Thursday, July 1, 2010

48 hours into Luke's life...

Luke has been in this world for 48 hours and has already endured more physically then most adults. Today has been a wild day, and it all started when Kristin and I met the cardiovascular team at 7:00am est.

All of Luke's doctors gathered around for one more deliberation before performing the Norwood procedure. They discussed everything in detail with Kristin and I and then finished their rounds with the other heart patients. All of Luke's machines and bed were transported from the 3rd floor to the 8th floor to prep for surgery.

The two of us and our families were then taken to a private waiting room on the 8th floor. It is here where I have to pause with an update on Luke to discuss an incredible blessing to Kristin and I. Kristin wrote a few days ago that we would allow people to know when visiting would be appropriate. In doing so, we knew that a lot of people would still come by because when you are blessed with so many friends in your life you just can't keep them all away...haha! By 9:00am est the 8th floor of Kosairs was taken over by the Sexton family support system...or should I say 40+ dear friends and family! We had 4 pastors from 3 different denominations who are so dear to our heart...let's just say that prayer never ceased the entire day and there is a rumor of a church service that took place in the hospital chapel. Another great surprise was that my band, Steadfast, came to show their support. I cannot explain how much these people mean to me and Kristin. In addition, 3 of my best friends from college and their wives came to be with us. Plus, several members of mine and Kristin's families came to show their love. We were overwhelmed by our support system, not only at the hospital but by all the phone calls and texts that we were getting from family and friends throughout the day.

So...back to Luke...surgery started around 8:30am est. Dr. McDowell came to update us on the progress each hour. The second visit brought a surprise. Once they opened up Luke's heart and began repair - they took an extended amount of time to explore the anatomy of Luke's "one of a kind' heart. By doing so, they found out that his heart was different from what they assumed by the ultrasounds, echocardiograms and the even heart cath. Luke still had HLHS as expected, but the pulmonary veins from the lungs to the heart were extremely small. Since these veins were attached to the back of his heart they were hard to see in  previous tests and were mistaken to be the "wall" that we posted about earlier. These extremely small veins are a huge risk for Luke and, honestly, decreases his chances of survival even more. However, our surgeons felt like we had come so far and needed to give Luke every chance possible so they decided to continue on with the surgery even though things were worse than expected. The prognosis was really hard to hear. So.. we cried...and cried...and cried...and prayed...and prayed...and prayed.

Kristin and I were in a daze at this point because we knew the possibility of what might happen. After a couple hours I took Kristin back to her hospital room to take some pain medicine and freshen up a bit. We were not there 5 minutes until I received a phone call from Dr. McDowell. He proceeded to explain that Luke had a lot of bleeding and they did not know if they could get it stopped. He told me they would try a couple more options but to come back to the waiting room because things were not looking good.

Again...our hearts dropped. We didn't think our spirits could get lower...but they did. Kristin and I must have seemed like zombies. However, after about an hour Dr. McDowell came and told us that the bleeding was under control and surgery would be wrapping up soon. FINALLY, some good news!

An hour or so later, the entire surgical team visited Kristin and I. Dr. Austin, the lead surgeon, discussed the findings and all the steps of the procedure he performed. He then told us that he is very concerned for Luke because the pulmonary veins are so small and he does not believe they will allow the proper blood flow for Luke to survive on his own off the ECMO. In order for Luke to pull through, these veins will have to grow. They are hoping that since his heart is now as corrected as it can be surgically, the increased blood flowing through these veins will help them to expand.

So...in the grand scheme of things...our approach to Luke's situation does not change: we are praying for and fully believing in a miracle from God. Those veins need to grow and get bigger for Luke to even be a possible candidate for the next round of surgeries if he is able to live on his own off the ECMO. We believe this will happen and claim it in the name of Jesus!

Around 4:00pm est...Kristin and I rush to Nortons for her to be discharged from post partum.

