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Saturday, July 31, 2010

He is worth it all.

"Lord, take our lives and do whatever you want with them. We are yours. We want to be used by you, so Lord - lead us, guide us, send us. More than anything Lord, we want to bring You glory."

Months before we were even pregnant, Benson and I began praying that God would start to use us in a radical way.  Over a period of months, we had grown spiritually stagnant. Our lives and our ministry had become a weekly routine and we grew desperate for a change. So, we began to pray for God to move - to challenge us, to fill us with His presence, to send us to people and places where we could minister, to shake up our world in a way that would glorify Him.

When I found out that I was expecting a baby, I began to fervently pray that God would anoint him even before birth. I prayed prayers that some people would call crazy - that the Lord would fill Him with the Holy Spirit, that He would be an ambassador of the Gospel and that people would come to know Christ because of his life. I gave Luke to the Lord very early on - knowing and trusting that this baby would grow up to bring glory to the kingdom of God.

I look back on those prayers and realize now just how faithful God is when we call on Him. Maybe I should have listened to all those times people told me to "be careful what you pray for."

Last night as I sat in a pew worshipping the Lord as my amazingly talented and passion-filled husband led worship with Steadfast, the Lord began to speak into my heart. I felt the Spirit leading me and convicting me to once again, give my life over to the Lord...to let Him have his way with my family and with my future...to commit myself to His ministry and His call. It is a prayer that I have prayed many times throughout my life - however, last night - the thought of promising my life over to God absolutely terrified me.

You see, it wasn't long ago that Benson and I started talking about having another baby. I know most people would think that we should take months or even years before trying to get pregnant again. However, as Benson and I both prayed, the Lord spoke into our spirits that He would bless us in His time - whether that means a few weeks, a few months or a few years...and whenever He was ready to bless us in that way, we were ready to receive it.

A few days after having this conversation, satan began to speak doubt into my mind..."What if you lose another baby? What if you have a miscarriage? What if your next baby has another heart defect?..." The more people told us about how Luke touched their lives and how God used him in such a mighty way, satan would try to speak thoughts of how "You prayed for this...you asked for God to use your baby...He answered your prayers..." into my mind.

So, last night... when I felt convicted to pray once again for God to use my life, I could hear the devil saying "But Kristin, what if He chooses to use your next baby in the same way as Luke?"

Luke 9:23 says "Then he said to them all: "If anyone would come after me, he must deny himself and take up his cross daily and follow me."

In society during the time of Christ, the cross was a symbol for pain and suffering. It was a well-known figure that represented torture and death. When He call us to "take up our cross" He does so with the understanding that giving your life to Him will most likely involve some kind of pain and sorrow. We must give up everything to serve Him, knowing that it will not always be easy - but in the end, it will be worth it.

So last night, I went to the altar with a heavy heart. The Lord knew my fears and as much as I wanted Him to speak to me and promise me that I would ever have to go through such intense pain again - I knew that He couldn't. The Lord cannot promise me that I will never hurt again or that He will never lead Benson and I down another dark path. What He does promise is that He will never leave me or forsake me...that He loves me and He will always be my strength.

So, last night...on my knees in front of the Lord, I prayed a prayer that I would never have dreamed I would ever have to pray...

"Lord...I love you. I give you my life...I give you my yesterdays and my tomorrows. My heart is broken and I feel so empty Lord. My pain is unbearable at times, but...You Jesus are the lifter of my head. You promise that no matter what, You will never leave me or forsake me.

So, whatever you want me to do Lord - I'll do it...whether that means that I may have to suffer or go through heartache again - as long as it brings you glory Lord, I am willing...send me...

...and if that means losing another baby, I'm okay with that...because Jesus, you are worth it. You are worth it all."


I don't tell you any of this to bring any kind of glory to myself...I tell you this because it's true...He is worth it all.

People have asked how we can go through losing our baby boy and still have a passion to serve God...why after all we have been through, we choose to give our lives to Him - I can tell you very simply why it is so easy for us to do..

It is because we have tried everything else in this world and the ONLY thing that works is Jesus.

Drugs, alcohol, sex, relationships, anger, bitterness, resentment, depression - between both Benson and I we have been there and done that. I am telling you, nothing fills the void in your life like Jesus can. Nothing. So when you are faced with pain or suffering, you have a choice. You can either run away from Jesus or run to Him. I have ran the other way before and learned the hard way - if you want healing, if you want Him to mend your brokenness...you can't do it on your own. You have to choose each day to give it all to Jesus.

We both feel like the Lord has brought us through so much in our lives because He wants to use our lives, both past and present, to glorify Him. I know that there are many of you who read this blog who are going through a lot of hurt and pain right now. Maybe you lost a child or someone your love...or maybe you are in a relationship that is not glorifying the Lord...or perhaps you just aren't where you need to be spiritually and you need to reconnect with Jesus...or maybe you have never really truly accepted Him as your Lord and Savior and want to know more about how to become a follower of Christ...we want to be an outlet of grace for you to share your feelings with or ask questions.

Some of the greatest way to release bondage in your own life is to just get it out in the open and tell others of your hurt. We don't have all the answers, but we know a God who does. We are real people with real pain and we want you to know that if you are hurting, you are not alone.

If you feel led to share what is going on in your life and just want someone to reach out to our email addresses are listed below. Please feel free to send us a message:

Kristin's email: kristin.sexton@yahoo.com
Benson's email: bensonsexton@hotmail.com

Also, if you would like or us to come and speak to your church, youth group, school or anywhere - please contact us. More than anything, we want to keep Luke's story alive and continue the ministry that the Lord has called us to. We would love to share Christ with as many people as we have the opportunity to. You can email us or message us on Facebook to contact us.

So where are you today? Are you too filled with fear to allow the Lord to completely have your life? Are you too scared to take up your cross and follow Him? Do not allow satan to rob you of the amazing journey that Christ has for your life. No matter where that journey takes you, whether through joy or pain, we serve a God that is there to carry you every step of the way...and trust me, He is worth it all.

-- Kristin

Wednesday, July 28, 2010

A mother's heart.

This will be my first post since Luke went to Heaven. I have sat here with the laptop in my lap for hours not knowing where to start. What can I say when my heart hurts so bad?

I have decided that all I can do is be honest about what I am feeling and thinking. So many of you tell me that you think I am strong - and I will be first to tell you, my strength is only from the Lord. My flesh is broken and weak. I am a mother without her baby to hold and I have quickly realized that there is no earthly strength that is strong enough to get me through this on my own. All I can do is praise God that He is the lifter of my head and that He is near to the brokenhearted during this time.

