Listed!

So yesterday around 4:30 pm, Ava was officially put on the waiting list for a new heart, praise God!!    When you are waiting for an organ donation in Ontario you are listed with Trillium, the gift of life network… http://www.giftoflife.on.ca/en/ a non-profit organization that organizes all the donations and recipients in Ontario.    They have all of Ava’s information, her weight and length and any other info they need… so if her perfect match comes available, Ava can get a new heart!

Now the thing about being put on the list for a heart transplant is that it’s NOT a first come, first serve basis.   You are giving a rating that shows how much you need a heart, so you might have to wait longer for a heart if you are stable, because if there is someone who needs a heart desperately, it would go to them instead.     And then the pool of available hearts is very small.   A donated heart can travel four hours, whether by air or road, which is NOT a huge area considering that Ontario doesn’t have that many people.   Sometimes hearts do come from the US, but not often.    So hearts are hard to come by, and I can show you families at Sick Kids that have been waiting for hearts for 10 months and 6 months and it’s frustrating and tough, definitely not an easy wait.

And then there are all the factors that go into matching a donor heart to a recipient.   A big factor is size,  you need a heart that is the right size of you.   Now in a case like Ava’s, her heart is enlarged, so she can take a bigger heart than would normally do for her size, but you can never go smaller than the size your own heart would be.    Blood type used to be a factor for infants, but years ago Sick Kids pioneered ABO incompatible heart transplants for infants under 18 months of age, so even though Ava is an O blood type, she can receive an A or a B heart.      Another complicating factor is that kids like Ava who have a congenital heart defect often times have blood vessels that aren’t normal.  In Ava’s case, her main pulmonary artery was fused with the upper part of her aorta when she had her Norwood surgery;  so when Ava gets a new heart, she needs it to come with an intact pulmonary artery and aorta as well.  The problem is, if that donor also is also donating lungs,  we probably wouldn’t be able to have the pulmonary artery, so that heart would have to go to a baby who didn’t need those extra blood vessels.

So as it was explained to us,  the odds of receiving a heart perfect for you is like winning the lottery…. and that is what we are up against.    But we serve an amazing God, and we know that if He wants Ava to get a new heart, He will provide one, so all our hope is in Him.

And then there is the heart-breaking part of all this;  we know that another family will be going through a devastating loss of a child, at the same time that we are rejoicing that our child is receiving the gift of life.   But I like how Jason put it,  we aren’t waiting for another child to die, by the time the family is deciding to give the gift of life, their child has already died.   And that is something that we have absolutely no control over, nor do we wish it for anyone.

But it certainly has made us look at organ donation is a different light.   I understand that if you just lost a child, donating their organs would seem like an extremely difficult decision, but for people on the other side like us, a donation would mean the gift of life and we would be grateful for that gift for the rest of our lives.

So the wait begins, for a new heart for our baby.   And even tough it’s going to be challenging times ahead, we still know God has a plan for our little Birdy.

One month

As of tomorrow, June 10th, I will have been in Toronto with Ava for a month, I can hardly believe it.     I just wonder how many more months we will be here…  I wonder.

I realized today that Ava has spent over half of her short life in the hospital… and it makes me sad.    Especially when we compare Ava’s life to our four healthy children’s lives and I’m just glad that she won’t remember any of this time spent in hospital.      Today we were joking today that she needs her short-term memory erased, because right now she is hyper-sensitive to people touching her as she’s afraid she is going to get a poke, or her nose suctioned and she flips her lid multiple times a day, my poor baby.

Last night didn’t help – the turkey pulled out her ng (nasal gastric) tube around 3:00 am and thankfully she pulled it all the way out, because if she had pulled it only 1/2 way out she could have aspirated as she is on continuous feeds.   And even though I slept over with her last night I didn’t hear a sound, the nurse just found her ng  lying on her chest in a puddle of milk when she came in to check on her.  So they had to reinsert the ng and she hated every minute of it.     But thankfully this week I am already slated to attend a g-tube (gastrostomy tube) class, where I will learn all about how they insert a tube directly into Ava’s stomach through her tummy so we can feed her that way.   And then I get to learn how to change the bandages and care for it…. yahoo!   Well, not quite.   But it will be a relief to have her ng off her face, but I’m not sure I’m going to like a tube into her tummy any better.     But the girl needs to eat, and she still isn’t strong enough to do all her oral feeds herself, although now that she is starting to feel better, we are going to try her on solids this week which is kinda exciting.

