Monday, August 24, 2009

It's Up to God...

Bryan and I are sitting with our sweet Samuel now. We've decided to stay at the hospital again tonight. It was a hard day for me and B, though Samuel has steadily endured it. Earlier in the day, one of the cardiologists, who isn't exactly gentle in his delivery, told us that he's very worried about Samuel and doesn't think he will be a survivor. He says Samuel is much sicker today than he was last week. He suggested we have him baptized if that's something that's important to us and said that he thinks Samuel could go quickly if he starts to go downhill. This wasn't surprising news to us given yesterday's scare.

Despite that "meeting," Bryan and I had a relatively calm and even joyful afternoon. We read to Samuel, chatted with Richard (our nurse), laughed over lunch, etc. It's kind of amazing to me when Bryan and I are genuinely able to laugh about something in these days. And yet it happens pretty often. I am thankful for the joyful moments and a funny husband.

The doctors had their weekly cath. conference this afternoon, and honestly, I had kind of forgotten about it until the same cardiologist I mentioned above wheeled his rolly chair over to Samuel's station. The doctors spent a long time discussing Samuel's case, and the conclusion was that they are out of ideas and options for Samuel. They don't really understand what's going on, and though they tossed out many ideas in the conference, there were always more reasons to not pursue a course of action than to pursue it. He mentioned ECMO (bypass machine), dialysis, MRI, CAT-scan, surgery, heart transplant, heart/lung transplant, etc, etc. They even concluded that the new option from this morning to repair his pulmonary valve in the cath lab, was based on faulty information from the echocardiogram. Essentially the doctors think they're all deadends for Samuel. This doctor told us we need to start considering how to proceed if Samuel's heart stops -- whether or not to resuscitate him. He even mentioned the possibility of taking Samuel of all the machines at some point and letting him go on his own.

Over the next hour, we spoke with several doctors who gathered around. One is our pediatric cardiologist, Dr. Videlefsky, who we like very much. He has called the hospital every day since Samuel's birth to check on us and Samuel. When I saw him coming, I just felt so bad for him. I know that sounds weird, but this situation has been truly hard on him. However, I was so glad he came to talk to us because he is so kind and gentle in his delivery and was very concerned about our well-being. He told us that he just doesn't understand what's going on with Samuel. He can't figure it out. It is so frustrating for him not to have answers for us, and he repeatedly asked us what we understood, if we had any ideas we wanted them to pursue, what our thoughts were, etc. It's not often we're asked what our thoughts regarding Samuel's care are. He pleaded with us to let him be a mediator with the cardiologists here if we have a course of care we want the docs to pursue. I think he was even teary-eyed numerous times in our conversation. I think compassion must be a really trying attribute to have when you're a doctor. It must be so painful to watch others hurt so much and then not be able to ease that pain.

His one idea is to call a doctor he knows at Stanford who "thinks outside the box." He said he doesn't want to give us false hope, but he wants to make sure no stone is unturned. He confessed that his greatest fear is that the doctors are missing something, but he doesn't think it's the case. He remarked how patient we've been and how well we've handled all of this. Another doctor in the circle, Dr. Kim, said that he hates that we're having to have these conversations, but that it's been such a pleasure to interact with us, and he doesn't know how we're doing it. It was a reminder to me that we can show God's goodness and faithfulness even to these doctors.

Anyway, the gist of all the doctors' input is this: we're at a deadend with Samuel's care. They don't have anything else to really try, and they say the course ahead is pretty clear: the doctors do not believe Samuel will survive. During one of the most terrifying conversations that a parent can ever have, Bryan and I were surprisingly peaceful. That can only be from God. I kept thinking, "Ok, it's in God's hands." And truthfully, it always has been. In essence we're in no different place than we've always been -- in God's care. It's up to God, and it always has been. So the doctors are at the end of their resources and knowledge; God is not. I don't know that God will heal Samuel, but I have no less confidence that He can. And if He does, what a way to get all the glory -- when medicine can't take credit for it. In fact, Bryan has thought for awhile now that if our Little Mystery is to get well, it will not be from medicine. We are still peaceful. We know the road ahead is likely one of hardship and pain, but we don't feel like it's written in stone. And we continue to call on God and ask for His healing and grace.

