Saturday, February 13, 2010

Blessed Be the Name of the Lord

On Thursday morning, we woke early to a beautiful snow. Layne and I quietly dressed and then spent a few minutes in God's Word and in prayer before braving the roads and the fetal MRI. My Bible opened that morning to Psalm 127, where we were encouraged especially by verse 3: "Behold, children are a gift of the Lord, the fruit of the womb is a reward." (NASB) We love our little one so much, and we believe that she is a blessing regardless of her physical condition.

So what were the MRI results? Once again we received test results that both answered some questions and created more. We were given both good and bad news. The MRI revealed that our little girl's brain appears to be significantly underdeveloped. The radiologist who specializes in fetal MRIs, Dr. Diane Twickler, gave us a list of 6 issues in our baby's brain that she detected from the images. I won't detail the issues because the medical terminology wouldn't mean much to most of you. It appears that while the rest of our little one's body developed normally (that's the good news), her brain did not (that's the bad news). Dr. Twickler indicated that the most likely diagnosis of our baby's condition is Walker-Warburg syndrome, a rare form of congenital muscular dystrophy associated with brain and eye abnormalities.

So what does that mean? Well, mostly that we won't have any answers as to our little girl's ability to function outside the womb until she's actually outside the womb. That mostly depends on the development of the part of her brain that governs autonomic functions like breathing, eating, and other reflexes.

So where do we give birth? That's a great question that we will be answering in consultation with our midwives and maternal fetal medicine specialist this next week. I'm 34 weeks pregnant so we'll be making that decision soon. We would appreciate your continued prayers for wisdom on this issue.

So how are we doing? We know we'd rather walk this road with Him than without Him (Psalm 84). We are facing facts without wavering through unbelief (Romans 4:19-21). We believe in "the God who gives life to the dead and calls things that are not as though they were." (Romans 4:17b, NIV) We believe that He could still develop her brain. We also know that He may not. Regardless, we know her life has meaning and purpose, and we pray that God might receive the glory for the gift of her life. "Blessed be the name of the Lord!" (Job 1:21c)

3 comments:

  1. Amy Joy! I am so happy to hear this news! How different it is than the supposed death sentence she was given before! This means you might get some time with her, I have heard these babies can live up to a couple of years!!!! I will pray it is LOTS of time! I know the 59 hours Adelle lived, was so wonderful for us. A precious gift! Feel free to call if you would like, I would love to hear all the "medical jargin" and the recomendation for the birth. Praying for you!

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  2. I have been following your blog and wanted you and Layne to know that our prayers are with you.

    Lori & Jim Spikes

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  3. It was good to be able to go to lunch to catch up with Layne this week. We continue to pray for you in our family prayers. I have also asked friends and family who are faithful to pray for your family at this time.

    Let us know if Laura can come over to watch your kids while you and Layne take a break to connect on a date sometime before the baby comes.

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