Happy New Year!

Welcome 2013!  And may you be the year that has no crazy surprises… I think we had enough of those last year, thank-you very much.  And although I know you still might not be an easy year, we are learning to take life one day at a time, or even hours or minutes at a time and we know that by God’s grace alone we will get through anything that you bring to us this year.

But we’ve had a great start so far!   Ava went off CPAP yesterday morning at 7:00 am and hasn’t been on since and her breathing is good, but fast, but I think that’s normal for her.  The nurses have a word for it, ‘tachypneic’ which took me a while to figure out, but now I know it, along with a million other medical terms that last year at this time I would never have dreamed I would know.   🙂

And since she is no longer on CPAP,  she is ready to move up to the fourth floor at Sick Kids!    They are pretty sure they will move her tomorrow, so today was her last full day in the CCU, and it was a good day.  I helped give her a bath this morning, dressed her in the sleeper Grandma gave her for Christmas and had a nice long cuddle with her and enjoyed our last full day of one-on-one care which is wonderful but which we just don’t need any more

Then this afternoon her other chest drain tube came out and boy,  it makes it so much easier to hold her when she doesn’t have so many things attached to her!   And she’s still doing great on the breast-milk and I even like to think that her little cheeks have filled out a little more in the past few days she’s been on it.

So yes,  a good start to 2013.    And I wish all of you a wonderful New Year as well.  We are so thankful for all your love and support.    Your encouragement to us is worth far more than you know!

Happy New Year!

I held her!

Oh, what a wonderful moment!   I got to hold my baby yesterday, after 2 weeks and 6 days, I actually got to hold my sweet Ava.    And even though she’s not used to being held, she didn’t mind, snuggled right down and went right to sleep.

download (1)

And even though it might look like I’m nursing her, I’m not…  to bad really.  The little monkey does have chylothorax and so is on special formula which she is getting right now through her NG feeding tube.  I wish this wasn’t the case, but with everything else going on, I don’t have the emotional energy to worry about.  Small blessings I guess! 🙂

But holding her was so wonderful,  even though we still had to juggle cords and tubes.   But it’s possible to hold her now because she’s off the ventilator!    They removed Ava’s ventilator Christmas Day and so we got to see her face with just her feeding tube in and the kids came and she was awake and it was nice, we were actually all together on Christmas Day – even if it was just for ten minutes.

download

Terrible pictures I know…  we forgot our good camera and the kids were crazy, but it was nice we got a pic of them together for Christmas.

So now moving forward, Ava is off the ventilator but still has to spend quite a bit of time on CPAP, which stands for Continuous Positive Airway pressure, which helps keep everything in her lungs open.  So although it’s another tube, it’s removable and she’s spending time off it each day.  They also removed a line that was in her neck and she’s losing one of her drain tubes today.  It’s so exciting to see these things being removed, and seeing her get back to looking more like a normal baby.

And on the Sarah end of things, we are doing well.  She is taking her insulin like a champ and we will spend more time tomorrow at the diabetes clinic for more training.  Now that we’ve gotten over the first hump, it’s time to learn more about it.

So that’s where we are at.    And we are actually feeling calm these days which is a nice feeling.  The other night Jason and I were really stressed, but then realized that we hadn’t spent any time together,  (one of us is usually here at the hospital while the other is taking care of the kids), and so much has been going on with Sarah’s diagnosis and wanting to be with Ava and then adding in Christmas – so our stress levels were super high.  But we know now that we need to take time each day to talk with each other and pray together and sleep is always good too.

It’s still a day-by-day journey here, but praise to God, we are getting through by His mercy and grace.  And every day is one day closer to going home!!  I can’t wait!

Her chest is closed!

We are very pleased to report that they closed Ava’s chest today just before noon and she seems to be doing really well.  She’s not out of the woods yet – between 12 and 24 hours things can get dicey – but we will just continue to pray pray pray!!

image

Here she is looking a little more normal again which is such a relief!   And today has been a much better day over-all,  praise God.

Oh my little Ava – please Lord – please keep her steady over-night and let her chest stay closed!!

His eye is on the sparrow…

Today is another waiting day.  We really thought that today would be the day they would try to close Ava’s chest… but it didn’t happen.   Alot of that had to do with her surgeon,  he had 2 surgeries today and didn’t want to squeeze in closing Ava’s chest, just in case he wouldn’t be able to intervene if necessary,  so it’s planned for tomorrow… so please pray!

And unfortunately it was a bit of a distressing day, mostly because Ava seemed really irritable  and I couldn’t even touch her without startling her and then she would look like she wanted to cry… and of course she can’t really cry because of her ventilator and then that distresses me.   Oh dear.

