He will never fail….

Well it’s pretty amazing, but Ava has been feeling a lot better the past two days.   And she has been losing some weight – which is fabulous as she has some water-weight to lose, and her liver is smaller than it has been in weeks.   And that of course is a good sign because it means that she isn’t so congested with fluid.      But she was being a turkey yesterday, because she seemed to be the happiest when I wasn’t there.   Three times yesterday she was happy and smiling at the nurses when I wasn’t with her… and I’m with her most of the time.  Apparently I need to get to the hospital around 7:00 am, not go for lunch at all, and stay till after 8:00 pm…  oh dear. 🙂

But thankfully today I did get some smiles out of her, and it just makes my heart so happy to see her happy.   She still doesn’t look as good as she did a month ago, but she’s still here and she still can smile and we’ll take it with thankful hearts.   And I’ve been able to cuddle her again!    When Ava doesn’t feel good she doesn’t like to be held,  she just arches her back when I pick her up and wants to be put down again, and so for the past while I’ve been starved for snuggle time.     But last night since she was feeling better, I took her out of her bouncy chair as she was falling asleep, and she snuggled down in my arms and it was just so wonderful to be able to hold her again.    This afternoon when I took her for a walk around the unit (her huge IV pole in tow) she actually cuddled right into my shoulder and she hasn’t done that in ages and it’s a sure sign that she is feeling a little better.   Isn’t God good?

And so we are truly grateful.    And I’m glad to have something to be thankful for,  because lately I just can’t help but think about how much our family is missing out with our baby in the hospital.   Sure the kids are having fun doing things they normally wouldn’t have a chance to do, but we aren’t home, and I long to be home.   We would have had so much fun this summer with a healthy 7 month old,  Ava would have loved the pool and the kids would have had so much fun playing with her… and I feel like Ava’s babyhood is slipping away.   And not only that, but because she is so weak, even though she is almost 8 months old, developmentally Ava is probably on par with a 3 month old in terms of physically ability.   If a new heart comes we will have a lot of work to do catching up, but I guess that’s the least of our worries right now.

But I have to stop myself from feeling too bad for us, because I’m learning, self-pity doesn’t get you very far.    And when I start looking down,  I tend to forget to look up, and I need to keep looking up and keeping putting my faith and trust in God.  He does know what He is doing and He has a plan.  In fact,  a friend sent me a text the other day and I’m going to share it with you… I get teary every time I read it…

Do not despair
God is always good
I will see the goodness of the Lord in the land of the living
I know that you have a future and hope for me, 
and I know that you work all things for good to those who love you.
I will NOT despair God, you are always good.
Psalm 27:13-14  
I believe that I shall look upon the goodness of the Lord
    in the land of the living!
 Wait for the Lord;
    be strong, and let your heart take courage;
    wait for the Lord!

(thanks Isabel!)

So instead of feeling sorry for myself and my family (which is so tempting!!!!!)  I think I will choose instead to be thankful and to trust a great God.    And there are lots of things to be thankful for… for friends and family who are doing such an amazing job supporting us through prayers, words and physical means.   For a place to stay, for a great hospital… for being able to be together as family and an amazing God who will never ever fail us.

Please pray that I would continue to choose to look up… lately it’s become more of a battle,  maybe because I’ve been alone now for a few days and without Jay and the kids here I’m more prone to feel sad.    That and I feel like journey is starting to wear me out!!    But even when my heart is weak, my mind knows that strength comes from the Lord and if I keep choosing to trust, He will never fail.    He will never fail.

Amen.

Home again

So we got released yesterday and brought Ava home from the hospital, hurrah!   It’s so good to be home, although Ava definitely isn’t 100%.   Her nose is still stuffy and it’s only today that she has started to smile again and look some-what happy.    Last night she was tired and lethargic which had me a little worried, so to reassure myself I paged the cardiologist on-call in London to just check to see if Ava’s behaviour was normal.  Thankfully the Cardiologist on call was the one who had seen Ava that morning and she felt that if Ava’s vital signs were good then I shouldn’t worry as it made sense for Ava to be feeling tired as she is still tying to kick this bug.

