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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Waiting for the Big Reveal

So we are hoping tomorrow is the day of the ‘Big Reveal’…  where we hear about what the plan is for Ava.  Will they consider doing surgery to fix her leaky tricuspid valve, so that we can hopefully get her Glenn?   Or will we just continue to wait and repeat the cath in a few weeks.  Or are there options we haven’t even considered.   We shall see.

And this morning when rounds came by I found out they found blood in Ava’s urine again last night,  so they have started her on antibiotics, and tomorrow she will get an ultra-sound of her kidneys to make sure the poor baby doesn’t have kidney stones.   Apparently one of the draw-backs to being on diuretics for long periods of time – in Ava’s case, her entire life – is that it makes you prone to kidney stones.    Oh man, I hope she just has a bladder infection!

But other than that, we had a good day.  Ava was happy except her teeth – or lack of – were bothering her and she didn’t nap that great, but I still enjoyed being with her today.

I am finding the room we are in a bit sad, even though it is actually a cheerful room people wise.  We are sharing the room with our little friend Alleeda, who is 15 months old and has been waiting for a heart since last summer.  And there is also a baby in our room around Ava’s age who has been waiting for a heart since Christmas.   The families of these kids are so cheerful and patient in face of this adversity, but I wish I could give them what they need now.     But hearts aren’t easy to come by and maybe someday I will start a campaign promoting organ donation for children, but right now we kinda have our hands full.  🙂

So please pray that tomorrow we actually hear some good news for a change and the ‘Big Reveal’ won’t be a big disappointment.

Oh – and thank you for praying for Bella!   She is so much better today – she spiked a fever last night but was started on antibiotics and is doing better.   I was able to share with her mom that everyone had prayed for her and that was awesome.

And thank-you all as well for your prayers and comments and emails… they are so encouraging, you have no idea.

We’ll keep you posted!

No plans yet…

Well I wrote a big post on my phone last night but couldn’t figured out how to publish it, which turns out is a good thing because things have changed once again today – as they have a habit of doing – so now I will write a new post here on the computer in the library.  Ava is having a nice snooze so I could run out for a bit which is always nice.

So, as of yesterday it seemed that the general consensus was that Ava was basically here in the hospital now until her next surgery.  The cardiologist was going to try to get her a new cath date earlier than the one that was going to be booked for the first of June and then surgery would get booked and we would just stay in the hospital until it could all get done.     Which in light of Ava’s decreased heart function and increased valve leaking seemed to be a good idea, especially as she has been on continuous feeds since we got here and increased lasix (diuretics).

However,  it seems the cardiologist is having a bit of a hard time getting everyone on board with this plan,  especially since Ava still does have a cough and it’s still not 4 weeks since she had influenza.    The cath people will only do an earlier cath if the surgeon will do surgery right away.  But we still don’t know if the surgeon is comfortable doing surgery since Ava still isn’t 100% and after you have an illness like influenza, it can make recovery more difficult.

So if that is the case, and we have to wait a week or two anyway, we might as well go home!  Which would be wonderful in one way, but scary in another, because now we know Ava is even more fragile then she was before and what if she gets sick again?   But there are risks to being here as well so who’s to say which is the better choice.

But in order to qualify for going home, Ava needs to be back on bolus feeds (being fed every three hours like normal) and her lasix need to drop down again to twice a day.   It will be interesting to see if she tolerates these things, because if she doesn’t we aren’t going home either.

So that is why I can say there are no plans.  There are too many variables and too many things need to be sorted out and figured out.

Please pray that this would all be happening according to God’s timing and that whatever is decided is for the best.   Ava and I are fine, it’s been nice seeing everyone here again and I’m meeting some friends today so today is going to be a good day.  We aren’t suffering at all, except we are missing our family like crazy which is a given of course.

But we will just take it one day at a time, and just chill and wait for someone to tell us what the plan is. 🙂

A week old today!

Little miss Ava Samantha Grace is a week old today!

And to celebrate we decorated….

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With some stockings and hello Kitty and it definitely looks better. More like home. 🙂

And it’s been a good quiet day. She is doing really well and if things continue like this they may even close her chest cavity in the next day or too – that would be amazing.

So we are still praying against infection and praying that things continue down this good road we’re on!

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!

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.