A tiny vacation

So I’m pleased to report that Ava still is doing amazing.  She is spending quite a time off her CPAP these days and she is happy and full of smiles.  It’s kinda strange in a way because her weight still seems to be creeping up, which would make us all expect that she is holding on to some extra fluid, but she’s not acting like she is fluid over-loaded.    So we’ll just take it as it is, and praise God and continue to wait for a previously loved heart to come our way.

And Jason and the kids had a wonderful time away at the cottage with my parents and my brother John and his family.  I talked to them everyday and although I was missing them like crazy, I was so happy to hear that they were having an amazing time.

kidscottage1

sarahfish

kids

And they were originally planning on coming home on Thursday, but as I was leaving Ronald MacDonald House Thursday morning I happened to stop and talk with one of the staff, and she informed me that the Toronto Health Unit had decided to keep the house closed another 5 days due to the Chicken-pox scandal that I had written about earlier.   I was kinda annoyed to hear this news because it means that Jason and the kids would be coming back to still nothing going on at the house…  no summer program or craft room and no home for dinners, nothing.  So after I told Jason the news, my parents graciously offered to let them stay at the cottage until Saturday…. which was great for Jay and the kids, but I was kinda sad because I was already missing them so much and now I wouldn’t see them for a few more days.

But than Jason called me right back with this bright idea of me hopping on a bus to Parry Sound as soon as I could  so I could join them at the cottage for two nights and then come back with them on Saturday.   What a great idea!  The nurses encouraged me to go, and so I got my act in gear, and  at 2:30 pm I was on a bus headed North.  Now I always hate leaving Ava, but feeling torn comes with the territory of having a child in the hospital as well as healthy children.  And to be honest, I feel much better about leaving her when she was feeling better rather than leaving her when she isn’t doing well.

So Thursday night I was reunited with my family, and on Friday I got to enjoy a full day of beauty that is the lakes and trees and rocks of Northern Ontario.   I think God’s timing is perfect.  It was just wonderful to get away from the city and relax and refresh and gain some perspective again on our situation and know that God has a plan and is keeping us in His hands.   I love that He knew I just needed to rest and spend time with my family and my parents, and God arranged it perfectly.

And so today we came back to Toronto.   The girls and I went to see Ava this afternoon and she was again, very happy and full of smiles.  Isn’t God good?   We really attribute her turn-around to prayer, and God’s goodness.   Just two weeks ago I was sure that we were losing her, and now she is feeling better than she has felt in ages, and it’s astounding and amazing all at the same time.

We feel so blessed as a family and I’m so thankful for even just a tiny vacation.

Amen!

Advertisements

Things don’t just happen…

It has been so crazy around here… crazy and busy and I’ve been so tired, so I apologize for not blogging.

Kinda crazy too because Ava hasn’t been doing that well.  Too be honest when I saw her yesterday afternoon I was pretty sure that we were losing the fight.   Ava’s heart-rate was up and she had a fever and was restless, and nothing seemed to be working to calm her down.   They had tried morphine and a sedative and Advil and Tylenol and she was still restless and irritable.    Her feet and hands were dusky and she is still so puffy, I know she is still extremely fluid over-loaded.   So yesterday afternoon was really hard, and very very emotional.

So when the PACT team came by, we discussed how to keep Ava more comfortable and they thought that maybe pain wasn’t Ava’s problem, but maybe she was feeling anxious, with breathing being so difficult and with her heart not working well.  So we decided to swap out morphine for some anti-anxiety meds.  We gave her a dose right away and it seemed to help and that was great.  She woke up a little later and even though was calm, you could tell that she was a little befuddled… the cocktail of drugs that she was on was a bit much I think.  And then I just start feeling bad for her.   She hasn’t really smiled in days and I know she’s not comfortable, but waiting for a heart is like having a carrot dangling in front of you…  you don’t want to give up the fight in case the heart is right around the corner.     But once again I was praying that if God was calling her home, that she would just go, that we wouldn’t have to take drastic measures like turning off her heart meds or take away her CPAP.    Jason and I both don’t feel right about doing that,  and really, I know that neither of those things can really keep her alive if it is her time to go, so I take comfort in that.