But praise God – that He kept Ava and held her and that she wasn’t worse than she was.  I had a moment of panic when I brought her in to emerg in London Tuesday night – because while she was being triaged – the nurse asked me to come with her somewhere more private – and she brought us into the trauma room.   The room then suddenly filled with people and dr’s and they started her on oxygen and inserted an IV and I was a little surprised, and then worried because I knew that she wasn’t right – but obviously didn’t see how bad she really was.   I guess the fact that her little half of heart was beating almost 200 beats a minute clued them in that something was very wrong.

I’m so thankful once again that we live close to a good hospital filled with competent people.  And everyone in the emerg at London takes Ava very seriously and I’m glad.   And again,  influenza could have taken Ava’s life,  but God spared her and I am so thankful for everyone’s prayers, so thankful that she is on the mend and is back at home with her family.

But now in the aftermath of getting a positive influenza diagnosis,   Ava’s catheterization is once again postponed and it looks like it won’t happen until the end of May.   Just to recap – the catheterization is a procedure where they will insert a thin catheter into one of Ava’s veins, go into her heart and test the pressures of her heart and lungs to see if she is ready for her next surgery – the Glenn.   And Ava desperately needs her Glenn surgery so that her heart won’t have to work so hard.    If everything goes right, after the surgery she won’t be as medically fragile and hopefully won’t require as much care… but that part is neither here nor there.  She is our child and we will give her whatever care she needs for however long.

And I was blessed to come home to a tidy house with ALL my laundry done thanks to my wonderful mother-in-law who took care of Sophia and lended a hand.   We couldn’t manage it alone with everything that we are going through and we are blessed with all our friends and family who keep helping us.    I keep saying that it’s like we are trying to juggle it all, but no matter how hard we try, we keep dropping balls…   but that’s our life right now.   God is certainly giving us a lot to handle, and as Jason always says, it’s amazing what you actually can handle. 🙂

So we are go grateful to be home and together again on such a beautiful day… Praise God!

No wiggle room….

I am quite bleary eyed and tired, but I want to catch everyone up so I will try to do my best to make this blog post coherent and spell things correctly, but I’m not making any promises. 🙂

So to make a long story short, the echo we had yesterday in London showed that Ava’s heart function is decreasing, which is sad and not a good thing at all.   They compared yesterday’s echo with the one we had done Feb 20 when we were in emerg and there is a noticeable difference.   Now, we still don’t know if there is decreased function from the echo we had at Sick Kids last week Tuesday, as the pictures have been sent but not analyzed yet, but any decrease in function is  just plain concerning.

And the trouble is that they just don’t know why this is happening.   Some baby’s do so well with their little single ventricle hearts, and some don’t and it’s not something they’ve been able to figure out.  I really wish they could.

But through all this our London cardiologist was very kind and asked me how I thought Ava was.  I personally am not super worried about Ava, but she is having more frequent  spells where she gets clammy and I’m also noticing that her breathing is faster more often and those things do have me concerned.  They don’t like the clammy spells either so  yesterday they hooked her up to a Holter monitor that recorded the electrical activity of the heart for 24 hours, to see if they can match up any heart irregularities with the clammy spells that she has.   Perhaps there is a simple arrhythmia problem which can fixed, who knows.

And since our cardiologist also was talking back and forth with Sick Kids yesterday, we got a call last night from Paula, our Nurse practitioner there, and she said that they wanted to see us on Tuesday in Toronto, and to pack our bags and be prepared to be admitted and stay for quite a while…. and I think this time they might mean it.

As Paula explained, Ava just doesn’t have any wiggle-room – meaning she just doesn’t have that reserve that we all have that allows us to fight things off, or deal with pain or stress.     Ava is just not that strong, even though she looks fantastic.     That’s what our cardiologist told the Dr at Sick Kids, that Ava looks great clinically, but her echo is saying otherwise.   Ava’s good healthy looks are apparently misleading.

So I’m packing my bags with a heavy heart.   I’m still praying that we won’t have to stay, but it seems the writing is on the wall this time.  But like Jason says,  it’s not easy having her home either – although we love being here together as a family – Ava is exhausting to care for and neither of us are getting much sleep.  So if the hospital is the best place for Ava, then it’s where she needs to be and maybe it will be better for us too in the long run.

So I’ll just pack and trust, and hope that they can figure Ava out and that we can get that wiggle room back!  Like always, we’ll keep you posted!