Please pray…

Our little Ava is rather sick right now.  She was diagnosed yesterday with para-influenza, a bug that can make a healthy baby sick, let alone a baby who is in heart failure like Ava.    She is on oxygen right now and they’ve started her IV heart medication again and is being followed by the critical care team right now.

We will just have to wait and see whether she has the strength to beat this bug, or if she will get worse which could potentially put her little life in jeopardy.

Jason and I are just praying for peace and strength and that God’s will will be done in Ava’s life.    Please pray for this little life, she is God’s and we are trusting in Him completely.

 

 

Happy Birthday Sophia!

Sophia turns 4 today, Happy birthday Sophia!!!

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She’s growing up so fast, our little sweetie pie.    Our sweetie pie with an iron core.  She’s sweet but tough and it’s a good thing because it’s meant that she can transition between our house and Oma’s and the Ronald MacDonald house no problem.   She’s fine with whoever can take care of her,  as long as they love her and can stand her constant chatter… hahaha. 🙂

Last year when I expecting, she  had to transition from my ‘baby’ to my ‘little one’, but now I think that we have to transition again to just our little girl.   Oh Sophia, we love you!

And talking about transitioning, we’ve all settled in well here at the Ronald MacDonald House.  Although I was a little disappointed yesterday when I found out that Ava would be moving back into her own room at Sick Kids, and out of step-down where a nurse was always in the room with her.  She does’t need that level of care now that’s not on the IV heart meds, but it was really nice to know that she was never alone,and so I didn’t feel guilty when I came back to the RM house to spend time with the family.

Now I will start sleeping at the hospital again so Ava won’t be alone which is OK, it’s just another change.   And since Ava typically does sleep through the night, if she has had a good day and settles well,  I will come here and sleep at the RM house occasionally.

And it’s a good thing Jason and I weren’t asleep last night at 10:15 when the fire alarm went off here at the house.  Even though the alarm is VERY loud, we had to wake all the kids up and take them outside until we got the all clear (someone had probably just burnt popcorn) and so that was a bit of an adventure.

And miss Ava is doing well… but probably not 100% percent.   She is coughing more again and so today will get her third chest x-ray since we arrived on May 10th and will get yet another nasal swab to rule out any new infection.  I hope it’s not anything new; but if it’s not viral, that means the cough is probably related to her poor heart function and that is not good either.

Today we had our first introduction meeting with the transplant team, so as of tomorrow Ava will get some blood-work and tests to start the process of listing her.   This really seems surreal, and it also means a complete change of care, from the dr’s and nurse practioners that we’ve grown to know and trust, to a completely new team, but again thankfully we’ll just do this one step at a time and I’m sure this new team is just as wonderful.

Well I must go to spend the rest of the day with my family and our little birthday girl.

As always, I’ll keep you posted!

Together Again

Praise God our family is together again!  I went and saw Ava in the hospital Saturday morning and then hopped on a train around noon and  was home before 3 pm.   It was fantastic to be home, but bitter-sweet too because a part of me just didn’t want to leave, and was just wishing that we were all home together – with Ava – to stay.

But we started packing up and when Sunday morning dawned Jason and I both felt that we should go to church.  We technically didn’t have the time to go to church if we were going to leave nice and early for Toronto, but really didn’t have the time NOT to go to church, you know what I mean?    So we went, and were incredibly blessed by our Pastor Norm’s sermon.  The sermon was on living by faith, how appropriate!    And we were reminded once again, that we can’t live for God without faith, and without faith it’s impossible to please God.  A fantastic verse that feels like it’s just for us is…

Hebrews 11:1 Now faith is the assurance of things hoped for, the conviction of things not seen.

Oh blessed assurance.  God has not forgotten us, and we knew then why God had been calling us to church,  He wanted to encourage us, remind us that we can’t walk this journey on our own, and to keep walking in faith – even when things don’t make sense and we don’t understand.  And like Norm said,  God is still good even when everything that is happening seems not good.  Praise God that He is good.

And one example of how good God is… poor little Ava has an IV, and that’s how she’s been getting her heart meds.   But IV’s don’t last long on a baby like Ava who doesn’t have good veins – and last night it was in her foot, but when I came in this morning it had been changed to her hand;  and I knew instinctively that it was hurting her.  She was unhappy and unsettled and I know Ava and I knew that she was in pain.

The nurse looked at it and thought that it was a good line, but blood kept backing up into it and thankfully our nurse practioner told the nurse to get the IV team back up to look at it.  They came, and thought it was a good line,  but as they were checking it, I was at the foot of Ava’s bed praying that God would be gracious and make it clear to them what the problem was.    And then when they removing the bandages to get a better look…  oops, the IV came out!!   Praise God!   And before they could put another in, the NP and the cardiologist made a quick decision to take Ava off the IV heart meds, and try oral one’s instead – so that means no more IV’s, at least for now.

