So thankful

Well I’m sitting here thankful for quite a few things.  First off, for all the support and love that people have sent our way through emails and comments on our blogs the last couple of days… you guys are making me weep (in good ways) – and reminding us over and over that God has not forgotten about us, He’s still laying Ava and our family on your hearts – and even your little one’s hearts –  and so even today when I don’t seem to have much hope in hearing good news tomorrow, we know that God still cares and is being so faithful.

And the verses that you guys are sending!!!  Love them!   Here is one that a friend sent… with her note

Romans 15: 13 May the God who gives hope fill you with great joy.
                               May you have perfect peace as you trust in him.
May the power of the Holy Spirit fill you with hope.
(this is from the NIV bible for young readers…so simple isn’t it?)

It is simple, so simple, but exactly right and just what we need right now,  joy, perfect peace and hope…. all free gifts of God to those who believe in Him and call on His name.  We are so blessed by God even in this crazy situation.

So yes, the situation.   Ava’s echo tomorrow is going to be a sedated echo, so she will be NPO (nothing passes orally) starting from 4:00 am to get her ready for sedation for 9:00.  It is going to be a very thorough echo, they are going to leave no blood vessel unscanned as they seek to discern whether or not Ava’s heart function has improved at all.

As the doctor on rounds said today, if her heart function looks better, we will redo the cath.  If it’s not better, or if it is worse then….  He just stopped talking.  He didn’t need to continue, we both knew what he meant.  It means we need to think about transplant.

But that is still tomorrow’s worries, so I won’t borrow trouble.

I am thankful that my mom could come down and spend a night with me and spend time with Ava.   I’m grateful that the Ronald MacDonald House got us an apartment and that my mom could help me move in and that Jason and the kids will join me shortly.   And I’m grateful that we have such good care at Sick Kids and that Ava’s cardiologists, both in London and Toronto are very caring and compassionate.

And I’m thankful that Ava is doing so well and had a good day and that even though we are in room with sick children we still can laugh and joke with the other moms and nurses and have good days.

And I’m grateful that Jason is doing an amazing job at home with the kids and that friends and family are helping so he doesn’t have to do it all on his own.

But please please, keep praying!  Your prayers are strengthening our faith and God’s power is evident, and whatever comes tomorrow, we know that God will see us through.

Amen!!

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.

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.

Cath Today

Please pray for Ava as she is waiting for her catheterization!    She hasn’t taken anything by mouth since 4 am to prepare for it, so she is hungry, but they did put an IV in for fluids and she is sound asleep right now.     Hopefully they will come get her before noon – but hopefully not before daddy arrives.  🙂

For the cath they will go into a vein in her groin and send a long flexible rubber tube into her heart to do some testing to see if she is indeed ready for her next surgery.   She will sedated and of course there are always risks involved,  but I got down on my knees this morning and prayed for her and God has give me peace which I’m so thankful for.   Ava is His and I know she is in His hands.

Ava’s cardiologist from Sick Kids came by yesterday and in his opinion this cath is being done to close to her diagnosis of influenza back in April.    But he said if things don’t look favourable, not to panic,  but we would just do another cath again in a few weeks.   I have no idea if we will wait at home or here.

And in a surprise turn of events, our Cardiologist from London in at Sick Kids today, so he came by to see us as well which was very kind.   I once again am thankful for such an amazing team of caring people who Ava has around her.

So please pray that God will guide the Dr’s hands and that they will all be astounded at how well Ava’s heart is.    We would love to hear some good results so we can move forward, but on the other hand we don’t know what God’s plans for Ava are and we know that not-so-good news is also a possibility, but we will just take that as it comes.

Here’s a verse for Ava today..

Psalm 139:13-14, For you formed my inward parts; you knitted me together in my mother’s womb.   I praise you, for I am fearfully and wonderfully made.  Wonderful are your works; my soul knows it very well.

Thank you for praying and I’ll keep you posted!

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!!

