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.

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Where things are at

Monday Jason and I spent a long day in Toronto.  It was a very long and full day,  but thankfully there wasn’t much waiting time between appointments so the day itself seem to fly by…  except for the drive home.    We hit rain and traffic and together proved a very long and frustrating combination, but we made it home safely.

We left here at 6:15 am to make it to Sick Kids for our first appointment at 9:30 and actually made it there nice and early.   I think Remembrance Day day had something to do with that as there seemed to be hardly any traffic downtown.   All those bankers and Government offices taking the day off, lucky them.    But it was nice to have the streets clear for a change.

So just after we registered for our echocardiogram – our first appointment of the day – our contact there, Nathalie,   asked if I would mind having an MRI before the echocardiogram.   She had talked to me before about having one for research purposes, but the timing just hadn’t worked out.   So since there was an opening right then I said OK.

And it is a for a good cause.   They are doing research right now on baby’s with Congenital heart defects to see how these baby’s are managing their blood flow  in utero and the only way to really see that is with an MRI.    The information they will glean from it won’t help our baby specifically, but just knowing that the information might help other baby’s down the road makes it worth it.

I’ve never had an MRI before, but as I’m one tired momma I was just hoping it would be a place where I could have a nap.  Those of you who have had one just thought, “ha ha, yeah right”.   But I was hopeful and they did make me very comfortable on my side with pillows and foam until I felt quite tucked in.  But what I did not know that those crazy contraptions make the weirdest  loudest noises one has ever heard.   But I just relaxed, prayed that God would keep me still and let me sleep,  and truthfully I did drift in and out in spite of the noise, so I actually felt pretty rested when I was done.  I also felt rather tousled and sported a great bed-head for the rest of the day, but now I can say I’ve done my part for research.  And the Cardiologist who was over-seeing the MRI showed me some cool pics of the baby after, so that was a neat bonus.

Next it was the echocardiogram and that turned into a bit of an adventure too because Birdy is very comfortable in a position that is NOT helpful for getting clear pictures of her heart.  So our Cardiologist fellow (cardiologist in training) had to call in an experienced tech to help who then in turn just handed it over to Dr. Jaeggi our Cardiologist himself so he could try to get some clear pictures.

The baby’s heart hasn’t improved, but that was to be expected.  He doesn’t think her aortic arch is constricted, which is good, but they will get a better view in three weeks when she is born.  So thankfully the right side of her heart still looks good and she is still a good candidate for surgery afterwards.  Awesome.

So then we met a Dr and nurse practitioner from the newly formed ‘Single Ventricle’ team that will be caring for Birdy after she is born.  We are definitely in good hands!  But they did stress again just how serious of a heart condition she has, but I was comforted in knowing that they have no expectations and just will just track with her at her own pace, even when it comes to things like nursing.   But talking to them was a huge reality check – things are not going to be easy at all.    She is going to have a long recovery time and they basically told us we wouldn’t be home for Christmas.  I already knew that, but it’s not nice to hear it.   It all seems so daunting, but I’m so thankful for a God that keeps renewing my strength when my strength is gone.

And then it was over to the High Risk Pregnancy clinic to meet our OB and see what he had to say.  And the good news is that Birdy is now 6 lbs 7 ounces!  Woo hoo.    She is going to be a good size baby like her siblings, I wouldn’t be surprised if she was over 8 lbs even at two weeks early.  And our OB, Dr. Ryan is wonderful.  He is the man who did the intervention on Birdy’s heart back in August and is quite the miracle worker over at Mt. Sinai with unborn babies.   And since I know that when I’m induced, I’ll be seeing whatever OB is on call that day,  I mentioned to him that I might not see him again, but he said, “You’ll see me again”… and then proceeded to change our induction date to the 3rd instead of the 4th.    Jason and I think he did that so that he will be there for the birth, which would be wonderful.

So now we don’t go back to Toronto until December 2nd where we will stay the night before heading to the hospital in the morning… Lord willing.  We will call on the Sunday to make sure the induction is still a go, and if it is, that means it’s less than 3 weeks away… AUGGGG!!!

I still am having a hard time wrapping my heart around the fact that I have to leave my other kids.   But my brain (and other people)  assure that the kids will be fine.  They are resilient  they will be well cared for and loved,  and they can come and visit, and who knows, maybe even I can come home from time to time.    It’s just my heart that still cries whenever I think of leaving my precious baby’s.  Oh this is not going to be easy.

So please pray for us, we have so many hurdles to jump through, still so much to get prepared for in the next three weeks and pray that even through this time, we can still Glorify God who has a plan for us and knows exactly what He is doing.

