ellie's story

 Ellie is our first child who we got to meet, and had to say goodbye to, on June 18th, 2013. We found out at our 20 week appointment that something was wrong, but to this day we don't know what caused it or what it was that she had as all of our genetic testing came back negative. From 20 weeks forward, the doctors weren't sure if she was going to live or die (at any given moment in the womb and also post-delivery if she could make it that far) so we spent the remainder of the pregnancy pleading and interceding for her life through prayer...with many many wonderful others.

We delivered her via c-section (a far cry from our intended natural birth center delivery had she been healthy) due to her small size and condition, and she passed away about thirty minutes afterwards. We held her, kissed her, and loved her in person for about five hours..and although she didn't get to remain with us, we love her more and more still.

You can read about her birth story and our journey with her by following the links below.


A brief introduction and why we are posting about Ellie

Medical update from 4/7

Adventures in praying for Ellie

Medical update from 4/30

On endurance (in relation to Ellie)

Medical update from 5/21 

Ellie's Birth Story 

And beyond.... 


Before her birth and death, we were keeping a timeline of her appointments and progress so that our friends and readers would know how to pray. I don't want to take it down because I don't want to forget.

October 6th: Conception

October 18th: Positive Pregnancy test :) (Make that TWO positive pregnancy tests.)

November 19th: (8) EIGHT WEEKS measuring via ultrasound (Dr. Hearn, AnMed Health) Perfectly in line with our conception date.

February 7th: Went in for 20 week ultrasound to determine gender and measurements and she was measuring 4 weeks behind @ 16 weeks (slightly worried, but it's a GIRL and we officially have decided on her sweet name--which means Bright Shining Light.)

(This is when they begin to wonder if we were mistaken about our conception date. We later found out that we were indeed right and that she is indeed measuring small.)

This is where the rollercoaster begins.

Late February: Go for another ultrasound and she's measuring 17.5 weeks about a week and a half after the February 7th appointment--so still kind of on target with consistency but still small. Our midwife calls and says it looks like there are some abnormalities with her jaw and maybe her heart and she wants us to see the specialists. She throws out things like down-syndrome. Our hearts just sink.

March 14th: We got to an appointment with the specialists and get the worst of the worst news. They think she has Trisomy 18 and she is only measuring 18.5 weeks. They do the amniocentesis to scan for Tri 18 and other chromosomal abnormalities..they tell us she likely will die & ask us if we want to consider termination. Um. No. This day=by far the hardest one yet.

March 20th: (phone call) NEGATIVE results for Trisomy 18 (which is fatal) & NEGATIVE abnormalities in the 13th and 21st chromosomes--the initial scan results..that means no down syndrome either.

MARCH 25th: (phone call) Full results from amniocentesis show NO CHROMOSOMAL ABNORMALITIES at all. (This is really really good news, doctors still concerned.)

Sometime early April: Appointment with the specialists. Still very behind in her growth and they say her chances of survival are still slim, and that she seems to have a recessed chin and possibly arthrogryposis multiplex congenita. Still don’t think she’s going to make it. She is about 11 ounces in weight at this appointment...so severe growth restriction but no cause. (My placenta, blood flow, etc are fine.......she apparently has some sort of syndrome that is restricting her growth that can’t be diagnosed until after birth.) They tell us again she probably will not survive. This is also a very bad day.

April 30th: Another appointment with the specialists. I’m at 31 weeks and Ellie made it to over 1 pound! Keep growing, Elliegirl! At this appointment, the doctor walked in and said, “I really didn’t expect her to be alive at this appointment!” And I almost punched him in the face, and then I said to Ellie in my head, “You’re already proving people wrong, little girl. God loves you and we’re going to keep fighting!” This day=not as hard emotionally. They've told us the worst in the past and we are so coated in prayer and God's peace! Plus--we're so proud of her for growing to over a pound!

May 6th: Haven’t felt Ellie move in over two days. We FREAK. Meet with our lovely midwife--her heartbeat is lovely and she was likely in a less-active state due to what our midwife hopes and believes was a little growth spurt. YES. We’ll take it.
May 21st: Half a pound of growth in 3 weeks! This is the best she has done so far! Keep it up! No heart abnormalities, it seems! Still recessed jaw, turned in hands, definitely still looking to be arthrogryposis which appears to affect 1 in 3,000.........but still no official diagnosis. They admitted this day that Ellie is "resilient" and a "fighter." We agreed.

June 4th: Our last appointment. The prognosis is poor. She gained about a half a pound, but the outcome isn't looking good. This is our last appointment with the specialists as there is nothing else we can do. (36 weeks along) We have chosen at this point to wait to go into labor naturally, but c-section is an option.....they think the prognosis is bad either way.

June 18th: Last minute decison to do the c-section---just in case it optimizes her chances of survival. The doctor's told us that IF she had a chance to live, this would be the best for her. We got to meet Ellie on this day, and had to say goodbye to her on this day.