Thursday, December 6, 2012

A Post By My Awesome Husband (and a Quick Update on Caleb)

If you've ever met my husband, then you probably know he's one of the quietest men on earth in public.  (God balanced him out with a pretty noisy wife.  ;)  He emailed me this list of prayer requests the other day that we could share with others who would be willing to pray for Caleb.  Not only is the list a wonderful way to let others know how we can best be prayed for, it's a beautiful glimpse into the man I love with all my heart and get to call my best friend. (I know, mushy...).  

From Matt:

Since we received the diagnosis that our unborn son Caleb has a severe congenital heart defect and will require multiple surgeries; we have been greatly encouraged by the outflow of support from a huge number of people.  Many people have offered to pray for us; we consider this THE most important thing you could do for Caleb and the rest of our family at this time.  Below I have put together a rather lengthy, though not exhaustive, list of prayer requests.  If you are willing, please lift these requests up to God on our behalf.

Please pray that the Lord would perform a miracle and heal Caleb’s heart.  I know it is “spiritual” to pray only that the Lord’s will be done, and I, of course, want the Lord’s will.  But there is nothing unspiritual or wrong about praying that it would be the Lord’s will to heal Caleb.  As a family, we will ultimately submit to God’s will no matter what it is, but until he makes it known, please join us in praying for Caleb’s healing.  Thus far, the doctors have assured us that, other than his heart, Caleb is growing and developing correctly.  Please pray that this would continue and that for the remainder of the pregnancy that Caleb would grow strong and that the rest of his body would be whole so that he can better survive surgery, should it be necessary.    

Please pray for Desiré.  As you can imagine, this diagnosis has been trying on our whole family, however, as Caleb’s mother Desiré has a special and unique connection with him.  Please pray for her physical health as Caleb continues to grow inside of her, pray the Lord would grant her peace and grace necessary to sleep and to have an appetite.  She has been experiencing headaches throughout this pregnancy, please pray that the Lord would remove these.  Pray also for her spiritual health.  Desiré’s faith and dedication to the Lord have always been great encouragements to me and many others; and her response to this trial has been nothing short of amazing.  But no one, no matter how great their faith, will be without times of doubt, or bitterness, or worry.  Please pray that the Lord would grant her the grace necessary for this trial, and that He would draw her closer to himself through this.

Please pray for Isaac and Silas.  They are, of course, far too young to understand what is going on with their unborn brother, but they are aware that something isn’t right, and Isaac has already started asking questions.  Pray that the Lord would protect their hearts.  Pray that He would give Desiré and me wisdom so that we know what to try to explain to them and what not to.  Pray for Isaac and Silas as the pregnancy progresses and we have to make trips to St. Louis without them.  It appears, at this time, we will have to be in STL for weeks to months around the time Caleb is born.  Pray that it would be possible for Isaac and Silas to be with us during that time and that they would adjust to being away from home for so long.

Please pray for Desiré and me as we parent Isaac and Silas over these next few months.  Pray that we would remain consistent in our discipline of them; we have found it hard to discipline one child when faced with the possible loss of another.  Pray that through the stress we would be slow to anger in our discipline.  Pray that we would continue to faithfully point them toward our Savior, Jesus Christ.

Please pray for me, that God would grant me the grace and strength to lead my family through this.  Pray that God would grant me wisdom to make decisions regarding insurance, doctors, hospitals, accommodations, and whatever other decisions will be made in the coming months.  Pray for my spiritual health.  As I asked for Desiré, I know there will be times of doubt, or bitterness, or worry.  Please pray that the Lord would grant me the grace necessary for this trial, and that He would draw me closer to himself through this.

Above all, please pray that in all of this our family would glorify the Lord.  As our pastor has said, for every believing family that receives a devastating report from a doctor there is an unbelieving family that does as well.  It is our calling, as a believing family, to show the world the difference; and the difference is Jesus Christ.  He and He alone, gives us the hope that any loss or any pain we experience in this life will be temporary and that we will consider it as nothing when compared to the glory we will experience when we are with the Lord.  Pray that we would keep this perspective no matter what may come; and the Lord would use this trial to draw others to the hope He will display through us.  

