What a gift…

Well Christmas came a little early for our family today.   It all started when Jason and I were sitting in church this morning.    The sermon had ended and we were about to sing the final song when  Jason reminded me that last year on this Sunday we had gone up to the front after church and had been prayed for by our Pastor and Elder team as well as many friends before we left to go to Toronto the following day.   Oh wow… remembering that prayer time and what we had prayed for made me cry – as even then we were still hoping that God would reach down and heal Ava and spare her life.   So it’s a year later and we know now that healing Ava was not in God’s plan, and it’s sad because we miss her so much… and it’s hard not to think about what might have been.

So I was still a little sad after the service when I remembered that a dear friend had asked us to meet her between the services.  When Jason and I found  her, she led us around the corner to where a group of people were waiting – which was all very surprising – and low and behold they presented our family with the most amazing gift ever…  my entire blog posts of Ava’s life from start to finish put in photo books.   For real… every single blog entry and picture.  What an incredible gift and such a wonderful keepsake.

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Then the tears really came, but we all marvelled at God’s timing.  Just that this book had been in the works for so long, and they had hoped to give it to us before this week, but God knew that today was the day that I needed it most – just to show me once again that He is always faithful and cares about us so much.

And so we wanted to say a HUGE thank-you to Nancy who did all the work – and I’m sure it took weeks and weeks or even months of hard work to put it all together – we are eternally grateful.  And to all of our Harvest Family who made it possible, this gift means more to us that you’ll ever know.

And not only did Jason and I receive a set of photo books – Volume 1& 2 – but there was a set for each of our children – their very own keepsakes forever.   When we got home we were all sitting in our family room looking at our books and my heart was just over-come that we can go and read about Ava and look at her pictures whenever we want and that my kids will have these books to remember their sister by as she gets older.

Wasn’t that a marvelous way to start December?   The month where we start to look forward to Christmas  – the day we celebrate the birth of Christ… who came to give us the best gift we could ever receive… eternal life.

We are so blessed.   God is truly the giver of good gifts.

Amen.

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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.

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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!

My theory

These past few days have been crazy again!   And it was good to be home for a bit, but I won’t lie, being home is also stressful.  Stressful in the way that when I’m there I just want to stay, but then I’m torn because I miss Ava.    And Erik was started to say how he just wanted to stay home and was starting to say it a lot, and so yesterday Jason and I decided since home is just not our reality right now, it would be just best to head back to Toronto.    We did leave rather late last night, but usually when you leave late at night there isn’t any traffic so it works in your favour.  But not last night!  We hit construction around 11:30 pm on the 401, so had to take a detour, just to hit downtown Toronto at 12:30 am.   And it seriously could have been 12:30 pm, it was that busy.  We weren’t sure if a show or a game had just gotten out before we arrived, but there were people and cars everywhere which definitely slowed us down.  We finally got back to the Ronald MacDonald House around 1:00 am… fun.

This morning I was so tired I called the hospital at 8:00 am to say that I would be shortly and to check on Ava, and was reassured that Ava was fine.   But then around 9:30 am I received a phone call from Ava’s nurse to say that Ava’s heart rate was up, and with that her temp was coming up and she spiked a fever of 39 degrees and I should come in.   Oh Ava.

And to make matters worse, when I got to the hospital,  I found that they decided that Ava needed to be watched more, so they moved her out of her private room and into a true “step-down” room where there are 4 children and two nurses who never leave the room.    This was upsetting because if we aren’t in our own room our kids can’t come and visit Ava, and if Ava can’t wait for a heart, this might be all the time we have with her, and it would be very hard if we couldn’t all be together.

I called Jason and asked him and the kids to pray for Ava, and to pray that we would get moved back to our own room…  and not 10 minutes later we got the news that they did decide that it would be best for us to be back in our room, praise God!    We were going to have to wait since they had moved someone else into there,  but they would be out later in the day and then we could move back.    It was so cool that God answered the kids prayers and they were pretty pumped about it.  William thought it would be cool if everything he prayed for got a ‘yes’ answer so quickly…  which made me really glad that God has a sovereign will. 🙂

So the end the day saw Ava back in her own room.  The poor girl slept most of the day today, she clearly wasn’t feeling that good, and because of the fever they took more blood cultures from her… this probably makes 100 blood tests in the past weeks.  They just can’t find any infection.   We did have that one positive culture the other day, but it may have been a one-off because nothing else has ever been found.   She seems to be showing signs of infection, but I’m starting to have my own theory.  I’m wondering if Ava is in some kind of pain, which causes her heart-rate to go up, and because of her heart-failure, the increased heart rate actually causes her temperature to rise.  This would be opposite to the premise that usually applies, that an increased heart-rate is caused by a fever.

