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
Wednesday, June 30, 2010
Saturday, June 26, 2010
We are ready for you Luke!!!
Our bags are packed and in the car.
The nursery is ALMOST finished.
The trash has been taken out and the house is clean.
The car seat is installed.
So, we sit...and wait...until I go into labor or until Tuesday morning - whichever comes first.
We still cannot believe that we are almost there. This is officially our last Saturday as a family of two! Luke will be here, ready or not in three days.
Here are a few pictures of Luke's nursery.
The nursery is ALMOST finished.
The trash has been taken out and the house is clean.
The car seat is installed.
So, we sit...and wait...until I go into labor or until Tuesday morning - whichever comes first.
We still cannot believe that we are almost there. This is officially our last Saturday as a family of two! Luke will be here, ready or not in three days.
Here are a few pictures of Luke's nursery.
After many months of waiting, I finally have the bedding I wanted! Now if Target would just hurry up and ship the crib skirt and curtains - Luke's room would be completely finished!
Thursday, June 24, 2010
Countdown to baby!
We had our last appointment in Louisville yesterday! We will go in for induction next Tuesday morning unless he decides to make an early appearance before then. I am 1cm dilated and 25% effaced and Luke's head is fully engaged, so Dr. Tabb thought there was a possibility I may not make it till Tuesday...but I guess we will just wait and see! Either way, we are less than five days away from Luke's arrival!
Doctors are still feeling really good about Luke's heart. They were able to get a good view of it again yesterday and things still looked the same as last week. Dr. Tabb felt confident that the pulmonary artery and aorta are normal size - which indicates that there is blood flow in the left side. Now, we just have to wait and see what tests show after Luke is born to find out exactly what that means in terms of surgery and how things will proceed. Dr. Tabb told us again before we left that in his 30 years of doing high-risk fetal medicine that Luke has the best hypoplastic left heart that he has ever seen. We are definitely praising the Lord for such positive words from a doctor that we have full confidence in and continuing to pray for tests to show a fully functional left ventricle once he is born.
Everyone keeps asking me if I'm ready, and yes, part of me is so ready to see his little face and hold him for the first time. The other part is really sad that my pregnancy is coming to an end. When I first found out I was pregnant everyone talked about how miserable I would be, but honestly, I have loved even the most painful moments of it. I have been blessed with very little sickness and fatigue and have really felt better then when not pregnant. It has been the most amazing experience - one that completely changes your life and how you look at the world. It's crazy to think that this day is finally almost here!
I will admit, I am a bunch of nerves thinking about Luke's birth. It is enough to be nervous about the birth of your first baby - much less adding on all of the other unknowns that we are facing. We know that there are so many people out there who love and are praying for us and we could never tell you just how much it means to us. However, we are asking that instead of coming to visit us in the hospital that you would just lift us up in prayer from home instead. Luke's birth will not be a "normal" situation and no one except immediate family will be able to see him right after he is born - possibly not even for several days after depending on what happens in terms of surgery. After his birth, he will be immediately taken over to Kosair's NICU where tests will be run to determine his final diagnosis. I will be recovering and will obviously have a lot on my mind. Benson and I will have doctors coming in to discuss test results and go over decisions regarding Luke's condition. Needless to say, it will be a very chaotic and emotional time for us all. The most love and support you can offer us is through prayer. We will let you know later, once Luke is stable and we know more about what our future holds, when we are ready for visitors outside of our immediate families.
I am so excited to see how the next week will change our lives. I am even more excited to be part of something incredible the Lord is doing through my little boy's heart. I am scared, anxious, nervous and overwhelmed but I know that the victory over our situation has already been won. The Lord fought my son's battle and paid the ultimate price on the cross. When I am reminded of that remarkable, earthshaking power - I have peace. No matter how scared or nervous I may feel - I know in my hearth that the Lord is still on His throne and is the same yesterday, today and tomorrow. He will still be the same God next Tuesday when I am in labor and when Luke is born. In the moment of my greatest fears, He will be there and He will hold my son's heart in His hands. Right now, I have no idea what will happen but the Lord has promised me His presence and that alone is enough to get me through anything.
-- Kristin
Doctors are still feeling really good about Luke's heart. They were able to get a good view of it again yesterday and things still looked the same as last week. Dr. Tabb felt confident that the pulmonary artery and aorta are normal size - which indicates that there is blood flow in the left side. Now, we just have to wait and see what tests show after Luke is born to find out exactly what that means in terms of surgery and how things will proceed. Dr. Tabb told us again before we left that in his 30 years of doing high-risk fetal medicine that Luke has the best hypoplastic left heart that he has ever seen. We are definitely praising the Lord for such positive words from a doctor that we have full confidence in and continuing to pray for tests to show a fully functional left ventricle once he is born.
Everyone keeps asking me if I'm ready, and yes, part of me is so ready to see his little face and hold him for the first time. The other part is really sad that my pregnancy is coming to an end. When I first found out I was pregnant everyone talked about how miserable I would be, but honestly, I have loved even the most painful moments of it. I have been blessed with very little sickness and fatigue and have really felt better then when not pregnant. It has been the most amazing experience - one that completely changes your life and how you look at the world. It's crazy to think that this day is finally almost here!
I will admit, I am a bunch of nerves thinking about Luke's birth. It is enough to be nervous about the birth of your first baby - much less adding on all of the other unknowns that we are facing. We know that there are so many people out there who love and are praying for us and we could never tell you just how much it means to us. However, we are asking that instead of coming to visit us in the hospital that you would just lift us up in prayer from home instead. Luke's birth will not be a "normal" situation and no one except immediate family will be able to see him right after he is born - possibly not even for several days after depending on what happens in terms of surgery. After his birth, he will be immediately taken over to Kosair's NICU where tests will be run to determine his final diagnosis. I will be recovering and will obviously have a lot on my mind. Benson and I will have doctors coming in to discuss test results and go over decisions regarding Luke's condition. Needless to say, it will be a very chaotic and emotional time for us all. The most love and support you can offer us is through prayer. We will let you know later, once Luke is stable and we know more about what our future holds, when we are ready for visitors outside of our immediate families.
I am so excited to see how the next week will change our lives. I am even more excited to be part of something incredible the Lord is doing through my little boy's heart. I am scared, anxious, nervous and overwhelmed but I know that the victory over our situation has already been won. The Lord fought my son's battle and paid the ultimate price on the cross. When I am reminded of that remarkable, earthshaking power - I have peace. No matter how scared or nervous I may feel - I know in my hearth that the Lord is still on His throne and is the same yesterday, today and tomorrow. He will still be the same God next Tuesday when I am in labor and when Luke is born. In the moment of my greatest fears, He will be there and He will hold my son's heart in His hands. Right now, I have no idea what will happen but the Lord has promised me His presence and that alone is enough to get me through anything.
-- Kristin
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