And then just before I left the hospital yesterday, when I was feeling so low…. the Cardiologist Fellow came in.     He is from Singapore and he is wonderful and kind and really knows his stuff, and he’s a believer to boot!!     He said that he thinks that Ava needs to lose about 400 grams of fluid and once he can get her back to real or ‘dry’ weight, she will feel so much better.  And then once again I feel kinda astounded by God.    Here all afternoon I feel like I need to prepare myself to let Ava go and the writing seems to be on the wall, and then a doctor comes in and says that he believes there is still hope, and what he is saying makes sense.   And then I realize that when I try to guess at what God is going to do I never seem to get it right.  I just need to have faith and wait.

And Ava had a good night last night, but this morning at 6:00 am she was awake and really restless and irritable, like she never really has been before.   Again they gave her every drug they could to relax her and finally she slept again.    And then later this morning when she woke up I gave her a little bit of milk to drink, like I always do, but when I was done she freaked out.  So I gave her a little more and she drank it like she had never seen fluid before.  It kinda dawned on me that maybe she was just incredibly thirsty.    Which would make sense… she has a set amount of fluid she is allowed to take in during a day, so when she started IV antibiotics last week, they took away fluid from her feeds so it wouldn’t be too much.  But  IV fluids tend to collect in wrong places, and that is probably how she got fluid over-loaded.   So now they are trying to dry her out, so they haven’t given her all her fluid back to her and so she probably is thirsty poor baby – thirsty like every other cardiac kid on the ward. 🙂       But hopefully in a couple of days she will have lost this extra fluid and we can increase her feeds and she will feel better.  That is the hope, we will see what happens.

I know I don’t have to ask you to continue to pray, I know everyone is praying.  God has been so good and so faithful, and I know that He is carrying our little Birdy under His wing and I know He cares for her so much.    And my friend Christa posted this poem in my comments, but in case you didn’t get to read it, I thought I’d put it here… it’s so perfect.

Things don’t just happen to us who love God
They’re planned by His own dear hand,
Then moulded and shaped and timed by His clock;
Things don’t just happen, they’re planned.

We who love Jesus are walking by faith,
Not seeing one step that’s ahead,
Not doubting one moment what our lot might be,
But looking to Jesus instead.

We praise our dear Saviour for loving us so,
For planning each care of our life,
Then giving us faith to trust Him for all–
The blessings, as well as the strife.

Things don’t just happen to one of His own,
To one that has taken His stand;
No matter the lot, the course, or the price,
Things don’t just happen, they’re planned.
(by Esther L Fields)

Amen.

We Believe

So this morning Ava got her picc line re-wired and now has a double lumen picc!   We are all quite pleased.    And I realized today that Ava is pretty smart.   This morning a member of the transport team came to get Ava to bring her to IGT – Image Guided Therapy – and Ava was not pleased about being taking somewhere.  She was upset, but it wasn’t just that, she was just acting in a way that made me sure that she knew that we were taking her somewhere and that uncomfortable things happen to her when we do that. 🙂    She didn’t want to calm down when we got there and because she just need a local anaesthetic for the picc swap,  we gave her some oral morphine just to make her comfortable and calm for the procedure, and it worked.  She soon became quite calm and sleepy.   They wheeled her away and I had to go wait in the waiting room, but our nurse that stayed with Ava said that she would open her eyes and give the doctors the stink eye once in a while during the procedure,  just to let them know she was on to them.  🙂

And then on the way back up to her room she was fine.  She was looking all around and I really do think that she knew that it was over and she was going back to her room, call me crazy but I know Ava and I think she knew what was going on.

And they said the procedure went smoothly.  Ok, so I was in the waiting room, waiting for Ava to be done when the Dr came in and asked me to come with him.  I got up and followed him and he shows me into an office and says “We can talk in here”….  and for a split second my heart stopped beating and I held my breath because in that moment I thought it might be bad news.   But before he could close the door behind us he said, “She’s fine!”  Oh phew!!!    I think he must have seen the look on my face,  so he explained that they don’t like to say anything in front of other parents, even good news.   I was just happy to hear that all went well.

So other than that it was an OK day.  The morphine made Ava sleepy so she slept till about 4:00 pm when we woke her up to weigh her.   She was alert so I fed her a little bit of pears and she had a few sips of milk.  I was laughing at her – in a good way of course – but she was quite fluid over-loaded today and looked rather puffy and cute – her eyes were just  little slits and her face was quite round, oh Ava.    They had held one of her diuretics yesterday as it was making her mineral levels wonky,  but thankfully with the double picc now, they can consider giving her lasix constantly, which will probably be a good thing and hopefully she can drop the extra fluid soon.