No plans yet…

Well I wrote a big post on my phone last night but couldn’t figured out how to publish it, which turns out is a good thing because things have changed once again today – as they have a habit of doing – so now I will write a new post here on the computer in the library.  Ava is having a nice snooze so I could run out for a bit which is always nice.

So, as of yesterday it seemed that the general consensus was that Ava was basically here in the hospital now until her next surgery.  The cardiologist was going to try to get her a new cath date earlier than the one that was going to be booked for the first of June and then surgery would get booked and we would just stay in the hospital until it could all get done.     Which in light of Ava’s decreased heart function and increased valve leaking seemed to be a good idea, especially as she has been on continuous feeds since we got here and increased lasix (diuretics).

However,  it seems the cardiologist is having a bit of a hard time getting everyone on board with this plan,  especially since Ava still does have a cough and it’s still not 4 weeks since she had influenza.    The cath people will only do an earlier cath if the surgeon will do surgery right away.  But we still don’t know if the surgeon is comfortable doing surgery since Ava still isn’t 100% and after you have an illness like influenza, it can make recovery more difficult.

So if that is the case, and we have to wait a week or two anyway, we might as well go home!  Which would be wonderful in one way, but scary in another, because now we know Ava is even more fragile then she was before and what if she gets sick again?   But there are risks to being here as well so who’s to say which is the better choice.

But in order to qualify for going home, Ava needs to be back on bolus feeds (being fed every three hours like normal) and her lasix need to drop down again to twice a day.   It will be interesting to see if she tolerates these things, because if she doesn’t we aren’t going home either.

So that is why I can say there are no plans.  There are too many variables and too many things need to be sorted out and figured out.

Please pray that this would all be happening according to God’s timing and that whatever is decided is for the best.   Ava and I are fine, it’s been nice seeing everyone here again and I’m meeting some friends today so today is going to be a good day.  We aren’t suffering at all, except we are missing our family like crazy which is a given of course.

But we will just take it one day at a time, and just chill and wait for someone to tell us what the plan is. 🙂

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!

Home again

So we got released yesterday and brought Ava home from the hospital, hurrah!   It’s so good to be home, although Ava definitely isn’t 100%.   Her nose is still stuffy and it’s only today that she has started to smile again and look some-what happy.    Last night she was tired and lethargic which had me a little worried, so to reassure myself I paged the cardiologist on-call in London to just check to see if Ava’s behaviour was normal.  Thankfully the Cardiologist on call was the one who had seen Ava that morning and she felt that if Ava’s vital signs were good then I shouldn’t worry as it made sense for Ava to be feeling tired as she is still tying to kick this bug.

But praise God – that He kept Ava and held her and that she wasn’t worse than she was.  I had a moment of panic when I brought her in to emerg in London Tuesday night – because while she was being triaged – the nurse asked me to come with her somewhere more private – and she brought us into the trauma room.   The room then suddenly filled with people and dr’s and they started her on oxygen and inserted an IV and I was a little surprised, and then worried because I knew that she wasn’t right – but obviously didn’t see how bad she really was.   I guess the fact that her little half of heart was beating almost 200 beats a minute clued them in that something was very wrong.

I’m so thankful once again that we live close to a good hospital filled with competent people.  And everyone in the emerg at London takes Ava very seriously and I’m glad.   And again,  influenza could have taken Ava’s life,  but God spared her and I am so thankful for everyone’s prayers, so thankful that she is on the mend and is back at home with her family.

But now in the aftermath of getting a positive influenza diagnosis,   Ava’s catheterization is once again postponed and it looks like it won’t happen until the end of May.   Just to recap – the catheterization is a procedure where they will insert a thin catheter into one of Ava’s veins, go into her heart and test the pressures of her heart and lungs to see if she is ready for her next surgery – the Glenn.   And Ava desperately needs her Glenn surgery so that her heart won’t have to work so hard.    If everything goes right, after the surgery she won’t be as medically fragile and hopefully won’t require as much care… but that part is neither here nor there.  She is our child and we will give her whatever care she needs for however long.

