Next Steps

Yesterday was such an emotional and exhausting day, and today has been such a busy day, that I just haven’t had time to blog.  But now my mom is going to make me a cup of tea and I will gird up my loins and write write write.

So yesterday… the big reveal.    Jason drove up to Toronto Monday night so that we could be together to talk to the doctors Tuesday morning, and it was wonderful to have him here.   We waited impatiently for rounds so we would hear about their plans for Ava, but when the rounds finally came in, the ward cardiologist said that he would come back after rounds to talk to us… around noon…. AUGG!!!

But since we are resourceful, we went in search of Ava’s cardiologist,   who we had heard had come looking for us first thing before we got there.       Not only were we looking for to get some information more quickly  (aren’t we awful?)  we really trust and respect him, and we knew that if it wasn’t pleasant news, we would much rather hear it from him.

We were able to track him down and thankfully he had a minute to talk to us.   He right away said that after looking at her cath results, he could see clearly for himself that the function in her right ventricle was decreased and that her tricuspid valve was quite leaky like we had already been told.   And unfortunately during the surgical rounds that morning, Ava’s surgeon said he didn’t feel that he could go in and do a valve repair unless it was part of the Glenn surgery.  But that is the problem, Ava can’t get the Glenn because the pressures in her lungs are to high, probably due to the valve leaking!     And the valve is leaking badly partly because there is too much volume in her heart.

So in a nut-shell, Ava can’t get the Glenn surgery because she needs the Glenn.   The Glenn would reduce the volume in her heart and it’s work-load and probably help out the valve too, so it’s a huge predicament.     And unfortunately there is another problem,  the left side of Ava’s heart – her left ventricle –  is still big and because it’s not functioning, it’s acting like a big boat anchor and is dragging down the function of the right.  And unfortunately, I don’t think it’s something that can ever really be remedied.

So the plan.

The plan is to keep Ava on her heart medication drug that she is currently on –  milrinone – and then on Friday she will get another echocardiogram.  If the milrinone has helped at all by improving her heart function, they will think about doing another catheterization.    And if the cath showed any improvement, they would reconsider doing the Glenn surgery.

But if Ava’s heart function hasn’t improved by Friday…  well then we start thinking about having Ava listed for a heart transplant.

A heart transplant.

Never ever would I have thought that that card might have to be played this early in Ava’s life.  And I’ll be brutally honest, baby hearts are NOT easy to come by and if by chance Ava needs to be listed and we decide to go down that road, we could be waiting an awfully long time.     And keeping a baby who needs a heart healthy, until that new heart arrives,  can be a huge challenge.

And it just seems too much to think about it, and it made yesterday a very tearful and heavy day.   Not that we haven’t given up hope for this week’s echo to show some good news.  But it seems that we have had so much bad news in the Ava department that hope for saving her own heart does seem to be ebbing away.

Oh Lord, please grant us the strength just to get through this day – and this day alone, because the future is WAY too daunting.

This verse keeps coming to mind…

Matthew 6:34   “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

You can say that again.  But that is exactly the lesson that God started teaching us back when Ava was born and then when Sarah got diagnosed with diabetes.    That God is only granting us the grace to get through today – as we try to live just one day at a time.   And I won’t lie, it’s not easy… and it can be down-right painful at times.    But through it all God is already showing us He cares for us by giving us what we need.   Like how I got an amazing sleep last night and woke up with my soul refreshed, and then we found out today that we got an apartment at the Ronald MacDonald house so Jason and the kids can join me here, praise God!

So the next steps are exactly that…. steps… that will we take one day at time,  thankfully with all your support and your prayers for our sweet little Ava, our Birdy.

Thank you and Amen.

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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.

Wasn’t expecting to hear…

When rounds came by this morning I certainly wasn’t expecting to hear that they are doing Ava’s catheterization tomorrow and hopefully here Glenn surgery next week!!!!  But that’s what they said and its wonderful news.  But now Jason and I are in a bit of shock and I’m getting a little nervous.    I mean it’s all well and good to wish for something but now that I know Ava’s going to have surgery again… well I’m going to try not to worry.

Now we need to arrange for Jason to come to Toronto and figure out what to do with the kids and everything, so it’s going to  be busy, but I know it will all work out.

So sorry this won’t be a long post, I just wanted to send an update.  Ava is doing OK, but definitely not 100% and I’m so grateful that there are no plans to send her home, but that they really want to fix her now.   With her heart function down and the fact that she is growing out of her shunt, there is no way for her to get better now without surgery and so I’m just glad that it’s going to happen sooner rather than later.

So please keep Ava in your prayers and hopefully we get some good results from her cath tomorrow!!

Catch-up

I haven’t blogged in a few days,  it’s been busy here, so now I’m grabbing a few minutes to catch up.

So yesterday – Sunday – we dedicated Ava at church and it was so wonderful to be there with her and share a bit of our story.   And we felt really blessed to see all our family and friends who made a special trip to come and support us and we just want to say thank-you again to everyone who came… it meant so much.  And to our church family who hasn’t stopped praying, we are so glad you finally got to see our little Birdy and we so appreciate all your prayers and support as well.