To make matters worse, last night they started to see some evidence of chylothorax… which basically means that during surgery Ava’s thorax may have been nicked, and now chyle – or fat is escaping into her chest cavity.  Sigh.  Right now just a tiny bit is chyle is leaking in, so they haven’t done anything about it yet.  But if it starts to pool, they will pull her off of the breast milk they are feeding her through her nasal gastric feeding tube, and have to start giving her a fat-free formula for 6-8 weeks.  It’s upsetting, but I just have to trust that God will intervene, heal her quick, or just give me peace about this situation.  And I don’t think I had mentioned that they have been feeding her my expressed milk through her NG tube, and that is very good thing, and I love feeling like I’m doing at least something to help her.   And eventually I would love to nurse her, but after meeting with the lactation consultant and a nurse practitioner today, I’m realizing that even though it is possible, it just might not happen.  Again, something I just have to let go and leave in God’s hands.

Oh – and to just make matters a bit more complicated for us, our little Sarah (who is 5) has been drinking gallons and gallons of water in the past few weeks and it had made us a bit concerned – especially  as the first thing that comes to mind is diabetes… AUGG!!!   So as soon as we get her health card here, we will take her to a walk-in-clinic.   We need to rule it out for peace of mind.  We also need to lay it at the foot of the cross and just know that God won’t give us more than we can handle right now… please Lord, I don’t think I could handle this as well as Ava!   So please pray for Sarah, that she won’t have diabetes, and that this is nothing more than a crazy water-loving phase.

But there is good news.  Jason and I have been reading John Piper’s Advent devotional, and today it was about missions. But I found it very applicable to us.  Here’s an excerpt…

In the mid-16th century Francis Xavier (1506–1552), a Catholic missionary, wrote to Father Perez of Malacca (today part of Indonesia) about the perils of his mission to China. He said,

The danger of all dangers would be to lose trust and
confidence in the mercy of God… To distrust him would
be a far more terrible thing than any physical evil which
all the enemies of God put together could inflict on us, for
without God’s permission neither the devils nor their
human ministers could hinder us in the slightest degree

And it’s true, we can’t lose our trust and confidence in God.  Not through the terrible things, nor the waiting, nor the setbacks.  And I’m so thankful to my friend Christa who made this reminder for me which now hangs over Birdy’s bed…

birdy picture

And I love remembering that His eye is on our little Birdy, and He loves her more than me, and I don’t have to fear for her or be distressed.   Thank you Christa, for the reminder.  And here’s the verse where that is taken from… Matthew 10:29-30…

 29 Are not two sparrows sold for a penny?Yet not one of them will fall to the ground outside your Father’s care. 30 And even the very hairs of your head are all numbered. 31 So don’t be afraid; you are worth more than many sparrows.

This is not an easy road and believe me, I’m not stoic.  I’ve shed gallons of tears, but I kept being led back to the grace and mercy of God in our lives, and I’m so thankful that His eye is on the sparrow, or in my case, our little Birdy Ava Samantha Grace.

Amen.

Reunited

We are together again as a family!  The kids came down on Saturday and it was so wonderful to see them again, it was hard to believe I hadn’t seem them in almost 2 weeks.   The kids were pretty pleased with the Ronald MacDonald House and I’m so grateful that there is lots for them to do here because keeping them occupied is going to be our biggest challenge.

I joke that we’ve traded the stress of not having the kids here, for the stress of having them here.  And ha ha ha, but it’s kinda true.  We can’t completely concentrate on Ava now that the other kids are here and need us as well.  But in reality, since Ava is still hopped up on morphine and can’t be held yet, it is a good time to spend with the others – especially with Christmas just around the corner.   And we do love being together –  as together as we can be as a family without our little Birdy here with us too.

And Ava is doing good – very stable and still wearing her little corset that is pulling her chest tighter a little more every day.   Again, like I said we still can’t do much more for her than talk to her and  stroke her head and hands and feet, and her chest does need to get closed so we can make more progress.  But after last week’s failed attempt, I don’t mind that they are taking things slow.  I don’t want a repeat of that stressful episode!

But at any time they could decide again to close her up again,  so please continue to pray for wisdom for the dr’s and for protection from infection for Ava, and that the next time they close her chest, it will work!

Phew…

We got through this day,  and Ava is doing so much better, praise God!