Yesterday, I was a mess. I could not get over how empty I felt. I look at my stomach and cry... not because my clothes don't fit or because I'm not skinny... but because its empty. One month ago today, I was 38 weeks and 5 days pregnant. I could feel his little feet pressing up against my ribs and feel his little body jump when he had the hiccups. I could push against my belly and pat his butt.

One month ago, I was carrying Luke.

More than anything, I loved being pregnant with him. There is something so incredibly special about the bond between a mother and her unborn baby. Luke was my best friend. For nine months, we liked the same foods, listened to the same music, shopped online at our favorite stores and went everywhere together. He was a part of me, a God-formed miracle that was as important to my life as my very own heartbeat. Even though at the time I had never met him, I knew him and he knew me. I talked to him about Jesus and sang praise and worship songs to him in the car. He heard my jokes and knew I was funny (even funnier than his daddy!). He knew my voice and he knew I loved the Lord and that I loved him and prayed for him everyday. I only carried him for nine months but I felt like I had been his mother for my entire life.

Today, I cannot feel Luke with my hands. I cannot pick him up and hold him in my arms... and even though I know he is with Jesus, I miss him. I really miss him.

No words could ever explain how deep the void is in my heart. I have tasted of the sweetest joy that God gives on this Earth and it has left me with an insatiable hunger that cannot be filled.

However, no matter how much I hurt now - my pain is nothing compared to what I felt when I stood over my baby with his arms and legs turning black from lack of circulation. It is a mere sting compared to the deep ache I had when I saw his face in pain. Unless you saw Luke in the hospital, you will never fully comprehend just how sick our little boy was. As much as my arms ache for him, I have peace in knowing that the Lord knew best. I am not mad. I am not bitter. I cry for my own selfishness of dreams and hopes for my son that will never come to pass in this life. My grief is in my flesh and my spirit shouts with joy that my little boy is healed. I praise the Lord that I "do not have to grieve as those who have no hope" (1 Thess. 4:13-14 -- thank you Jesus!)

I am so thankful for all of the prayers and comments people have sent. Please know we read every one of them. There is no way we could respond to them all. There have been so many people who have helped pray us through this and we are so thankful. I am especially thankful for one person that God placed in my life that has been my source of strength every day. They have been there to hold me and cry with me when I felt like my world was falling apart and I can honestly say, I would not be able to do this without them. I would like to take the opportunity to thank that very special person who I know will be reading this...


Benson Sexton... I have never loved you more. In the midst of the worst days of our lives, I have fallen in love with you all over again. You will never fully understand how your love has held me together during the past few weeks. You are so much more than my husband and father to our baby boy - you are my rock, my anchor and my very breath with I cannot breathe on my own. We have stood beside our baby's bed and beside his casket in the very same week. No one (especially you) deserves to experience such intense pain. So many of my tears are because I hurt for you. I hurt for all the UK games you wanted to take Luke to, all the songs you would have sang to him, all the laughs I would have had watching you change his diaper for the first time. I am so sorry that the three of us will never share those memories together on this Earth. Thank you for being such a man of God and for loving Him even more than you love me. Thank you for being everything I ever dreamed of and more in a husband and best friend. Thank you for being the most incredible dad to Luke and for praying and singing over him even when it was hard. I know the Lord is going to fulfill every promise to us and I absolutely cannot wait to be blessed alongside you. I am so proud to be your wife and your partner in ministry. I love you now and will always love you no matter where life takes us.


From then (our first picture together...)


Our wedding.. (08.09.08).


Our family... the Sexton 3.

Please continue to pray for us, especially as we seek the Lord's direction for our lives and our ministry. Even in the dark times, God is still God and He is always good. He is speaking so much into our hearts and He is so close to us now in our brokenness. I can't wait to share all the things He is speaking to us. We are blessed.

-- Kristin

Tuesday, July 27, 2010

God Continues to Bless

Kristin and I worshipped with Hillsong Live last night at Southland Christian Church in Lexington. It was an amazing worship experience! It amazes me to see how anointed those men and women are and how they usher in the Holy Spirit! If you ever get a chance to worship with them live...do it!

Yesterday was just an all around great day as I also received the word that Kristin and I will be meeting Casting Crowns on September 23 in Louisville and then worshipping with them that evening! We have a great friend to thank for passing Luke's story along to Casting Crowns' record label!

However, the great day was followed by a rainy, gloomy day at home. This has been one of the toughest days for Kristin. There are times that I don't know what to say or do, and it frustrates me...but, I just stop and pray. I know the feelings that I have as a father, but I honestly cannot begin to imagine the feelings that she experiences as a mother. I have said a thousand times that she is the strongest person that I know, but that does not mean that both her heart and world are not crushed. We are both beyond thankful that our Lord has comforted us during this time and that He continues to work in our lives. Without Him, we are nothing. The verse that guided us through Luke's sickness and death has now become the forefront of our every moment. The pain...the hurt...the brokenness...the tears...the sorrow...they have all been overcome by the victory of Christ and we know that, no matter how low in this life we feel, NOTHING IS IMPOSSIBLE WITH GOD!

I cannot begin to explain how excited I am about tomorrow and the rest of the week. Steadfast is in service each night and I feel in my spirit that God is going to do something big. If you are in the area this weekend, we are leading worship at Greensburg First Methodist Church at a revival called Lead Us Back. Don't miss your blessing...come worship with us!

Luke 1:37

-- Benson

Saturday, July 24, 2010

We're Back!

Kristin and I left last Saturday for a trip to the Gulf. We ended up staying in Orange Beach, AL and it felt as if we had the entire Gulf to our lonesome...well, maybe a few more families. However, it was nice to relax for a few days without a bunch of people around...even though, we were blessed to see some people from Campbellsville staying in the same set of condos. The water was clear and there were no signs of oil. We highly encourage anyone looking for a quick getaway to go to the Gulf as you can get some sweet deals right now because of the lack of tourists traveling to the area.

Even though it was nice to getaway, it was difficult to return home. We were greeted by all of Luke's stuff and it once again broke our heart's into pieces. I get so mad when I look at his pictures because I see a perfect little boy...I have to stop and remind myself how sick he was just to calm down. However, the Lord is near and we are certainly comforted by the Spirit.

Upon our return we were also greeted by a lot of mail...cards, letters and doctor's bills! One of Luke's nurses told us a HLHS patient is a million dollar baby...I realized that nurse knows what she is talking about! We are blessed to have very good insurance...so, when we get the crazy bills we try not to let it stress us out. We have also been blessed by the outpouring of love from our community, friends and family. We have experienced the true meaning of Christian love and it has inspired us to do even more in the future for families during difficult times.

