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!

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8 thoughts on “This storm…

  1. Amen!!! He has never left your side.
    That song has ministered to me on many occasions. After our miscarriage, I remember driving, listening to it and crying so hard throughout but especially at the phrase “Though my heart is torn, I will praise You in this storm”…because I realized that though my heart was broken, and though it wasn’t easy, I still needed to praise Him, the One who gives and takes away b/c He is so good and so merciful and thankfully never changes even in the midst of these storms!
    He will bring you through this storm as He has in the past and will in the future! 🙂
    Your family is continually in our prayers.
    You are loved.

  2. A really good song, even if it’s hard in times of storms. Two strong ladies (you and Sherry Lynn who just posted) that I pray for and am grateful that we serve a God who is stronger than any of us and can hold us through these things.

  3. Wow…I am so encouraged by your walk! You guys are truly incredible and God is doing amazing things in your life. Isn’t it great how God has surrounded you with Godly medical professionals?! Especially a nurse who is signing over your ‘little Birdy’. May God continue to provide you with what you need for each moment. Praying for Ava and for each one of you during this storm. Thanks for your thoughts that you share so candidly.

  4. You are both truly amazing. I read every single post and am uplifted every time. You and Jason played a role in helping me travel my journey with Roger. Roger went home to be with our Lord Sat night. He is healed, free of pain and suffering and we will see each other again one day. Stay strong and you are never far from my thoughts. Stay strong little Ava.

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