She stopped bleeding this afternoon and they gave her a blood transfusion and she looks so much better.   And if the bleeding really is done,  they will restart her blood thinners tonight which is another relief.     She looks comfortable, she’s cleaned up, and she seems to be stable again – I say that with a little bit of hesitation, if there is one thing you learn when you are here, it’s cautious optomism. 🙂   But even the chief cardiologist said this afternoon that she looked good, but she still wasn’t out of the woods yet  (I think he meant beacause her chest is still open).

But in regards to that, Ava’s surgeon came by around lunch-time and put this corset thing on her, which they will use to try to close her chest a little every day.  It’s the neatest thing that was designed by a nurse here at Sick Kids,  how cool is that?  I’m hoping that by trying to close her slowly now, they will avoid the shock to her system that the last close caused, and hopefully this time she can stay closed!   It may just take some time to get to that point, maybe 3-10 days.    I know it’s in God’s hands and it’s all in His timing, but you can bet I’ll be praying for the 3 rather than the 10!

And more good news… the kids are coming tomorrow!  Jason surprised them all today, he had his phone on when Sophia saw him so I could hear how she reacted and she squealed!  She was so happy to see her dad.  And then he surprised the other three at the bus stop and I’m not sure I have the facts straight, but I think Jason got tackled.  Thankfully my friends took videos and I can hardly wait to see them.

So it seems our roller-coaster has leveled out for now, I so appreciate everyone’s prayers and support today, it’s been wonderful.   We had a ton of stuff dropped by the house today by our church friends and family for Jason to bring back here with him, and at one point Jason called me in tears just over-whelmed by the generosity of others.   We are so incredibly blessed by all of you!

See, once again God has shown me that that I can trust Him even in the valley’s and He proves Himself over and over, even when my faith is weak.  I just hate how I am so quick to forget!    So please keep reminding me – especially when another dark day comes.

So it’s good to breath a sigh of relief, and followed by that is a yawn, I better get some sleep.

As always, I will keep you posted!

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.

It’s a start…

We were so hopeful that today was going to be the day they would start to close Ava’s chest up.  But when we got here this morning we heard that when the Dr’s did their rounds this morning they decided to wait another day.

I was so disappointed!   And then sitting there by her bed I found myself getting more and more emotional and just feeling the heaviness that  can come with having to wait.

So eventually I went and looked for the chapel here, because I just needed a place to cry and pray… and just let all this emotion out.  So I went and found it (it’s very nice and quiet) and I cried and prayed and just laid it all down before the Lord and gave it all to Him.

And then, just as I was starting to feel better I got a text from Jason that they were actually going to start today!  Apparently the surgeon just waltzed in Ava’s room and said, “We’re going to do this”…  Praise God!

So I’m not clear on whether they are just removing the stent today, or removing it and starting to close her chest up,  but it doesn’t matter, it’s a start.   They will do it right in her room and it will take a few hours, so we will be sure to let you know the outcome.

Thanks for praying!

Our bionic baby…

Ava pulled through the night!  And she is doing better than expected, praise the Lord! 

However, she does look rather bionic, I’m not sure there is a square inch of her that doesn’t have a tube or a wire attached, but I’m not complaining, it’s all keeping her alive.

Her little chest cavity is open to help with swelling, and Jason actually saw her little heart beating last night, isn’t that incredible?

She is still on a ventilator and is sedated and muscle relaxed, so she is just lying there, but her circulation is clearly better as her little feet aren’t dusky anymore… it’s all so amazing.

And as the Dr’s explained to Jason last night, they work here in terms of goals for her – not timelines –   goals.  So their goal last night was to wean her off some of the medications that she was on for surgery all while keeping her blood pressure stable, and they met their goal sooner then expected, which is wonderful news and just one more sign that God is still keeping this little one close to His heart.

And it’s hard as a mom to see your baby lying there when all I can do is stroke her head, but I’ve been praying that God would be her comfort right now and I’m trusting in Him,

So now for prayer requests…

Please pray for Jason and I as yesterday really kicked our butts… and I’m actually starting to feel now that I had a baby and it doesn’t feel good.  We need to make sure that we rest and keep up our strength so that we can be here for Ava and not get sick.

Please pray for the right nurses to look after Ava, after a while we can request a core team so I’m looking forward to that, some consitancy would be great.

Please pray that she would remain stable today as they continue to wean her off the medication.  We haven’t seen the dr’s yet today so I don’t know what her goals are, but just continue to pray.

God has been so incredibly faithful and even last night all Jason and I could do was to be thankful for how God is making His presense known in caring for us every step of the way.

And we are thankful for all fo you – you who have been reading this blog and commenting and praying,  it’s a huge encouragment to us, so thank-you!!!