Some people have asked in the comment section about the Sexton 3 t-shirts. My band, Steadfast, is selling those shirts. You can look up Steadfast on Facebook, or you can visit our website at http://www.steadfast1558.com/ to place orders. Also, the college where I work is selling Luke 1:37 bracelets; if you are interested, put your email address in the comment section and I will make sure it gets to the appropriate people.

Kristin and I will take next week off work to continue to try and get back to a somewhat normal life. We have a lot of things we need to accomplish, many of which involve insurance and legal stuff for Luke. However, we both miss our office families and look forward to our return the first week in August!

My intentions were to take the entire month of July off from traveling with the band, but those plans were quickly changed. I will join back with Steadfast tonight as we sing at a benefit for Austin Adams in Campbellsville. Austin attended our youth group several times over the past few years and we have grown to love him. Several weeks ago, Austin was diagnosed with cancer. I still do not understand sickness, and why babies, children, teenagers and adults have to face unfair diseases, but I do know that we can lean on the Lord for comfort. Austin is a fighter and his attitude is amazing! He loves the Lord with all his heart and he is glorifying God with all that he has within him. I can't wait to be a part of such a great event tonight!

Continue to pray for our friend Sarah, http://www.caringbridge.org/visit/sarahgardner. She is in rehab now and still kicking her cancer in the butt! Read her blog and find out all the cool stuff that happened on her birthday! Phone calls from Dolly Parton, Rascal Flatts, Jeremy Camp and the Kentucky Headhunters!

Keep praying for us and that God continues to use Luke's story for His glory! God is opening doors for us to share His word and we are excited to see where this ministry will go.

Be Blessed!

Luke 1:37

-- Benson

Sunday, July 18, 2010

Faith...It's About a Personal Relationship

Kristin and I are still rejoicing from Luke's Celebration Service. We have had several people tell us they have not felt the presence of the Lord like that in a long time. I will be honest...it was thick! We prayed for the Holy Spirit to move...and He did.

A lot of people have asked how I had the courage to sing...again, it was the Spirit. There was never a doubt in my mind that I would not sing for Luke and for God. The biggest part of my ministry is my music, it's how I give all I have to the Lord, and it's the best way for me to exalt His name. I will say though, when Leah and I were singing I Will Rise and I looked over and saw Kristin standing and praising I almost lost it. Not because I was sad, but because my wife is awesome! She knows how to praise God when everything is going great in life, but more importantly she knows how to praise Him when everything seems to be falling apart as well.

Faith has been the topic of every conversation that we have had with people. Some say they don't know how we have that much faith. Others say they wish they had the faith we have. Several have said they hope to have that much faith some day. Folks, it's easy. Faith is not something you have to study about and be a Christian for X number of years to get...it's about trusting and believing! When you trust and believe that God is in complete control and that no matter what happens you will praise Him, you've got it! You may not always understand, there may be times when you are angry or sad, but you still have to trust and believe. But even further, it's so much more than saying, "I love you God, I know you are in control," it's about having a personal relationship with Jesus Christ! John 14:6 says, "I am the way, and the truth and the life. No one comes to the Father except through me." There is no other way to get to Heaven than through that relationship...either you have it or you don't. The GREAT news is that it is available to everyone! When you open your heart to that relationship, you will then realize that your faith has grown much stronger. There are many Christians that go to church every Sunday that still do not have the full relationship that is available to them...don't be one of those Christians, don't miss your blessings!

I am not sure why I went on the rant tonight, but the Lord said keep typing...I'm thinking there are people reading the blog that needed to hear it.

As Kristin and I continue to try and clear our minds and halfway make sense of what we have experienced the last several weeks, the Lord is still speaking to us. He continues to reveal areas in which He wants us to minister and we keep seeking His guidance. As hurt as we are to not have our little boy with us, we are excited to see where God is taking us.

Continue to pray for us. One thing specifically to pray for is that our appointment with the geneticists in a couple weeks goes well. We know the Lord is going to bless us with more beautiful babies, but we are scheduling an appointment to make sure that HLHS, and all the other complexes in Luke, are not hereditary. Our doctors tell us not to worry, but we want to make sure and clear that from our mind before we decide it's time to turn the Sexton 3 into the Sexton 4...not soon, but in due time.

Have a great week people!

Luke 1:37

-- Benson

Thursday, July 15, 2010

Expression of Gratitude

The past few days have been overwhelming...a nightmare if you please. No one expects to have to deal with what Kristin and I had to and no one could ever be prepared. However, God was present at Luke's Celebration and that is what we prayed for. Over 10 people rededicated their lives to Christ and all 350+ were touched by the Holy Spirit...we had church!

We want to thank everyone who visited the funeral home, sent gifts or flowers, gave monetary donations, brought food, sent cards or letters, made phone calls or anything else that I missed giving credit for. Again, we are overwhelmed by the support we have received and it is evident that our little boy's story reached a lot of people.

I am not sure when, but eventually Kristin and I will begin posting more on this blog and use it as one of our ministry tools for Luke 1:37 Ministries...so keep checking back. For now, Kristin and I are trying to gather our thoughts, rest our bodies and get back to somewhat of a normal life. Both Lindsey Wilson College and Campbellsville University have been gracious enough to allow me and Kristin time recoup before returning to work.

We pray that as we continue to try and grasp what has happened in our lives, that you take time every day to listen to God and to thank Him for the blessings in your life. Never go to bed without praying with your children and telling them how much you love them. Never let a day go by that you do not spend time with your spouse and keep the passionate fire burning within your relationship. Let God take your life to a new level, and always be bold in witnessing for Him.

For those of you that live in the local area, St. Andrew UMC in Campbellsville is hosting a Fish Fry tomorrow night, Friday, July 16th, from 5-8pm est in memory of Luke...all proceeds go to Luke 1:37 Ministries. Kristin and I will be there to share in the food and fellowship with everyone that attends. We know that God is going to bless this ministry and that many families will be able to experience the same love that we have received from all of you.

Luke 1:37

-- Benson

Sunday, July 11, 2010

Celebration of Luke's Life

Kristin and I spent the day making arrangements for our sweet boy's Celebration of Life Service. This will not be a typical funeral service but literally a celebration of our son and celebration of Jesus Christ. We ask that anyone making plans to send flowers or gifts to consider making a donation to Luke 1:37 Ministries so that Luke's story can live on and continue to bring glory to God...you can do so through the funeral home listed below.

Location
Parrot & Ramsey Funeral Home
418 Lebanon Ave.
Campbellsville, KY 42718

Visitation
Tuesday, July 13th
After 5:00pm est

Celebration of Life Service
Wednesday, July 14th
11:00am est
Parrott & Ramsey Chapel
Bro Brian Rafferty, Bro Troy Long & Bro Rob Hughes officiating
Musical selections by Steadfast and Hannah Ellis

Resting Place
Memorial Gardens
Campbellsville, KY

Again, thank you for lifting up our family through the past several weeks. Keep believing and keep praising God for the blessings in your life!

