A Surprise and a Request

” Likewise the Spirit helps us in our weakness.  For we do no know what to pray for as we ought, but the spirit himself intercedes for us with groanings too deep for words. And he who searches hearts knows what is the mind of the Spirit, because the Spirit intercedes for the saints according to the will of God.”

 ~Romans 8:26-27~


As many of you know, Jeremy and I decided to take a break from IVF attempts while I finished my schooling and internship to become a board certified music therapist. We decided it would be added stress to keep trying right now, and that it would be better to wait until things slow down. But when does that ever happen, am I right?

After Lincoln died the doctors told us that any child we would conceive in the future  would have a 25% chance of having Leigh’s Disease. Well, I can tell you when you are already the “one in a million,” 25% is really bad odds. Jeremy and I agreed whole heartedly after receiving that information that we would never try to have anymore children naturally again. The thought of even the chance of losing another child was more than we could handle, or even imagine repeating.

So we were incredibly shocked to discover that we are pregnant. What a scary, uncertain, and happy moment all at once, with so many emotions running together. The moment we’d feared, and wondered about, “what if we somehow, accidentally end up pregnant one day?” Obviously, there are preventions, but the fear was still there. Well, now we know what that moment feels like first hand.

I don’t think there are words to describe how we feel right now. Words to describe that our little baby, Lincoln’s little sibling, has a very real possibility of dying just like him. Leigh’s Disease has no cure, and the life expectancy is up to 2-3 years old, although our Bubby  only made it 5 months.

We have seen a prenatal geneticist, and are planning on having an amniocentesis to find out the status of the baby’s health. This test is performed between 14 and 20 weeks and identifies genetic disease. You can read more about it here. I am currently 11 weeks and 5 days, so we will hopefully have the test around the end of this month or beginning of next month. We are still trying to get pre approval from insurance so we don’t have to pay for this costly test without any coverage.

So, that is our current game plan. If the baby has Leigh’s we will be grieving, but also preparing for whatever time we are given with this little one. If the baby is healthy, we will be rejoicing like you’ve never witnessed in your life. One day at a time… that’s all we’ve doing right now.

But I do know this. That the life growing inside of me has a purpose, just like my son’s life had purpose. Our biggest blessing was getting to be Lincoln Robert Huff’s parents, and being privileged to care for him, and love him with all our hearts during his short stay with us. And we will do the same with this child… no matter the outcome, no matter the test results, no matter the fear or the pain that threatens to invade when lying in bed at night. Jesus is still Lord, and his perfect loves casts out all fear.

All we ask is that you pray with us. Your prayers helped us get through the most painful, dark time of our lives. We could feel them… we still feel them. We need people to pray, because we are at a loss for words. The above scripture has resonated so much with us these last couple of months. We know that God doesn’t always change our circumstances, but he will make them into something beautiful if you let him.


Huff Baby #2 Due January 17, 2018

7 thoughts on “A Surprise and a Request

  1. Jeremy and Stephanie,

    What an amazing story God has written for you guys. Thank you for sharing along the way. I cannot image the deep and endless pain of losing a child but I do know that Christ makes all things new in His perfect timing. I am praying for the wonderful and sweet little life growing inside of your belly. May you enjoy every second possible and be prepared for whatever is to come of that precious babe. Thank you for choosing to walk through this journey with faith that the One who holds you in the palm of His hand will provide whatever is necessary for your experience to be used for His glory. May God bless you and yours for your obedience, vulnerability and faith!

    Much love and many prayers,
    Kelly Mickelson

  2. I truly know how bittersweet this is for you and Jeremy. The grief over losing Lincoln is unbearable and in your thoughts daily. Stay positive and continue praying that this baby is in the 75 percent that is not born with the disease. Surely God’s plan is for you to have a healthy baby that will be a “little miracle” for the Huff family.

  3. My prayers are with you all! May the peace of our loving Father keep you and surround you. May the joy of the LORD be your strength.

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