One other thing the doctor's mentioned is genetic testing for me and Bryan. They wonder if there is a connection between my two miscarriages and Samuel's condition, and they think it's important for us to explore that before we have more kids. In some ways, this was the hardest to take because it was unexpected and threatens my dream for more children. But, yet again, this is God's too. He doesn't make mistakes. And I trust Him in this as in all things.

So, God, here we are. Waiting. Samuel is Your child above all else, and our desire is that You do a miracle and heal his whole body -- his lungs, heart, kidneys, and liver. We would love for You to show Your power in this way and to draw the hearts of the doctors, nurses, RT's, and other parents to You. I'd love for You to draw the hearts of those who read these words to You. There is no other place to go with our burdens. And yet, we want what You want, and we surrender our desires to You. Samuel is Yours, and we open our hands and trust You. Carry us through these days, show us Your continuous grace. Use our story for Your greater story. We love You no matter what lies ahead. Grant us strength for each moment, and hold Samuel close to Your heart. Amen.

41 comments:

  1. Thank you for that amazing prayer. I too just prayed that with and for you. Trusting tonight like we did the first day of news of Samuel. Our hearts are with you as you wait. We love you dearly.

    ReplyDelete
  2. I am just so sad for you guys right now. My heart breaks at the thought of what you have had to endure the last couple of days. However, I too still hold out hope and belief that our God can heal Samuel. I will not give up that hope and will continue to praise him as he gently walks beside you during this time.

    Lord Jesus, your wounds have healed us of sin, of darkness, and of brokenness. Lord we ask boldly, loudly and persistently that you would heal Samuel Erik Apinis. You have defeated death and we pray now that you would defeat the sickness in Samuel's body. This is desire of our hearts.

    In the mighty name of Jesus.

    ReplyDelete
  3. It looks like you have amazing doctors. I am impressed. Compassion can be a burden sometimes yet it is the most amazing trait of humanity. All my love goes out to you guys, no matter what the future holds. It seems so inadequate to type this in a message but I hope you can feel some of it anyway.

    ReplyDelete
  4. Make Samuel the "apple of Your Eye", Lord.

    The Wimberleys

    ReplyDelete
  5. The Green's are thinking and praying for you. Your strength is inspiriing.

    ReplyDelete
  6. Hi...I know we don't know each other. I came across your blog from a friend on Facebook. I'm a nurse at GI Care for Kids...Scottish Rite's GI group and I attend Buckhead Church. I just wanted to tell you, for whatever it's worth...that Samuel's life has already begun to change the lives of others (including mine) and I know this is in Gods's hands! Hundreds of people right now are witnessing your faith in God and that is such a beautiful testimony of His ever powerful love for us, his children. You will be in my prayers...God bless!
    Lindsay Hooten

    ReplyDelete
  7. Kathryn, I don't think I've seen you since high school days at Northwest Bible Church but I've been following your blog very closely. Please know that you have very old friends praying for you, Bryan, Samuel and the rest of your family.

    Sara Mayes

    ReplyDelete
  8. My husband and I actually have never met you, but wanted to let you know that Samuel and your family is continuously in our prayers. Your enduring faith throughout this difficult journey is such an inspiration to us. I continue to pray that God keeps Samuel under His wings as well as brings you both peace and comfort. I am sending you all of my strength...

    ReplyDelete
  9. When my Nana was 2 years old, she came down with diptheria. She was taken to a hospital while my great grandparents were quarantined in their home. They were recent immigrants to the country, and spoke very little english - so they understood little of what was happening. In their confusion and their fear, two hymns became very special to them, and since then to our entire family- my Nana sang these to me when I was a child.