So today was a good day without any new developments.     Jason and the kids came up and got to see Ava again, and even though Ava wasn’t feeling her best today,  it was so nice to see the kids excited to see their sister again and Jason and I are just so happy that our family can be together again.

Today’s news…

So today Ava had her echocardiogram at 9:00 am, and at 12:00 pm I was told by our Nurse Practioner that Ava’s echo did not show any improvement in function.    Her echo was done by a tech, but finished off by a doctor who is number 2 in the country (or the world?) at reading function echo’s, so there is no room for doubt.

Ava is not getting her Glenn surgery.

Not much more was said today about the plan going forward other than we know that the unspoken outcome of all this is that Ava will likely need to be listed for heart transplant.  I was able to meet with our cardiologist and he said that sometimes children get listed for heart transplants because their function is bad, but then their function gets better and they get taken off the list.    I asked if there would be a concern that Ava might out-grow her shunt before a new heart came in, but he assured me that she has ways to go before they would be worried about that, so that’s good.   And it’s not like we are ever close to getting listed for a heart anyway,  all we know is that they will again discuss her next week at surgical rounds and then hopefully come to us with some plans going forward.

So it’s not the best news to end the week off with.  But Ava herself is doing great.. she slept most of the day because her echo today was a sedated one  and that really wiped her out.  But later in the day we were able to get on the floor and do her little excerise regime as laid out by her occupational therapist,  and she also breastfed twice today because she was so hungry from not eating for hours before her echo.   I always enjoy the time I spend with her and it makes my momma’s heart glad.

And I get to see my family tomorrow!  I’m taking the train home tomorrow and will help Jason pack the kids up to move here, so it  will be so wonderful to see the rest of the kids as I haven’t seen them in two weeks – it feels like forever.

Thanks again for all your prayers and encouragement.  It feels like this journey has just turned the corner and will be taking us down a new road.   I guess now we just wait and see what God has planned for us and our little Ava.

So thankful

Well I’m sitting here thankful for quite a few things.  First off, for all the support and love that people have sent our way through emails and comments on our blogs the last couple of days… you guys are making me weep (in good ways) – and reminding us over and over that God has not forgotten about us, He’s still laying Ava and our family on your hearts – and even your little one’s hearts –  and so even today when I don’t seem to have much hope in hearing good news tomorrow, we know that God still cares and is being so faithful.

And the verses that you guys are sending!!!  Love them!   Here is one that a friend sent… with her note

Romans 15: 13 May the God who gives hope fill you with great joy.
                               May you have perfect peace as you trust in him.
May the power of the Holy Spirit fill you with hope.
(this is from the NIV bible for young readers…so simple isn’t it?)

It is simple, so simple, but exactly right and just what we need right now,  joy, perfect peace and hope…. all free gifts of God to those who believe in Him and call on His name.  We are so blessed by God even in this crazy situation.

So yes, the situation.   Ava’s echo tomorrow is going to be a sedated echo, so she will be NPO (nothing passes orally) starting from 4:00 am to get her ready for sedation for 9:00.  It is going to be a very thorough echo, they are going to leave no blood vessel unscanned as they seek to discern whether or not Ava’s heart function has improved at all.

As the doctor on rounds said today, if her heart function looks better, we will redo the cath.  If it’s not better, or if it is worse then….  He just stopped talking.  He didn’t need to continue, we both knew what he meant.  It means we need to think about transplant.

But that is still tomorrow’s worries, so I won’t borrow trouble.

I am thankful that my mom could come down and spend a night with me and spend time with Ava.   I’m grateful that the Ronald MacDonald House got us an apartment and that my mom could help me move in and that Jason and the kids will join me shortly.   And I’m grateful that we have such good care at Sick Kids and that Ava’s cardiologists, both in London and Toronto are very caring and compassionate.

And I’m thankful that Ava is doing so well and had a good day and that even though we are in room with sick children we still can laugh and joke with the other moms and nurses and have good days.

And I’m grateful that Jason is doing an amazing job at home with the kids and that friends and family are helping so he doesn’t have to do it all on his own.

But please please, keep praying!  Your prayers are strengthening our faith and God’s power is evident, and whatever comes tomorrow, we know that God will see us through.

Amen!!

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.

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!

A day that ended well

It’s such a relief that this day ended well because it started out kinda crazy!    When I got to the hosptial this morning I was informed that during the night Ava’s heart-rate and respitory rate had risen and they got a little worried.   Then when they changed her diaper, they found blood in her urine… Ava!!

So they did some blood work and tested her urine and then because she’s still coughing, they repeated the nasal swab that we had done Wednesday and she got another chest x-ray… those horrible chest x-rays that baby’s get that make them cry and cry.    So basically she got a full work-over.

And just in case she was coming down with a new virus, we got moved out of the step-down room that we were in, to a single room right across the hall for droplet contamiation.    So we spent a nice quiet restful day in there while Ava slept and slept.