Luke 1:37 - Nothing is impossible with God!

-- Benson

Saturday, July 10, 2010

Resting in the Arms of Jesus

As many of you probably know, Luke went home to see Jesus last night. Yesterday was a the nightmare of all nightmares for me and Kristin as his little body took an extreme turn for the worse. As a father, I cannot find the words to explain what his little arms and legs looked like. The doctor's are still not quite sure why the perfusion stopped to his extremities, but by noon yesterday there was no blood flow to any of them. If he had survived off the ECMO support, his limbs would have been amputated.

In the coming weeks we will take journeys back as we recall the few days our son had on this earth and how it made each of us grow closer to the Lord, and grow closer as a family. For the next few days, we will arrange Luke's Celebration Service, one in which God will orchestrate and the Holy Spirit will minister.

I will tell you that we had church last night and it echoed throughout Kosair. Brian Rafferty, Troy Long and Rob Hughes led a special Christening Service that turned into a worship service. Leah Hayes sang like she has never sang before to her little boyfriend. But most of all, God was glorified. We thanked Him for the ministry opportunity that He gave our son.

Though Luke was not healed in his physical body, he received complete healing last night! As hard as it will be for Kristin and I for the rest of our lives, we know that we know that we know that Jesus is Lord and that He did not fail us. We prayed for healing and for His will to be done. We never gave up on our son or on the promise of healing. Down to Luke's last breathe, we spoke life. God is the same yesterday, today and forever. Our faith is not superficial and neither is our Savior. He is the King of Kings, and the the Lord of Lords.

Our prayer today is that as we begin to grieve the loss of our son, you will celebrate the miracles in your life. Thank God for all your blessings, and most of all draw closer to Him and enter into a personal relationship with Him.

Continue to lift my family up in your prayers. We never dreamed that we would ever have to face this kind of storm in our lives, and we don't understand why it had to happen, but we know that we have a support system beyond comprehension and that our little boy touched the world.

Luke 1:37 Ministries is alive and will always proclaim and believe that "Nothing is Impossible with God!"

-- Benson

Thursday, July 8, 2010

Never give up.

Things are still pretty much the same as this morning. It is tough to hear doctors give you "permission" to decide when Luke has fought as long as he could. As the doctor looked me in the eyes and told me to let them know whenever I felt like we had done everything we could, I literally almost threw up. In that moment, I looked down at Luke who was trying to cry but no sound was coming out (since he is on a ventilator) - and my heart broke into. The worst pain in the world is to see your own baby hurting, knowing there is nothing you can do to help. However, in the midst of that horrible pain, the Lord spoke to me - My Father in heaven experiences the same pain when His children hurt. When Jesus was on the cross, crying out, God's heart was broken. He feels our hurts, He knows our pain, He is our Abba Father. He doesn't turn His ear away from us when we cry out to Him - but comes to comfort, protect and strengthen. Most of all - God never gives up on us.

I thought about that for a while. God has never ever ever given up on me. Even when I messed up beyond measure, He BELIEVED in me. He did not create me, you or Luke just to forsake us when things get tough. He is our biggest cheerleader in the good and bad times. When the whole world turns against us and tells us that there is no hope, that things are beyond repair - Our heavenly Father is still on our side. He never gives up on us.

I understand that doctors are doing what they have to do. They don't want to see my son suffer any more than I do. I appreciate their honesty. However, as Luke's mom - I am convinced in my heart that, just as God the Father believes, I believe in Luke. I cannot give up on my sweet baby boy. As long as he wants to fight, Benson and I will stand beside him and fight along with him. Only the Lord knows what is BEST for Luke - and I have peace in placing Luke's life in His hands.

Pray with us that Luke's body will perfuse blood into his hands and feet. In order for Luke to have a chance - blood has to begin to flow into his arms and legs...now! We know this is possible. Doctors told us today that they didn't expect him to do well without ECMO oxygen support the other day and that they were actually amazed that he made it over 9 hours breathing on his own. Anatomically, Luke was not supposed to do that well - but we know that the prayers of many and the grace of God are what made our little boy surprise doctors. We know that heart babies are supposed to have problems with their kidneys after surgery - but by prayer and power, our little guy is the king of producing pee. God is answering prayers and giving us miracles.

We truly believe that satan is trying to come in between the healing of our little guy by stopping blood flow to the hands and feet that are moving mountains. Satan does not want Luke to prosper, so he is coming at us from every angle. Join us in rebuking any hindrance that comes against our baby - in the name of Jesus, satan has to flee!! We destroy any evil spirit that is keeping blood from flowing through Luke and claim victory over the enemy on behalf of our child. God desires for Luke to have abundant life and, as his parents, we receive the miraculous gift that God has begun in Luke's life. Please pray with us, please...pray, pray pray.

Luke - we love you. Oh, how we love you! We believe in you. We are beside you and as long as you want to fight little buddy, you fight. God is in your corner and He will never give up on you. Neither will we, sweet boy. We will never give up.

-- Kristin

The Cry of Parents

Allysa Gooden shared this Scripture with me this morning, and it is what we stand on today: Lamentations 3:55-57 says, "But I called on your name, Lord, from deep within the pit. You heard me when I cried, 'Listen to my pleading! Hear my cry for help!' Yes, you came when I called; you told me, 'Do not fear.''

Luke is not doing well again today. His feet and hands are not receiving proper blood flow and the doctors say that those tissues may be dying. They say there comes a point where they do things 'to' Luke instead of 'for' Luke. They do not believe we are totally at that point, but it may not be long.

We still stand firm on our faith and believe that nothing is impossible with God.

-- Benson

Wednesday, July 7, 2010

What a day...

Just when you don't think your days can get tougher...they do. I have never had the feelings I have had today. Honestly, without my faith in Christ I would be a basketcase. However, I serve a God that healed the blind and raised men from the dead. That God is still the same today as He was yesterday, and He will be the same even tomorrow. Luke's life rest in His will and His ultimate plan...through that we find comfort.