Two hours later...we are standing over our beautiful baby boy in Kosairs PICU. He is the most adorable little guy in the world and he has a glow about him. He has been anointed by the Holy Spirit and is touching more lives then we could even start to know. The nurses asked us if the machines bother us...he is on A LOT of machines...and we smiled and said, "Absolutely not, we are just glad to see our son." Kristin and I get to spend the night by his bedside and stare at him and touch him as much as we like...it feels so good to be a daddy and mommy!

Rewind to a few minutes before Kristin and I went in to see Luke...many of our family and friends gathered around us in the hall of the 4 floor at Kosairs. They joined hands and started lifting prayers to Heaven for us. At the conclusion of the prayer they started singing the chorus of How Great is Our God. The halls were ringing and it appeared that everything stopped on that floor to soak up the movement of the Holy Spirit! He swept through the building and touched many lives on His way!

Luke is going to be healed, we already know that. But in the meantime, there are a lot of other types of healing taking place because of this little guy's strength. I feel in my spirit that family relationships are being renewed, broken friendships are being restored, spiritual healing is taking place and people are drawing closer to Jesus! Like Kristin said today in front of all the people that were at the hospital, if just one person comes to know the Lord through Luke's story...it is ALL worth it! That is how much salvation means to us! We fully believe in the power of Christ and honor Him in all that we do. It was early last year when we started praying, "God use us in any way possible so that we may bring glory to Your name! Use us to minister to the world." Well...we did not expect this to be it, but that prayer has been answered. Luke is ministry to the world!

In the midst of this horrible storm, we know that we must walk by faith and not by sight. We have received a peace from our Lord that passes all understanding. We will take each minute as it comes, and we will give Luke every chance we can to become a healthy little boy. We are so blessed that God has placed him in our lives and we cannot wait for all our friends and family to meet him!

PS. Kristin will post pictures tomorrow! Wait till you see the head of hair this kid has - it's awesome!


-- Benson

38 comments:

  1. I am praying for your precious little Luke and your family. I am claiming with you for God's miracles! Our God is awesome and is able to do so much more than we could ever ask for or imagine! Giving Him all the praise for this amazing little guy that He has blessed this world with and thanking Him for the lives that are being touched through Luke! God bless you Luke, Benson and Kristin and your journey! May His hands continue to be upon you and provide healing, strength and peace!

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  2. Benson and Kristin,
    We are amazed at your strength and your faith. You are wonderful parents and have been blessed with a very special baby boy. We are praying for a miracle because we know that nothing is too hard for our God. You have no idea how many prayers are going up for you. We love you and keep you constantly in our thoughts and prayers.
    The Golds
    Harriet, Neal, Jonathan and Michael

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  3. we are so touched and are praying. Please let us know if u need anything! We are in louisville. Seriously. Place to stay or freshen up or something toeat. Let us know.

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  4. Praying for you all and especially for baby Luke. Love you all,
    Sherry and Randy Simpson Family

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  5. This is so touching. There should be a picture of you guys in the dictionary under perfect parents. I am so sorry for all that you're going through. I have told everyone I know to pray and ask for a miracle. Luke is in our thoughts and prayers!!

    -Brittany and Braylie

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  6. aw! I'm glad that that got the bleeding under control; thank goodness!

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  7. Benson, The strength you all have and the faith that you express is admirable, and something for everyone to strive for. I pray for healing for Luke, and am following every update, and watching for updates from Bethany and Brooke. I hope that you and Kristin can soon bring home your precious Luke, and that God will use him in a special way to minister to the world. I think he is a miracle, and will touch many lives. I believe God has a very special plan for Luke's future!

    Jennifer Hess

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  8. We are sending you all three our love and continue to pray for you all. We love you! Shed, Kayla, Seth, Madalyn, and Will Johnson

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  9. God has such an amazing plan for your family! The love of Jesus is bigger than any diagnosis. Even if Luke was the only person to be saved by Jesus when he went to the cross, He would have still given himself up, which is incredible! I KNOW God has a miracle for him, I just can't wait to see how many people it impacts!

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  10. Benson, I had no idea that this was going on until Andy mentioned it today. I just wanted to let you know that my thoughts and prayers are being lifted up tonight, not just for Luke, but for his entire family. Just remember that song by George Michael.....You Gotta Have Faith! It will see you through.

