This storm…

Thank for everyone for your prayers!  And for your encouragement… once again.  The emails and the comments we receive on this blog mean so much to us, and I wish I had time to answer every one of them, but without the kids here I spend way more time at the hospital and even now I should be sleeping, but I’m not.  Oh well.  But thank you.

So this morning it was nice to see Ava actually feeling Ok and even though she wasn’t smiling, she let me hold her and I took for a quick walk through the unit.  Her heart-rate was low and her oxygen saturation levels were good,  and she seemed very comfortable.    Her fluid balance was actually positive, but on rounds they decided not to diurese her further, because that tends to send her electrolytes and things out of wack and they wanted her to hold steady for a while.  I had mentioned last night that I was going to ask about taking Ava off of Midazolam, but seeing how Ava was so comfortable this morning, one of her nurses cautioned me not to rock the boat, and I agreed, the girl really seems to like her morphine, midazolam combination.

So things were going well until the PACT team came around, you know, the palliative team.  And the Dr who is on for the next few weeks is one that we have been talking too since the beginning, and I think he was sad to see Ava now, even compared to a month ago.   And we talked about our goals for Ava.    Jason and I have already decided that we aren’t going to do everything to pursue a heart… as in we don’t want to send her down to the critical care unit, we want to keep her on our current hospital ward and  we want Ava to maintain some sort of quality of life.     It’s so hard because I think I’ve said this before, but if someone could say that a heart was coming in a week or two, that would change everything.  But seeing Aleeda who has almost been waiting for her heart for a year, I have to think that the wait could be a long one.     So we just talked about what might happen if we felt that Ava was starting to suffer, and even though we try to be rational and reasonable, as Ava gets worse, and we have to start facing the possibility of life without her, and it’s very upsetting.    It’s hard to be in a situation where the roads look so very different.  And every day the question is, will God send Ava a new heart?   Or will He take her home?  And we keep waiting.

So after they left and Ava was settled back down for a nap, I decided to come back to the RMH for lunch and a rest… but my heart was feeling very heavy and I didn’t really want to go back to the hospital.    But as I walked back I was praying, and talking to God and telling Him that through this, He has always given me exactly what I’ve needed, just when I needed it.  And I knew I could trust Him, but I just needed a little something to keep me going today.   And then when I walked into Ava’s room, the nurses were all excited to tell me that Ava had been awake and smiling and happy and I could just feel my heart praising God, knowing that life is not over yet for this little sweet Birdy of ours.

Last night our nurse was singing a song to Ava by Casting Crowns called Praise you in this Storm.  I wasn’t familiar with it, but I looked it up and the song could have been written for us. Here are some of the words..

I was sure by now
God, You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say “Amen”, and it’s still raining

As the thunder rolls
I barely hear You whisper through the rain
“I’m with You”
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I’ll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
Every tear I’ve cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I definitely could call our life a storm right now,  the conflicting emotions alone would qualify!   I never quite know if I’m happy or sad,  hopeful or fearful at any given time.  But one thing I am sure of, that God is going to bring us through this storm, and like the song says, He certainly has never left our side.    He is going to be amazing, like He is each and every day as He proves His faithfulness over and over again.

One more day and this story isn’t over yet!