Wednesday, June 30, 2010

Luke's first 24 hours...

Hey everyone, it's Benson. It may seem like you have waited an eternity to hear about Luke. I will start by saying that my wife is an all-star when it comes to labor. She was fantastic all day, never once complained or even showed a hint that it was difficult. Labor and delivery went extremely well as Luke was born into this world around 9:30pm est. The delivery room was full of doctors and nurses awaiting our precious 6lbs 10oz, 21 1/2 inches long boy.

Let the madness begin...

Kristin and I held Luke for a total of around 3 minutes. He was then whisked away by the neonatal team to Kosairs NICU. My father-in-law and I followed Luke as the rest of the doctors made sure Kristin recovered well. After I found out where Luke would be, I returned to Kristin.

From this point, chaos and confusion took over...

We were told it would take a couple hours until we were relayed the diagnosis...those two hours seemed like a lifetime. Finally, Dr. Rod McDowell, a pediatric cardiologist, entered the room and delivered the news. The first thing we found out was that Luke's oxygen levels were extremely low, in the 30's, and that was the number one concern. From there he proceeded to tell us that instead of Luke having one large right ventricle, he had one large left ventricle...and a lot more. However, we were encouraged that the doctor's did not believe it was HLHS, but were terrified by the fact that Luke's oxygen was so low. Dr. McDowell continued to explain that Luke may need a blood transfusion and several other things to stabilize him. Dr. McDowell left and, while weary, we were confident that Luke's condition was better than what we originally thought.

Fast forward an hour...

Kristin was being transferred from labor and delivery to post partum when we received a phone call from Kosairs NICU to come over. My father-in-law and I went ahead of Kristin and her mother as she finalized the move to her new room. When Raymond and I arrived, we were met by a team of doctors that asked us to wash up and put on gowns. The only way that I know how to describe the scene around Luke in the NICU is by saying it was like a very intense episode of Grey's Anatomy. Raymond and I were terrified as doctors told us of the worsening condition of Luke. They indicated that he immediately needed to be put on ECMO for any chance of survival. I was terrified and wanted Kristin so badly. Finally, after 20 minutes, Kristin arrived to the scene and went into fits...she just knew that Luke was in big trouble. We spent a few minutes loving on him and then the doctors began the procedure...the ECMO saved Luke's life last night.

NOTE: Kristin has been praying that Luke would not have to be on ECMO the whole time. This machine pulls blood from the body into the machine, oxygenates it and then returns it to the body. The blood is extremely thin and there is a very high risk for bleeding, especially in the brain.

7:00am this morning...

After 1 hour of trying to rest, Kristin and I left her room in Nortons to visit Luke as the cardiovascular team made their morning rounds. We were surrounded by a team of prestigious professionals as they discussed Luke's case and pitched ideas as to what to do next. The resulting was idea was to have a heart catheterization today to determine a final diagnosis.

4:15pm this afternoon...

Dr. McDowell visited us following the heart cath. His concerned look allowed us to know quickly that something wasn't right. He proceeded to tell us that Luke does have Hypoplastic Left Heart Syndrome with both major arteries, aorta and pulmonary, coming out of the right ventricle. One would think this was the worse news...but it wasn't. Luke's heart has a wall between the two atrium's of the heart that is preventing blood to flow correctly. The wall causes blood to back up into the lungs which increases the pressure in the lungs. With increased pressure in the lungs, the heart has trouble pumping blood to the whole body - a problem that, unless somehow corrected would be fatal. We were then told we were faced with two options.

Option 1: Go through with surgery tomorrow morning at 7:30am est. This surgery will be the normal first surgery for HLHS patients (Norwood procedure) and include fixing the wall that causes blood to back up in his lungs. However, with the condition of the high pressure in Luke's lungs, his risk factors are much greater. We were told that typical HLHS patients have an 80-95% survival rate, but Luke's condition makes his chances of survival at around 20%. They believe that he will be able to make it through the surgery. The difficulty will come in weening Luke from the ECMO and seeing if his lungs will be able to hold up.

Option 2: Make Luke comfortable and pull him off the ECMO.

As you could imagine, our hearts dropped. Kristin and I spent time alone crying and discussing what to do. In the end, there is no way that we cannot give Luke a chance...he will have surgery tomorrow morning at 7:30am est.

About a half hour later...

Dr. Mascio and Austin visited our room; they are the two surgeons that will take Luke's extremely complex heart and make it usable. They told us the same things that Dr. McDowell did and agreed that we had to give Luke a chance at surgery.

So...here we are...