Who knows, I’m certainly no doctor, but when I called tonight at 9:00 pm to see how Ava was, her heart rate was back up into the 170’s, so I asked the nurse to give her some morphine.  I called an hour later and her heart rate was back down to 140.  So maybe Ava is in pain.    I would like to try to keep her pain free for a day or two to see if we can keep her heart rate down, and just maybe, that will keep the fevers at bay.

If I’m wrong, I would just pray that some source of infection would be found in our poor little Birdy.  She’s been poked so many times that she’s not going to have any blood left and like I said before they just can’t find any infection that would explain her fevers.

But whatever happens, I’m so grateful that our family is back together, and so thankfully that God answers prayers!

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!!

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!!

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

You are loved

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By Christa

Philippians 4:6-7 do not be anxious about anything, but in everything by 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

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When you can’t sleep, blog…

It’s true, I can’t sleep.  It’s 4:45 am and since I was just tossing and turning (which in itself is a feat when you are 9 months pregnant) I decided it was better to not fight it and just get up and do something productive, like blog… very productive.

So we kinda thought we may have been on our way to Toronto yesterday to get induced to have little Birdy early today,  but when I called yesterday, Mt. Sinai had room for me, but Sick Kids across the street didn’t have a bed for Birdy.   Which is kinda important.  So we were granted a reprieve, and were told to call this morning after 8:00 am to see if a bed had opened.  If it has, we can finish packing and make our way down to TO, if not, we wait again.

It’s hard to wait, but yesterday after church we were prayed for, and I mean, really prayed for.  Our elders and pastors gathered, along with about 40 friends and supporters and I think the heavens trembled.  It was so powerfully amazing, one of our elders prayed and 3 of our pastors and I just wish I could remember everything that they was prayed for.    They prayed for Ava’s healing,  that surgery would go well, that Jason and I could be a testimony to God’s faithfulness, for our relationship, for our other children.   Wow, all I can say, is that if you are going through a trial and belong to a church, please please consider being prayed for like that.    And the strength and peace and that incredible spirit of power that can only come from God was so real and descended upon us… I don’t think I was the only one who was moved.

And we are going forward with all confidence now, knowing that God has a plan for us and for Birdy and we can rest in that and surrender to His will.    And as I said to Jason last night, I know God can heal her and bring her home to us, but on the other hand, I know that if He decides instead to take her home to be with Him, she will be completely and utterly healed, and how incredibly amazing that would be for her.    So incredibly hard for us, but God would help us through,  because God is good.

And man, is he ever carrying us!    I know that any strength that I have is from Him… all the strength that I have is from Him alone.  Praise God!

So yes, I am prepared to wait if that means waiting for God’s perfect timing.  In my own little world, things would happen when I want them to happen, but it’s one more thing that I have zero control over, so I need to just rest in the fact that it will all happen when it happens and try to enjoy just being here for as long as I can.

And with our four very energetic children, it’s not hard.   And because I love the Christmas season so much,  we’ve done so much Christmas stuff together already like making our traditional Christmas cookies together, and decorating the house, and going out and cutting down a Christmas tree, and listening to Christmas music and even attending a Christmas party in our neighbourhood that they held early for us,  that I feel my poor kids probably feel like Christmas should be here any day, but they have weeks still to go.  Which I think is probably good because the excitement of Christmas coming will get them through these first few weeks of us being away.  And then I’m really hoping that maybe they can all join me in Toronto at the Ronald MacDonald house for their Christmas vacation, or at least some of it and then December will be over and if I’m still away, we will worry about January later. 🙂

I’ve been so terrible at taking pictures the past few months, the distracted mother that I am.  But I did bring the camera to our Christmas tree hunting expedition, which we had never done together as a family, but proved to be quite a bit of fun.   Don’t ask me why we are all bundled and William is only wearing a sweatshirt – I guess more proof that I’m distracted, but as that kid moves 100 miles per hour is never cold, I guess it wasn’t so bad.  And he took very good care of little sister that day…

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Erik enjoying some hot chocolate and marshmallow roasting afterwards…

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Sarah, oh my Sarah, she is so close to my heart right now…

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My precious family, my gifts from God.   And as we go forward today and see what God has in store for us, I am so glad that whatever happens we have people who love us and a God that cares for us, and we are truly and utterly blessed.  Even when I can’t sleep.