So that is where things are at.

She’s growing!

Just a quick little update to say that Birdy is growing like she should and now weights over 4 lbs!   Praise the Lord!   Not that I was worried she wasn’t growing, because I’m certainly growing…. but I think the fact that she only has half of a working heart, plus the fact she has Turner’s combined, can make growth an issue.

But the ultra-sound that we had when we went to see the dr on Friday showed that she is very healthy otherwise and is in the 50th percentile for her size, and I’m so happy.

Just wanted everyone to know.

We love you our little Birdy!

A Due Date and a Pumpkin Latte

We have a due date!    I will be induced December 4 in Toronto at Mt. Sinai and I’m really hoping that will actually be the day because it was my grandma’s birthday.  It’s always kinda neat to have a little tie-in like that.  And when I got off the phone with our coordinator at Mt. Sinai last week after she gave me this date, I was initially very excited,  like I would have been if I had been given due dates for my other pregnancies (hate that going over-due stuff) but then it hit me…  December 4th is when reality is going to be faced, for better or for worse.  It’s rather daunting.

But the day our little girl will be born will also be the day I’ll finally get to  meet our little ‘Birdy’ and for that I am very very excited.    I feel I know her so much better than our other baby’s before they were born, big surprise right?  And she even has a name which the other kids can’t boast of.  They were lucky to be named in the delivery room.  I’m not quite ready to share her name with the whole world yet, there has to be SOME surprise to her birth, but for now we are calling her Birdy and I just feel it’s very fitting – especially considering how active she is.   Although last night after reading Sophia a book about a little penguin,  she was pretty sure we should start calling the baby “little penguin” and that’s what she called her all day today.   Oh well, sigh….

And again,  worry tends to creep its way in when I think about what things will look like when I’m away from my family. So whenever those thoughts and anxiety come, I’m just constantly giving it over to God… which sometimes I have to do 20 times a day, but I’m learning and God is being very gracious to me through all this.

A few posts back I posted a story about God’s faithfulness in the lives of a family who have a daughter with Turners and lost another daughter to a genetic syndrome, it was quite the story.  Well I emailed Sara, who is the mom and she replied and gave me this verse which she has posted up and I just love it.  It’s perfect for where we are at.

The Lord is the One who goes ahead of you; He will be with you. He will not fail you or forsake you. Do not fear or be dismayed. Deuteronomy 31:8

It just makes me weep (with joy) knowing that God is going ahead and preparing the way for us.  I’m sure our path won’t  be smooth, but He will know what we will be facing with every step of the way, even when we don’t.   How amazing and wonderful.

OK – so yes,  that an update on my other life.  Back to my ordinary life…  Jason brought these sweatshirts home from work the kids last week.

They were thrilled and we of course like to do our marketing bit for the company Jason works for… especially as he has a great job and a great boss.

And in my opinion the kids look so cute all dressed the same, I’m trying to figure out how I can do it more often.  So far nothing is coming to mind.   Cute even with the eye roll…

And then one night last week I got together with a bunch of my friends (who are also all my neighbours – how lucky can a girl get?) for an evening to hang out and enjoy each other’s company while eating yummy things.  My good friend Angie down the street made this… a delicious pumpkin latte..

Which provided me all the caffeine I needed and more to enjoy myself until 1:00 am…  way past my bedtime.    But even though I kinda paid for it by feeling rather tired for the next few days, it was worth it.   We laughed and we cried and after 5 hours of non-stop talking we decided we really should get together more often.    It’s so wonderful to have great friends that only live a few door down from you,  we are definitely blessed to live where we do.

So now this week is almost coming to a close and that means one more week closer to my due-date,  still five weeks and a bit.  And I go visit my OB in London tomorrow to see how little Birdy is doing and if she is growing… I’ll keep you posted!

Thankful

So rather than blogging, I’ve been spending my time wracking my brain trying to come up with a new blog name.   Just in case you hadn’t noticed, in about 7 weeks or so this blog name won’t be accurate (see previous posts)  as there should then be just the 7 of us.   But that name just doesn’t have the same ring to it,  plus it’s already taken.  So if anyone has a good blog name idea they would like to share with me, please do so and put me out of my lame-blog-name-ideas misery.

But back to this post now that I am actually writing…. we’ve been enjoying the fall here.   I of course love the cooler weather (keeps me from swelling) although when the forcast for this past Thanksgiving weekend showed very cold and rainy – I was worried about it being a little too cool, especially since we had been planning on spending the weekend at the unheated cottage.   But Jay and I always cook our goose by telling the kids days in advance that we are going, and even though we half-heartedly tried to talk them into an exciting weekend at home, it didn’t fly and  so we went.   Not to mention the rest of Jason’s family was going to be there and if we didn’t go we’d miss out on Thanksgiving dinner – and that certainly wasn’t going to happen.

