I hope He will…

Ava is seven months old today – where is the time going?     And she was  feeling a bit better which was nice to see.    She got a blood transfusion yesterday so that helped her hemoglobin levels and that meant her colour was better and she had a bit more energy.    But she was still a bit congested with extra fluid, and that made her tired quickly, but thankfully she was able to come off of her CPAP for over 4 hours today so that was a huge improvement over the last few days.   She is still battling low-grade fevers that go hand-in-hand with higher heart rates,  but at this point the Dr’s are starting to think that they are heart- function related.   So we all just keep a close eye on her and give her Tylenol to help bring her temp down, and make sure she gets lots of rest with her CPAP which keeps her heart rate down.

And we got a little chair for Ava to eat in today!     The occupational therapist and I have been attempting to give Ava solids for a while now and today she was really enjoying her puree pears and took 15 mls of milk from a sippy cup!   Which may not seem like much, but for Ava is a huge feat and I was very very proud of her… sweet little miss.

But the big news today in Ward 4D was that a heart finally came in!!!   There hasn’t been a heart come in since April,   and with so many kids waiting for transplants it was getting discouraging for everyone.    So all the dr’s and nurses were pretty pumped today.   Now it obviously wasn’t a heart for Ava, or even Aleeda which is too bad… it went to another baby who is 3 weeks younger than Ava.   And that gave me the opportunity to discover that no matter how happy you are for that other family, it’s also a very emotional thing to realize that their child now has a chance at life when your child might not.    In this case however, the transplant nurse today was very open in saying that because the heart was coming from far away it needed a recipient that could receive it quickly.    And the little baby that got it had never had surgery before and he was going to be straightforward, whereas both Aleeda and  Ava have had surgery before and the operation would have taken way long on either of them (that’s assuming it would have worked for either of them) and the heart wouldn’t last that long.

So the way I look at it, is that the little baby boy who received a heart today, received the heart that was meant just for him.   That means I don’t have to be jealous or upset, and praise God I’m truly not.    But it does make me happy to realize that hearts actually do come in…. it’s pretty exciting.    And everyone says that hearts come in waves, and if that were true than more are on their way and who knows… maybe Ava and our friend Aleeda will get their hearts soon!     How wonderful would that be?    I know that I have renewed my prayers for a heart for Ava, I know God can provide one… so I hope He will!

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7 thoughts on “I hope He will…

  1. Always praying and hoping for you all. Seven months! Wow! Glad you’re feeling better Lisa. Good health is such a gift. Love you guys and think of you often.

  2. Praying for Ava & Aleeda that they get the hearts meant just for them. Praying that everything will line up as needed (the time the heart has to travel, Ava’s health & readiness to receive it when it comes etc). There must’ve have been alot of mixed emotions in the hospital yesterday with that heart coming in! Praying for that little boy too! 🙂

  3. Hi Lisa,
    I am Julianne’s mom. Remember we shared our waiting and transplant experience with you at RMHT one night? I have been following your blog. What you are describing is all too familiar; fluid overload, blood transfusion, CPAP (Julianne was on it 24-7). She was only able to receive IV nutrition so I can imagine you are pretty excited about her being able to eat solid.
    When you mentioned that a heart came, my own heart stopped beating and I immediately thought of Aleeda ( I know it could not be you because you were too casual with starting your post) and my heart broke when I read it did not go to her. But they are right, hearts seem to come in waves for some reasons. And it is a real mix of emotions when you know it was in your range. Sight!
    Every day we think of our little people on 4D, and we still are so thankful that we get to be home together, while others have been waiting for way too long!
    Julianne is doing very well, she is chubby, loves her food, and smiles all the times. There is hope!
    Thinking of you and Aleeda, everyday!
    Marie-Eve

  4. Keeping you all in my thoughts and prayers and that little Ava will soon receive the heart meant just for her.

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