Seeing Luke's little arms and legs today has been devastating. The color is hard to explain, but a purple-ish is the closest I can come up with. The doctors still say tonight that even though it appears he has made some small steps today, this is a very serious issue. I mentioned earlier today that it was the Heparin...well, it wasn't. Several tests have been run today and now the only explanation is that his body is not allowing good blood flow to his extremities for some reason. Kristin and I talked to Dr. Austin tonight and he said that he wants to give Luke every chance possible. We will probably wait another 48 hours starting tomorrow morning to see if blood begins to circulate through his arms and legs...if it doesn't, it is potentially fatal as it will indicate that the heart will not be able to pump blood every where it needs to. Up until this point we have seen God answer a lot of our prayers. We prayed for pee...we got it! We prayed for veins...they are showing blood flow on the echocardiograms! Now we need to pray for BLOOD FLOW TO LUKE'S ARMS AND LEGS! Come on prayer warriors, it's time to go to battle!

To end tonight I have to say that once again I am overwhelmed by the amount of traffic on this blog. The Word of God is spreading throughout the entire world. Today alone, as of this minute, there have been 14,834 page loads by 8,835 different people! These hits are coming from all over the US as well as Canada, Mexico, Australia, Saudi Arabia, Costa Rica, and a few more countries. It is amazing to see what God is doing through our little boy. Our prayer is that God is using Luke's will to fight this sickness to bring people to their knees and find a personal relationship with Him.

Parents, make sure you pray with your children tonight before you put them to bed...I know I will!

-- Benson

Please pray...we have to have a miracle

2nd UPDATE: Luke has stayed strong this afternoon. I feel in my spirit that once again he is beating his odds. I can't describe the feeling I get every time I see his little arms and legs and the color they have turned...however, the doctor said that he thinks his color is getting a bit better.

Kristin and I have cried a lot and we have laughed a lot. When Kristin told me she posted the Caring Cards link yesterday, I immediately started to laugh. I went on to say that we will be billed for a new printer, toner, ink cartridge and paper. Each time the girls visit Luke's room with goodies, they bring a stack of Caring Cards...all we can do is laugh at their reactions to volume and then we cry as we read your wonderful words. Keep them coming folks, not to bring attention to any of my family, but to show what God has revealed to you through my son's life. In our deepest, darkest moments, we read your Caring Cards, emails, facebook posts and text messages and it provides the counseling we need to pull through.

We mentioned in an earlier blog that over a year ago we prayed for God to use us in extraordinary ways...sometimes the answer to prayer is scary. But, we know that God has used our boy's heart to touch the hearts of many people. Luke 1:37 is alive and spreading the news that NOTHING IS IMPOSSIBLE WITH GOD.

UPDATE: After cardio rounds we found that Luke literally must have a miracle to survive. They are doing everything they can to help his little body try to recover. All his meds have been changed out and all the Heparin has been stopped. A new blood thinner is being issued; it is a medicine that is not used a whole lot from what we understand. The doctors are turning all support back on full flow and giving him 24 to 48 hours to pull out of this setback. It really is up to the Lord from this point on.

As you might have guessed, Kristin and I are very tore up this morning. We have not lost faith that God can heal our little boy fully and we are walking by faith and not by sight. Even though his body and his situation looks bad, we are resting on our faith.

So today as you pray, pray that God completely heals Luke. Pray that when the doctors visit his room the next time, the only thing they can say is, "It's a miracle!" But also, give God praise and glory for what He has done. We have experienced many miracles in the last week. God has revealed Himself in many ways and thousands of people have been touched. God has used our little guy as an evangelist. People are on their knees for the first time in a long time - maybe ever, restoration has taken place, lives have been changed, relationships restored, brokenness made whole, people have reevaluated their priorities and the greatest of all - people are coming to know Christ Jesus! In my family's darkest hour, God is moving - and we pray that He continues to move. He is worthy to be praised!

Thank God today for all the small things in your life. Kristin and I would give up everything we have in order for Luke to be healthy and wake us up screaming and crying in the middle of the night because he is hungry; it's the small things in life that really matter the most. We pray that God blesses each and every one of you today as you draw closer to Him.

Luke is having a bad morning. His body seems to not be tolerating the blood thinner, Heparin, right now. His little arms and legs are really purple and it is a scary sight. Please pray that as the doctors and nurses work to change his medication that his little body begins to react in a positive way.

-- Benson

Tuesday, July 6, 2010

A special request for Luke!

Luke has been off ECMO oxygen now for almost six hours and is doing very well. His oxygen levels on his vent have been turned down to 50% and so far, the doctors are pleased with his blood gases. Keep praying that Luke does well and that his lungs are able to continue working on their own.

Please pray for Benson and I as well. I know he mentioned on the previous post...but the past two days have been really tough on us. He is the most perfect little baby. I keep picturing what he would look like with all of those tubes and wires off of him and what it would be like to be at home with him right now. I think of his nursery and bassinet sitting beside our bed and sitting at home on the couch with him in my arms. I think of how things should be - and it breaks my heart. He is everything I ever dreamed of and I would give anything in this world for him to be a perfect, healthy little boy. I know that we are going through this for a reason and that God is in control but when you sit where we sit every minute of the day watching nurses do everything they can to save your baby's life - it really begins to wear you down. I wish that I could be the mom that I always dreamed of being to Luke right now. I wish I could change his diapers and sit up all night and rock him to sleep. I wish I could just hold him and tell him its all going to be okay. I know God chose us for this and I have a real peace inside, so does Benson, but that doesn't mean that our hearts don't hurt. The only thing that gets us through every second of the day are your prayers and comments. We read them constantly over and over again and it gives us strength in knowing that people are being touched by everything we are feeling. So....

Benson and I have a special request for ALL of you. We would like to be able to share with Luke how his life is touching the world. We know the strength that it gives us and we can only hope that by reading your words to him will give him strength as well. We will keep all of them and put them in a book so we can read them to Luke every day and show them to him when he gets older so he will be able to know what a miracle he is.

So if you have been touched by Luke, please - take the time to send us a "cheer card". These are printed out and delivered to us every day and are the easiest way for us to have something to hold on to while we are here at Kosairs. You can send them by going to: http://www.nortonhealthcare.com/body.cfm?id=26. Here is the information below:

Luke Sexton
Kosair Children's Hospital
Room 408

You can write up to 500 words. If you would like to write something longer, feel free to email them to us at bensonsexton@hotmail.com. Also, if you would like to send cards or packages you can mail them to:

Kosair Children's Hospital
Luke Sexton
PICU
231 E. Chestnut Street
Louisville, KY 40202

Please be as open as you feel led to be. We want Luke to know exactly how the Lord is using him in lives of people he has never even met. We look forward to getting them and reading them to our son. Please pass the word along so that everyone who wants can have the opportunity to encourage our little guy. We thank you in advance for your outpouring of love and support. It really means the world to us.

Here are some more pictures of our little man. He is looking more and more like himself these days!


Sleeping like a baby.

Holding Mommy's hand.

Luke's little buddy that helps him hold up his ventilator.

His crawdad toes! They stay open like this all of the time.