So we went, and were chilly occasionally, but for the most part had a nice relaxing time.   And the turkey was amazing and the pumpkin pie was all that it should be so the cool weekend was completely worth it.  We even got some beach walks in and attempted a picture of all four kids together.  Since our expectations are always low we are never disappointed when everyone isn’t looking at the camera and smiling.  We take what we can get. 🙂

For Jason and the boys this was their second weekend away.   The weekend before they and a family friend Patrick headed up to a canoe/camping trip up North at a place Patrick has been going for over 20 years.  He took his boys when they were young and Jason used to go with them occasionally, and now it’s so cool that Jason and our boys are going.

I had no desire to go camping in my condition, but when I saw the pictures I was a bit jealous,  it was so beautiful up there…

And the boys absolutely loved every minute of it.    And I was so glad that they could spend some quality time with their dad before things get all crazy here and our family gets separated for a while when we’re at the hospital with new baby.

And how are we doing other wise?   Pretty good everything considering.

I’m still dealing with my own failings of not being able to see my own limitations and so I know I’m trying to do too much, and when I do I get tired and cranky.  But there really seems a lot to do!   Being pregnant with number five at my age is no joke in itself apparently.  But God is being faithful and He’s giving me grace to get through each day and even though the first week of December is coming fast, with His help I know I’ll be ready.

And this is the time of year to be thankful… and there is a lot to be thankful for.   I’m starting to realize that in tough times thankfulness and gratitude are great ways to keep one’s heart humble and joyful even when it’s tempting to focus on the problems and feel all discouraged and down.

I was encouraged this weekend when a friend who just went through a tough time had the same thoughts and shared them with me – that it’s so much better to focus on the support and comfort that God has provided during a rough time instead of just being focused on why God isn’t fixing everything for us.   And I think that’s the key for us too.

And there are so many things to be thankful for!  The list would go on and on – and actually I’ve just inspired myself to start a thankfulness list for when I get discouraged – nice!    I’ll definitely be putting on this list that I’m truly thankful for a God who never leaves us or forsakes us.  I’m thankful for so many amazing friends who have come along side me to do all sorts of things, like take care of my kids,  help me pitch my junk,  garden for me, provide emotional support and even shop with me!   And Jason and I are also blessed with four healthy kids and parents that love us and support us no matter what.

How can I not be thankful?

And focusing on God’s goodness towards us does feel much better than focusing on what is going wrong.

And so I can truly say today that even though I’m still sad and it’s not fun to be faced with a baby that’s going to be born  neeeding so much medical attention,  there is still joy and I’m very very thankful for all the good things in my life.

Perfect peace…

I have no idea where this week went, it’s flown by and been so busy!  But I’ve been meaning to do an update all week since I was back in Toronto on Monday.   But then I was battling a bug and Sophia got the stomach flu and I started to declutter my crawl-space (that horrid room) and I was helping Jay with some stuff, so now it’s Saturday and the update will finally be forth-coming.

So…  like I said I was back in Toronto on Monday, again.  Seeing all the dr’s once again.   It almost seems old hat, except this time  I left Jason behind because the appointments were going to be routine and my dad drove me.  And its kinda funny but I’ve never really entertained the notion of driving to the big city by myself.  I’m too pregnant, too distracted and I drive a big Suburban.  Enough said.    So my dad drove me and I had a great day with my dad, thanks dad!

So yet another echocardiogram for baby (I kept falling asleep during it – these things take so long!)  but even I could see from the screen that the baby’s left ventricle isn’t pumping anymore and it didn’t contain any blood.  The valve that was opened has narrowed again and so they are now calling her heart hypo-plastic.   Poor little baby heart.   So again no miracle,  at this point it’s about moving forward and accepting our new reality.

The hypo-plastic left heart meant we started to seriously talk about surgery options with our cardiologist.   And the most confusing thing is that there are two options for the surgery she will need right away, and if we want to, we can decide which surgery she will get!

Huh, come again?

How on earth would we be able to decide something as important as that?   But that can be addressed later, and in the meantime my dad and I  got a tour of the hospital.  Of course then I’m wishing that Jason had actually come and could see everything with me,  but he will just have to get the tour again next time.

