Poor baby….

Oh our Ava.  This morning I got a call from the hospital at 5:00 am to tell me that Ava wasn’t doing well again.   I made my way over where I found her once again with an elevated heart-rate, a fever and on oxygen with her CPAP.   They had already given her morphine and had put ice on her head, so her temp was already coming down and she seemed much better quite quickly.

When the nurse practioner came to examine her at 9:00 am, she found that Ava’s liver was huge and congested with fluid, and so it seems that Ava is the poster child right now for congestive heart failure….   her heart can’t move blood around effectively and fluid is backing up in her liver.     Ava had been given extra diuretics on Thursday and yesterday afternoon it really seemed like it was working, as she appeared to be feeling better and actually smiled for me.   She was awake and content for a bit as well,  so we were getting hopeful that things were looking up.

But I guess when that when that drug wore off last night, the fluid started to back up again.   And unfortunately I really think that when Ava’s liver is huge it hurts her.   There is another mom on our floor whose daughter is 12 and is also waiting for a heart,  and she said that when her daughter’s liver is huge,  it makes her daughter cry it hurts so much.   And Ava today seemed to be in pain, and when she was awake she was whimpering and crying and was very hard to settle, even with morphine.  And it breaks my heart but she doesn’t even like to be held when she doesn’t feel well…  and that makes me feel helpless.

I don’t normally go back to see Ava after dinner, but tonight I did in case she woke up again and was unhappy and hard to settle.   But I was pleased that when she did wake up she wasn’t upset, and even though she still looks puffy she seemed way more comfortable.    She sat in her bouncy chair and I gave her some milk to drink, and then she actually did let me hold her for a while, which was so wonderful.   And then she wanted to go back to sleep.  Her heart rate was low and her sats were great and she settled quickly,  so I am hopeful that she will have a good night tonight.

This waiting is hard!  And it’s taking its toll.  I’m feeling a little down….  and I think Jason and I are both a little afraid of what might be coming.  But then I don’t really want to go there when Ava just might rally and God might send a heart.    I sent out a prayer request to our church today and I’m so thankful for people praying and like I keep saying, we don’t know what the Lord has in store… and we know He’ll see us through.  But this not knowing and living the reality of that each day is exhausting.

So please keep on praying for our poor baby, and pray for us as we wait.