Looking at Mommy on my birthday. See how handsome I am! :)

Happy Birthday Luke! You made it through your first week in this big scary world. No one thought you would be with us this long...but you are a fighter and Mommy and Daddy are so proud of you! Keep it up sweet boy. We love you more than you'll ever know.

-- Kristin

A huge step up the mountain...

Yesterday was a great day for Luke. He is a hit at Kosair and everyone that works here stops by to see him. His case is so rare that no one here has seen it...they have seen both issues before, but never both in the same baby...Kristin and I would have the baby with the most complex heart.

One thing I'm not sure a lot of you know is that Kristin and I see our baby's heart every time we look at him. I'm not talking about on a screen or through an ultrasound, but we actually see his little heart. The surgeons left his chest open and put a patch over it to allow room for swelling and other stuff. The patch looks like a piece of saran wrap. It's easy to tell who has seen a baby's heart open before and who hasn't...some of the nurses or students that stop by get very big eyes when they first see it. Kristin and I are so use to seeing his heart that it will be weird when they close his chest and we can't see it. This is the main reason that we do not allow anyone outside us and Luke's grandparents in the room. Not many parents in this world can say they have seen their child's heart.

Luke's lungs will be asked to work hard today. After a great test yesterday, his oxygenator on the ECMO will be turned off and his oxygen in the ventilator turned to 70% for as long as he can tolerate it. If he continues to experience supernatural progress, these settings will stay this way...this is a huge step up the mountain.

As for Kristin and I, we had a very rough day yesterday. One thing we promise to be is open and honest, and honestly, we struggled yesterday. The whole situation hit us both and we felt overwhelmed beyond description. One of the main things everyone tells us it to take care of ourselves, so we left around 7:00pm and crashed at the hotel. It was nice to just be together and to reveal our emotions to each other. We know that God is watching over us, but that doesn't always make it easy. We are going through this test in life for a greater purpose...one which we do not know right now...but what we do know is that God is and will continue to receive glory for His works.

The comments and storys that we hear about how Luke has changed people's outlook on life and how his situation has brought them closer to the Lord keeps us pressing on. Our prayer from day one has been that God is glorified and that people draw closer to Him...that is evident.

Stop by later for a mommy perspective from Kristin.

Luke 1:37

-- Benson

Monday, July 5, 2010

Supernatural Progress

UPDATE: The PICU doctor just came in with the results of Luke's oxygen test and he did great! The doctor walked in and had a big smile and said, "Well, I'm pleasantly surprised. His oxygen levels look beautiful! His lungs are functioning well!" From here...they will turn all the support back up to full levels and allow him to rest the remainder of the day. Tomorrow they will continue with tests...and continue to be absolutely overwhelmed by his Supernatural Progress! Pray for growing pulmonary veins, strong blood flow through the lungs and a lot of pee! By the way, the pee prayers are being answered like crazy! They are saying his kidneys are perfect and that he has become a peeing machine! 

Before I begin, I want to send a big congrats to Dr. Mascio and his family as he and his wife welcomed their new daughter to this world this morning.

My great friend and pastor at Great Oaks Ministries, Troy Long, has continuously prayed the words Supernatural Progress. Well...this morning I believe we have seen results. The cardio team is quite surprised by the past 24 hours and could not be more pleased. Luke's lungs are looking much better as the fluid is leaving his body. They are also seeing blood flow through the pulmonary veins, which is something that we have asked people to specifically pray for.

Dr. Austin's words last week were along the lines of not giving him a chance, or very pessimistic, but today, he clearly says that he is cautiously optimistic. That is a sweet song to a mommy and daddy. Luke is taking small steps up this large mountain, but he is a fighter!

Leah Hayes text me late last night and told me I better sing The Blood to Luke before the doctors came in this morning. So...when I entered his room this morning, I leaned down to his little ear and we worshiped together.

The Blood Will Never Lose It's Power - Crystal Lewis

VERSE 1
The blood that Jesus shed for me, way back on Calvary;
It's that blood that gives me strength from day to day,
It will never lose its power. 
CHORUS
It reaches to the highest mountain. it flows to the lowest valley.
The blood that gives me strength from day to day,
It will never lose its power. 
VERSE 2
It soothes my doubts and calms my fears, it dries all my tears.
The blood that gives me strength from day to day,
It will never lose its power.

As Luke climbs from the valley to the mountain, God is the same! He will never leave you or forsake you and He will hold strong to His promises! Here is another song that speaks about the presence of our God:

God on the Mountain - The McKamey's

VERSE 1
Life is easy when you're up on the mountain
And you've got peace of mind like you've never known.
But then things change and you're down in the valley.
Don't lose faith for you're never alone.

CHORUS
For the God on the mountain is still God in the valley.
When things go wrong, He'll make it right.
And the God of the good times is still God in the bad times.
The God of the day is still God in the night.

VERSE 2
You talk of faith when you're up on the mountain.
Oh but the talk comes easy when life's at its best.
But it's down in the valley of trials and temptation
That's when faith is really put to the test.

Luke has some very big tests coming up this week. In just a few minutes, his oxygen support through the ECMO will be turned down and his lungs will be tested to see if they can support themselves. Every doctor has said they do not expect this to go well today and just want to get a measure so they can set goals for his lungs. I go to a Higher Power and claim that Luke's little lungs will experience Supernatural Progress as the Lord receives glory and praise for His work. I praise Him ahead of time for the work that He has already started! So...here is something specific to pray for...great blood flow through the lungs! Pray that in the name of Jesus!
 
In addition, we still need more fluid to drain...so pee Luke pee! The BIG mountain is still the pulmonary veins, and even though they saw blood flow there this morning, they need to grow. I serve a God who created the entire universe...He is great at making veins! Pray for the growth of the pulmonary veins in Jesus name!
 
The rest of the day Kristin and I will sit here next to our son anxiously awaiting all the reports from the oxygen levels. While we sit, we will pray for our son, but our hearts are in prayer for a few more specific families as well. Join me in praying for my great friend Sarah Gardner, you can read her story here: www.caringbridge.org/visit/sarahgardner, our new friend Rhyan Beverly, you can read her story here: www.caringbridge.org/visit/rhyanbeverly, and our friend Crystal Wright as she delivers her beautiful baby boy today!
 
We serve an amazing God, and since I am on a song kick today I will leave you with one more:
 
Our God - Chris Tomlin
 
VERSE
Water You turned into wine, opened the eyes of the blind
There’s no one like You, none like You
Into the darkness You shine, out of the ashes we rise
There’s no one like You, none like You

CHORUS
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome in power
Our God, Our God

BRIDGE
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
What can stand against?

