Update #4

I feel so much has happened since the last time I wrote.
I've gone through a lot of emotions, my newest being angry. And asking why us? Just when I think I'm ok, I find a little onesie we had purchased, or the bins of diapers, and bottles. Everything we had started preparing for our bundle of joy..
Even though I know this is God's will, it's hard to stay positive and hold it together. . It's a new kind of "numb"
With my husband and I about to celebrate our 2ns anniversary, this was certainly not how we thought we'd be living our life .
When we found out we were having our second baby, there were so many emotions. 
We couldn't help but to get excited at the thought of Porter being a big sister. Then we found out back in May we were having a boy. Our family was to be complete and we were excited. We talked about our family of four and made plans.
In one doctors visit, it changed to us praying that we'll get atleast some precious time with our son. 
When we got the heart breaking news of Trisomy 18,  and heard the terms "incompatible with life" ,  I don't think there could have been a more paralyzing phrase when it comes to talking about your unborn child . 
It's like swallowing a dry pill every time I think of what his body is going through. He looks so perfect on ultrasounds. I feel him move . I feel his kicks. 
We may not get as much time here on Earth as we hope, but I know his life has a specific purpose. God is giving him to us just the way he intended. He will help us grow in ways we don't yet know. 
We are still grieving and heartbroken about the picture of how things "should have been" but still so grateful.

 I am grateful for every kick.  And we are grateful God chose and trusted us to be his parents. 

Last Friday, we got the call that confirmed the diagnosis of Trisomy 18. It came back as Full T18, not partial and not mosaic. We met with the genetic counselor later that day where we just recieved more information.

I honestly don't know how much more information I can stuff into my brain. It's overwhelming.

All though it was hard to hear the final results, we felt we could finally start to move in the directions we needed to. 

The monday after came and I found myself back in Labor and Delivery in Eau Claire. I was once again contracting, but also bleeding. They hooked me up to the monitors and I just hung out. My doctor gave orders to give me a shot to stop/slow my contractions and then to do a fibronectin test.

A fibronectin test is a relatively noninvasive tool that can help distinguish between women who are likely to deliver shortly and those who are not. So more so to predict chances of premature labor. Mine came  back positive. All thought it can't for sure say "yes", it wasn't a definite "no." But I got to go home and will follow up with my OB next week.

As I was driving home, there was a double rainbow.

I believe this was some kind of sign from God, and I just bawled in my car, by myself.

Friday August 30th we went in for our fetal echo cardiogram.

How amazing is modern medicine? How amazing is it that someone can be trained to look at a tiny heart.

There are not many doctors with the ability to do a fetal echo on a baby in utero.I is a pretty amazing specialty to be able to read an ultrasound so well that you can tell if the heart is developing correctly or not.  Especially given that this can only be viewed through an ultrasound, on a heart inside of a uterus, on a heart that is only an inch or so big.

Most T18 babies will have some kind of heart issue. It's on the "list" of complications.

So we started with about an hour long ultrasound.

I just laid there, trying to see if I could tell anything from the ultrasound photos.  But let’s be honest…I couldn’t see a darn thing.

The dark room, the silence, and the pulsing of the heart beat on the screen above was almost make me fall asleep.

And then the doctor walked in.

He had been viewing the ultrasound as the tech had been performing it.

2 weeks ago the High Risk doctor talked of a "possible hole" in the heart. But it turns out we are dealing with something much more complex than that. Not only is the blood flow of the heart not right, there's also something wrong with how the blood from the lungs is flowing.This is a much bigger problem than they had originally anticipated.

This alone was enough for the cardiologist to say "You can't deliver here". 

He now would want us to be at the Children's hospital of Milwaukee. 

He also told us it would be best to pick up and relocate 3-4 weeks prior to birth so that we are close.

Again, another huge pill to swallow. How does one pick up and temporaily leave life behind? We have another child,2 dogs, and careers. 

While trying to wrap our head around that news, we were moved into the conference room to speak again with the high risk doctor.

Just when you think you can't get knocked down anymore, you're wrong.

Our baby boy had only grown .2 ounces in a two week span. He now weighs only 1lb 7oz. This would not be enough to survive if he was to come early. The doctor is not hopeful he will grow much more.

We also discovered his umbilical cord is now pulsing, meaning it wasn't giving a constant surge of blood. This in itself was more alarming. Our doctor fears one day it will just stop all together. He does not expect us to make it to term or a '"live" delivery.

Our ultimate goal in all of this , is to meet our sweet baby boy alive. Any minute, hour, or day after that would just be a bonus. We choose life. And hope we get to bring him into ours.

We then met with a Social Worker who seems to be a god sent. She is kind, and knowledgeable. She talked about laying out a birth plan, and will help with the process of all that is to come. It was nice to have someone help point us in the right direction.

But once again Lee and I have decision after decision to make. And which way do you go? I never want to look back at this journey and say "I wish we would have".

Next week we will go back to check on baby's heart and umbilical cord flow.

We will then meet with the NICU team and talk about the options of intervention.

We are hoping this gives us more insight on what to expect.

The following week we will have a follow up and do another ultrasound and fetal echo.

Everyday I wake up,will be another day of living with this immense anxiety. Wondering if our baby's heart will stop today. I'm constantly waiting for some movement to reassure that he's there.

And God is the only one who will know.

 1 Samuel 1:27
"For this child I prayed"
      Samuel Lee Strangfeld 💙