Luke's first 24 hours...

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

Let the madness begin...

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

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

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

Fast forward an hour...

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

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

7:00am this morning...

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

4:15pm this afternoon...

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

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

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

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

About a half hour later...

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

So...here we are...

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

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

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

-- Benson