Six months old!

Wow, Ava was 6 months old yesterday! ¬† It’s hard to believe that we’ve had her for half a year already… it actually seems like longer, perhaps because it’s been so busy. ūüôā

And she is still on the mend. ¬†She had a few more ¬†awake periods yesterday, which was nice to see. ¬†And although they had talked again yesterday about giving her a blood transfusion to up her hemoglobin levels which were low, they held off because they still weren’t happy about her fluid balance as they felt she was puffy and retaining too much fluid. ¬† ¬†So yesterday, they kept working on getting Ava to pee more, and gave her more drugs to help the diuretics, but when they looked at the numbers – ¬†her calculated fluid in and fluid out – nothing seemed to be helping.

Then last night at 3:00 am, ¬†Ava had a big wet diaper which was great news, ¬†and her nurse went to weigh it, but the scale said the amount in the diaper was only about 80 mls. ¬† The nurse thought ¬†that was strange as it felt much heavier so decided to weigh the diaper on the scale next door and guess what… ¬†the scale in Ava’s room was wrong!!! ¬† ¬†The diaper was more like 140 mls, which obviously meant that they hadn’t been able to get accurate amounts of Ava’s outputs for who knows how long, ¬†as the scale was under-weighing her diapers… grrrrr. ¬† ¬†So the poor baby had been made to pee too much, and ended up being very dry, and when they weighed her today it showed that she had lost a lot of body weight (probably mostly fluid), so that wasn’t too good, but but thankfully today they are trying to correct everything by upping her fluid intake and she did get her blood transfusion which should help to perk her as well.

She still has her cough and she still has gunk in her nose, and still isn’t feeling the greatest. ¬† But as the nurse said today, if you or I had what she had, we would be in bed and would have taken a week off of work. ¬†So it stands to reason that this bug has been hard to beat for our little Birdy with her not-so-great half a heart, as well as the stress of Saturday when she didn’t eat all day and had the picc line insertion, it’s just a blessing that she’s lived to tell the tale!!

But we praise God that He is healing her and for the fact that He is still laying her on people’s hearts and prompting them to pray for her. ¬†God is not finished with Ava – but I realized today that what I really need is a good dose of hope. ¬†¬†I know that God is a God of miracles, and He could heal Ava and bring her a new heart, but I also know that He gives and takes away, you know what I mean? ¬†So it’s a very difficult place to be in – ¬†and I know there are other families who are dealing with similar situations – ¬†a place where you don’t ¬†know how to think or how to feel. ¬†Are we to look ahead with hope at bringing her home some day? ¬† Or should we be preparing our hearts (I don’t think we ever could) to let her go?

At this point all I can say is that we are looking forward to getting all of Ava’s pre-transplant ¬†testing done so Jason and I can have a heart-to-heart with the transplant Dr’s and see what they say. ¬†Hopefully they will say that Ava is a good candidate for a transplant, and that she is in a position to hang on for a heart, however long that might take. ¬† If they say something different, we will just have to cross that bridge when we come to it.

Regardless of what happens going forward, the six months that we have had with Ava have been a blessing and we count each day as a gift.   But please pray that God would be gracious to us give us some tiny glimpse as to what our future holds with Ava.  Our future with our sweet little 6 month old who needs a new heart.

Momava

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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!!

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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‚Äď1552), 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…

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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!

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.
9 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!

 

 

 

 

Alot to be thankful for…

Wow Рso if you have read the previous post (which I recommend) you will see that my dear friend Christa has posted our most recent news Рthat 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 РAfter 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 Р9:00 am We receive a call telling us that the Cardiologist in Toronto РDr. Jaeggi Р 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 Р8:00 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. ūüôā

4:30 pm РFinally got called to see the OB!  Dr. Ryan who is the head of the fetal medicine unit at Mount Sinai Рstarted 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. ūüôā¬†¬† 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 РWoke 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!!!!