out to Jesus with you!

  32. you do not know but my spirit is joined to your through God's passion and compassion. I am holding your arms up while you walk through this by His Grace. Prayerfully, Dorothy H Foster

  33. I pray that our Heavenly Father will sustain you today and everyday and equip you for this shadow-filled valley you are going through. One day all tears will be wiped away.......

    Lizett Oosthuizen

  34. bryan & kathryn...brian & i have wept & prayed for you guys & little samuel. all 3 of your lives are such a testimony to the faith you have in our Father. we will continue to intercede on your behalves. all of our love...beth, brian, garrett & lucy

  35. Bryan, Kathryn, and sweet boys,
    Continuing to bring you to the throne of God, asking for grace, peace, comfort, compassion, healing, strength, endurance and above all knowing God's sovereignty in all of this. My heart aches so much for you. My heart also rejoices in the hope that you have in your heavenly father and his love and care for you.

  36. Bryan and Kathryn...I've been reading almost everyday and my heart goes out to you. I am so sorry you have to go through this. I am thinking of you.

  37. God Bess you all, I am a friend of A & J Russell, and have been praying for you and Sammuel since I saw a link on A's blog. My heart breaks for you, and I think the peace you have found in the Lord is an inspiration to all. It's simply the only way to make it through these times. I wanted to tell you about a book. It's called Two Sons, Twice Born by Hilda Moore. It is an amazing journey with Christ by an author who lost 2 sons during her lifetime. I will continue praying for your healing miracle, and that the Lord continues to provide peace for your heavy hearts. God Bless you and keep you.

    Christy Bennett