What a roller coaster ride…

So life here really is like riding an emotional roller-coaster.  There can be such ups and downs and I won’t lie, it’s very tough and emotionally draining and that might be why I just ate a ton of chocolate … chocolate is very very very good.

And of course, the timing of these roller-coaster rides is always bang on,  it seems to get you when you are already tired and wound up.        See we were visiting Ava last night around 9:00 pm and happily chatting with her nurse, when all of a sudden the baby next to us went into cardiac arrest.   Our nurse ran to this baby’s side, the room filled up with people and I just started praying like crazy, but as those parents started to sob, we left and didn’t end up being able to go back and see Ava again for the night.

That was a horrible experience.   We were pretty shaken up.  Thankfully that baby was OK, didn’t die and after talking to her parents today they said that they think think she had a blood clot since she had just had surgery yesterday.   Thankfully she was able to be stabilized and has had a fairly calm day today.

But it meant we started today perhaps a little more keyed up then usual.

And then of course I posted about how they were going in to remove Ava’s stent that was keeping her chest open and hopefully close her chest up.

And they did close her chest.  For about 20 minutes.

Then they came and told us they had to open it again.   She wasn’t tolerating the close, her heart rate had climbed and wouldn’t come down so they had to open it again.

Now we are back to square one and it’s disappointing.

I guess I like to think of my baby as so strong, and she is.  But she is also very fragile.   And it’s hard to understand God’s timing today when the close seemed like an answer to prayer, but then that wasn’t what He had in mind after-all… and for a minute or so I wonder why He allows these things that seem so amazing and then aren’t.   But then even as I’m typing this is what came to mind… a verse from Isaiah…

Isaiah 55:8-9

8 For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.
For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

So a day like today doesn’t make any sense to me, but we can still trust God in this, we can!    I’m thinking in my own human terms,  but God has his own plan for Ava, we just don’t know what it is.

Here is another verse from Ephesians that’s my prayer…

Ephesians 3:20,21 

20 Now to him who is able to do far more abundantly than all that we ask or think, according to the power at work within us, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

To God be the glory, a baby’s chest closed today or not.

Amen.

It’s a start…

We were so hopeful that today was going to be the day they would start to close Ava’s chest up.  But when we got here this morning we heard that when the Dr’s did their rounds this morning they decided to wait another day.

I was so disappointed!   And then sitting there by her bed I found myself getting more and more emotional and just feeling the heaviness that  can come with having to wait.

So eventually I went and looked for the chapel here, because I just needed a place to cry and pray… and just let all this emotion out.  So I went and found it (it’s very nice and quiet) and I cried and prayed and just laid it all down before the Lord and gave it all to Him.

And then, just as I was starting to feel better I got a text from Jason that they were actually going to start today!  Apparently the surgeon just waltzed in Ava’s room and said, “We’re going to do this”…  Praise God!

So I’m not clear on whether they are just removing the stent today, or removing it and starting to close her chest up,  but it doesn’t matter, it’s a start.   They will do it right in her room and it will take a few hours, so we will be sure to let you know the outcome.

Thanks for praying!