Holy Spirit, dwell in Luke's room. Bring the touch of Jesus, and expose Yourself through Supernatural Progress! 

-- Benson

Sunday, July 4, 2010

Happy 4th of July Little Luke!

Well, we've learned one thing about our little boy - he likes to throw parties! He threw himself a huge birthday party the night he was born and invited all the NICU staff, cardiologists and surgeons. They got him a big ECMO machine as his birthday present - but Mommy is hoping to get rid of it soon.  :)  Then this morning, he thought he would throw another 4th of July party with his nurses, OR staff and Dr. Mascio. He just loves to entertain people I guess.

Luke has spent the rest of his first 4th of July getting lots of rest and getting rid of lots of fluid. Tonight, our nurses decided to move his head around and clean up his hair a little. He is looking so handsome the doctors will hardly recognize him during rounds in the morning! Turns out that his hair is actually brown and not black like we first thought (sorry Leah!) but it still beautiful. Once he was all rearranged, he opened his right eye and was finally able to look at Mommy and Daddy. It was the first time we had see his little eye since right after he was born.

Depending on how Luke does tonight, doctors may begin to gradually turn down his ECMO machine early in the morning during rounds. However, there is a possibility that they may give him another day and wait to challenge him on Tuesday. We are praying for an extra extra good night tonight and for the Lord's hand to be on Luke in the morning to give him miraculous strength to work that little heart on his own.

Benson and I can't get over how much we can love a little guy so much. If love could be enough to make that special heart work, we would already be home! However, we know the Lord is in control and we are waiting patiently on His timing for Luke's miracle to be revealed.

-- Kristin

Petition for Prayer

2nd UPDATE: Luke's gases and acid are normal, and for a baby on ECMO that is very abnormal. There is a Presence in his room...the nurses just smile. Now, he's stable and his body is resting perfectly. The most critical point in Luke's little body is his pulmonary veins. We have been told numerous times that they have to miraculously grow in order to do their job. So...we are turning to the Miracle Worker! Pray for veins! Luke 1:37

UPDATE: Luke's procedure is finished and he did very well. Dr. Mascio was able clean the chest out and said it looks quite nice now. He also said that it appears Luke is draining fluid well and that is our goal for the rest of the day.

So...when you are praying today...pray for...PEE! Pee Luke Pee!

This is a quick petition for prayer:

Luke has quite a bit of bleeding this morning. Dr. Mascio will explore the chest at 10:30am est. This is said to be a routine procedure for a baby on ECMO. However, for parents to see the little guy's chest patch full of blood is very scary. Please pray that it is nothing more than just a result of thinned blood. Today is suppose to be a restful day for Luke; please pray he is able to get some.

On a very positive note...

Luke's output of urine was very good last night. That is a sign that his kidneys are working and that his body is attempting to push the fluid off it. Let's hope this keeps up!

While you are praying, make sure you give God all the praise and glory that He deserves. Praise Him for the small things in life that we too often take for granted.

NOTE: DO NOT miss out on Kristin's post from last night right below this one!

Luke 1:37

-- Benson

Saturday, July 3, 2010

Blessed.

Update: Luke had a really great day. He was able to get rid of a lot of fluid but still has a long way to go. Tonight, as we were sitting there - the nurses noticed that his blood pressure and other stats were starting to go up a little after being the same for a long period of time. After they mentioned his rising numbers, I looked over to his bed and saw his little tiny arm reach up to the sky - almost like he was praising the Lord! I went over and watched as he moved his little fingers and kicked his leg. He had been taken off his paralytic meds yesterday morning but was being kept heavily sedated so his body could rest. However, Luke decided to wake up a little bit and show Mommy and Daddy that he was still hanging in there. It was the first bit of life that we have seen out of him all week. After sitting there day after day staring at him while he didn't move a muscle, I had started to almost forget that he could move. Tonight, he would wiggle and respond when he heard our voice or felt our touch. It was almost like he was saying "Hey, I'm here...don't give up on me!" Of course, the doctors and nurses want him to stay asleep and rest - but it was still good to help lift our spirits.

Luke also showed some signs that his heart may be rebounding from surgery. His blood gases showed signs of improvement and they thought his heart rhythms looked a little more "snappy" - meaning that Luke's heart may be trying to work some on its own. He still has a huge mountain ahead of him but we will take any small step in the right direction - no matter how small it may be! Keep praying specifically that Luke will be able to move fluid off of his body and that his body will recover from all the stress of surgery on Thursday. We are praying in advance that his pulmonary veins will begin to grow and that his lungs will be able to work with his heart to support his body without ECMO on Monday! We are praying for a miracle...but our God is in business of working miracles and I am claiming that with all of the prayers being lifted up for Luke - He is in the process of working that miracle right now.

We are so blessed.

Today, I keep repeating in my mind just how much we have been blessed. It is so easy to allow satan to fill up our minds and hearts with bitterness and anger over our situation. There have been moments when I will admit that I was upset with God. However, I refuse to open the door to allow satan to build up those thoughts inside me. Today I claim - we are blessed.

First of all, we are blessed that the blood of Jesus has covered our sins and that He died on a cross to give us victory over every battle in our lives. We are blessed that the Lord is on our side and that no weapon formed against us shall prosper. We are blessed that we have one another - a bond so strong and so anointed that the strongest of storms only makes our love stronger. We are blessed with a family that stands beside us, supports us and fights along with us. We are blessed with a son who has a strength inside his tiny little body that is overwhelming. We are blessed that his life is literally moving mountains for the glory of the Lord - mending broken relationships, strengthening people's faith and drawing men and women to their knees. We are blessed to be part of something bigger than we ever dreamed of. Yes, our baby is sick. Yes, his prognosis is not good. Yes, he may not make it. We may be struck down - but we are NOT destroyed. We serve an awesome God who has promised us that He will never leave us or forsake us. So today I claim that we are blessed.

A month or so ago, I wrote about the day I found out about Luke's heart condition and how in that moment everything changed. That day, life was no longer about me - but all about Luke. The day that Luke was born and put on ECMO, I realized even more that it wasn't about me, or even about Luke...but it was ALL about Jesus. It is so easy to focus our lives and our desires on what we want to happen. Ultimately, it is all about bringing glory to the Father.

I know in my heart that children are a gift from the Lord and more than anything - Luke belongs to Him. Every second I have the opportunity to be his mother is a precious gift the Lord has given to me. The day he was born, I held him for one minute but I know that when I kissed his forehead and handed him over - I didn't just hand him to a nurse. I handed him back over to the hands that created him. I gave him back to the Lord and I have a peace that surpasses all understanding in knowing that my sweet little boy is exactly where he needs to be. The Lord is still completing the good work He began in Luke's life and this season of fear and uncertainty is just part of the big picture God has painted for Luke and the testimony he will one day be able to share with the world. Benson and I are just blessed to be able to be a part of Luke's amazing story.