We saw the different rooms the baby would be in during the different stages of her recovery, and what floor the operating room was on.    Natalie – our contact there – wanted to show us a baby recovering from cardiac surgery, and I remember waiting to find out if we could with that shivery anticipation of slight horror – like it would be one of those things you don’t want to see, but can’t look away.   Apparently parent’s find it easier seeing another baby in that condition before they see their own…. kinda ouchy but understandable.   But thankfully that little trauma was delayed as the baby’s were all occupied and I think that was God’s timing because it would be way better to have Jason there with me for emotional support.

So then dad and I went for a little walk over to the high-risk pregnancy clinic at Mt. Sinai hospital for more appointments.    And next on the list was meeting two dr’s from the neo-natal team that will whisk my baby away after she’s born to stabilize her.     She will need to be given progesterone immediately after birth to keep the ducts in her heart open so she won’t go into shock, but they were pretty sure I could give her a quick kiss before they take her and if she is stable I might even get a quick cuddle before they transport her over to Sick Kids, the children’s hospital across the street.   Small mercies right?

While I was talking to them it got emotional – I don’t think anyone wants their baby taken away at birth – and they then subtly asked me if I had been told what her chances were.    I’m no dummy and I understood right away what they meant – and thankfully I was able to tell them coherently that I knew that my daughter could die at birth or before they could stabilize her or really whenever.   And even though that thought breaks my heart it really is our reality.  And their relief was visible…. their job must be so tough in situations like this that I’m sure it’s help to ease the stress of their jobs knowing that a parent understands what they are up against.

And then I met with the Obstetrician (such a long day!) but now I have a due date week!   They are planning on inducing me between December 3rd and 6th, and that is coming very soon.  So that is why I’m trying like crazy to get things sorted and organized and prepared here,  that’s only 9 weeks away!

But the day did finally end and thankfully dad and I were able to sneak out of the city just on the cusp of rush hour and made it home in fairly decent time…. whew.   But then the next day was tough.   I’m finding that these appointments tend to throw me for a loop for a few days.  Having to face what is coming always puts me in a bit of a tail-spin and my thoughts get all tangled and messy and I cry a lot and I don’t understand and I feel like this is the last place on earth I want to be, basically I get kinda depressed.

But then God slowly and surely brings thing back into focus and I can find myself back into the present, where things are still OK and God is good.

Thursday morning this verse came to mind… Isaiah 26:3

You keep him in perfect peace
whose mind is stayed on you

And then I realized that I get so caught up in everything after the appointments that my mind is NOT stayed on Christ, it’s all over the map and worried and fearful, and no wonder there is no peace to be found.

Trusting God, believing His promises, knowing that He will work out everything out for His glory is where peace is… and it’s not the easiest thing to be done in the midst of turmoil, but very necessary for me if I’m going to stay sane through this whole waiting and wondering process.

I can’t wait until my baby gets here…

But in the meantime I’m so thankful that I”ve found my way back to perfect peace, for now.

Amen.

Staying in the present…

The present.  The present is actually a very nice place,  with a baby still snug and safe inside me, some beautiful sunny September days and family and friends to enjoy it all with.

Here is where I am trying to stay.

The future is rather scary and it actually makes me very upset when I think about it.   And really, it makes sense because God’s grace and peace aren’t in the future yet…   they are right here, right now guarding my heart and my mind.   And so here is where I will stay!  (Or at least try my best)

The warm weather that we had last week brought about another bloom on my hibiscus, such a nice September gift.   I love flowers…

The kids were still enjoying the pool last week, un-deterred by the cool water. (Jason and I actually went for a crazy quick dip last night even though it was only 72 degrees…. brrrrr…)

And we also had another butterfly hatch…

Now I’ll also be honest and confess that the present is also full of kids complaining they have to go to school and we’re already back into scrambling to get out the door in the morning so we don’t miss the bus – even though I was sure this year would be different.

It’s also got a house that needs to be de-cluttered and laundry that never seems to be caught up and an endless to-do list.

But these things are just a part of life and I like this life… and I kinda wish I could stay in this present forever!

It’s heavy…

It’s a little strange, I feel like I have two lives.  One life is  here with my four healthy normal children, taking pictures of their first day of school, playing keep-away with them in the pool and reading them bedtime stories.

And my other life is lived in hospitals, getting echocardiogram and ultra-sounds and talking with Dr’s  with lots of tears and concern surrounding our unborn baby.

Two lives, one blog,  so I apologize for the mish-mash of light stuff and heavy stuff to be found here, and just be prepared that this post is on the heavy side (and long side too).

So backing up to August 24th when they went in and opened up the baby’s aortic valve, they did an amniocentesis at the same time.  I’ve never had one before, and have never wanted one.  But I see now that the dr’s were definitely looking to see if there was a reason why this baby might have a heart condition.      Syndromes like DiGeorge syndrome or Down’s syndrome both could present with heart problems, although they were pretty confident my baby didn’t have Down’s or DiGeorge based on ultra-sound findings.

