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.

Touched my heart…

Last week I received an email from dear friends of ours who used to be our neighbours for many years but have since moved away.   Their family suffered through the devastating loss of a newborn baby 7 years ago – so I know they have very tender hearts when it comes to babies. And I wanted to share some excerpts of what they wrote us…  

Hi Lisa, We want to let you know we have been praying for you guys from the Bahamas. We pray for strength physically, emotionally and spiritually for you and Jay as you take care and lead your precious family.   A few weeks ago we had a special dinner for baby Ava– we had heart shaped pasta.  We prayed for her heart throughout our special meal.  We decided that every time we spot a heart we will pray at that moment for baby Ava’s heart.  It may be a cloud in the shape of a heart or a rock or a shell or in a book.

Kezia has been making heart bracelets, they are adorable and are a great reminder for us to pray for baby Ava’s heart.  We would love to make and send heart bracelets to family and friends who are praying for Ava.  We thought if you could mention this on your blog with Kezia’s email kezia.dejong@hotmail.com anyone who would like a heart bracelet to remind them throughout the day to pray for Ava can email her with their mailing address and we would send them a bracelet.

This email touched my heart, right at that tender spot that makes you cry.   We praise God for friends like these who have never stopped praying for Ava and her heart and our family. Here is what the bracelets looks like, I love the hearts! heart photo

So if you would like one (I can’t wait till mine arrives!) please email Kezia and I know she would love to send you one – thanks Kezia!

How many times can I say that we are so thankful for the people God has placed in our lives?   I guess I just can’t say it enough, we are so blessed and God is good!

Still looking good!

Our little Ava is still looking good!    I took her to the cardiology clinic here in London on Friday and after the Nurse practioner and cardiologist looked at Ava on the outside and the echocardiogram showed them what they looked at on the inside, they agreed that she looked good, hurrah!  It’s always good news to hear.

And Jay and I certainly have no concerns with her right now…  even though she does have a cold, poor baby.  I didn’t really think that we would make it through all of March without getting something, especially considering our weather has not been all that it could be – and the other kids keep bringing things home.   Thankfully Ava seems to be tolerating this cold OK.   It’s all upper respiratory and even though it makes her cough and gag and sometime makes her vomit up her milk, she’s still growing and still gaining which is awesome.

And the count-down to her catheterization is on… I’m not sure how we are feeling about that so we can talk about that later.

Talking about Ava looking good, my mom had some fun last week and after giving Ava a bath thought she would give her a new hair-do…

Avahair

Oh our little Birdy – you do have an awful lot of hair!!!   And did you notice that her jammies have birdies on them?  I love it.

And we are so thankful that God is being so gracious to us and keeping her well.    I know that He is holding Ava’s little heart in his hands and that we can keep trusting Him every day.   So we praise Him alone that Ava is still looking good!

Monday morning…

One of the crazy things about having a child in the hospital is that every day is the same.  You wake up, shower, get dressed,  have breakfast,    make your way to the hospital and in our case, sit at the foot of your child’s bed and remain there for most of the day.

What day is it today?  Oh right, Monday.   So today Birdy is doing good, she has lost a lot of fluid which is good, she was so puffy after the surgery she looked like a little sumo wrestler.   They were helping her get rid of the fluid with medication, but now they have stopped those meds and she is still peeing well so that’s wonderful.

The surgeon was on the rounds today and he would like her off her blood pressure medications before he closes her chest up,  so I don’t know how long that is going to be because they tried to take her off those meds yesterday and she didn’t do so well.

See it’s all one huge balancing act.   She is attached to a monitor that shows her heart rate and blood pressure.  These both need to stay in an ideal range, but all the medications she is on either work for against her blood pressure.   Then you add-on things like the ventilator and whether her blood volume is low from them drawing blood from her so often, and so it’s a just a huge numbers game of checks and balances while trying to lower her off of these meds.  I have to give the nurses a huge amount of credit, it’s not an easy job.  Especially when her blood pressure dips and they have to figure out what changed and how to get it back up again.