    The Great Physician now is near,
    The sympathizing Jesus;
    He speaks the drooping heart to cheer,
    Oh, hear the voice of Jesus!
    Sweetest note in seraph song;
    Sweetest name on mortal tongue;
    Sweetest carol ever sung:
    Jesus, blessed Jesus!
    *************
    All the way my Savior leads me, what have I to ask beside?
    Can I doubt his tender mercies, who through life have been my guide.
    Heavenly peace, divinest comfort, here by faith in him to dwell.
    For I know whate'er befall me, Jesus doeth all things well.
    For I know whate'er befall me, Jesus doeth all things well.

    All the way my Savior leads me, guides each winding path I tread.
    Gives me grace for every trial, feeds me with the living bread.
    Though my weary steps may falter, and my soul athirst may be,
    Gushing from the rock before me, lo, a spring of joy I see
    Gushing from the rock before me, lo, a spring of joy I see.

    All the way my Savior leads me, oh the fullness of his love.
    Perfect rest to me is promised in my Father's house above.
    When my spirit clothed immortal, wings its flight to realms of day,
    This my song through endless ages, Jesus led me all the way.
    This my song through endless ages, Jesus led me all the way.

    Nate and I, our families, and our small groups are all praying for a miracle - that the Great Physician would heal little Samuel - and that all of your would find rest in the arms of Almighty God.

    -Trish & Nate Hendon

    ReplyDelete
  10. My heart is so heavy for your family. I just really can't even fathom what it is like to have doctors tell you things like you heard today. You will remain in my prayers throughout the coming days, and I am still praying for a miracle. Reading these blogs makes me wish you were back in Texas and it makes me regret I didn't spend more time with you both those two summers at Pine Cove. In the midst of this, your faith challenges and encourages me. My love goes out to you and your sweet boys right now.

    ReplyDelete
  11. Words are completely inadequate at this time. Please know that the hearts of so many are with your family during this time.
    I guess because your Caleb is the same age as my Garrett, I have been thinking of him often these past 2 days. I can only imagine how conflicted you must be to be at Samuel's bedside when you have two more precious babies at home. Know that your other babies are covered in prayer at this time as well.
    Yesterday at church we sang "Jesus Reigns" and that song has popped into my head every time I think of you. I guess it is just further confirmation that He knows what is happening and He has not reached the end of His options.
    Please keep praying for the Lord to wake us up or to carry some of the emotional load for you. I would gladly endure some sleeplessness so that you could get some rest and I will gladly shed some tears so that you may be dry-eyed at a time when you need to be. Truly we are a family and it is an honor to share your burden if we can.
    Believing in the God of miracles!
    The Russells

    ReplyDelete
  12. O Father - All that comes to mind is that You gave Your perfectly whole Son to bring Your many broken ones back to you. I am thankful for this. Your understanding is unsearchable. We rest in Your higher wisdom and ways only by Your grace. We pray that Baby Samuel would be made whole and Your glory would be seen. O God of peace and comfort, hold our dear friends. We love you. Amen.

    ReplyDelete
  13. I am sending all of my love and repeating your prayer, thinking of you constantly.

    ReplyDelete
  14. we don't know each other, but we are praying!

    ReplyDelete
  15. Thankful for Dr.Videlefsky and his kindness and gentleness, thankful for Nurse Richard, thankful for moments of laughter for you both, thankful for God. We continue to lift you all up in prayer, and we continue to pray for a miracle for Samuel.

    ReplyDelete
  16. I have been following your story since my daughter, Sarah H., made me aware of it. As a parent, my heart breaks for you. I have been so profoundly moved by your witness to the glory and grace of our Lord. I will continue to pray for your precious Samuel and your family, as well as all those who are caring for him. God bless you.

