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!