The first 24 hours of Luke's life have been extremely unfair. I have left out some of the drama and news we received only because my head is spinning and I cannot think very straight right now. However, Kristin and I stand firm on our promise to completely rely on God. Yes, we question why, but we do not place blame.

We need your prayers. Please pray that surgery goes well tomorrow. Pray for the surgeons and doctors, that God gives them knowledge and wisdom in Luke's case. Pray that Luke's lungs receive a touch from God and are able to function normally. Pray that Luke comes off the ECMO with no complications. Kristin has had a rough recovery day, so please pray that tomorrow is much better for her. Pray for our parents as they tirelessly look after our family. And when you pray...give God all the glory and honor and He deserves! He is an awesome God that never leaves us or forsakes us. He is the ultimate physician, He is the Most-High Doctor! In the midst of life's worst storms, we praise You God!

God has a special plan for Luke's life and through it all, no matter the outcome, He will receive glory. We are terrified at what might happen tomorrow or in the week ahead but we completely submit our son to our Lord and Savior because we know that NOTHING IS IMPOSSIBLE WITH GOD. -Luke 1:37

-- Benson

42 comments:

  1. Joan C. McKinneyJune 30, 2010 at 7:59 PM

    Kristen and Benson,

    Prayers just said for Luke and your families. I am so sorry about Luke's condition, but we hope and pray that his surgery will go well tomorrow.

    You all are in our thoughts and prayers.

    Joan McKinney

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  2. Kristen, Benson, and Luke,

    John and I are praying for you. If you need us for anything, please feel free to call. 270.572.7918. We love you all, know that tonight will be filled with nothing but prayers.

    In God's Love,

    Julie and John Dennison

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  3. Praying, praying, praying.

    The Gibbs 5

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  4. I'm so sorry to hear about the complications. We will keep Baby Luke in our thoughts and prayers tomorrow morning.

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  5. You know I'll be praying! Kristin, I've emailed you my number if you need anything! Much, much love to all three of you! Our God is a BIG God!

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  6. We are praying for Luke and your families. I'm so sorry to hear about the complications. We will keep Luke in our thoughts and prayers during surgery tomorrow.

    Your neighbors.

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  7. Kristin and Benson
    You guys and little baby Luke are in my constant prayers. Our God IS in control. To Him be the glory.
    Jenny

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  8. Praying for you!

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  9. Kristin & Benson...
    My heart cries out for you and I am praying so hard for you all. I have faith in knowing that God is listening to all of us praying for Luke and that all of those doctors and nurses that work at Kosairs are amazing at what they do.
    With Love,
    Tori Lepage

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  10. Kristen & Benson,

    You and your family are in my heart and prayers. I will be praying in the morning for God's guiding hand for the surgeons and medical team, and that Luke be touched with His healing hand.

    Chris Tolson

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  11. My son and I just prayed a special prayer for your precious lil' boy. We will continue to pray for him and your sweet family. With love and prayer, the Murray family.

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  12. Praying for you and your special little boy! I found your blog through Bethany's blog. Please know that we are praying for you and especially that God gets the glory!

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  13. We have all of you in our prayers..We lift all of you up and ask GOD's grace to surround you everyone. We pray for GOD to place HIS HEALING ARMS AROUND YOU AND TOUCH LUKE'S LUNGS AND HEART. WE ASKS THIS IN JESUS NAME. AMEN

    WE LOVE YOU ALL
    TERESA,ANTHONY,AMANDA,AND DREW

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  14. Benson and Kristin,

    I just wanted to let you all know that I love you and I am praying for you all and Luke as you go through this difficult time. I also wanted to say thank you for showing us all a real life example of what it means to make Jesus look beautiful by keeping your faith even in the most difficult of circumstances. Luke is lucky to have a dad and a mom that have such a strong faith. Prayin for ya!!!

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  15. Benson and Kristin,

    I am praying that God gives the surgeons all of the knowedge that they need to make every perfect move during the procedure. Luke is precious, and I am hopeful that he will soon be in that beautiful nursery that you have created for him. God is a BIG God!

    "If GOD brings you TO it, HE will bring you THROUGH it"

    God is Bigger than any storm!

    "Stop telling GOD how big your storm is, and start telling your storm how big your GOD is!!"

    Praying for your comfort during the surgery, and peace that God will bring Luke through this, and your miracle will be going home with you soon to complete your family.

    God Bless you all,
    Jennifer Wheat Hess

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  16. I don't know any of you but I'm very touched by your story. I will be praying for you all and that you continue to have the strength you have now. I myself have had a sick child with many struggles. All and all God is the best Doctor! Clinge to your Faith in the Lord Jesus.

