Wednesday, June 30, 2010

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. 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

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.

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

Thursday, June 17, 2010

A new day.

For the past seven weeks.... medical chart has had "Fetal HLHS" written in bold black ink across it.

...I have typed in "hypoplastic left heart syndrome" into the Google search bar.

...I have cried in the shower when no one is around because I am scared.

...I have went to the doctor once, even twice a week to watch a little heart flicker on a large screen and have doctors stand over me and explain, in detail, my son's condition to sonographers who have never seen a HLHS baby before.

...Benson and I have prayed every night and almost every moment of the day that God would be glorified in our son's heart...and that the Lord would give us a miracle.

However, today is a new day...Praise the Lord!

Yesterday was our weekly appointment in Louisville. We walked in expecting the same routine. Just like every other week, we greeted Dr. Tabb when he came into the room. He shook our hands, poured gel on my belly and placed the probe on top of me. Our little boy's chest popped up on the screen. We expected the same response we had heard every week since we had been seeing Dr. Tabb..."the blood flow looked good, baby was moving good, no change, see you back next week." However, the first three words that came out of the doctor's mouth caused both of our hearts to stop momentarily...

"Well, that's interesting."

The next few seconds seemed to last forever.

"These are the best images I have ever gotten of your child......"

A few more seconds pass.

"....and his left ventricle is much larger than I thought was."

Turns out, Luke has decided that he wants to shake everyone up a little bit. What was once a typical HLHS diagnosis is now an issue of "well, we really don't know what it is." Dr. Tabb is "cautiously hopeful" that Luke's heart is beginning to improve. What was once a "sliver" of a left ventricle has doubled if not tripled in size. Babies with HLHS typically have an aorta that is the size of a string due to the lack of blood flow going through the left ventricle. Luke's aorta, however, appears to be normal size. Before leaving his office, Dr. Tabb told us..."in all the years I have been doing this...I have never seen a hypoplastic baby like this."

Fast forward two hours later to our appointment with Luke's cardiologist.

I am laying on another ultrasound table while Dr. Arensmann performs an echocardiogram on Luke. We tell him about the images Dr. Tabb saw earlier that day and while he cannot get the same clear images - he begins to laugh and tells us, "consider it a GOOD thing that you have us all confused."

Basically, we are back at the beginning. No one can tell us WHAT is going on with Luke's heart. They can't tell us what will happen once he is born and how many surgeries he will have to have. They can't tell us how long we will be in the hospital or what life will look like for us in a few weeks. They honestly cannot tell us what to expect or even what scenario it could possibly be. We all, including the doctors and surgeons, will simply have to wait and see what Luke's heart looks like once he is born.

God reminded me this morning in my devotion of the blessing that comes when you WAIT upon the Lord.  There are amazing promises that He makes to those who simply choose to be patient for the Lord's will to be done.

"For since the world began,
no ear has heard,
and no eye has seen a God like you,
who works for those who wait for him!" - Isaiah 64:4 (NLT)
"I waited patiently for the LORD;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.
He put a new song in my mouth,

a hymn of praise to our God.
Many will see and fear
and put their trust in the LORD.
Blessed is the man
who makes the LORD his trust,
who does not look to the proud,
to those who turn aside to false gods." - Psalm 40:1-4 (NIV)

"Because of the Lords great love we are not consumed,
for his compassions never fail.
They are new every morning;

great is your faithfulness.
I say to myself, "The LORD is my portion;
therefore I will wait for him."
The LORD is good to those whose hope is in him,
to the one who seeks him;
it is good to wait quietly
for the salvation of the LORD."  - Lamentations 3:22-26 (NIV)

"Yet those who wait for the LORD
Will gain new strength;
They will mount up with wings like eagles,
They will run and not get tired,
They will walk and not become weary." - Isaiah 40:31 (NASB)
In today's society - uncertainty means fear. To not know our future terrifies us. We feel that we must always know what is going on and that we should always have answers. However, God doesn't always choose to show us answers right away. There is a blessing that comes in having patience partnered with giving God our uncertainty and letting Him take control in the unknown of our relationships, our health and our plans for our lives.

Most people think that the unknown is a scary place to be - however, for a family who has went through the past seven weeks thinking of all that our baby will have to go through - we praise the Lord to "not know!"  Yes, they cannot tell us that our baby DOES NOT have Hypoplastic Left Heart Syndrome - but praise the Lord - they can no longer look us in the eyes and tell us with certainty that he DOES.

Please continue to pray! As much as the doctor's like to "have all the answers" and give us an expected prognosis for our son's future, only the Lord knows Luke's heart. He is at work and most importantly, He is being glorified through it all. Yesterday was proof that the Lord is good and hears our prayers.

