A cowgirl and a cupcake

Thank goodness last week’s festivities are over!   We had alot of fun as a neighborhood again this year, getting together to eat and carve our pumpkins the night before the big day.   We produced such works of art as this…

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and this, except it wasn’t so fuzzy in real life…

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And the next night we enjoyed having a cowgirl and a cupcake in the house….

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Although they did come back a little wet and bedraggled thanks to the rain.  However Sophia has never been one to put herself out for anything – even candy –  so she didn’t last that long and was very happy with her tiny haul.  Sarah got a bit more candy, and the boys (dressed up in Star wars characters) ended up getting a ton… but soon problems arose.   Sarah was sneaking candy.  And who can blame her?  I know it’s wrong and we didn’t like it,  but she was a lover of candy before her diabetes, so I would have rocks in my head if I believed that this issue was going to get better after her diagnosis.   And it was frustrating to have her sugar’s all over the place, even though we were trying hard to allow her treats within her target carb limits.

So on Saturday afternoon I traded the girls a new little stuffy for their candy… yahoo,  what a coup!  But there was still the boy’s candy and they were away visiting my parents for the weekend.  But I got them today with Lego sets that we had left over from last Christmas – and now I don’t have to worry about Sarah finding candy to sneak.  The boys got to keep a tiny bit that they promised to hide – they better!  But at least the bulk of the candy is gone and that makes me happy.    Super happy for us and for Sarah and trying to keep her healthy.

On the weekend, we got to enjoy a different kind of sweetness…. a precious new baby courtesy of my younger brother and his wife.

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We all enjoyed holding her and getting our ‘baby fix’.    I think sometimes people worry about me around babies, but the truth is that I don’t want other people’s baby’s, I want my own baby back!!   And I can hardly begrudge anyone a healthy baby, when I had four healthy babies before Ava.  So I just enjoy getting snuggles and then I enjoy giving baby’s back to their parents when they start to cry.  🙂

And speaking of our baby, Ava would have been 11 months today.   It’s hard to believe, and it’s kinda strange actually.  And I’m not sure how this is supposed to work, if she is forever going to stay a baby in my mind, or if I’m supposed to ‘allow’ her to grow up.  But whatever it is,  we miss her and wish that she was going to be with us to celebrate her birthday next month.

When I was in Toronto a few weeks ago they gave me Ava’s final bravery bead… a bereavement bead, a  little butterfly.

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I probably mentioned bravery beads way back, but at Sick Kids a child can collect ‘Bravery Beads‘ where they get a bead for every blood draw or test or poke or clinic visit.  It’s a neat program and although Ava never understood her beads, I did and it’s just such a testimony to what she went through in her short life.

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And I didn’t even do one for one on the beads… I would do one blood work bead for every 10 she got, but still, the meaning is quite clear.  Our strand was quite humble compared to other warriors at the hospital, but I know that I will treasure them forever.  And now the strand is complete and to be honest, for all their colour and cheerfulness, there is quite a bit of pain in that string.  And I praise God that Ava is free of all that pain and knows no more pokes or tests in her heavenly home.

Revelation 21:4  He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

Praise God, what a hope we have.

Amen

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Moving on up!

It was a big day yesterday,  Ava moved out of the Cardiac critical care unit and up to the fourth floor!  It feels so good as it’s a step in the right direction for Ava, going to the 4th floor means we are one step closer to going home.   Here she is, all bundled up like a pea in a pod, ready for her big move….

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The fourth floor is the cardiac floor, and so it’s all kids recovering from heart issues, or kids who are waiting for heart transplants.  It’s definitely more relaxed than the CCU and it’s so nice that we don’t have to call to the front desk and get permission to visit Ava like we had to do when she was in the CCU, now we can just waltz in and visit her anytime.

So in her new digs, there are four children and 2 nurses, it’s called a ‘step-down’ room.  And these nurses are still busy, but it’s a different busy than the CCU, it’s more feeding and changing diapers and monitoring vital signs busy as these kids are mostly awake and need attention like all kids too, so here it seems that they really appreciate when a parent is around and can help with their child.

And Ava is doing so well.  She still has her times where she breathes’ really fast, but her heart rate is good and for the most part her oxygen saturation levels are pretty good. They are still monitoring them and for her a good sat is around 80, but sometimes she is dropping into the 60’s or over-circulating and going into the high 90’s.    This is might be normal for her, but it would be better for her to stay around 80, so we’ll see what they say around that.  Last night when I was holding her she was dropping down, but when I put her back in her bed, she had a little cough and her sats went back up, silly monkey!   But it was nice that she didn’t have to go on oxygen, which is what they do for her when her sats get too low.

So today we will hopefully find out what her goals are,  and what we need to accomplish before we can take Ava home.  I’m starting to get excited about that, so please keep praying that we would keep moving forward.

We also have some more diabetes training for Sarah today – Sarah our five-year old who now checks her own blood sugar!  I’m not kidding!  She pokes her finger and knows how to use her monitor.  She is just something else.

The plan today was to also attend an information session to see about putting the kids in the school here at the Ronald MacDonald House next week, but both Erik and Sarah have sore throats this morning.  I hope it’s just because it’s insanely dry here, and not because they are getting sick.    God has been so good to us so far with our heath, and so I hope that we can avoid bad colds or even strep-throat as this could even jeopardize Ava,  so please pray for this as well.