    God Bless You All
    Praying for Baby Luke
    Sincerly,
    Tammy Antle and Family

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  17. I don't know any of you, but your story has broke my heart and I want you to know that even people who are strangers are praying for you and your new little one. I am so sorry that you have to go through this at what should be such an exciting time. You sound like you are and will be amazing parents. Hang in there, there is a reason this is happening, and I am praying that all goes well. God Bless you, Sexton 3.

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  18. I'm praying for your family.
    GOD BLESS,
    Tiffany Hadley

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  19. Hey guys,
    Words seem so empty I'm sure at a time like this, but as much as it can help, always remember that "His grace is sufficient" and always will be. Our family loves your family. We are agreeing with you for Luke's miracle...for "by His stripes we are healed."

    Randy & Miranda

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  20. Benson & Kristin,
    We hold you and Baby Luke up in prayer to God. We will continue to lift you everyday. We are here if you need anything. Love & PRAYERS, Pat, Melissa, Hannah & Macy Campbel

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  21. Words cannot explain emotions at such a time as this, but just know that there are so so so many people praying for little Luke and for you guys as well. I pray God continues to bless you guys, that your sleep (what little I know you will get) be restful, and that the hands of the surgeons are guided by the only one who knows the future. My brother was also given about a 20% chance of living when he was born (completely different circumstances) but a miracle happened then, and they still happen today! Praying incessantly for all of you. =)
    ~Kristen Riggs

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  22. We will be praying for Luke and for the rest of the family. I'm so happy to hear that you are fellow believers in Christ--I can't possibly know the feelings that you are going through, but I know it is a struggle daily. Luke is blessed to have parents of such strong faith and you are blessed to have this opportunity to see the hand of God at work in your precious miracle. We will be thinking of you each moment and praying for your doctors to have the wisdom to help Luke, and for you to have the strength to continue in your faith on this difficult journey. Try to find time each day to reflect on the blessings that you have and as difficult as it is to look ahead with hope.
    Miracles happen in the smallest moments. Remember, in everything Love is the greatest gift we've been blessed with. Share it.
    ~Andrea, Columbia, KY

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  23. I will be praying for you and your sweet baby boy. My Maggie Jane has HRHS and a few other heart defects. She is 3 now and walks around the house singing, "Our God is a great big God" and that He is. He knew every twist and turn of this roller coaster before it started and He is in control.
    Many heart hugs and lots of prayers,
    Faith

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  24. Sending you all my love and prayers. We know that through God ALL things are possible. Praying that a miracle might be sent your way.

    Margie Walker

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  25. Our thoughts and prayers are with your family.

    Martin and Dawn Wesley and family

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  26. I don't know you guys. I saw this on Facebook this morning. I just wanted to pass along to you that little Luke, as well as the two of you are in my prayers. I know first hand that the power of prayer is an amazing thing. Last October my husband had a very severe stroke. The outcome didn't look very good. When asked by friends and family what they could do to help, I asked them to just pray. After a few weeks, he started to improve gradually and is now at home and is doing very well. He will never be the same, but he is able to get around and do things with our family. Please believe that God is with you and Luke. He will take care of everything. Luke was put into your lives for a reason. Stay strong and keep praying! Sherrie E.

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  27. Benson and Kristin,
    First I want to let you know that your family will be in my prayers. I know what a tough time this will be for you all physically and emotionally, but you will make it through! Four years ago, my cousin had a son, Robert, with HLHS. He wasn't given but a 20% chance of survival. However, after four heart surgeries over the last four years, he is doing wonderfully and developing like a regular little boy. It's amazing to see the miracles that doctors and the Lord can work in our lives. My thoughts and prayers are with you.

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  28. Chris & Holly WilsonJuly 1, 2010 at 11:08 AM

    We love you both and are praying for your family & little Luke in the midst of it all. God IS the great physician.

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  29. Heavenly Father, you sent; your own Son into this world. We thank you for the life of this child, Luke, entrusted to our care. Help us to remember that we are all your children, and so to love and nurture him, that he may attain to that full stature intended for him in your eternal kingdom; for the sake of your dear Son, Jesus Christ our Lord.

    O merciful Father, who hast taught us in thy holy Word that thou dost not willingly afflict or grieve the children of men: Look with pity upon the sorrows of the Sexton family. Remember them, O Lord, in mercy, nourish their souls with patience, comfort them with a sense of thy goodness, lift up thy countenance upon them, and give them peace; through Jesus Christ our Lord.

