This is the story of our precious baby boy, who was diagnosed prenatally at
17 weeks with a fatal chromosome disorder called Trisomy 13. Although
Jonathan's condition is considered "not compatible with life", we desired to give
him every chance at life. Our prayer is that those who are touched by our story
are drawn to God, who is Life Himself. John 14:6

To start at the beginning of our story, click here.


28.5 week update

as you can imagine, the experience of getting my amniocentesis a couple of months ago was not pleasant. i had just had the detailed ultrasound in which we learned something was very, very wrong. i was crying and shaking on the ultrasound table. i had just had a super long, thick needle jabbed several inches down into my belly. we were trying to absorb the thought that our baby probably had a fatal condition. and the really nice, cheerful nurse is bottling up all the fluid coming out of the needle. "baby pee!" she says, waving the bottles of amniotic fluid in my face with a grin, "and it just gets worse as they get older!"

ah, baby pee. i remember staring at the vials of fluid but the idea of "baby pee" did not fully sink in until yesterday, really.

we did not receive the best news at yesterday's appointment with our specialist.

it appears that jonathan's kidneys are not doing so well. they are extremely dilated and echogenic. he is not producing urine as he should, therefore, i do not have enough amniotic fluid. our specialist indicated to us that this condition is more serious than jonathan's heart condition now and would probably have a direct effect on his lifespan after birth.

it was hard for us to really see much during the ultrasound because there was not a lot of fluid between my skin and the baby. so while we did get some video and photos of jonathan, they are not very clear. also, when the tech was scanning the baby's head, i felt pretty significant pain because of the hardness of his skull pressed up against my belly. his head is right below my ribs.

and that's another thing we learned: jonathan is breech again. i do not know how he got there because you would think i would feel such a significant event as a baby turning right-side up inside of my belly. this must have occurred at night while i was sleeping. however, it does explain the sharp, shooting pains and "bearing down" feeling i have experienced in the past couple of weeks. apparently, he is trying to stand up or something! he is also enjoying playing soccer with my bladder.

we were also told that the placenta looks abnormal now. this, along with jonathan's trisomy 13 potentially causing a hormonal imbalance, along with too little amniotic fluid, means that i am at high risk for pre-term labor and pre-eclampsia.

in other news about jonathan, we learned he weighs exactly two pounds. this is the 28th percentile. they don't start to worry about his growth until he's around the 10th percentile. i have not gained any weight this week and my blood pressure is still good. i haven't yet experienced any swelling either which is great news considering my risk.

our prayer requests:
~ that jonathan would be born alive, if even for a few minutes, no matter if he's born next week or next month.
~ that jonathan would turn himself into the head-down position. if he doesn't, it looks like i will be delivering a breech baby. my doctor will not do a c-section on me (this is best for my health and for any future pregnancy. this is what we desire, anyway.)
~ that my health will not be adversly affected in spite of these new pregnancy complications.
~ that if i do go into labor early, my own doctor will be available for delivery.
~ that greg and i will be fully prepared, emotionally, physically, and spiritually for what's to come in the next few weeks.

i don't think i was fully prepared for this news. i guess i imagined that we would learn everything was still the same with his heart and that he was doing OK. i also assumed that it would be the last time we would be going to the specialist. we now have a follow-up appointment on october 7th to see where we stand with everything, if we make it that long.

at the same time, i can't say we're completely caught off-guard. we knew that trisomy 13 would cause many complications such as these. i guess i'm just struggling with the idea that this is actually happening. we've been blessed to have gone as long as we have with no real change in our situation and to be able to experience joy at times, even. but now i suppose we are on our way back into the "valley." we know that the Lord is with us, but we still covet your prayers.

i will post the pictures and video clips next time.


  1. My prayers continue to be with you all...

  2. My prayers are ALWAYS with you all. God Bless your whole family, and especially Jonathan, and you - as his mother, who feels it all.

    Much love!

  3. Hey Lauren! I have prayed for you and will continue to pray you and your family! That was an awesome video and touched my heart so deeply. Hugs & love...

  4. My prayers and thoughts are with you and Greg. Although I do not know you personally, there is rarely a day that I don't think of you all and lift up a little prayer for you.

    Thank you as well for posting the video about Thomas. It was so heartbreaking but amazingly beautiful at the same time. Your journey and theirs as well show all of us the power of God's grace and love flowing through us. It's also a reminder to me (and others going through difficult times) that the miracle has already been performed in our lives.

    Psalm 55:22 - Cast your burden on the Lord, and He will sustain you: He will never permit the righteous to be moved.

    With love and support,

    Lorraine Christen