And since this list was compiled, we met with our local pediatric cardiologist, Dr. Tong, and got some encouraging news.  Here's the latest update on Caleb:

1. They found an aorta!!! They couldn't find this a month ago. This is a really big deal! It's much smaller than a normal one, but it's there and gives Caleb and the doctors something to work with.

We have a three-fold diagnosis:
     - L-transposition of the great arteries (LGTA)- His right ventricle is where his left should be and the left is where the right should be.  The pulmonary artery and aorta also cross in a different way than normal.
     - Hypoplastic Right Heart Syndrome- His right ventricle is virtually non-existent (see the drawing below), so the left ventricle is functioning for both sides and doing all the work.  However, as a side note of praise, he said that if you're stuck with only having one ventricle, the left one is the better one to have because it's the stronger pump of the two.
     - Small aorta - The fact that it's there is huge, but if it narrows as it leaves the heart (this couldn't be determined at our appt. on Monday), then this could continue to be a really big deal for Caleb.

3. He will need 3 surgeries done within the first few years of his life, BUT IF his aorta does not get smaller as it leaves the heart (this was unable to be determined on the echo yesterday) there is a POSSIBILITY that his first surgery will be able to be pushed back until he's 2-6 weeks old AND if that's the case, it will only have to be an open chest procedure instead of an open heart which means he won't have to be put on by-pass and is a much less risky and invasive first surgery. Please, please pray that the aorta does not get smaller as it leaves the heart. This could be a game changer for Caleb.

4. We're officially headed to St. Louis for the remainder of our appointments and surgeries. Dr. Tong had already chosen the pediatric cardiologist and it just happened to be who we were going to request! He said that getting the surgeon we have chosen can be arranged as well. So thankful to have the ball rolling on that end.

5. I almost jumped out of my chair and did a happy dance for this last one... Dr. Tong said at this point he would give Caleb an 80-85% chance of survival. This is MUCH better than we'd been given so far and when he showed us the diagram of his heart I actually anticipated that the diagnosis would be much more grim. We still have a lot of unknowns and things that will factor into this, but we got a lot of encouraging news and are feeling really good about our meeting yesterday.

The picture on the left is a diagram of a "normal" heart.  The one on the right is a rough sketch the dr. drew for us of what Caleb's heart looks like.

Thank you SO much to those who continue to take our family before the Lord.  I wish I could give each and every one of you a genuine bear hug for loving us this way.


  1. You all are so brave and faithful in this journey. I admire your ability to rely solely in your faith through this time. Caleb is a lucky little guy to have you both as parents. Just want you to know I am praying for your family - you all will get through this :)
    Philippians 4:13 I can do all things through him who strengthens me.

  2. Desire, I'm sorry I did not know until now. How many weeks along are you? Will they deliver you early?

    I will definitely pray. I know what it is like to have a pregnancy not go according to plan, one of our boys is in heaven.

    Thank you for sharing the specific prayer requests. <3

  3. Continuing to pray for your family daily.

  4. You don't know me. My friend, Amber, is an avid reader of your blog and suggested that I too read. My son, Wyatt, was diagnosed when I was 24 weeks pregnant with dextracardia. At that time, we had no idea to what extent that would effect us. While this issue has been the least of our worries, I did want to reach out to you. I have been where you are. I know the emotions you are experiencing. Just know that you are not alone.

    Also, and more importantly, when we were in the hospital (at Vanderbilt Childrens Hospital) we had two nurses (a husband and wife team) who have a daughter who was born with a congenital heart defect. I believe she was born with hypoplastic right heart syndrome. They were an amazing support to me, and I thought you might share. Addy is now three and a half. Here is the link to their blog.

    You are all in my prayers!

  5. Thank you for this list, it helps me to pray specifically for you and Caleb. God is at work already and using this situation for His glory and His kingdom. Your faith alone is a testimony of His grace in the face of hard trials. Praying with and for you guys!



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