the rough story

Here's the story of the news as we lived it those first few days.


We went in for a routine ultrasound Thursday afternoon (1.13.11) to check up and find out the gender of our child. Within 15 short minutes we were sitting with our midwife as she explained some severe abnormalities she was seeing in the ultrasound. Within an hour they had an appointment set up for the next day at Northwestern Memorial Hospital with a maternal-fetal specialist for a level 2 ultrasound to see more of what was going on.  That evening Kevin and Karen Miller (our associate priest and executive pastor at our church) met with us at our home, offered comfort and wisdom, and offered to go with us to this important appt. on Friday.  

After an hour and a half of ultrasounds, the specialist let us know the following: The baby is a boy (Kimberly really felt this all along).  Our son's heart is outside of his chest, as the chest is open and will not close. His skull is open as well, with the brain tissue open to the amniotic fluid.  His spine is also open and twisting around itself. His organs are not forming correctly and are small. He also missing his left arm, and has 2 clefts in his pallet. Overall, his diagnosis is that he is not "compatible with life" outside of the womb. There is no specific diagnosis as these abnormalities are not commonly found all together. This is likely some sort of chromosomal problem, that likely began right from the start of life. Nothing could have been done to change this if found earlier and this is not from any specific thing that was done or not done early in pregnancy. It simply is what it is. 

We were given 2 choices with his life and this news: we can either terminate the pregnancy or carry him until his life ends.  After much prayer and discussion, we have chosen to carry him for as long as he and God decide his life will be. We feel strongly called to be his parents, as he is our son, and we will provide the environment necessary to sustain his life as short as it will be.  We love him more than we could have ever imagined.  Every ultrasound we can see his heart beating, his legs moving around, and his arm waving at us.  He is an incredible little fella enjoying life in his cozy home. Kimberly can also feel him kicking around at times.  

This sad news has nearly overwhelmed us, as you can imagine. We have been going through intense emotions all over the spectrum.  From weeping and weeping as we have begun to miss the life we had hoped he would have. We long to hold him and be with him in ways we know we will not be able to now. We also have felt joy as we get the privilege to be his parents for the rest of his short life and celebrate him every day as well as the unspeakable joy at naming him, with the Lord's guidance, just this morning (more on that in a minute).

The Lord and the church has already been a blessing for us with meals and various others means of support emotionally, spiritually, etc. We have felt this as well as the presence of God in significant ways. We feel very blessed. 

There are some big questions for us in the coming months. We don't how long his life will be or when it will end. We don't know if it will end in miscarriage, a still birth, or if he will live for a minute or two after delivery. The anxiety and uncertainty this brings is something we ask prayer for through the coming months. It is Kimberly's desire to see him live for a couple minutes, to maybe see his eyes open or even a small cry, but as we pray we trust the Lord with the way He will answer. Either way, we will be able to hold him after he is born and say goodbye and rejoice in holding our first child. We will also have a pastoral blessing before his burial, and a little service for those closest to us.  

Primarily we do need these prayers, but we want you all to know that if the Lords moves you to do anything in any way, we will joyfully accept that encouragement in any form (a photo, a word of encouragement, a verse, a hug, a thought, a story, etc. etc.). Honestly and sincerely, we don't know everything we need right now, so if the Lord guides you in any way at all, please feel the freedom to follow the leading He gives. Thank you. 

 We also want you to know that we are open to talking about this.  If you see us or call us, or we are hanging out somewhere feel free to ask us how we are, ask any questions that come to mind, or talk about it if you want. Also, don't feel you have to do these things in any manner. We understand this can be awkward not knowing how we are doing or where we are on any given day can make this challenging. We understand that. But know we are open to talking and if, for some reason, it is a difficult day for us, we would gently let that be known, so please don't fear any interactions. We welcome seeing any of you. 

Please watch this little video introducing our son's name. We named him based on meaning, so every time we speak of him we will remember the Lord and our son in a beautiful way.

Blessings and Peace, 

Jeff & Kimberly