Wednesday, January 3, 2018

Medical Diagnosis

For you formed my inward parts; you knitted me together in my mother's womb.  I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.  My frame was not hidden from you, when I was being made in secret, intricately woven in the depths of the earth.  Your eyes saw my unformed substance; in your book were written, every one of them, the days that were formed for me, when as yet there was none of them.  ~ Psalm 139:13-16
We had an appointment in Little Rock 3 days after Christmas, where we learned just how severe some of Samuel's medical conditions are.  We were seen by a Maternal-Fetal Medicine specialist and a Pediatric Cardiologist who were both wonderful to work with.  I will detail below what we currently know, but there are still a lot of unknowns.  Also, bear with me as I am not a medical person, and am just trying my best to repeat what the doctors said!

Heart - One of the main concerns for Samuel right now is his heart.  There are 4 main concerns:
  1. The chambers on the left side of Samuel's heart are significantly smaller than the right side.  The left side is responsible for pumping oxygenated blood to the rest of the body, so once he starts breathing on his own after birth, the concern is that it won't be able to handle that responsibility.
  2. The Aorta is very small.  They were able to catch a few glimpses of blood flowing through the Aorta during the echocardiogram, but it was very hard to tell.  Right now the Aorta does not look big enough to be able to properly handle blood flow after birth.
  3. The Mitral Valve is very small.
  4. There are 2 holes in the muscular wall between the left and right sides of Samuel's heart.
This is a diagram of what a normal heart looks like.
This is a sketch of Samuel's heart.
Notice the size of the left ventricle, left atrium, and aorta














Lungs - Samuel's lungs look a little smaller than they should.  His heart to lung ratio is high, meaning that his lungs are proportionately smaller than his heart.  This is a big concern, especially with the condition of his heart.  If his lungs are not strong enough when he is born then an operation on his heart would be less likely to be successful.

Skeletal Dysplasia - Samuel appears to have some form of Skeletal Dysplasia, which is a disorder causing some of his bones to not grow properly.  There are over 300 different types of Skeletal Dysplasia; some are lethal and some are not.  The difficult part is that there is no way to know for sure what type Samuel has until he is born.  This means a lot of waiting and guessing in the meantime.  When they were last measured, all of his long bones (arms and legs) were measuring several weeks behind.  Although we probably won't know if the Skeletal Dysplasia Samuel has is lethal or not until after he is born, one big indicator is the development of the lungs.  If there is a bell-shape to the rib cage/abdomen area, that often indicates that the rib cage is restricting the growth of the lungs, and will likely continue to after birth.  Fortunately, the doctors do not currently see that bell-shape on our precious Samuel!  Praise God!  We are praying that the development of his lungs will continue to increase!

Polyhydramnios - This is a fancy word meaning that there is currently excess fluid surrounding Samuel.  This is commonly seen with Skeletal Dysplasia, so it is not a surprise to the doctors at this point.  However, it does put me at a higher risk for pre-term labor.  This obviously would not be favorable for Samuel, as he may already be facing the need for surgery, and the development of his lungs is a crucial factor in whether surgery will be effective.  Also, as of right now I will need to deliver Samuel in Little Rock so that he can have access to the medical care he needs, so going into early labor would complicate things quite a bit, since we live 3 hours away from Little Rock.

Brain - At an appointment in mid-December, the fluid measurements on Samuel's brain had been slightly above the borderline of what they should be.  However, at our last appointment the fluid had decreased to slightly below the borderline!  Another praise!  We are praying that these will continue to decrease and stay at a normal level.

Prayer Requests:
  1. Pray for the healing of Samuel's heart.
  2. Pray for the proper growth and development of Samuel's lungs.
  3. Pray for his rib cage to expand appropriately so it does not restrict the growth of his organs.
  4. Pray that the fluid surrounding Samuel would decrease to a normal level.
  5. Pray that I won't go into pre-term labor.
  6. Pray that the fluid on Samuel's brain would stay at a normal level.
  7. Pray that we will be able to give God the glory, no matter what happens with our precious Samuel David!
  8. Pray that Samuel's story would impact others!
Praises:
  1. There is currently no indication of Samuel's rib cage restricting the growth of his organs!
  2. The fluid on Samuel's brain has decreased!
  3. God is surrounding us with people from around the world who are praying for Samuel!
  4. Despite all the emotions we are going through, Seth and I feel God's peace resting upon us!
We are so blessed by all of you who are praying with us.  We know that God is listening to every single prayer that is being offered up for Samuel David's life!
Although the details of Samuel's medical conditions are still up in the air, one thing we know for certain is that God is the one who has perfectly formed Samuel, and we know that He will continue that work to completion.  Samuel David is fearfully and wonderfully made in the image of his Creator!

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

3 comments:

  1. Countined prayers for you guys and Little Samule

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  2. Contiuing to praise God for the progress and and answered prayers regarding each part of this precious baby's growth. Trusting with you for God's healing hand and care to be upon Samuel David and you! ❤

    ReplyDelete
  3. Prayers and praises daily, along with all our love. <3

    ReplyDelete

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