    ReplyDelete
  17. We sense the peace the two of you have -- a peace that can only be found in Christ Jesus. Thank you for your testimony of faith. God bless you.

    ReplyDelete
  18. The Lord is a strong tower where the righteous can run and be safe. I thank you, Father, that Samuel is under that strong tower.

    He who dwells in the shelter of the Most High will rest in the shadow of the Almighty.
    I will say [b] of the LORD, "He is my refuge and my fortress, my God, in whom I trust."
    Surely he will save you from the fowler's snare
    and from the deadly pestilence.
    He will cover you with his feathers,
    and under his wings you will find refuge;
    his faithfulness will be your shield and rampart.
    You will not fear the terror of night,
    nor the arrow that flies by day,
    nor the pestilence that stalks in the darkness,
    nor the plague that destroys at midday.
    A thousand may fall at your side,
    ten thousand at your right hand,
    but it will not come near you.
    You will only observe with your eyes
    and see the punishment of the wicked.
    If you make the Most High your dwelling—
    even the LORD, who is my refuge-
    then no harm will befall you,
    no disaster will come near your tent.
    For he will command his angels concerning you
    to guard you in all your ways;
    they will lift you up in their hands,
    so that you will not strike your foot against a stone.
    You will tread upon the lion and the cobra;
    you will trample the great lion and the serpent.
    "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name.
    He will call upon me, and I will answer him;
    I will be with him in trouble,
    I will deliver him and honor him.
    With long life will I satisfy him
    and show him my salvation." Ps. 91

    Where would we be without the promises of God? We are praying for you and gladly bear your burdens.

    ReplyDelete
  19. This comment has been removed by a blog administrator.

    ReplyDelete
  20. Oh Bryan & Kathryn! Words can not express how much you have been on my mind, in my heart and prayers. I was up again last night several times thinking and praying for a miracle. Thank you for sharing your hearts with all of us. We love you!

    ReplyDelete
  21. I woke almost every hour last night and was prompted to pray. My heart is so heavy, but I believe in a God of miracles , so that is what I am asking him for. God, we ask for healing, for peace, for rest.

    ReplyDelete
  22. Kat & Bryan,
    Words are inadequate but yet we all feel compelled to express our sorrow for you. I just wanted to let you know how unbelievable I think you both are, and that I pray for you every time I nurse Josh, particularly overnight. May God continue to answer all of these prayers for peace, strength, and miracles. Sarah Lenko

    ReplyDelete
  23. Bryan and Katherine,

    Your transparency the last few weeks has been inspiring. I hope others read this and know that opening your heart to others can do no harm but only good. I continue to pray for your peace, and God's will with Samuel. He is a precious angel. You are ministering to others at the hospital without even knowing it. Your strength is amazing. Prayers are lifted to you throughout the day.

    ReplyDelete
  24. 1Thess. 1: 2-10
    Every time we think of you, we thank God for you. Day and night you're in our prayers as we call to mind your work of faith, your labor of love, and your patience of hope in following our Master, Jesus Christ, before God our Father. It is clear to us, friends, that God not only loves you very much but also has put his hand on you for something special. When the Message we preached came to you, it wasn't just words. Something happened in you. The Holy Spirit put steel in your convictions.
    You paid careful attention to the way we lived among you, and determined to live that way yourselves. In imitating us, you imitated the Master. Although great trouble accompanied the Word, you were able to take great joy from the Holy Spirit!—taking the trouble with the joy, the joy with the trouble.
    Do you know that all over the provinces of both Macedonia and Achaia(Roswell and Alpharetta) believers look up to you? The word has gotten around. Your lives are echoing the Master's Word, not only in the provinces but all over the place. The news of your faith in God is out. We don't even have to say anything anymore—you're the message! People come up and tell us how you received us with open arms, how you deserted the dead idols of your old life so you could embrace and serve God, the true God. They marvel at how expectantly you await the arrival of his Son, whom he raised from the dead—Jesus, who rescued us from certain doom.