I had them check the results of the swab early afternoon and it came back clear, no new viruses!   Her chest x-ray was also clear and there was no more blood in her urine.      Her blood-work had shown that her white blood cell counts and nutrophils  were up a bit, and her urine did show a touch of bacteria, but since Ava woke up from her long nap happy and comfortable  and didn’t have a fever, they didn’t start her on antibiotics and they lifted the contact restrictions and moved us back into the shared step-down room to make her care easier for the nurses on tonight.

So I’m happy to say that things seem to be good with our sweet little Birdy now – praise God.

But please pray for aanother sweet little girl that I’ve met while I’ve been here – little Bella is 3 and isn’t doing very well tonight.  It’s really hard to see another family struggle, especially as Bella also is single ventricle like Ava.

For us, I’m just praising God for a good day for our family, even though we aren’t together and I’m so thankful to Him that this day has ended well.

Feels weird

Ava is doing great today, which is good.  Yesterday I don’t think she was feeling that well, probably because of the after effects of the sedation and the tube they would have put down her throat during the cath.   So is nice to see that she is feeling better.

She might be feeling better, but I’m having a hard time adjusting now to Ava’s new accommodations at Sick Kids.   Because Ava is now on IV heart medication, Ava had to move from a private room she shared with me, to a “step-down” room with 3 other children that always has at least two nurses in it at all times.

This is a huge change for us, first off because I can no longer stay with her over-night and it’s just a different atmosphere… very busy and there seems to always be a baby crying, or a machine making noise or beeping, so it’s going to take some getting used too.

And last night just felt plain weird.  Here I am, a mom of five young children, without any children around!    I hope that Jason and the kids can come join me before I get used to it… haha.   Thankfully it feels too strange to feel good. 🙂

And I’ve had some pics of Ava that I tried to share last night but I don’t think they worked so I will try again.

Here is my little Birdy going for a walk in the hospital… this was before she got an IV pole, it’s not so easy now!

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And then a few pictures of her before her cath on Thursday…

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Once again, Ava looks great, even though on the inside of her things are telling a different story.

Thanks so much for all your prayers and encouragement, we appreciate them so much!!!

Strength for Today

Sometimes you need extra strength from God just to get through the day,  and yesterday and today were days like that.

We got the results of Ava’s cath yesterday before she was even in the recovery room.  The Dr who did the cath – who is also chief of cardiology here –  came to find Jason and I where we were waiting in Ava’s room.   When I saw that he also brought with him some back-up, in the form of the current staff cardiologist, I started wondering if the news might not be so good.

He explained that Ava had tolerated the cath well but during the test they found that Ava’s tricuspid valve was very leaky and this was making the pressure in her lungs high, which is not what anyone wants to see.    With high pressures in her lungs, Ava can’t get the next surgery she needs – the Glenn – which requires low pressure in the lungs so that de-oxygenated blood from her upper body can by-pass her heart and just flow passively into her lungs.

We asked if they would consider going in and doing a valve repair and then doing the Glenn – but he replied that Ava’s heart should be compensating for this leaky valve, but it’s not, and so there is a concern is that Ava’s heart is just not as strong as they would like it to be.

This news was a crushing blow… I never for once thought that Ava wouldn’t be able to get her Glenn.  And even though Ava looks great, it’s hard to hear that her little half a heart is just not as strong as it needs to be.

But we still don’t know what the future holds and this is definitely not the end of the road.   As things stand right now, they have put Ava on a heart function medication – milrinone – at least for the weekend, which will help her heart function in case they do decide to do some kind of surgery next week, like a valve repair.    Or they might decide to leave her on the medication for a few weeks and then repeat the cath.

But we really won’t know anything until Tuesday, when the surgeon and our cardiologist and many other cardiologists will put their heads together and have a discussion about Ava and come up with a plan for her.

So it’s very hard.  Especially when Ava and I are here at Sick Kids and Jason has now gone back home to be with the kids.  Until we get an apartment again at the Ronald MacDonald House we just can’t be together as a family,  but we are praying that God will be gracious and move that process along quickly, because I have a feeling we are going to be here for a long long time.

And so once again, we are learning how to live just one day at a time, trusting God that He is good even when life is not going the way we want it too.  I am finding all this right now incredibly tough, but that old hymn Great is thy faithfulness has been on my mind,  especially the last verse says this…

Pardon for sin and a peace that endureth,
Thy own dear presence to cheer and to guide;
Strength for today and bright hope for tomorrow,
Blessings all mine, with ten thousand beside!

Great is Thy faithfulness!” “Great is Thy faithfulness!“
  Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
“Great is Thy faithfulness,” Lord, unto me!

God will grant me strength for today and bright hope for tomorrow which is something I desperately need right now, and am so thankful that God is faithful all the time.