growth.

This morning I had our first “routine” growth ultrasound since we learned about the chromosomal syndrome Gabriel has.  We’ve been anxious to see how things look.  As my doctor put it afterwards, we don’t ever expect anything to look better but things could look worse.  The good news from today was that things don’t look worse.  There are no signs of heart failure.  The swelling on the brain has not increased in the last 4 weeks.  We are so thankful for these things!  These would be signs that death is coming sooner rather than later and while I don’t think I’ll ever be ready, I’m definitely not ready to say goodbye yet.

 

His size.  While this isn’t bad news, it’s hard for me to swallow for some reason.  Our little guy is just that– very little.  Since we started monitoring him at 20 weeks, he’s been on the small side.  But unfortunately since 20 weeks, his growth seems to have slowed more.  They estimate that he’s one pound one ounce.  Which means he is less than the 5th percentile.  And while this would have different implications if he were a “normal baby”, he isn’t so it doesn’t.  What it means for us is that he’s a little guy, and always has been, and is expected to be with trisomy 18.  Our love for him isn’t measured by his weight.

 

He’s so active, and I’m so thankful for that.  He moves around a lot and every time we have an ultrasound or a test, the sonographer always comments on how much he moves.  I love that he defies the odds in that way.  His heart, brain, or chromosomal problems can’t keep him from being active and awesome, and I’m really proud of him for that.

 

sweetgabriel

 

So I long to write this post and call it an update and tell you things like “we have a plan for surgery after birth & they’re going to save his life”, but that’s not the case.  The truth is that I want my updates to be big things that change things but instead they’re little reports about how things really stay the same.  And I count them, because it’s all we have to count.  It’s our time with our son.  It is our life.  It’s his life.  It’s what God has called us to, so we must be faithful to walk the journey.  And that means counting things when they’re not the way I want or the healing I dream of.  When they stay the same or when they get worse.

 

As I process today I am thankful for our sweet Gabriel.  I’m thankful for the life that he is.  Thankful for another day I got to spend with him.  Thankful that I get to be with him all day.  Thankful that I know him.  Thankful that God is using him to change my life.

 

 

Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. 

Psalm 23:4 

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jack and me.

Yesterday was a great day for Jack and me.  Lately I’ve had a lot of help with him from Tommy, grandparents, and friends, too.  But yesterday it was just me and him all day and we had a great day.  No special outings.  No big plans.  Just spending the day together.  This age is so fun.  He is aware of everything, knows how to have fun, and is definitely my little buddy.  He likes the independence he has these days to run from room to room do something different and then come back.

 

I’m always thankful for a great day with Jack.  Always have been.  But it was especially encouraging because I’ve felt less connected to him since learning about Gabriel’s syndrome.  I know there was some fear, or a lot of fear, in that.  Not wanting to be as close to him and lose him.  But that’s no way to live!  And I certainly don’t want to live like that.  The first weeks were the worst, and have since been better in terms of connecting with Jack.

 

 

jackbackpack

 

This picture turned out terrible.  I really wish I had taken some more pictures.  Not of anything special but just of the things Jack likes to do these days.  He’s obsessed with his “boops”, which we adults know was boots.  And yesterday he was all about wearing his backpack.  Growing up so fast!

 

Happy Saturday friends.