    Ch 3:11-13
    May God our Father himself and our Master Jesus clear the road to you! And may the Master pour on the love so it fills your lives and splashes over on everyone around you, just as it does from us to you. May you be infused with strength and purity, filled with confidence in the presence of God our Father when our Master Jesus arrives with all his followers.

    ReplyDelete
  25. We are praying for you guys! We pray for God's presence and His power! -Steve & Bianca Giddens

    ReplyDelete
  26. I am so thankful that you feel such peace and joy over come you during this trial. Praying for a miracle, and trusting God with Samuel.

    ReplyDelete
  27. I have been following Samuel through Caring Bridge and my heart goes out to you. You are all in my thoughts and prayers and you are an inspiration to all. It's amazing to see how our awesome God is sustaining you through such heartbreaking circumstances and touching the lives of many. I continue to pray for a miracle for Samuel and for God to continue to hold you in His hands.

    ReplyDelete
  28. You guys are both amazing! I know you'd never have chosen this path, but you are truly ministering and bringing Him glory throughout this whole situation. Thank you so much for inviting us into Samuel's journey. It has been your prayer that the Holy Spirit bring him to mind often and that has truly been the case in our household. We ask each other for updates as we pass throughout the day and often come together to read and pray for all of you. Thanks for your transparency and for bringing all of us closer to our Heavenly Father through this. Scott & Jen Tanksley

    ReplyDelete
  29. The prayers of the Bigge, Greaser and Ikenberry families are with you. May grace, healing and peace be with you, as God guides you and holds you in His hand. Much love. Colleen

    ReplyDelete
  30. My heart is heavy for you family today. I'm praying for a miracle and that the decisions that lay ahead for you are clear.

    ReplyDelete
  31. Lord we thank you for your amazing guidance and your amazing presense in our lives. We thank you for our health and we thank you for the great health you have already begun to give to this child. We thank you for all of the healing you give this child through faith, through medicine, and through our doctors. We know you are in control and have complete faith that you will provide for us. I thank you for these wonderful parents and their amazing faith. We know you. We live through you. We believe in you.

    ReplyDelete
  32. We have been praying incessantly for you and Samuel. Samuel's story has touched me in an incredible way. I honestly have to say that I don't think I have even prayed this hard for my own children...even my son, when we dealt with a year of uncertainty and frustration for treatments of his respiratory issues. I now have a greater perspective and I have Samuel to thank for that. Our prayers for a miracle and healing Hand are continue to be said throughout our days.
    Angie and Jason Rowe

    ReplyDelete
  33. Daniel 6:26

    For He is the Living God
    and He endures forever;
    His kingdom will not be destroyed,
    His dominion will never end.

    He rescues and He saves.
    He performs signs and wonders
    in the heavens and on the earth.
    Please Lord rescue Samuel. Heal his little body. In Christ's name we pray.

    Just as God is comforting you and giving you peace you know He is doing that for Samuel.

    We continue to lift you up in our prayers throughout the day. The Reed family

    ReplyDelete
  34. Bryan and Kathryn,
    We are heavy-hearted to know of this news as we continue to pray for Samuel's complete healing! However, I am in awe of our God who has given you the peace that ONLY He can provide. I fortunately know of that peace and it is a perfect and comforting peace. It does not mean that we still don't feel pain or grief during this peace but it provides an amazing sense of comfort that is indescribable. Samuel, Caleb, and Joel should be amazingly proud to be the children of such steadfast and faith-driven Christian parents! The only way that you remain strong is from the strength that only our God can provide! We will continue to pray for you guys as you go through this roller coaster of emotions and we will continue to pray for God to make Samuel whole in His perfect way. We love you very much!
    The Tates

    ReplyDelete
  35. Your family attends church with my brother's family. I am on staff at a church here in NC and your blog has reached me and I have prayed for your family. I passed the information alo0ng to others to pray for your family. In our staff meeting this morning the devotion was on loss and grief...from grief to gratitude and someone made a commnent I want to offer you to ponder in your heart. This comment was made by a mother who had lost a child...she said..."I understand God less, but I trust God more." In this time of uncertainty, I hope you can hold that in your heart and ponder it and continue to trust.