Amen.

First Day of School…

So it’s come and gone, the first day of school.  Two weeks ago I was dreading the kids going back, I was enjoying the freedom of having them home and not having to go anywhere or do anything.   But then in the past week I started to look forward to routine again, and as it always seems to happen I think the kids were ready to get back into the swing of things again too.

Here they are, first day of school, all ready and eager and anxious…

I could probably say that William was eager and Erik was anxious and Sarah probably a bit of both.

But I was very pleased with their teachers for the year… my strategy is to start praying in June that my kids will get the teacher that they need and every year God has blessed us with great teachers so I’m so thankful to Him, it takes a huge load of stress off.

Erik is always my most nervous, but other than some hastily wiping away of a few tears he got in line for his new class and at the end of the day was quite cheerful,  he liked his teacher and he’s not in a portable anymore!

William said his teacher was really nice and fun, probably the best praise you can get from a 7 year old boy.  And Sarah had a good day back with her teachers from last year whom she adores.

Sophia was hilarious, after we were leaving the school and getting back into the vehicle, she asked if we were leaving the kids  there,  and when we said yes, she said, “Hurrah!”  Little turkey.

Back into routine, here we come!

Alot to be thankful for…

Wow – so if you have read the previous post (which I recommend) you will see that my dear friend Christa has posted our most recent news – that our unborn baby has a serious heart condition called critical aortic stenosis. 

What a shock is just putting it lightly.

After 4 healthy babies to find out news like this was the last thing we expected.   I expected to have the same kind of pregnancy as always, straight-forward and uncomplicated.  But just like getting pregnant with this little one in the first place, God clearly has other plans for us.  And even though this road ahead seems rocky at best,  God has been our strength through this time, and to show you just how faithful He has been, I think I will show you a time-line of the events that transpired since we found out our news Tuesday morning.

Tues, Aug 14 – After making our way home from the hospital and being prayed for by a wonderful friend who is also a pastor at our church, we made our way back up to the cottage, bewildered and numb.  My mom had been staying with the kids while we were away and although it was nice to be reunited with our family, we knew we had some big decisions to make.   We called our contact from the cardiologist we had just seen to tell her we wanted to go talk with the cardiologist at Sick Kids hospital in Toronto to find out more about the procedure that could be done on the baby now.

Aug 15 – 9:00 am We receive a call telling us that the Cardiologist in Toronto – Dr. Jaeggi –  was very interested in seeing us, as he thought he could do something for our baby, and could we possibly come in that afternoon or the next morning to meet with him.  As we had to make arrangements we opted for the next morning and started making arrangements to leave that night.

Aug 16 – 8:00 am, we were waiting in Sick Kids hospital in Toronto for an echo-cardiogram
9:30 – Met with Dr. Jaeggi after the scan who is the head of the fetal cardiac program.  He explained the procedure, how they could go in now and do a balloon dilation on our baby’s aortic valve.  This would in theory open up that valve, which could then save her left ventricle, which was already showing signs of damage from trying to pump blood through a closed valve.   If her heart continued to be damaged, she would end up with Hypoplastic left heart syndrome, which means she would be born with a non-functioning left side of her heart at birth – obviously NOT good.

10:00 am- With God’s peace flowing through us, we told him that we wanted to go ahead with it.  It was the baby’s best chance at saving her heart,  and even though the procedure comes with a high risk to her, we felt that if it were her time to go, that was in God’s hands not ours.  He was surprised that we had already made our decision,  and told us that the next step would be to go over to Mount Sinai hospital to go see the OB that was part of the procedure team.