    Love,
    Kathy

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  11. I want to start by saying that Luke is so lucky to have the two of you as parents. My Mom has always told me that God gives children with special medical conditions to special people. I thought it may help you to hear part of my story as your son's touched my heart this morning and you are all in my prayers. I have had four open heart surgeries for numerous congenital defects. I was not expected to live past the age of four and if I did was not expected to ever walk or talk again. I was in Kosair for months during that stay going through two more open heart surgeries at that point. At times they prepared my parents for the worst and even told my Mom she was denial. She believed God would heal me and in the power of prayer. The out pouring of love, support and prayers my parents received reminds me of your story and they WORKED! Please hold strong to your faith and know the power of prayer can get Luke through this. During my second surgery (third surgery overall) the doctor even told my parents that there had to be a higher power in that operating room that day because it was the only chance of me surviving and things went way better than they could have ever expected. Dr. Austin did my last surgery and he is an AMAZING surgeon. My last surgery was over 10 years ago and I can happily say as a result I was allowed to have two children of my own and this was a thought my parents would NEVER have phathomed for the first few years. Please know there are people you have never met praying for you baby boy and we will continue to do so. I will ask people from my church to pray as well.

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  12. Kristen and Benson-
    We are praying for you all. Luke is a strong young man and a true inspiration. Know that your BG family loves you and is gathered in prayer for the continued miracles!
    Love you all!! Lisa, David, Lauren, JP and Reece

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  13. I just want you all to know I have been praying for you all throughout every day of this. Your faith is amazing and it has lifted me up so much. Luke is very blessed to have 2 amazing parents.

    In Christ, Jamie Buchanan Benningfield

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  14. Benson,
    I know that we havent really talked past the summer of EDGE that we worked together. But I am giving all the strength I can to you and your family. Thank you for the inspiration of Luke's story and your unending faith. It is a blessing.
    Love,
    Monica

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  15. Benson & Kristin & Baby Luke,
    I have sent out a prayer request on our ministries prayer list. You all are such a testament to God's love. I pray the Lord reaches far and wide with this story to bring others to Christ. Blessings, Susan Lewis

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  16. Sexton family, we love you! We love Luke, and the strength he has brought to the world is the strength of our God! I am so encouraged by the faith you have been demonstrating through this, and will continously plead with our Father for an outcome that pleases HIM and comforts you. By the name of Christ we are claiming with you the supernatural healing on those pulmonary veins.

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  17. Sexton Family
    My thoughts and prayers are will all of you. I pray that God will wrap all of you in his loving arms and bring you strength and comfort. I pray that Luke will heal and that God will bring him through this. The story of Luke brings so many emotions and heartfelt love. God bless all of you!
    Cindy Bretz

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  18. I received a forwarded email asking we pray for Baby Luke and his family. I came to your blog read you story, cried a little, & prayed a lot! I continue to pray for the three of you and wish you nothing but the best. God can heal all things!!

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  19. Sexton family,

    My thoughts and prayers are with you guys. I pray that little Luke fights through his ailments all the while bringing multitudes of little blessings your way. I am so thankful that you have God in your life to help support you during a time that would otherwise break you. Keep your spirit filled with hope. God bless you both... and little baby Luke. I will continue to pray and have added you to the church prayer list here in Murfreesboro...

    Patricia Breeding

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  20. I am so touched by your story. Kristin and Benson, your faith and strength is so reassuring. I know the Lord is so proud of his children. You are such great witnesses. Please know that I will never stop praying.

    In Christ's Love,
    Heather Tatum and family

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  21. I literally cried reading this post. You two are absolutely amazing and your strength is such an inspiration. Dale and I continue to pray for The three of you and your families. Our God is a miracle worker and we are believing by faith that Luke will come out of this as a living testimony of that!