So all in all it was a good day.   And really,  the bigger hope here is that the old picc was perhaps harbouring infection that we could never really see – and with that gone maybe Ava won’t get any more fevers and then with the constant supply of lasix, she can become more stable and plateau in a good place while she continues to wait for a heart.

And I have to say that God is changing my heart in this wait.  For a while I was just thinking that God was going to take her, as a transplant just seemed so impossible.   But lately,  I really find my faith growing and as I told my dad the other day, I am started to believe, really truly that God can heal Ava and will bring her a heart.   It goes against my human reasoning,  and I still feel the need  to prepare for if she goes… but it’s just something that I can’t explain.    I started reading Beth Moore’s book ‘Believing God” and she wrote something simple and profound that really spoke to me…

‘The God we serve is able (Dan 3:17).  Everything is possible (Mark 9:23).  Nothing is impossible (Luke 1:37).  We can always hope and pray diligently for a miracle.  If, in God’s sovereignty, He chooses to accomplish His purposes another way, let it not be that we have not because we asked not (James 4:2) or that we have not because we believed not (Matt. 9:29). 

This is exactly what our Pastor Leo told us before Ava was born.  It’s OK to pray for a miracle…  we can because God can!  I just needed reminding.

So we are begging God to intervene with a miracle – a new heart – that would save Ava’s life and I know He can!   He can!

But if He chooses not too, it won’t be because we didn’t ask, or because we didn’t believe.

We believe.

Amen.

Encouraged

Well this morning started out well as I was happy to be back at the hospital with Ava and she was happy to see me and we had a really nice snuggle…

But then rounds came by.  And the doctors told me that in their view Ava is getting worse and they are pretty sure her terrible heart function is causing all of her problems.   And because of this they wanted to make sure that I talked again to the PACT team (palliative team) about making sure we had a Care Plan in place for Ava that would make sure that she was always comfortable and never in pain as she struggles to wait for a heart.

Now,  the funny thing is, I actually talk with the PACT team daily as they come and see how we are doing, so we are all good friends by now.    They know us and how we feel about Ava and her wait for a heart,  and they know we have never allowed Ava to be in pain or uncomfortable.   But they said that sometimes the Dr’s – in our case Cardiologists –  feel that something has to change in a situation like ours when a patient is deteriorating rapidly, when really nothing medically changes, we just continue on like we have been.   But to make everyone happy, the PACT team said they were going to write a little note for Ava’s binder saying that Jason and I are good advocates for Ava’s care and to administer morphine or a sedative whenever Ava requires it or we ask for it.

So I should be discouraged, except I’m not, I’m actually encouraged.   See, I know that God is the one who has a plan for Ava and He isn’t finished with her yet.   The woman who cleans our room everyday at the hospital is a believer and she has this incredible faith and reminds me daily not to give up hope, that God has a plan for Ava and she tells me all the time that God is going to heal Ava and bring her a heart.  Even though I sometimes think her faith is a bit extravagant :), I know her daily encouragement is a gift from God.

And the truth is we don’t know exactly in what way God is going to heal Ava.  Is He going to provide a new heart for her on earth?  Or take her home and give her a new heart there?   All I know is that I can fully trust Him, even with the difficult knowledge that His plan might be to take our baby away from us, which would be so painful.     But I just had the opportunity to pray for another mom who is waiting for a heart for her daughter, and being in a position that God can use me to pray for others encourages me again still.  Plus there is this verse…

Now to him who is able to do far more abundantly than all that we ask or think,
according to the power at work within us,
to him be glory in the church and in Christ Jesus throughout all generations,
forever and ever. Amen.
Ephesians 3:20-21 ESV

God can do more in this situation with Ava than I could ever imagine or think.  Praise God, how wonderful that He can encourage my heart even on a day like this.  He is good!

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

Birdy on a wire…

Last night Jason and I watched Nik Wallenda walk a tightrope over river gorge near the Grand Canyon on TV.    Talk about nerve-racking!    To be honest I was only half watching and part  way through when I wasn’t concentrating Jason yelled “He’s falling” and I whipped my head around to see the TV so fast I’m surprised I don’t have whip-lash.

Well thankfully he didn’t fall, Jason was just having some fun at my expense, but I found the whole thing way to tense.    And I think that’s mainly because I feel like Ava’s the one walking the tightrope right now…  complete with scary episodes where she almost loses her balance and falls off the wire.   Thankfully by the grace of God she didn’t die this past week and has steadied herself, but  it doesn’t mean the journey ahead is less precarious or that I’m not worried that she might fall off again.   What a crazy journey to be living.