And I was blessed to come home to a tidy house with ALL my laundry done thanks to my wonderful mother-in-law who took care of Sophia and lended a hand.   We couldn’t manage it alone with everything that we are going through and we are blessed with all our friends and family who keep helping us.    I keep saying that it’s like we are trying to juggle it all, but no matter how hard we try, we keep dropping balls…   but that’s our life right now.   God is certainly giving us a lot to handle, and as Jason always says, it’s amazing what you actually can handle. 🙂

So we are go grateful to be home and together again on such a beautiful day… Praise God!

So Ava has…

Ava’s nasal swab came back and she has influenza.   Influenza, at the end of April, so annoying!    But it makes sense, because Sarah had classic influenza symptoms last week with her three days of fever and runny nose and cough.     So one week it plays havoc with Sarah’s sugars and the next week lands Ava in hospital.  I am not a friend of influenza.

They are starting Ava on Tamiflu tonight – the anti-viral medication – and the dr said today that they won’t be sending us home tomorrow so it looks like we will be here until Friday –  hopefully not longer.

It does mean that we will have to reschedule Ava’s GI appointment that she had at Sick Kids this Friday.  It was her first appointment to start the process on hopefully getting Ava a Gastrostomy tube (G-tube) to replace her current nasal gastic feeding tube.    But I guess it will have to wait.

We will also have to see if we can keep Ava’s new catheterization date of May 13 , I will keep you posted.

So please keep praying for our sick little Birdy and our family as we are split up for a few days.   Thankfully by God’s grace we’ll get through this little bump in the road just fine and we are just really happy to know what Ava has so can deal with it and keep moving on.

Spoke too soon…

Well I know that I just posted that Ava was doing well in my last post, but apparently I spoke to soon.  The next morning after that post – yesterday morning – Ava woke up with a hacking cough.. oh no!   And then I noticed that it looked like Ava was trembling while she was sleeping, and sure enough she was breathing much faster than her norm and seemed to be working a bit harder to breathe  as well which didn’t make me happy.

So to be on the safe side I called her pediatrician and made an appointment to take her in that afternoon, but just to make sure I called our Single Ventricle nurse at Sick Kids to see what she thought, and she said that rather than take Ava to the dr, she should go to emerg.  So I packed up everything, and Jason drove us to the hospital.

And they were really good to us.   On one hand  – with Ava being who she is they don’t want to take any chances, but on the other hand, she wasn’t presenting that bad – not like the kid next to us with a terrible case of croup.  That’s the thing –  here I take Ava who I don’t want to get sick,   to hang out with the sickest kids in the city!  But thankfully we were in the isolation room so I kept that door closed.

They ordered a chest x-ray for her to see if anything was brewing in her chest – but thankfully her lungs are clear.  And her oxygen saturation levels are normal, so no pneumonia or anything at this point, which is fantastic.   And since she had just had an echo on Friday they knew she wasn’t in heart failure.   So after telling me that if any little thing changed with her or if I was concerned again to come right back, they let us go home.

But I have to admit that the cough does scare me.   Mostly because it takes so much out of her to cough and after a bad bout of coughing she typically breaks into a cold sweat.   So it’s stressing her out, and I just don’t want her stressed because that is definitely not good for her heart.   We want her to stay healthy so she will be in good shape for her heart catheterization which is only 2 weeks away!

So we pray.    And trust that God will be faithful yet again.  I love how verses come to mind in moments like this and this time it’s from Colossians… chapter 1…

1He is the image of the invisible God, the firstborn of all creation. 16 For by him all things were created, in heaven and on earth, visible and invisible, whether thrones ordominions or rulers or authorities—all things were created through him and for him. 17 Andhe is before all things, and in him all things hold together.

God holds all things together – isn’t that the coolest thing?  I love being reminded of that, and I love the image of the univerise  breaking apart if God withdrew His hand.     So this God who is so big and so able,  can certianly hold together my little baby’s heart.   And I can go to sleep tonight in peace trusting Him to do so.

Amen.