Well it’s another day here and I gotta get going.   We had a fabulous visit by some of our friends and neighbors yesterday. Such a boost for our morale!   And it just makes me want to go home and see everyone again…  Lord willing it will be soon.  But for now, just grateful that Ava is moving up in the world!

What a roller coaster ride…

So life here really is like riding an emotional roller-coaster.  There can be such ups and downs and I won’t lie, it’s very tough and emotionally draining and that might be why I just ate a ton of chocolate … chocolate is very very very good.

And of course, the timing of these roller-coaster rides is always bang on,  it seems to get you when you are already tired and wound up.        See we were visiting Ava last night around 9:00 pm and happily chatting with her nurse, when all of a sudden the baby next to us went into cardiac arrest.   Our nurse ran to this baby’s side, the room filled up with people and I just started praying like crazy, but as those parents started to sob, we left and didn’t end up being able to go back and see Ava again for the night.

That was a horrible experience.   We were pretty shaken up.  Thankfully that baby was OK, didn’t die and after talking to her parents today they said that they think think she had a blood clot since she had just had surgery yesterday.   Thankfully she was able to be stabilized and has had a fairly calm day today.

But it meant we started today perhaps a little more keyed up then usual.

And then of course I posted about how they were going in to remove Ava’s stent that was keeping her chest open and hopefully close her chest up.

And they did close her chest.  For about 20 minutes.

Then they came and told us they had to open it again.   She wasn’t tolerating the close, her heart rate had climbed and wouldn’t come down so they had to open it again.

Now we are back to square one and it’s disappointing.

I guess I like to think of my baby as so strong, and she is.  But she is also very fragile.   And it’s hard to understand God’s timing today when the close seemed like an answer to prayer, but then that wasn’t what He had in mind after-all… and for a minute or so I wonder why He allows these things that seem so amazing and then aren’t.   But then even as I’m typing this is what came to mind… a verse from Isaiah…

Isaiah 55:8-9

8 For my thoughts are not your thoughts,
    neither are your ways my ways, declares the Lord.
For as the heavens are higher than the earth,
    so are my ways higher than your ways
    and my thoughts than your thoughts.

So a day like today doesn’t make any sense to me, but we can still trust God in this, we can!    I’m thinking in my own human terms,  but God has his own plan for Ava, we just don’t know what it is.

Here is another verse from Ephesians that’s my prayer…

Ephesians 3:20,21 

20 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, 21 to him be glory in the church and in Christ Jesus throughout all generations, forever and ever. Amen.

To God be the glory, a baby’s chest closed today or not.

Amen.

Another machine…

So as of last night, one more machine was added to the already crowded area around Ava’s bed…

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An EEG machine. Yesterday she was getting episodes of high blood pressure combined with her heart beating faster which made them wonder if she was having seizures… not huge seizures, but still, never something a parent wants to hear! So they hooked her up to this EEG machine to be monitored for 24 hours.

And so far so good, I was there just now when the dr’s did their rounds and they haven’t seen any sign of seizure activity in the past 12 hours that it’s been hooked up, praise God. And because of this monitoring, she is now off the muscle relaxants which means that she’s moving a bit and twitching today. She is still getting alot of morphine, but at one point she did get quite agitated so they gave her a sedative. But it is still nice to see her move a little instead of her lying there so incredibly still all the time.

And I think today they are going to give her a tiny bit of food – colostrum that I’ve pumped for her – just to get her started, not enough for nutrition. Of course this will all come from a feeding tube, but at least the food is coming from me which make me feel like I at least have a small part in caring for her, it really is so strange having a new-born daughter but not being able to do anything but stand by her bed and talk to her and touch her hand and her head – except now I can’t even touch her head!

Anyway, we are still thankful that she is here. Thankful for all the small mercies that God is providing. And even though I miss my kids like crazy and still find it hard to be in this situation, we are getting through with God’s help, minute by minute, hour by hour.

And soon that darn EEG machine will be out of here so I can at least touch her head again!

Walking through the valley…

Psalm 23 came to mind this morning as I was holding Ava before surgery…  I really feel like today we are walking through the valley where death is lurking in the shadows, but praise the Lord that His light is also shining there as well and He is comforting us. 

It was terribly difficult holding her this morning and the sending her off,  but she is in God’s hands, and like Isaiah 40 says…

He will tend his flock like a shepherd;
    he will gather the lambs in his arms;
he will carry them in his bosom,

That’s where she is as she is going through this valley, gathered safely in God’s arms, and that knowledge comforts us, but this is also probably the most difficult day of our entire lives. 

OK – but here is a cool thing, her surgeon is also a concert pianist.   Somehow that is incredibly comforting.  This man’s brain is obviously in a whole different realm and I thank God for a surgeon who is that incredibly talented.

So even though it’s a long and risky surgery on a very sick baby, our trust is in God today and we are relying on His strength.

Thank you everyone for your prayers and encouragement and as I hear any news today I promise I will keep you updated.

God bless our little Ava and keep her!

 

 

 

 

She’s here!

Ava Samantha Grace Colley arrived at 5:46am today.  She weighs 8 lbs 1 oz.

Our last update at 6:30am was that she was with the heart team.  Please continue to pray for this sweet little girl and our dear friends Lisa and Jason.  I will update the blog as information comes in.

We know that our Heavenly Father has enclosed Ava behind and before, and laid His hand on her. (Psalm 139:5)  The Lord’s loving kindnesses never cease and His compassions never fail – We trust and hope in you God!

-Christa

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.

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.

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.

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