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

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