Feels weird

Ava is doing great today, which is good.  Yesterday I don’t think she was feeling that well, probably because of the after effects of the sedation and the tube they would have put down her throat during the cath.   So is nice to see that she is feeling better.

She might be feeling better, but I’m having a hard time adjusting now to Ava’s new accommodations at Sick Kids.   Because Ava is now on IV heart medication, Ava had to move from a private room she shared with me, to a “step-down” room with 3 other children that always has at least two nurses in it at all times.

This is a huge change for us, first off because I can no longer stay with her over-night and it’s just a different atmosphere… very busy and there seems to always be a baby crying, or a machine making noise or beeping, so it’s going to take some getting used too.

And last night just felt plain weird.  Here I am, a mom of five young children, without any children around!    I hope that Jason and the kids can come join me before I get used to it… haha.   Thankfully it feels too strange to feel good. 🙂

And I’ve had some pics of Ava that I tried to share last night but I don’t think they worked so I will try again.

Here is my little Birdy going for a walk in the hospital… this was before she got an IV pole, it’s not so easy now!

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And then a few pictures of her before her cath on Thursday…

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Once again, Ava looks great, even though on the inside of her things are telling a different story.

Thanks so much for all your prayers and encouragement, we appreciate them so much!!!

Strength for Today

Sometimes you need extra strength from God just to get through the day,  and yesterday and today were days like that.

We got the results of Ava’s cath yesterday before she was even in the recovery room.  The Dr who did the cath – who is also chief of cardiology here –  came to find Jason and I where we were waiting in Ava’s room.   When I saw that he also brought with him some back-up, in the form of the current staff cardiologist, I started wondering if the news might not be so good.

He explained that Ava had tolerated the cath well but during the test they found that Ava’s tricuspid valve was very leaky and this was making the pressure in her lungs high, which is not what anyone wants to see.    With high pressures in her lungs, Ava can’t get the next surgery she needs – the Glenn – which requires low pressure in the lungs so that de-oxygenated blood from her upper body can by-pass her heart and just flow passively into her lungs.

We asked if they would consider going in and doing a valve repair and then doing the Glenn – but he replied that Ava’s heart should be compensating for this leaky valve, but it’s not, and so there is a concern is that Ava’s heart is just not as strong as they would like it to be.

This news was a crushing blow… I never for once thought that Ava wouldn’t be able to get her Glenn.  And even though Ava looks great, it’s hard to hear that her little half a heart is just not as strong as it needs to be.

But we still don’t know what the future holds and this is definitely not the end of the road.   As things stand right now, they have put Ava on a heart function medication – milrinone – at least for the weekend, which will help her heart function in case they do decide to do some kind of surgery next week, like a valve repair.    Or they might decide to leave her on the medication for a few weeks and then repeat the cath.

But we really won’t know anything until Tuesday, when the surgeon and our cardiologist and many other cardiologists will put their heads together and have a discussion about Ava and come up with a plan for her.

So it’s very hard.  Especially when Ava and I are here at Sick Kids and Jason has now gone back home to be with the kids.  Until we get an apartment again at the Ronald MacDonald House we just can’t be together as a family,  but we are praying that God will be gracious and move that process along quickly, because I have a feeling we are going to be here for a long long time.

And so once again, we are learning how to live just one day at a time, trusting God that He is good even when life is not going the way we want it too.  I am finding all this right now incredibly tough, but that old hymn Great is thy faithfulness has been on my mind,  especially the last verse says this…

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness!” “Great is Thy faithfulness!“
  Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!

God will grant me strength for today and bright hope for tomorrow which is something I desperately need right now, and am so thankful that God is faithful all the time.