They told us that you cannot "fix" a Hypoplastic Left Heart - that only surgeries would save his life. However, our son is showing the world before he is even born that "nothing is impossible with God". - Luke 1:37

PS: Not only did we get good news at the doctor - we also got to see our little boy's squished face! :) Of course I think he's the most beautiful little guy ever and just had to share! (sorry, its a little blurry from being taken from my Blackberry!)

Tuesday, June 15, 2010

Luke's Amazing Grandparents

Having a baby in itself is more work than two young people have ever experienced, and when you add a diagnosis of HLHS it multiplies greatly. Kristin and I are strong people. We love the Lord and we face each day with a renewed strength because of our faith in Him. However, there is no way that we could do this alone.

God has blessed Kristin and I with the most amazing parents that anyone could ask for.  I am going to be the father that my dad taught me to be. My dad never experienced the love of an earthly father because his dad died when he was 3. However, he learned to rely on the Heavenly Father and through that he became an amazing dad. It's not fair that Luke will never see his papa Sexton on this earth, but as Luke will learn as soon as he takes his first breathe, life is not always fair. My dad was diagnosed with lung cancer 2 years ago right before his retirement and passed away 9 months later. However, I am confident that Luke has already met his papa and they are best buddies. Papa will always be his guardian angel and protect him throughtout his life.

My mom should have been a high-flying acrobat. She can't stay still and has more energy than a kid. One of my dad's nurses use to say that she was like a rat on acid...get the picture? She is the most humble person and will give anything she has to her kids or anyone in need. I am so thankful that she is able to live close to my sisters and help them with my 3 nephews. Without a doubt, she will always be there for Luke and he will be spoiled by nana real quick. If anyone knows how to take care of a sick loved one, it's her...we will be able to turn to her during the good and the bad times.

What can't I say about Kristin's parents? We are beyond blessed to have them in our lives. I never dreamed that I would have a father-in-law and mother-in-law that I was so close to. Raymond is beyond amazing. The man can do or fix anything in the world. Kristin will not even let me hang a picture because she knows that her dad will get it perfectly square...I'm serious...haha. He has a heart of gold and he backs down from nothing that he truly believes in. The past 4 years he has shown me more than he will ever realize, from correcting my golf swing to finishing a basement, and everything in between. Luke is going to gain so much wisdom and knowledge from his papaw. I don't have very many of the skills that Luke's papaw has but I pray that he gets them all. There is no doubt in my mind who Luke's best friend will be.

Arletia is the hardest worker I have ever met in my life, and I don't mean just around her house. I honestly believe there is not one second that goes by that she does not think of Kristin and how she can help her out. She lives for her daughter. They are just like every mom and daughter and sometimes it's comical, but at the end of every day they are best friends. Arletia's passion to be the best mother she can be has certainly transitioned to being a grandmother. From the time we told her Kristin was pregnant until now, she has not stopped preparing. Kristin and I will get home from work and she will have cleaned the house or washed a load of laundry just because she wants Kristin to be able to rest and not have to worry about wearing herself out. She doesn't do it because she doesn't think we can't do it ourselves, but she does it because she loves us and wants to help us out. When Luke arrives in less than 2 weeks I am certain that he will be her everything, because he already is. He gets new clothes, books or toys every day already, so I can't imagine what it will be like when he is actually here. After the first surgery and we are settled back at home, Kristin and I will have to go back to work. However, I am completely at peace with that because I know he is in the best hands in the world while his grandma is taking care of him.

I don't want to imagine what life would be like without the love and support of our families. I know they are the people they are because they put God first in their life. Our parents agree with us that without Him we are nothing. So, as our journey continues to unfold, we thank God for the help he has provided us and we want to say,

Dad, mom, dad, mom...We love you, we thank you and we can't wait for Luke to meet you!

- Benson

Monday, June 14, 2010

Who holds tomorrow.

We had a great doctor's appointment Friday despite the fact that Benson needed to be at work and I was stubborn and refused to let anyone else drive but me. Lately, I'm figuring out that my poor body isn't able function like normal and long trips make for an extremely uncomfortable experience - a lesson that I unfortunately had to learn about the hard way! Luke weighed in at approximately 6 pounds (praise the Lord!) and Dr. Tabb couldn't find any fluid on his lungs (PRAISE THE LORD!). Thank you all so much for your prayers! Before we left, Dr. Tabb told us that we will induce labor at 39 weeks if he hasn't already decided to make an appearance before then. Most likely, they will start the induction on a Sunday night and deliver on Monday. So, unless Luke has other plans, we will be looking at a birthday on June 28th!

My bags are finally packed and my body is definately ready for Luke to get here - but emotionally, I wish he could just stay put inside me forever. As long as I can feel him kick and roll around in my belly, I know that he is okay. His heart is functioning fine and he doesn't have to endure surgeries, tubes and IVs. I wish that I could just stop time and protect him forever. I would gladly endure all this pain and misery for the rest of my life if it meant he would be okay...but the beauty of it all is that "everything rides on hope now." There is something so terrifying yet so glorious about giving EVERYTHING - your whole life - over to the Lord. To release the idea that you are in control, to accept your situation and cling onto the faith that God will work things out for your good. As his mom, I am terrified as to what we will have to go through in the next month but as a Christian, I am excited to be part of what God is doing through Luke. I cannot wait to hold a miracle in my arms and to witness the glory of the Lord through his healing.

