Next Steps

Yesterday was such an emotional and exhausting day, and today has been such a busy day, that I just haven’t had time to blog.  But now my mom is going to make me a cup of tea and I will gird up my loins and write write write.

So yesterday… the big reveal.    Jason drove up to Toronto Monday night so that we could be together to talk to the doctors Tuesday morning, and it was wonderful to have him here.   We waited impatiently for rounds so we would hear about their plans for Ava, but when the rounds finally came in, the ward cardiologist said that he would come back after rounds to talk to us… around noon…. AUGG!!!

But since we are resourceful, we went in search of Ava’s cardiologist,   who we had heard had come looking for us first thing before we got there.       Not only were we looking for to get some information more quickly  (aren’t we awful?)  we really trust and respect him, and we knew that if it wasn’t pleasant news, we would much rather hear it from him.

We were able to track him down and thankfully he had a minute to talk to us.   He right away said that after looking at her cath results, he could see clearly for himself that the function in her right ventricle was decreased and that her tricuspid valve was quite leaky like we had already been told.   And unfortunately during the surgical rounds that morning, Ava’s surgeon said he didn’t feel that he could go in and do a valve repair unless it was part of the Glenn surgery.  But that is the problem, Ava can’t get the Glenn because the pressures in her lungs are to high, probably due to the valve leaking!     And the valve is leaking badly partly because there is too much volume in her heart.

So in a nut-shell, Ava can’t get the Glenn surgery because she needs the Glenn.   The Glenn would reduce the volume in her heart and it’s work-load and probably help out the valve too, so it’s a huge predicament.     And unfortunately there is another problem,  the left side of Ava’s heart – her left ventricle –  is still big and because it’s not functioning, it’s acting like a big boat anchor and is dragging down the function of the right.  And unfortunately, I don’t think it’s something that can ever really be remedied.

So the plan.

The plan is to keep Ava on her heart medication drug that she is currently on –  milrinone – and then on Friday she will get another echocardiogram.  If the milrinone has helped at all by improving her heart function, they will think about doing another catheterization.    And if the cath showed any improvement, they would reconsider doing the Glenn surgery.

But if Ava’s heart function hasn’t improved by Friday…  well then we start thinking about having Ava listed for a heart transplant.

A heart transplant.

Never ever would I have thought that that card might have to be played this early in Ava’s life.  And I’ll be brutally honest, baby hearts are NOT easy to come by and if by chance Ava needs to be listed and we decide to go down that road, we could be waiting an awfully long time.     And keeping a baby who needs a heart healthy, until that new heart arrives,  can be a huge challenge.

And it just seems too much to think about it, and it made yesterday a very tearful and heavy day.   Not that we haven’t given up hope for this week’s echo to show some good news.  But it seems that we have had so much bad news in the Ava department that hope for saving her own heart does seem to be ebbing away.

Oh Lord, please grant us the strength just to get through this day – and this day alone, because the future is WAY too daunting.

This verse keeps coming to mind…

Matthew 6:34   “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

You can say that again.  But that is exactly the lesson that God started teaching us back when Ava was born and then when Sarah got diagnosed with diabetes.    That God is only granting us the grace to get through today – as we try to live just one day at a time.   And I won’t lie, it’s not easy… and it can be down-right painful at times.    But through it all God is already showing us He cares for us by giving us what we need.   Like how I got an amazing sleep last night and woke up with my soul refreshed, and then we found out today that we got an apartment at the Ronald MacDonald house so Jason and the kids can join me here, praise God!

So the next steps are exactly that…. steps… that will we take one day at time,  thankfully with all your support and your prayers for our sweet little Ava, our Birdy.

Thank you and Amen.

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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!

Monday morning…

One of the crazy things about having a child in the hospital is that every day is the same.  You wake up, shower, get dressed,  have breakfast,    make your way to the hospital and in our case, sit at the foot of your child’s bed and remain there for most of the day.

What day is it today?  Oh right, Monday.   So today Birdy is doing good, she has lost a lot of fluid which is good, she was so puffy after the surgery she looked like a little sumo wrestler.   They were helping her get rid of the fluid with medication, but now they have stopped those meds and she is still peeing well so that’s wonderful.

The surgeon was on the rounds today and he would like her off her blood pressure medications before he closes her chest up,  so I don’t know how long that is going to be because they tried to take her off those meds yesterday and she didn’t do so well.

See it’s all one huge balancing act.   She is attached to a monitor that shows her heart rate and blood pressure.  These both need to stay in an ideal range, but all the medications she is on either work for against her blood pressure.   Then you add-on things like the ventilator and whether her blood volume is low from them drawing blood from her so often, and so it’s a just a huge numbers game of checks and balances while trying to lower her off of these meds.  I have to give the nurses a huge amount of credit, it’s not an easy job.  Especially when her blood pressure dips and they have to figure out what changed and how to get it back up again.

So we just need to pray, pray that they could continue weaning her off these meds with good results.   As well, until her chest is closed and some of her tubes and catheter and ventilator are removed, she’s a sitting duck for infection… so please pray that she would be protected from infection so we could continue this healing process.

And it is a process and we have to be very patient and that’s what we are trying to be, very patient on this Monday morning.

Thanks again for your support and prayers!

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!

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!!!

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!