And we finally had a test done and heard good news from it which was another blessing!   Friday Ava had her GFR renal study (glomerular filtration rate (GFR) renal study) to check her kidney function as a test needed for her transplant work-up.   All she had to do was lie on a board so they could take pictures of her kidneys, but  I think she got it into her head that she was being restrained for an IV poke because she freaked out.  But eventually calmed down and fell asleep… good girl.   And the next day on rounds we heard that her kidney’s are functioning fine, praise God.  Which probably doesn’t seem like a big deal, but it’s a huge deal for us because we feel like we only seem to hear bad news about Ava as far as tests are concerned.   However, they also did a kidney ultra-sound and it seems that Ava does have some reflux coming up from her bladder,  which can cause kidney damage and urinary tract infections.  So that wasn’t nice to hear, but she is now on more meds to prevent infections.  My baby, the walking pharmaceutical company.

This week might be the week where Jason and I can sit down with the transplant doctor to find out if Ava is indeed a good candidate for transplant, and then we need to decide what direction to take.   I read today something that I had already heard… but it said that a heart transplant is exchanging an acute heart disease for a chronic heart disease.  Nice and reassuring huh?   Meaning that a heart transplant is NOT a cure all.  It’s just another journey that will involve anti-rejection meds for life, lots of clinic visits and a heart that will hopefully beat the odds to last more than 20 years.

So please keep us in your prayers as our family is happy to be together, but missing home and are not quite looking forward to a summer in the big city.   Thankfully we get to do this journey day by day (not month by month) and by God’s grace and everyone’s support,  we can face another week ahead with all it’s unknowns and uncertainties.

Some pink in her cheeks

I’m happy to say that the blood transfusion yesterday did Ava some good and there is some pink in our baby’s cheeks again!    And I just want to say a huge thank-you to all of you who donate blood.  It’s one of those things that you don’t think about until you need it, but then you realize just how important it is.

So now Ava is pinker, but she wasn’t much happier today.  She seemed uncomfortable, but she does have an IV in her foot right now.   Even though she has a picc line, the picc line is being used for her heart meds (milrinone) the picc only has one lumen (port) so had to get an IV for her blood transfusion yesterday.    Sometimes IV’s are fine and sometimes they just really seem to bother her, so hopefully this IV stays open as she needs it for a test tomorrow and then we can take it out.

And Ava is also off her oxygen!  She’s been slowly weaning herself off of it for the past couple of days and so we turned it off later this afternoon.  It’s nice to get the prongs off her face and having her breath room air again, praise God!  See how much better she looks… definitely not as white.

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And isn’t that dolly beside Ava a riot?   This afternoon our floor’s Child Life worker took Sarah and Sophia off for a play and they had these dolls that she gave to the girls and they got to decorate them and then they played hospital.  Well as I was told later, Sarah’s dolly had a breaking heart… and then the dolly had cancer and got a few needles.   Sophia informed me that her dolly didn’t have a heart, but that was OK because she didn’t need one. 🙂  Oh my girls, it’s so sweet but sad at what comes out in their play.  (The child life worker and I agreed that the cancer thing is probably something Sarah picked up from living here at the Ronald MacDonald House).

When I tucked Sarah into bed tonight she had her doll and she said that the doll was better now but still had to get a needle every day.  I asked her if the doll had diabetes,  but she said the doll doesn’t have diabetes, just something similar.   Oh my Sarah!!!

We also saw Grandma today as she drove in for a quick visit and Jason and I met with the transplant team’s social worker which was very informative, so the day went by really quickly which is always good.

So even though Ava isn’t quite back to her old self, I’m glad that she is looking better, and hopefully tomorrow will see even more improvement.

We’ll keep you posted!