10:30 am – We started waiting for the OB.   We waited and waited and waited…

12:15 pm –  Finally saw his nurse!  She wanted to do an ultra-sound to measure the baby’s weight to see how much anaesthetic she would need for the procedure, she told us she thought the procedure would be today – we were surprised, but still not really thinking it would happen that quickly as we had been told it might happen Friday or Saturday.   She explained that the  biggest concern was that the baby had to be in the exact right position for the procedure – and this was as the baby was doing flips and somersaults while she was trying to get her measurements.   And she also said they sometimes they had to wait hours for the baby to co-operate.  We started praying then that God would put his hands on this busy baby and position her correctly when the time came.   I had to stop eating and drinking and she told us we would be waiting again.

12:30 – 4:30 – Waited and waited and waited some more… we were very bored and very keyed up, not a good combination. 🙂

4:30 pm – Finally got called to see the OB!  Dr. Ryan who is the head of the fetal medicine unit at Mount Sinai – started the ultra-sound on me, right away said she was in the right position, and we should go ahead with the procedure now!   Praise the Lord!!!!   We sent out the word to pray that she would stay correctly positioned.

4:45 pm – People went into action like you have never seen, Jason went down and got me admitted, the anesthesiologist was called, the cardiologists from Sick Kids that help with the procedure were called over, nurses prepped, I changed into a hospital gown praying and praying that the baby wouldn’t move.

5:00 pm –   Dr. Ryan checked the baby again, was worried she was going to make a fool of him as she had moved, but we kept praying and trusting God and when I got on the bed in the procedure room and they checked me again, she was in a great spot and still asleep, or at least not doing flips… my IV went in and a sedative given, they prepped and talked and made final adjustments to her position by externally manipulating her, something they could easily do since my previous 4 children had made things nice and roomy. 🙂   God is good, He held her there, what an incredible answer to prayer.

5:24 – Jason left the room and they started – they punctured my belly with a needle and gave the baby her anaesthetic and pain killers and then started the procedure, going through my belly again with a needle that had a wire and balloon inside…. putting the wire into her aortic valve, inflating the balloon and drawing it back through so that her valve would open.

5:33 pm –  The procedure was done!  9 minutes!  Incredible, absolutely amazing!  The cardiologist did a scan and could see that the valve had indeed opened, God is so good!

10:30 pm – Jason and I were walking back to the hotel room, praising God and rejoicing that it had been done already, what incredible timing!!!   I had been given something so that I wouldn’t go into labour, but I had God’s perfect peace that the baby would be OK.

4:30 am – Woke up in the middle of the night and felt the baby moving again!  She had come out of her anaesthetic, how amazing and wonderful, she was still alive, praise God!

Friday, Aug 17 – 9:30 am – We met with another OB at Mt. Sinai for another ultra-sound and everything looked great.  The baby seemed fine, blood flow to her brain was normal, and best of all that valve was open and they could see blood flowing through it – something they hadn’t been able to see before.  Now we just had to start waiting to see if that left ventricle will heal and shrink like they hope it will.

11:15 am – We were on our way back home!  With such a sense of joy and peace that God had been so gracious to us,  had wrapped His loving arms around us and orchestrated everything so perfectly that even the OB that morning had said it had all been surprising that everything had come together so well.  Dr. Jaeggi was supposed to be on leave, but had come in that day for us.  Dr. Ryan did this after his shift was over and the nurses even stayed late for us.  God brought them all together for His plan and purpose and no matter what happens from here on in, I will never forget that incredible display of God’s mercy towards this baby and us.  

So now we are back up at the cottage, but this time we are able to relax and know that whatever comes next we have so much to be thankful for.   We will be going up to Toronto again on Friday, so please keep us in your prayers as we hope to see some progress with that ventricle showing that healing has begun.

We want to especially thank our friends and family for their support this past week through emails and texts, thank-you, your encouragement was wonderful…
Thanks to my mom for staying with the kid while we were in TO…
Thanks to Jason’s parents – his dad for making hotel arrangements for us and paying for them..
Thanks to our church family for praying without ceasing for us…
Thanks to our friends who stepped in to help my mom with the kids at the cottage…
And the dr’s and staff at both Sick Kids and Mount Sinai hospitals, who although they didn’t even know us, sprang into action to do what they could for this little unborn baby girl.

All we can say now is that GOD IS GOOD and even though our journey is just starting we know we can trust in Him completely!!!!