But she was transferred back up to 4D today – the hospital’s Cardiac ward.   It really felt like coming home and everyone was happy to see us back.   And Ava must have been glad too because after a nap she finally smiled at me!!    Me, her mom, she smiled at me…. something she hasn’t done for days.   It was wonderful to see her happy and content and I know that she’s pleased to be out of the critical care ward.

And so  it was a good day today that followed a great day yesterday that I had with Jason and the kids.   Ava was so sleepy yesterday that we took advantage of her one-on-one nursing care in the CCU and took a bit of a break from the hospital.  We went as a family to church and joined our Harvest Oakville family for worship in the morning.   And wouldn’t you know it, but the sermon yesterday was “when Faith needs a boost” and it certainly boosted our faith… we were reminded to look up to Jesus,  as the alternative is looking inward and self-pity is definitely a faith buster. 🙂   We were also reminded that just because we don’t see God working doesn’t mean He isn’t working, and that the greatest work God is doing is the work that we can’t see.  Cool huh?

Jason and I left very encouraged in our faith and we were so thankful that God had led us to church that morning.

We also sang a song during worship by Matt Redman…  ‘Never once’.    It really resonated with us.  Love these lyrics;

Scars and struggles on the way
But with joy our hearts can say
Yes, our hearts can say

Never once did we ever walk alone 
Never once did You leave us on our own
You are faithful, God, You are faithful

Words that Jason and I can echo for sure.      So even though our little Birdy is on a wire, we know that God has her in His hands and we just have to keep looking up to Him and trusting Him completely.  Even when times are incredible tough and it hurts so much, we can attest to the fact that God has never once left us to walk this difficult journey alone.

This little turkey…

So this little turkey… one day she has me thinking that she is not long for this world, and the next day she is happy and has more smiles than I’ve seen in a long time…

IMG_0445

Her uncle John and aunt Erin came to see her and she couldn’t stop smiling… (thanks guys for taking these pics!)

IMG_0441

I can’t tell you how wonderful it makes me feel to see her looking so amazing and so happy to boot.

Partly I think she’s doing better because they are figuring out her fluid balance and they are giving the right amount of lasix as the right time.  With her heart functioning so poorly, it’s  just not able to move fluid properly, so she needs the help removing it.   It’s very clear that when Ava is fluid over-loaded she doesn’t feel good, but when she’s balanced she feels better!

She still is needing oxygen as you can see, and I wouldn’t say that she is getting ‘better’, but she is rallying and just to be able to keep her happy and stable would be a blessing.

Isn’t God good?   Each and every time when I feel like things just can’t go on,  God proves again that this Ava story is NOT done and He still has a plan for her.   Our job is to keep trusting and holding on through the ups and downs, and just wait and see what God is going to do.

Thank-you once again for all your prayers and support.   God knows that without it, we just couldn’t do this journey.

Oh my little turkey Ava, I love to see that smile!!!

Please come

Next Sunday – May 5th –  Lord willing – we are dedicating Ava at church and you are all invited!  I mean it!  Even if you don’t normally attend church, if you have been following our story,  you live in our area and are free next Sunday, we want you there to see Ava and share this time with us as we dedicate this little Birdy….

avadressed

When we dedicate a baby at our church it means that we are publicly acknowledging that our child is a gift from God, and we ask for help in our endeavour to raise that child according to God’s word – the Bible.    And because we have so much to be thankful for regarding Ava, Jason and I have been given an opportunity to say a few words about our journey and I know I’m going to cry buckets, and I would mean so much if you could join us.

Please see this link – Harvest Bible Chapel – for service times and information – and you can always email me at 6andahalfhearts@gmail.com for more information.  And you can definitely bring your kids as there are programs running for them during both services up to grade 5.  We will be sharing our story at both services on Sunday so you can choose either one.

We are so grateful to God for His goodness and since Ava doesn’t normally go to church because of risk of infection, it will be so nice to have everyone together.       If something unexpected comes up – like another hospitalization – we will have to change the date, but we will post any information regarding that here on our blog.

So don’t be shy, please please come, we want you there.

