It has been almost a week since we received the news on Silas.  It feels like yesterday that we were sitting in that little room shocked at his diagnosis, but yet it feels like weeks.  Once getting home we immediately were thrust into our parenting duties of our other seven children who were mostly still sick from the stomach flu.  We had to try and explain what will be happening to Silas on several different age levels.  Several doctor appointments had to be canceled and several new ones made.  Each time having to retell what was going on.  Boyd and I also had to do something that I never dreamed we would have to do- think about what we wanted to do when Silas passes away.  Needless to say it has been a whirlwind.  Each day filled with smiles of my children being silly or doing something ornery, sadness at the reality of what is going on, and frustration and some anger as to the big “why?”,  and the paranoia of can I still feel him moving.  The day we got back Silas’ baby blanket that I had someone make had arrived along with a few outfits I had bought for his hospital stay.  It took me several days to open them.  When I did all the emotions came flooding out.  I was completely broken at that point.  But as on so many occasions my God wrapped me with His merciful arms and gave me strength to walk out my bedroom and face the rest of the day.

We go Friday for my amnio at which point we will have another ultrasound done and will see how much the hydrops and the heart failure has progressed.  We had declined the amnio early on due to the risk of miscarriage, but now we think it is the best decision to see if any of his conditions were caused by genetic or chromosomal issues.  This information could be helpful for when our own children start families.  We also bought a fetal doppler to keep track of his heartbeat.  We thought it would help alleviate all the guessing if I had felt him move that day.  His heart rate has slowed considerably.  It stays around 70-80s.  Each step in this journey still hits hard even though we know he is very sick.  Just hard to accept.

Many friends and family have been such a huge support in prayer and just listening.  Our church body has also been faithful with prayer and providing meals this week.  It has been such a huge blessing to have one less thing to think about and prepare.

I know some will question or wonder how I can put such a personal situation out there for everyone to see.  We even at times have typed something up and deleted it because we thought “This is too personal, I don’t want the attention from it all right now.”  But I want to be an example to people that we can be faced with the most horrific situations in life and have all those normal responses-anger, sadness, wanting to run, to question, and just quit-but that does not mean our God has left us or forgot about us.  I posted this song on FB and I think it tells it well.

He Is With Us-Love & The Outcome

Remember when your hope is lost and faith is shaken
Remember when you wonder if you’re gonna make it
There’s a hand stretched out through your deepest doubt
We can’t pretend to see the ending or what’s coming up ahead
To know the story of tomorrow
But we can stay close to the One who knows

We can trust our God
He knows what He’s doing
Though it might hurt now
We won’t be ruined
It might seem there’s an ocean in between
But He’s holding on to you and me
And He’s never gonna leave, no
He is with us, He is with us
Always, always
He is with us, He is with us
Always

We believe there is purpose, there is meaning in everything
We surrender to His leading
He wants nothing more than to have us close

We can trust our God
He knows what He’s doing
Though it might hurt now
We won’t be ruined
It might seem there’s an ocean in between
But He’s holding on to you and me
And He’s never gonna leave, no
He is with us, He is with us
Always, always
He is with us, He is with us
Always

Our faith is sealed
Our hope is real
Come what may
We’re not afraid
Our faith is sealed
Our hope is real
Come what may
We’re not afraid
We’re not afraid

We can trust our God
Always, always
We can trust our God
Always, always

We can trust our God
He knows what He’s doing
Though it might hurt now
We won’t be ruined
It might seem there’s an ocean in between
But He’s holding on to you and me
And He’s never gonna leave, no
He is with us, He is with us
Always, always
He is with us, He is with us
Always, always
He is with us, He is with us
Always, always
He is with us, He is with us
Always
Our God is with us

Read more:  Love & The Outcome – He Is With Us Lyrics | MetroLyrics

We still pray and have not given up hope that God can perform a miracle in our little boys life.  My faith in God has not wavered.