Saturday, January 20, 2018

Hard News

Our appointment yesterday was hard.

We got to see Samuel David's sweet little face again, which is always so special!

But we didn't get the news we were hoping for...

The follow-up echocardiogram confirmed the findings of the first one, but this time the cardiologist couldn't see any blood flowing through Samuel's very small aorta.
With the combination of things they see wrong with Samuel's heart, he has a condition called Hypoplastic Left Heart Syndrome (HLHS), which basically means that the entire left side of his heart is underdeveloped and will not be able to handle the flow of oxygenated blood to the rest of his body.
-His left ventricle is underdeveloped and too small.
-His aortic and mitral valves are underdeveloped.
-His aorta is very small and seems to be interrupted, which means that no blood can flow through.
-He has a Ventricular Septal Defect, which means there is a hole in the wall between the two lower chambers of his heart.
Normally they attempt to stabilize HLHS through a series of 3 major surgeries over the first 3 years of life.  However, these surgeries are all high-risk even when there are no other medical complications.  But Samuel has other complications as well...

Samuel's Skeletal Dysplasia appears to be keeping his chest from growing properly, which would restrict the growth of his lungs and heart.  If his lungs are not strong enough, he will not be able to tolerate surgery on his heart.
The Skeletal Dysplasia is also keeping his bones from developing properly.  However, they have grown since our last appointment!  Which is the one bit of good news we did get!  Praise God!!!
There is still no way to know whether the type of Skeletal Dysplasia he has is lethal or not.  That will have to be determined after he is born.

The extra fluid surrounding Samuel has increased again, putting me in the "moderate" range of Polyhydramnios, and again increasing the chance of pre-term labor.  We are praying that he will stay put for another 10 weeks so that he can have access to whatever medical care he ends up needing, and have the chance to safely develop for as long as possible.

The doctors we talked with yesterday didn't leave much room for hope, and it is so easy right now to let ourselves be overwhelmed by grief and defeat, but we are confident in the HOPE that God gives us:

"And we know that for those who love God all things work together for good, for those who are called according to His purpose."
Romans 8:28

"And I am sure of this, that He who began a good work in you will bring it to completion at the day of Jesus Christ."
Philippians 1:6

We are still praying for God to miraculously heal Samuel's heart, lungs, and body, but we know that He has a purpose in all of this whether or not we get the miracle that we want.  We are confident that God is working all of this together for our good, and for His glory; and we believe that He will carry to completion the work that He has begun in our precious Samuel David.

This is His story, and it is all for His glory!


  1. Thinking of you and praying for Samuel. <3

  2. I don’t even know you two more than just meeting you last Sunday night, but the peace radiates from you. I pray we can be an encouragement to you guys as well.
    Raquel King


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It has been a long time coming, but we are back! Back in the blogging world. Back to sharing our story in order that God may be glorifie...