Admitted

Just wanted to do a quick post to let you know that Ava was admitted to hospital here in London once again last night.  We had a nice little visit with our friends in the ER Monday night as Ava seems to be struggling with her fluid balance and had started to cough more like she had caught another bug.  Our cardiologist saw her and at that point gave me the option of staying in case she got worse, but I opted for the taking her home and watching her like a hawk.  But then yesterday at dinner time I wasn’t happy about her work of breathing and rapid heart-rate.  Together they made her tremble and it was rather disconcerting.   My neighbour Sheila and Jason both agreed she didn’t look right – so after talking with Toronto again, well… here we are.

And it looks like we will be here another 24 hours at least until her nasal swab comes back and tells us what bug this is – probably the same one that Sarah had last week.  I always do try to teach my kids to share!!   But Ava dealing with a virus and a healthy child dealing with a virus are clearly two different ball games.

My sweet sick little Birdy, I feel so bad for her because everything seems to hurt her and she is so ultra-sensitive. I console myself by remembering she won’t remember any of this.

And once again, even in this little blip, there is a lot to be thankful for.   For starters, my friend Rachel who gave up two evenings to sit with Ava and I in the ER – I so so appreciated that.   And I’m thankful for the amazing dr’s and nurses who take Ava very seriously and provide her with such amazing care.   And I’m thankful that I can abandon Jason at dinner-time with 4 hungry children to feed two times in a row and it’s absolutely no problem.  And God is so good.   Sometimes this journey is over-whelming and I just want to sit and have a good cry because I don’t know what the future holds.  But then I remember that I don’t have to know – God has that part all figured out already.  I just have to trust him – every day – with everything –  and He gladly grants me His peace and grace in exchange for my fears.    And I’m accepting both grace and peace today.  Just like my favourite verse says…

Phil 4:6&7 Do not be anxious about anything, but in everything with prayer and supplication with thanksgiving let your requests be made known to God.  And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.

Even when your baby is sick and admitted.

Amen

A Canadian Blue Solution

Sorry I haven’t blogged in a while.  This weather has been so cold and snowy that I just have wanted to sit under an afghan and read novels (not that I have) but still, I  just haven’t felt the motivation.  But tonight as I’m up waiting to feed Ava I though I would jot a few things down.    And I’m happy to say, we are doing good.  It’s surprising what at first seems so daunting, can now seem so  ‘normal’ .  We’re getting into a good grove with Ava and although caring for her is  still intense and time-consuming, we are doing OK.  And she is such  a good baby.    She did have a tough go last weekend and the first of the week – she was so upset and refluxing all the time like crazy – but I finally figured out that her daily dose of baby aspirin was probably hurting her sensitive little tummy, so now she is getting the aspirin after her morning milk and she is doing so much better… praise God.

And talking of prayer, I know that God’s people have been praying because Ava has been nursing again!   In the past couple of days she’s nursed quite a few times a day, which is wonderful.   And she’ still only nursing about 5 minutes at a time, but I’m not concerned with amounts right now, it’s more about her being comfortable and enjoying sucking and orally feeding like I mentioned in my last post.   So thank-you for lifting us up before the Lord, He has heard your prayers!

And I don’t think that I’ve mentioned that April 25th is the date of Ava’s heart catheterization, where they will go into her heart to test the pressure to see if she is ready for her next surgery.  So please pray with us that all will go well and that she will in fact be ready!!

And I’ve also been meaning to show you a pic of our very own IV pole that Jason made us.  The first night we took Ava home we needed a pole to hang her gravity feeds on as we hadn’t gotten an actually IV pole yet.  So Jason ran to the garage and came up with this…

hockeyivpole

Yes, the hockey stick IV pole.  Such a Canadian blue solution.  Don’t you love how men solve problems?   And it’s been great and it was even strong enough for Ava’s feeding pump to be attached to it.    It’s awesome.   Actually last week we Last week we had a real IV pole delivered, but Jason told me if we used it that he wouldn’t talk to me… haha.  Seriously though, I’m too attached to my hockey sticks.

So I’m just thankful that we made it through another day and that Ava looks so amazing and is doing so well, even though she does seem to fighting off a mild cold.      Here is a pic from a few weeks ago sans ng tube – as I had accidentally pulled it out…  my sweet little Birdy.

Ava

And we are off to Toronto again on Tuesday for another appointment with the Single Ventricle  Team at Sick Kids and Ava will get another echo,  but this time I have no fear that they will be keeping us and I’m not packing a single thing, ha!

So thanks again for everyone’s support and prayers, we are truly thankful.