So we just need to pray, pray that they could continue weaning her off these meds with good results.   As well, until her chest is closed and some of her tubes and catheter and ventilator are removed, she’s a sitting duck for infection… so please pray that she would be protected from infection so we could continue this healing process.

And it is a process and we have to be very patient and that’s what we are trying to be, very patient on this Monday morning.

Thanks again for your support and prayers!

Be Still….

Be still, and know that I am God.  Psalm 46:10.

If you’ve read previous posts, you will know that our unborn baby has a critical heart condition, critical aortic stenosis, and  that we were able to go to Toronto where they did a procedure on her heart Aug 16th to open her aortic valve which was had been so small her heart couldn’t pump blood through it and we were rejoicing.

But things have taken a turn.   We went back to Toronto this past Friday – the 24th so see the cardiologist for a check-up and what he saw after the technician took 79 pictures of my baby’s heart had him disappointed.  Her valve is open, but crazily enough, it’s now too wide open.  Her poor weak and swollen left ventricle doesn’t have the strength to push the blood out to the rest of her body without the help of the valve and so blood is coming back in – ‘regurgitating’ they call it back into this left ventricle.  And this means it hasn’t been able to heal at all.   Thankfully they couldn’t see more damage then they saw before, but certainly didn’t see any improvement in it.    So we are sad.

But all is not lost!  An open aortic valve is still far better than a closed one and if that valve could shrink just a little to help stem the flow of back-ward blood,  her left ventricle may still have a chance at healing and as we all agreed, the procedure had just been a week before and we just need to give it more time.  More time and lots more prayer.

And this is where faith kicks in.  Faith in God when things just don’t seem to be right, in fact in human terms they seem to be going wrong.   Sure it’s easy to rejoice and trust in Him when things look promising and we are hopeful things will turn out the way we want them too,  but how about when faced with the possibility that things might turn out exact opposite of what we want?   What if this baby still will lose the left side of her heart and have to have a palliation of her heart done where they turn the right side of her heart into a duo-purpose pumping machine and I have to spend weeks with her in the hospital, perhaps months away from my other kids and miss Christmas and New Years?  Honestly that thought breaks my heart.

However, again, even though I’m sad, I still I have hope.  I know God can still heal her, and even if that takes surgery and months of healing, I’m still completely trusting Him.  I’m not broken, maybe somewhat bruised, but definitely not abandoned.  And the Bible is full of verses to comfort me, starting with being still and just knowing that God is God.   I think John Piper once said that the things God does may be confusing, but God himself is Not confusing,  I love it because it’s true.

And as Jason pointed out to me, maybe His whole plan here is not to heal her, it may be to do some greater work which we can’t see,  which would be amazing as well.  God doesn’t give us all the answers, nor does He let us see the whole picture, but He does offer peace and hope and strength.

Here is the passage I’m clinging to right now…  Isaiah 40 27-31…

Why do you say, O Jacob,
and speak, O Israel,
“My way is hidden from the Lord,
and my right is disregarded by my God”?
28 Have you not known? Have you not heard?
The Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
29 He gives power to the faint,
and to him who has no might he increases strength.
30 Even youths shall faint and be weary,
and young men shall fall exhausted;
31 but they who wait for the Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.  (emphasis mine)

Even as I read that I can smile (even with a few tears in my eyes).  I can’t question God,  He hasn’t forgotten me, and if I wait on Him,  He will renew my strength.   In fact if you really want me to cry quote a verse from earlier in the chapter, verse 11…

He will tend his flock like a shepherd;
he will gather the lambs in his arms;
he will carry them in his bosom,
and gently lead those that are with young.

Wow, that can just make me cry like that! 🙂   He knows I’m extra vulnerable right now (and let’s be honest, more emotional) but praise the Lord,  He is gently leading me and what ever happens with our precious baby girl, God will never forsake us.  Amen.

I’ll keep you posted.