    Dale and Krissy

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  22. I am a complete stranger to you... And know that you are in my prayers. I am a new mommy as well and this story hits home. My daugter was expected to be healthy and perfect instead she was born with only 1/3 the blood she was supposed to have. Through a miracle of god and our support team, or baby made it through and is healthy as can be after a few long days in the nicu. Luke is in the hands of an amazing god and healer. I pray that you all continue to keep such strong faith through this incredibly hard time. I feel god chooses the strong to handle such situations to lead by example. Please continue to update, there are many reading, all over the states!

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  23. What a truly amazing family and faith in our God! Your strength and faith is an inspiration to all. My family is praying for you and your little boy.

    Lindsay and David

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  24. I discovered your story through a Facebook connection. I do not know you or Kristin personally but am praying as well. This story is such an amazing testimony to faith and God's will. I pray that God continues to work miracles in Luke's life and in the lives of those he is touching. I pray for peace for the two of you as you endure this journey. You faith is so admirable. May God bless you all.

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  25. I just wanted to let you know that I have been touched greatly by your story. As part of your vast network of prayer requests, I received the link to your site yesterday and have passed it along to others to pray. I am praying for you all, and standing with you in faith...something that I don't know if I can say that I've done in quite sometime. I'm just another in the immeasurable line of lives that tiny Luke has already touched. I believe in the love and power of our wonderful God and I know that His plan is perfect. Thank you for sharing your faith, your love, and your precious baby with the world.

    --Tonya

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  26. Benson and Kristin:

    I wanted to let you know that I am praying for you and Luke! I am moved by your faithfulness even in the midst of such trying times. I know that God is holding all three of you in his hands. Your Lindsey family is with you and we are all holding you up. God Bless you and keep you!

    Heather Ambrose

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  27. Praying for Luke and the rest of your family Benson. Our God is great and He has a plan!

    Leslie Gossage Bennett

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  28. As a fellow heart parent, I just wanted to say we are praying for Luke.

    Kelly
    http://chdbabies.blogspot.com

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  29. Prayers & love to your family! We have been there on that 8th floor of Kosair's, while our son was having brain surgery. I can say that by God's grace he is now a healthy 11 yr. old. God is still in the miracle business!! May He bless you with yours.
    the Willis family

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  30. Benson and Kristin,

    We love you guys and that precious little Luke. We are still praying as months before his birth that he will become a healthy, happy little guy. God is great and mighty.

    Love,
    Raymond and Laura

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  31. You all have inspired the world...we love you all! God is doing such powerful things...Praise Jesus!

    http://www.youtube.com/watch?v=e_4g8_e16dc

    The Burwash Bunch
    Drew, Laura, Eli, Ty and Woody

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  32. MY co worker sent this to me, since we have never met, I have passed this along to my church prayer list. God be with all of you!!

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  33. Bryan, Audi & Jada CrossJuly 2, 2010 at 3:00 PM

    Praying for God's healing touch on Luke! You guys are an inspiration.

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  34. Praying for you all. God works such wonderful miracles and you have one in Luke. Keep your faith strong and may God be with you all.

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  35. Ephesians 6:13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand.

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  36. I'm glad your baby boy is ok I ahve learned alot about god in this journey in praying for baby Luke, I don't know who baby Luke is i do know about his medical problem though and i don't know who his family is but they are in my prayers day and night:)

    -From Jenna Tunagte
    Or Baby Lukes #1 Fan

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  37. I saw this link on the Sanctus Real post on Facebook and came to read about your little boy. Our sons are alike on birthdays except they are four years apart, and they are alike on the HLHS condition. I want you to know I am praying for you all. If you would like to hear our story go to http://www.carepages.com/carepages/littleBen. He is currently on a transplant list (114 days as of today).
    Bless you all!

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  38. My heart goes out to you and your family. Your faith has inspired me and I'm sure so many others who have shared in your journey with Luke this past week. Luke was such a precious gift from God and there is no doubt that God made the right decision when He placed Luke with the two of you. Luke was fortunate to have had so much love poured out on him in his short life. I will continue to pray for you and your family as you continue to move through the grieving process for Luke. God bless you both! B. Wright

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