Small, frail and weak

Our sweet little Ava… she’s doing pretty good all things considering.  But when I was holding her today she just felt small frail and weak.   She really hasn’t gained any weight in the past couple of weeks and being so sick has drained any strength that she did have and she just doesn’t have any reserve left at all.  She can’t take much before she gets tired and irritable.

She did have lots of smiles for everyone today which was wonderful, but when our Sarah saw her this afternoon finally – after not being able to see her for a week – she said that Ava didn’t look pretty anymore.  Ava’s eyes are rather red, and she’s much bluer around her nose and mouth.   What she really needs right now is a blood-transfusion as her hemoglobin is low.  Unfortunately they are weighing the risks for one as introducing new blood to her system could result in her developing more anti-bodies against foreign bodies in her system, and that would include a new heart.  We don’t want that, because the more anti-bodes she developes, the more high-risk a transplant becomes.

The good news however is that because Ava is on CPAP now for sleep – we have switched teams at the hospital.  We had been followed all along by the Single Ventricle team – a team that follows the care of all the babies born with only half working hearts – either the left or the right side –  but now that Ava’s main problem’s are mostly related to her lousy heart function, we are being followed by the Heart function team.  I love our nurse practitioners and Dr’s on the SV team, but as I said to them, I’d rather be an average patient on the Heart function team then the patient in the worst shape on the Single Ventricle team.  🙂  And to be honest, the Dr we saw today with the Heart function team was more optimistic about Ava than anyone else has been lately.  He was confident that if we can get some issues with Ava sorted out – primarily her fluid balance – then hopefully she can be stable for a while.    It was good to hear, because it’s good to have hope, even though he doesn’t know Ava like the SV team did.   But we are taking the change from the hands of God knowing that He knows what’s best.

Actually I have to share that the Heart Function team is the new sanitized name for the team that used to be called the Heart Failure team… ha!   Gotta love name changes, but in this case I agree that Function sounds better than Failure.  Failure does NOT have a nice ring to it.   Just like we are also being followed by the PACT team – the Paediatric Advanced Care Team, which used to be called the Palliative and Bereavement Team.  Aren’t names wonderful? 🙂   Now the PACT team has a name that is practically meaningless, but at least it doesn’t sound so grim.   These new team names seem much more optimistic, even though they are still dealing with the same sad stories.

The PACT team has actually been amazing… they are great to talk to and have supported us in many ways, and one way is that they provided a professional photographer to come and take a family picture of us with Ava.   We had never had one done and I would have regretted it forever if we didn’t have a pic of all of us together.   So the photographer came last week and I’m so glad it’s done and I can’t wait to see the end results.  The team has provided alot of support – and not to worry – it doesn’t at all mean we’ve given up on Ava – it’s just that we understand that she can’t live with her heart the way it is now, and it is failing.  So her death is something we might have to face.  Hopefully not if God wills a replacement heart for her, but this team has been a huge help to us so far, and will be if we hit a time of crisis.

In other matters – the kids had their final school wrap-up “Fair” today – and we are once again thankful to the Ronald MacDonald School where are kids were able to finish out their school year.   They preformed a play today that was really cute and I’m glad going to school has been able to keep some ‘normal’ in their lives.

So back to Ava – she might be frail and small and weak, but I know who is carrying her and we have faith.   Thanks for praying!!!!

Isaiah 40:11

 He will tend his flock like a shepherd;
 he will gather the lambs in his arms;
he will carry them in his bosom,

AMEN

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5 thoughts on “Small, frail and weak

  1. I received my bracelet in the mail today from Kezia, and am honoured to be wearing it. Love that as I look down, which I do hundreds of times a day, I’m now reminded to lift Ava and your family up to Him.
    You’re an incredible woman Lisa. I’m so thankful for you. You’re a beautiful example of what a godly woman should be. Thanks for living out you faith in pure honesty. It has drawn me nearer to Him.
    Praying for you all and trusting in our God who loves us all so much. God bless your family; your sweet Ava.

  2. You know Ava comes by her strength naturally!! You and Jason have been through what many including myself would have crumbled!!! Don’t loose hope and prayer she is a fighter and with your strength behind her she will fly!!!

  3. Our stories are so similar. Our girls are going to rock their new hearts!!! Frail no more!!! Giving God ALL the glory!

  4. i had tears for you tonight Lisa, for your love, your strength, amazing courage, and your family. your journey with Ava, sure is teaching me the power of unwavering faith. You and Jason are an inspiration and you may not see that now through daily struggles but we all do and will continue to remind you as continue on whatever journey you are given.

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