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. 🙂

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

Trying to mend

Well it’s seems it’s been an uphill battle for Ava to recover from everything she’s gone through.  Yesterday (Sunday) I was concerned about her in the morning, because she was breathing shallow and fast, and seemed so pale.  I was concerned enough to call the resident back in to have a look at her.   He at least could reassure me that she was ‘safe’ (stable), and that did help to relieve my mind.    As the day went on she did seem to get better, even though she just slept most of the day.   She was only up for two short bouts,  but had lots of smiles for daddy when he went to see her last night, so that was wonderful.  Anytime she smiles, I’m thankful.

Jason had to go out first thing this morning so I stayed here with the kids instead of going up to the hospital right away like I usually do, and when I called the hospital to check on Ava they said that they were a little worried about her as she was so pale and puffy.  I was able to tell them that she started the day off yesterday the same, but made sure to hurry over there as soon as Jason got back.   She was more awake and alert today, but definitely puffy and so today they concentrated on reducing her fluid intake and trying to diurese her.   The extra fluid makes it harder for her to breathe and probably makes her feel crummy.     They also did blood work and it seems her hemoglobin in low so she is going to need a blood transfusion, but they will wait and do that tomorrow. Oma and Opa were able to stop by today to see her and again, she had lots of smiles for them, but didn’t stay up too long after that, smiling for her is exhausting. 🙂

She is still on oxygen and definitely still on her IV heart meds… I’m not sure she will ever be able to wean off of those.   But hopefully she will recover from all this soon and then we can continue doing all the checks needed for her transplant work-up.    Once all testing is done we can sit down with the transplant Dr’s and see what they have to say about listing her for a heart.

So that is what we are up too.  Just day by day, trusting in God and seeing what He has in store and waiting for our Ava to mend.

Much much better

I am so happy to report that Ava is doing much better today, praise God!   I think that the stress of yesterday aged me about 10 years,  it was that crazy.    Last night we were so concerned we brought the kids in to visit Ava, so we could all be together as a family in case it was for the last time.

But Ava pulled through the night and has been much better today.  And it’s strange timing, but as it turns out,  the Critical care unit here at Sick Kids is full, and so even though Ava is technically in Critical Care right now, she is up on the 4th floor where we always have been,  with all the nurses we know and love.  The only difference is that she has one-to-one nursing care, and is being managed by the CCU dr’s instead of the 4th floor cardiac doctors.

We ended up in Critical care yesterday because when everyone realized how badly Ava was doing, they wanted to start her back on the IV heart meds right away.   But the critical care team that had come up to assess Ava didn’t feel that it was safe to start an IV on the 4th floor because she was so unstable, so we had to go down to the Critical Care unit for her IV start.    While we were there her colour went from bad to worse and if it hadn’t been for the heart meds and the oxygen they put her on I don’t think Ava would still be with us.   So that’s when they decided to keep her in Critical Care, but moved her upstairs due to the lack of space.

And we were so happy to see that she did perk up today and probably would have improved more if the poor baby had been allowed to eat!   But because she is so dependent on her heart meds now, they decided that she needed a picc line in case her IV fails (which they often do).   But it’s the weekend, so things aren’t scheduled so she had to have an empty tummy starting from  6:00 am in case they were ready for her at 8:00 am.   But we didn’t hear anything all morning and then finally just before 11 am they said it wasn’t going to happen today, so we got to feed her a little.   But then they changed their minds and said they would do it, but it would be after 4:00 pm, so we stopped feeding her again at 1:00 pm and then she didn’t end up going for her picc until 6:00 pm!  So we starved her all day, but thankfully as she was getting fluid through the IV she didn’t seem that hungry, and now as soon as she comes out of sedation we will start feeding her again.

This is one crazy and exhausting journey we are on with our little miss Ava.  And I’m glad God has a plan, because for us it feels like trying to navigate rough water in a canoe in the dark, we don’t know where we are going. 🙂  And I was thinking yesterday that God knows what’s best for our family, but then I stopped and thought that I shouldn’t really think that way… because in my mind, the best thing for our family would be to be on vacation on a beach somewhere… haha.  I rephrased it in my mind to say that I’m not sure what God is going to call us to endure before we are finished this Ava (earthly) journey.  But again, no matter how difficult things get,  God is providing the grace and peace to get through it all, and for that we are very thankful.

Lamentations 3:22-23

22 The steadfast love of the Lord never ceases;
his mercies never come to an end;
23 they are new every morning;
great is your faithfulness.