And then Saturday, Ava was 5 months old, amazing!   And as of today she weights 12 lbs 8 ounces!   She’s growing slowly but surely.   And thanks to the fact that I’ve cut all dairy from my diet because of Ava’s cow’s milk protein intolerance, she hardly has any reflux these days.    And even though we would have liked to see Ava get her Glenn surgery this month, I know it’s all in  God’s timing and maybe the longer it takes to get her cath the better the pressures in her lungs will be.

Friday unfortunately, I had the wind taken out of my sails – sort of speak – when I found out that two of the children that had been on 4D – the Cardiac floor at Sick Kids –  the same time as us had passed away.   Their families had also been at the Ronald MacDonald house with us and it’s really tough any time a cardiac child dies.   I think what struck me the hardest is that I watched one of the moms just giving her all trying to help her 2 year old daughter get well,  only to have it not be enough in the end.    And that’s a lesson I need to learn, that with Ava –  or any of my children for that matter – no matter how hard I work,  my best efforts aren’t going to keep anyone here that God has called home.   He already has a plan for each of my kid’s lives just like Psalm 139 says in verse 15 & 16

My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

So I’m not being morbid, I just have to trust God and take each day with Ava and each of my children as a gift… even on the days when they don’t feel like gifts. 🙂

And then Thursday we saw Ava’s paediatrician who is just a lovely person and she was really happy with Ava and her progress, hurrah!   Now she did warn me not to take Ava to malls or anywhere else teaming with infection (hospitals?  haha)  but when I told her I was taking Ava to church on Sunday she said it would be OK.  And we kept Ava out-of-the-way on Sunday and people were careful not to touch her and hopefully that was enough to keep her from catching anything.

So I feel all caught up now… with my blog at least.   Even though it feels like I’ll never be caught up on sleep,  housework or laundry,  at least I can feel caught up in something!

There and back

So yesterday we made the trek to Toronto again.  Except this time it was Ava and I and Jason’s sister Lija (Lija – the cool Latvian way to spell ‘Leah’ ) and we left Jason and the kids at home.  It worked out better that way so Jason could be in town for Sarah.  Plus, Jason is the morning king.  He wakes up at 6 am every day to give Ava her 6:00 am feed, he then gets the kids out of bed,  feeds them, packs their lunches and walks them to the school bus.  Every day.  He rocks.

Maybe someday I will venture to Toronto alone with Ava, but at this point I’m too tired to drive myself, plus I  enjoy the company and the help of having another person there with me.   So thank you Lija for taking the time off of work and taking us!  And we had a great day together and Lija was very good about me dragging her all over the hospital and talking to what seemed like a million people, she is a very patient person.

And the good news is that the Toronto team was very happy with Ava.  Every time they see her in clinic they remark that they’ve never seen her looking so good and it makes me so happy and grateful to God for His goodness.  And I’m happy to report she’s gaining weight and growing, which is fabulous.  She’s only in the 3rd percentile for weight, but for her height she right around the 15th percentile.   It’s a little surprising that she is a good height considering she has Turner’s, but we’ll gladly take it!    And her echo looked good as well.  It’s funny though because they couldn’t get a good look at Ava’s shunt during the echo, and the tech even had a doctor come and try…  and I came very close to offering to show them how I’ve seen other tech’s do it, but I refrained.   I’m positive I could do it, but if I couldn’t I would feel very silly. 🙂

Now, the cardiologist that is part of the Single Ventricle Team we saw yesterday was a bit pessimistic.   He didn’t think Ava’s heart function had gotten worse, but he mentioned that it hadn’t gotten better either.  I was surprised that they hoped it would get better and asked him if they really expected that,  and he just said that a few kid’s hearts do.   He also threw out the word ‘transplant’ which I found a bit strange as we are nowhere near having to think about a heart transplant for Ava at this point.   I know that for single-ventricle kids, a transplant is often the reality, but according to the Children’s hospital of Philadelphia, there are thousands of people in the 20’s and 30’s living with single ventricle hearts, which is amazing news, although even then they often have to deal with other health problems.   Thankfully Ava’s cardiologist –   Dr. Jaeggi – also came by yesterday and he was much more optimistic and pleased her with echo results, which was reassuring.

And so walking away from that appointment I felt that over-all,  things were positive.  And we don’t have to go back to Toronto until April 23 for Ava’s pre-cath appointment.  Her heart catheterization is on the 25th of April and the dr did say that if the catheterization went well and they feel that the pressures in Ava’s heart are low enough,  and she is strong enough to with-stand surgery, that booking her next surgery in May might be an option.   That would be amazing!  And they also said that no matter what happens with Ava’s heart, she will be so much better off after the Glenn Surgery  (You can read more about all three of the surgery’s here) and it will just be wonderful to have it done before summer.

So that was our Toronto trip yesterday.  We left at 6:00 am and returned at 6:40 at night, a long day, but a good day and it’s so good to know we don’t have it do it again for a whole month.  And I’m always greatful when we can go there, and then turn around and come back.

Amen. 🙂