-- Kristin

Friday, July 2, 2010

Introducing Luke Aaron!

Quick update from tonight: Luke is doing good and is holding steady. They want him to rest as much as possible. His body is still in shock from surgery so hopefully by letting him rest for a few days his organs will be able to bounce back and his heart will be able to pick up and function like it is supposed to. Eariler today he was having trouble passing fluid. He had only peed about 7cc's of fluid the entire day. Tonight around 8pm he peed a whole 6cc's at once! Hopefully he will continue to do so during the night. They took him off his paralytic meds this morning so today he began having hiccups and even wiggled his toes tonight when I touched him, which was so exciting to see. He has a really long way to go and is still in super critical condition - but today was a good day and we praise the Lord for it.

Ok, on to the post and pictures...

Tuesday, June 29th 2010 was the most amazing and most terrfying day of my entire life. We woke up that morning around 5:00am, anxious and excited, knowing that in a few hours we would finally meet our son for the first time. Benson had set aside a special outfit (his favorite UK polo and shorts) to wear when he held his little boy for the first time. I sit here and cry writing this just remembering how happy and excited Benson was that morning. Since the day I met him, Benson had always told me how he could not wait to be a dad. Finally, that morning I would be blessed to be able to be a part of making one of his greatest dreams in life would come true.

 On our way to the hospital...

We settled in our labor and delivery room at Norton's Hospital. They started me on Pitocin around 8:30am and I was 2cm dilated and 75% effaced. For hours, our family just sat around in the room watching soccer and laughing together. I tolerated labor really well and didn't even feel contractions until around 2:00pm. They broke my water at 4:00pm and around 6:00pm, I was 5cm dilated and the contractions were becoming a little more intense but still tolerable. I decided to go ahead and get the epidural (which I didn't even feel when they put it in!).

Our last picture together before becoming parents!

At 8:30pm I was finally 10cm and ready to start pushing. Mom and Benson stayed in the delivery room and helped me every step of the way. Benson was in full "coach" mode and got so excited I had to nicely ask him to quiet down. He was incredible though and I definately couldn't have done it without him. We laughed with the doctors and nurses between contractions and I never once became frustrated or overwhelmed. The peace in the room was so thick that I was able to enjoy every second of bringing my little man into the world. The moment Luke arrived the whole world stopped. I hold on to the memory of that moment - his first weak little cry, the look on Benson's face when he saw him, the tears that streamed down my mom's face we she became a grandma, his head full of hair and his long little legs. In that one special moment, everything was perfect. 

Welcome to the world Luke Aaron Sexton!
6lbs 10oz and 21.5 inches

We all cried tears of joy as they cleaned him up. He was very blue and he wasn't crying much but at that time, we were not even thinking about him being sick. We were just so overwhelmed to finally see this little life that I had carried around for nine months that we didn't even think about things being wrong. They handed him to Benson to hold for a few brief minutes and then he handed him over to me. I remember looking at him and wrapping his little fingers around mine. I kissed his forehead and told him over and over again how much I loved him. He was so quiet and still and I knew that as much as I wanted to keep him with me - he needed to go to the NICU so I did not hesitate to hand him over and let Benson go over to the nursery with him. That was the last time I was able to hold my baby and the last time I saw him without any tubes and wires. I would give anything to go back to that moment and have him in my arms.



Hours later, our world turned upside down. After settling in recovery, my nurse literally came running in, put me in a wheelchair and ran through the halls of the hospital. When we reached Kosair's NICU, they were waiting for me with the doors wide open. I walked into a room of 50 people standing around my baby. For several seconds, I honestly didn't know if he was even alive. I started screaming for people to tell me what was going on. He was just laying here as dark blue as he could be struggling for every little breath. It was the most terrifying moment imaginable.  You all have read the story on Benson's posts so there no need for any more detail. He was immediately placed on ECMO to save his life. The next morning he had a heart cath to map out his heart. These pictures are taken the morning of his Norwood operation.

Warning: Some of these pictures may be rough for some of you to see. However, they are our reality. To us he is beautiful no matter what and those wires and tubes are what have kept him with us this far so in our eyes they are beautiful too.

This is Luke's ECMO machine. His bed is behind it (next to the green piece of paper). It is takes up most of the room. He has several other machines connected to him on each side as well.

The red spots on his chest and face are a skin reaction from the cath. You can see all of that beautiful hair and funny little sideburns.


As you can imagine, every one of his hands and feet have IV's coming out of them as well as in his umbilical cord stump.

Monitors on his closed chest. After his surgery on Thursday, they had to leave his chest open to allow for swelling. It will be awhile before they are able to close it.

We are not putting any pictures of him post-op simply because it is tough to see. His face and body are completely swollen - he doesn't even look like a little baby. Once his swelling goes down, we'll post some more.

It has been a roller coaster ride to say the least. Unfortunately, this is just the beginning. Everyone in PICU keeps reminding us that we have to take everything day by day, hour by hour. We are thankful for every second we can sit beside him and be his mom and dad. There are moments when we are full of optimism and hope and there are times when we can barely pick ourselves up off the ground. We cry a lot - but we laugh a lot too. We aren't letting Satan steal away the joy of the first few days of having our sweet little guy. God has held us in His hand and guided us through every moment. Luke may not be able to cry right now - but he speaks to our hearts every second. His life has reached thousands of people from multiple states and it has only just begun. I praise the Lord for sending us such an amazing little guy. As much as I wish things were different, I know the Lord is using him in ways that I could never have imagined. God made him exactly the way he was supposed to be for a reason. No matter how messed up the doctors may say his little heart is, I look at him and know that he couldn't be more perfect.


-- Kristin

6,000+

We are overwhelmed by the outpouring of the love of family, friends and complete strangers. Yesterday alone, our visitor calculator was off the charts with 6,000+ visitors! Our son's story is touching the hearts of many people and we are confident that God is using Luke to bring glory to His name!

Keep praying folks. Luke had a rough morning with a lot of fluid build up and were told a couple times that his chances do not look good. However, after Kristin and I went to the hotel to cry, pray, clean up and gather our thoughts, we returned to the hospital to find out that he is much more stable now and that he is doing as well as can be expected.

We are told this is how most of the weekend will probably go and then starting Monday morning they will see how well his heart and lungs will function after turning down the ECMO.

Were are holding strong to God's promise that 'Nothing is impossible with God!' -Luke 1:37

Stop by late tonight or tomorrow morning to see pictures of Luke!

-- Benson

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