    Assist us mercifully, O Lord, in these our supplications and prayers, and dispose the way of thy servants towards the attainment of everlasting salvation; that, among all the
    changes and chances of this mortal life, they may ever be defended by thy gracious and ready help; through Jesus Christ our Lord.

    Almighty God, we entrust Luke to thy never-failing care and love, for this life and the life to come,knowing that thou art doing for him better things than we can desire or pray for; through Jesus Christ our Lord.

    O God of peace, who hast taught us that in returning and rest we shall be saved, in quietness and confidence shall be our strength: By the might of thy Spirit lift us, we pray thee, to thy presence, where we may be still and know that thou art God; through Jesus Christ our Lord. Amen.

    --Prayers from the Book of Common Prayer

    I'm praying as instructed in 1 Thess 5:17.
    Blessings,
    Melody Hall

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  30. Benson, Kristen, & Baby Luke,
    As a parent myself I can only imagine what you all are going through...when I read this last night and as I send this to you I cry...your story is heartbreaking. All you can do is trust in God and know He never outs more on us than we can bear and He knows best. Prayer works and my family and I are praying that Luke will be ok. We dont know each other but if I can be of any help please feel free to contact me :
    ncpier40@students.campbellsville.edu....or...
    Nikki Gribbins Pierce..on facebook..
    With lots of loving prayers,
    Nikki & family

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  31. I am not a parent, but I can only imagine what you guys are going thru. But I firmly agree like you guys that there is a reason for Luke's life. I pray that everything goes well and for God to give you guys strength! Kymberly

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  32. Kristen and Benson,

    I can't imagine the thoughts that are running through your minds as new parents. My prayer for you both today is that you can experience Christ's embrace as he carries through this difficult time. Know that you and your precious baby boy are being lifted up in constant prayer.

    "May the God of hope fill you with peace as you trust in Him, So that you may overflow with hope by the power of the Holy Spirit." Romans 15:13

    Ashley Melton

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  33. Benson and Kristen,
    You and Luke are in my prayers in this difficult time.
    Phil Hanna

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  34. Benson,

    I am praying for you, your wife, and your prescious son Luke. I pray that the Lord will heal his heart and make it new. And I pray that he will comfort you and Kristen in the process. May the Holy Spirit come and be ever so present with you during this time.

    Erica Moon

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  35. I am praying the God will give you strength and peace. I pray that Luke will be strong and amaze you with tiny miracles as you face each challenge ahead.

    Andrea Riojas
    Heart Mom

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  36. We pray for little Luke there in Missouri. A friend in Kentucky sent me a facebook message that sent me here. So prayers will be said for all three of you, and double for Luke.

    we all will pray,
    Harris Family
    Theresa, Mark, Shawna, Mary, Lucas, Andrew and Anna

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  37. You're in my thoughts and prayers. "We can do all things through Christ who gives us strength". May God place His arms around you three, and grant you peace!

    from Columbia, KY. LWC

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  38. I hate that this is happening! hope all works out!

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  39. Thank you for sharing your amazing journey with our Sweet Heavenly Father. Please accept my prayers for your family and precious son Luke. I read somewhere that faith is the identifying mark of a Christian and I want to say that your family exemplifies this meaning! I pray that God will continue to provide for your needs as HE cares for your special son Luke!

    In His Name,
    ~~Norma Wheat

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  40. Benson and Kristin, My heart cries out for both of you. You have been on my mind constantly since last night. Benson, I claimed to be you "Columbia Mother". That still holds true. I stand in awe of the faith both of you have. Your an inspiration to us. We will do anything you need, just let me know. Love to both of you and precious Baby Luke. Hang in there.

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  41. Our love, thoughts and prayers are constantly with you all! God has a plan for the three of you! Though we may not know what that is right now, He does! Praying that God wraps his loving arms around the three of you and gives you comfort and healing for little Luke!
    Love,
    Michael, Ralna and Riley Saxton

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  42. I don't know you personally but we have the same Heavenly Father! My supervisor and friend, Paula Holden asked me to pray for you. I am praying for you and your family for God to be glorified and magnified through Luke's life. I pray for healing and peace for Luke and your family. I pray that you can cope with whatever struggles lie ahead of you. Thank you for sharing this story as hard as it may have been to type it all out and get your thoughts into words know that you have made me stop and reflect about the power and awesomeness of God - He can do anything! No matter the outcome, you have a testimony that can be used to further His kingdom! You will remain in my prayers.

    In His Love,
    Amanda Scott

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