    ReplyDelete
  36. Dearest Kathryn and Bryan,

    I can't but sit vigil with you and Samuel days and nights, in prayer and intercession. I keep hearing,

    "Samuel's heart beats for God. Little Samuel is God's Heartbeat."

    Faith is actually trust in the relationship, isn't it? And what a shining faith your trust in your relationship with God is! Soft, comfortable and shining! Thank you for sharing it with the world. In every word, in every action, in every feeling that you share with us, you reveal not only more of your own remarkable golden hearts, but more of God's Heart. You are His Mirror in this.

    As God promised Jerusalem, there will come a day when He can reveal to you why these things have been allowed to happened to Samuel and you, and you WILL be comforted and consoled. In this time, I pray that Jesus blankets you with His Heart, refreshes you with His Tears, warms you in His arms and covers you in His Word. I pray that Samuel be given comfort, pleasure, and abundant well-being.

    God blesses you,
    Mary

    ReplyDelete
  37. Hi, my name is Christina Acocello and have a son with HLHS. I am also the coordinator for the Charlottesville, VA Mended Little Hearts group. I just am wondering if you guys have concidered moving your son to a cardiac specialty center?? I know that this would be so risky but it sounds like it may be the only chance he's got. I know that you guys sound like you love your cardiologists there, it never hurts to seek another FRESH set of opinions. If I could make a recomendation it would be Children's Hospital of Philadelphia. If your intrested at all, I will work with you guys to get him transfered. Please contact me if you'd like. Our prayers are with you. cmacocello@yahoo.com

    ReplyDelete
  38. You are both such pillars of strength at such a trying time. I pray for little Samuel, you and your families. May His will be done.

    ReplyDelete
  39. Dear Bryan and Kathryn,
    My heart is heavy and my eyes filled with tears as I have just been linked to your blog. Those pictures of Samuel resound in my heart with pictures of my Colleen when she was born. You are a remarkable family - always have been - and I know that even through the difficult hours, your faith will sustain you throughout. My prayers are added to those of all the others. I truly miss the entire Apinis family - you were always a source of strengh and hope to me, and to Tommy and to Colleen. Whatever I can do, please know that I am here. May God carry you gently through this time, may He guard and safely hold in His hands your son, Samuel. May He watch over Joel and Caleb as you care for Samuel - for it is now, in your deepest need that He carries you on His shoulders.
    All my love,
    Sharon Bigge

    ReplyDelete
  40. Hi Brian: This is Nancy w/Pauls e-mail. Not savvy enough for my own account. I just wanted to let you know we have been praying for you and Kathrn and especially for Samuel. Hope, it is one of my favorite words. It has carried me through so many difficult times, and trust. Knowing that no matter what, the Lord sustains me, will carry me through and bring me to the other side. Hope. Trust. I too am praying in agreement with you and I am hoping for healing here on earth. The Lord gave me these verses from Psalm 33 and I pray it back to him as I now pray it for you. "We wait in hope for you Lord, for you are our help and our shield. In you our hearts rejoice, for we trust in your holy name. May your love rest upon us, O LORD, even as we put our hope in you. I am praying and hoping for Samuel. What a blessing it has been to read of the Lords faithfulness, his grace, his comfort and the way his love has spilled out to those around you. Will continue to lift you up in our prayers.

    ReplyDelete
  41. Thank you both for your inspiring faith and for revealing Christ in your questions and pain... I am continually moved toward Him as I follow this and pray.

    Dead ends are not a part of this story... Thanks again for your authenticity that allows many to see Him. Love you guys... prayin. Bry

    ReplyDelete