Someone told me today that they were inspired by the way I am handling everything and I replied, "really, its no different than it was before." Of course I know the reality of our situation, I know what could happen, I know that there are few things that are more serious in "medical" terms. However, I look at our struggle the same way I look at life. Our life is just as uncertain as it was before we knew about Luke's heart - the only difference is that we are more aware of the uncertainty. Today, I realized that facing HLHS is so much like accepting Christ for the first time. There is an undescribable fear that comes with giving your life to someone you can't physically touch or see. In fact, being a true follower of Christ is one of the most difficult life paths imaginable - it will take you places you don't want to go and cause you to face battles you don't think you can overcome. The Lord never promises us that life will be easy but He does promise that through every situation, He will never leave us. I know that It will be hard and our hearts will surely break a thousand times but when it is all said and done - it will all be worth it. I don't know what tomorrow holds, but I do know who holds tomorrow and that makes all the difference.

Wednesday, June 9, 2010

Update on Luke: 36 weeks!

I think it really hit us this week that Luke is almost here. It's crazy to think that we have less than 3 weeks of life just being "the two of us." The biggest part of me wishes that we could just skip over the next few months of hospitals and surgeons and just be at home with our perfect little baby boy. However, I know that the Lord has a lot of showing off to do in the next few weeks and I know that every hard day will be more than worth it in the end.

Last Wednesday at our appointment with Dr. Tabb, he found a small spot of fluid on one of Luke's lungs. He explained to us that pleural effusions can occur in babies that are completely healthy and most likely was not associated with his heart defect. Many times these pockets of fluid go away on their own and are nothing to worry about, however if it continued to increase in size that it could be a sign that something else is going on and Luke would need to be delivered in order to find out what was causing the problem. He had us come back on Monday so he could keep an eye on our little guy. We went back on Monday and the fluid was still there but had not increased in size. Dr. Tabb said that everything looked fine and that we would just continue to monitor it.

We go back again on Friday and then next week will start checking for dilation. The current plan is just to wait and see how things progress. They don't really want to "set a date" because they want Luke to develop as much as possible on his own. When we get close to 39 weeks we will probably discuss induction, but until then I'm supposed to take it easy, rest and eat...all of which I am doing plenty of!

Please continue to pray for us. It always helps me when praying for others to know specifically WHAT to be praying for, so here are ways you can lift us up:

1. Pray for God's healing in Luke's life. Obviously, we all want to see Luke's heart be completely whole. We know and trust that God is in the process of healing our little baby and we choose to accept that healing in whatever form the Lord chooses to provide it to us.
2. Pray that Luke continues to grow and develop and that the fluid in his lungs will disappear completely.
2. Pray for Benson and I. The closer we get to Luke's arrival, the more Satan tries to attack our spirits and emotions. Recently, we both have had a lot of difficult days but have overcome them thanks to your prayers. We truly can feel the peace of the Lord!
3. Continue to pray for our friends Stephen & Sarah Gardner. Many of you know them, but they are a special couple and their family has meant so much to both Benson and I. God is working a miracle in Sarah's life and we would greatly appreciate you continuing to lift her and her baby up to the Lord. You can read about her story at:

We love you all and thank you for all of your words of encouragement and support!


Tuesday, June 1, 2010

Before the Morning

We had an amazing Memorial Day weekend and were able to spend time with a lot of our family and friends. We laid around, watched TV, sat outside, ate a lot of burgers and spent a lot of time laughing together. I am so blessed because I could think of no one I would rather spend every second of my life with than my husband.

I also started packing for the hospital this weekend which was an overwhelming task in itself. I have no idea what to pack for the hospital in the first place, much less what to pack if we should be there for several weeks. By the end of the weekend, I was emotionally exhausted.

As strong as I am, there are moments when the reality of what is going to happen really hits me. I think its the fear of not knowing what to expect that hurts me the most. I absolutely hate that we have to go through this. I hate that in just a few short weeks our lives will never be "normal" again. I hate everything about HLHS. However, in those moments...I stop and realize that God is still God. He is still in control and He has promised us that He will never leave us. As much as I hate how broken my heart feels sometimes, I know that God has a purpose for it all.

I found this video today and it brought me to tears. It is the story behind the song "Before The Morning" -- which I hear on KLove almost every day. I heard this song for the first time not long after we found out about Luke's heart and it really ministered to me. It wasn't until today that I found out it was actually written about a boy with Hypoplastic Left Heart Syndrome. I hope you will watch it and most of all, that you will see how the Lord works through our pain and suffering to bring glory to the Father.