But as it turns out, my baby does have a syndrome,  Turner Syndrome.    My baby has a genetic problem.   Can you believe it?  I certainly had a hard time hearing that.   It was another huge shocker.  Never in a million years did I think that this could happen, but it did.   And her aortic stenosis can now be attributed to it.

So what is Turner syndrome?   Well Turner syndrome happens at the very beginning when cells start to divide and a piece of genetic information is dropped or garbled from the mix.  So where most women have two X chromosomes, our baby only has one X chromosome in some of her genes, and in the other genes,  one normal X chromosome and an isochromosome (a malformed X chromosome) in the others.

This loss of an X can lead to quite a few issues, but with a broad range of symptoms,  and they never really know how severe or mild  the disease will be until the baby is born and starts growing and these issues present themselves.  The most common characteristic of Turner’s is a lack of growth which results in short stature, as well as a lack of fertility.   It’s not inherited, any mother of any race or age can have a baby girl with Turner’s and there is a 1 out of 2500 chance that it will happen.  (There is a 1 out of 750 chance your child could have Down’s Syndrome.)

It’s one of those things that no parent ever wants to hear.  To find out your child will deal with something for the rest of their life that they will never be cured from is heart-breaking, even though the difficulties Turner’s presents typically can be over-come by modern medicine.  Still, it’s another challenge for our daughter to face coupled with her heart issue and we are very sad for her.

And speaking of the baby’s heart issues, we drove to Toronto again yesterday to have another echocardiogram done and meet with the cardiologist and see how baby’s heart was progressing.   I wasn’t planning on looking at the screen while they were doing the scan, but I did.   And when I saw that her left ventricle was still large, still not functioning well and that it wasn’t filled with oxygen rich red blood like it should be, but just a little blue blood trickling in, I started to cry.  I knew then that God had chosen not to heal her at this time and my heart started to really hurt.

And the cardiologist explained after the echo was done that the aortic valve has closed a little like they hoped it would, but still the pressure in her left ventricle is still so high and the function is still so low, it looks as though the left ventricle is burned out and it’s just a matter of time before the left side of her heart is lost…  and would go hypoplastic and she will end up with Hypoplastic Left Heart Syndrome.

But that’s speaking in medical terms.  We fully believe that there is still room for God to heal her, and we are still praying for that, but right now  it feels like God’s plans for our daughter aren’t lining up with my plans and I’m grieving.

I read recently that grief is an emotion designed by God to allow us to mourn things that we have to let go of.  Right now I’m grieving now the fact that if things don’t change, I won’t be nursing and cuddling and showing off a new baby, but watching her in a hospital room recovering from open heart surgery.   And what does that look like?   What does leaving my 4 young children for a long time and staying in a large city away from home for weeks and weeks look like?   Will Jason be able to join me?  The the kids cope OK?

I don’t know these things or have any answers and I don’t even know if before then or during that time God will call my daughter to come home back to Him.  But what I do know is that God has promised never to leave us or forsake us… and in the little things like providing baby sitters and parking spots and friends to cry with,  He has been there for us every step of this journey so far.   Here’s another verse I cling too…

It is the Lord who goes before you. He will be with you; he will not leave you or forsake you. Do not fear or be dismayed.  Deuteronomy 31:8

Do not fear, do not be dismayed…  but those are the two things that come so naturally to us aren’t they? We fear because we can’t see the future and we are dismayed because we are going places we never wanted to go.  But through all of this Jason and I are clinging to our faith in God, know that if God is telling us not to fear or be afraid it’s because He knows what He is doing and He has a plan and a purpose for our baby’s life and our live’s too.

A dear friend dropped by today knowing that I would be having a tough day (I was) and she brought me my 3 favourite things…  flowers, chocolate and a book (I’m so blessed!).   The book was Anne Voskamp’s book “One Thousand Gifts” and the first chapter is all about losing children believe it or not.  Anne lost a little sister growing up and her husband’s brother and wife lost two babies.   And in the first chapter Anne wrote…

There’s a reason I’m not writing the story and God is.  He knows how it all works out, where it all leads, what it all means.   I don’t.    

That spoke to me.  Of course we would change how things were going, if we could direct things differently we would.  But we aren’t in control, we can’t see the outcome,  and so we are choosing to trust the one who is… the one who formed us and knows us and has a plan for us.

He knows it’s heavy, but He is with us and will never forsake us.

Amen

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.

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!!!!