Still looking good!

Our little Ava is still looking good!    I took her to the cardiology clinic here in London on Friday and after the Nurse practioner and cardiologist looked at Ava on the outside and the echocardiogram showed them what they looked at on the inside, they agreed that she looked good, hurrah!  It’s always good news to hear.

And Jay and I certainly have no concerns with her right now…  even though she does have a cold, poor baby.  I didn’t really think that we would make it through all of March without getting something, especially considering our weather has not been all that it could be – and the other kids keep bringing things home.   Thankfully Ava seems to be tolerating this cold OK.   It’s all upper respiratory and even though it makes her cough and gag and sometime makes her vomit up her milk, she’s still growing and still gaining which is awesome.

And the count-down to her catheterization is on… I’m not sure how we are feeling about that so we can talk about that later.

Talking about Ava looking good, my mom had some fun last week and after giving Ava a bath thought she would give her a new hair-do…

Avahair

Oh our little Birdy – you do have an awful lot of hair!!!   And did you notice that her jammies have birdies on them?  I love it.

And we are so thankful that God is being so gracious to us and keeping her well.    I know that He is holding Ava’s little heart in his hands and that we can keep trusting Him every day.   So we praise Him alone that Ava is still looking good!

There and back

So yesterday we made the trek to Toronto again.  Except this time it was Ava and I and Jason’s sister Lija (Lija – the cool Latvian way to spell ‘Leah’ ) and we left Jason and the kids at home.  It worked out better that way so Jason could be in town for Sarah.  Plus, Jason is the morning king.  He wakes up at 6 am every day to give Ava her 6:00 am feed, he then gets the kids out of bed,  feeds them, packs their lunches and walks them to the school bus.  Every day.  He rocks.

Maybe someday I will venture to Toronto alone with Ava, but at this point I’m too tired to drive myself, plus I  enjoy the company and the help of having another person there with me.   So thank you Lija for taking the time off of work and taking us!  And we had a great day together and Lija was very good about me dragging her all over the hospital and talking to what seemed like a million people, she is a very patient person.

And the good news is that the Toronto team was very happy with Ava.  Every time they see her in clinic they remark that they’ve never seen her looking so good and it makes me so happy and grateful to God for His goodness.  And I’m happy to report she’s gaining weight and growing, which is fabulous.  She’s only in the 3rd percentile for weight, but for her height she right around the 15th percentile.   It’s a little surprising that she is a good height considering she has Turner’s, but we’ll gladly take it!    And her echo looked good as well.  It’s funny though because they couldn’t get a good look at Ava’s shunt during the echo, and the tech even had a doctor come and try…  and I came very close to offering to show them how I’ve seen other tech’s do it, but I refrained.   I’m positive I could do it, but if I couldn’t I would feel very silly. 🙂

Now, the cardiologist that is part of the Single Ventricle Team we saw yesterday was a bit pessimistic.   He didn’t think Ava’s heart function had gotten worse, but he mentioned that it hadn’t gotten better either.  I was surprised that they hoped it would get better and asked him if they really expected that,  and he just said that a few kid’s hearts do.   He also threw out the word ‘transplant’ which I found a bit strange as we are nowhere near having to think about a heart transplant for Ava at this point.   I know that for single-ventricle kids, a transplant is often the reality, but according to the Children’s hospital of Philadelphia, there are thousands of people in the 20’s and 30’s living with single ventricle hearts, which is amazing news, although even then they often have to deal with other health problems.   Thankfully Ava’s cardiologist –   Dr. Jaeggi – also came by yesterday and he was much more optimistic and pleased her with echo results, which was reassuring.

And so walking away from that appointment I felt that over-all,  things were positive.  And we don’t have to go back to Toronto until April 23 for Ava’s pre-cath appointment.  Her heart catheterization is on the 25th of April and the dr did say that if the catheterization went well and they feel that the pressures in Ava’s heart are low enough,  and she is strong enough to with-stand surgery, that booking her next surgery in May might be an option.   That would be amazing!  And they also said that no matter what happens with Ava’s heart, she will be so much better off after the Glenn Surgery  (You can read more about all three of the surgery’s here) and it will just be wonderful to have it done before summer.

So that was our Toronto trip yesterday.  We left at 6:00 am and returned at 6:40 at night, a long day, but a good day and it’s so good to know we don’t have it do it again for a whole month.  And I’m always greatful when we can go there, and then turn around and come back.

Amen. 🙂

A Canadian Blue Solution

Sorry I haven’t blogged in a while.  This weather has been so cold and snowy that I just have wanted to sit under an afghan and read novels (not that I have) but still, I  just haven’t felt the motivation.  But tonight as I’m up waiting to feed Ava I though I would jot a few things down.    And I’m happy to say, we are doing good.  It’s surprising what at first seems so daunting, can now seem so  ‘normal’ .  We’re getting into a good grove with Ava and although caring for her is  still intense and time-consuming, we are doing OK.  And she is such  a good baby.    She did have a tough go last weekend and the first of the week – she was so upset and refluxing all the time like crazy – but I finally figured out that her daily dose of baby aspirin was probably hurting her sensitive little tummy, so now she is getting the aspirin after her morning milk and she is doing so much better… praise God.

And talking of prayer, I know that God’s people have been praying because Ava has been nursing again!   In the past couple of days she’s nursed quite a few times a day, which is wonderful.   And she’ still only nursing about 5 minutes at a time, but I’m not concerned with amounts right now, it’s more about her being comfortable and enjoying sucking and orally feeding like I mentioned in my last post.   So thank-you for lifting us up before the Lord, He has heard your prayers!

And I don’t think that I’ve mentioned that April 25th is the date of Ava’s heart catheterization, where they will go into her heart to test the pressure to see if she is ready for her next surgery.  So please pray with us that all will go well and that she will in fact be ready!!

And I’ve also been meaning to show you a pic of our very own IV pole that Jason made us.  The first night we took Ava home we needed a pole to hang her gravity feeds on as we hadn’t gotten an actually IV pole yet.  So Jason ran to the garage and came up with this…

hockeyivpole

Yes, the hockey stick IV pole.  Such a Canadian blue solution.  Don’t you love how men solve problems?   And it’s been great and it was even strong enough for Ava’s feeding pump to be attached to it.    It’s awesome.   Actually last week we Last week we had a real IV pole delivered, but Jason told me if we used it that he wouldn’t talk to me… haha.  Seriously though, I’m too attached to my hockey sticks.

So I’m just thankful that we made it through another day and that Ava looks so amazing and is doing so well, even though she does seem to fighting off a mild cold.      Here is a pic from a few weeks ago sans ng tube – as I had accidentally pulled it out…  my sweet little Birdy.

Ava

And we are off to Toronto again on Tuesday for another appointment with the Single Ventricle  Team at Sick Kids and Ava will get another echo,  but this time I have no fear that they will be keeping us and I’m not packing a single thing, ha!

So thanks again for everyone’s support and prayers, we are truly thankful.

Home sweet sweet home..

Oh it’s so good to be home!

Yesterday Jason and I went back to Toronto to Sick Kids for Ava’s appointment at the Single Ventricle Clinic.   It was a bit of a heavy trip I had been told the night before to come prepared to be admitted.   Even though a small part of me wouldn’t mind being back at the hospital so the nurses could care for Ava all night and I could sleep (oh sleep!!!) , I started realizing as we were driving there just how much I was enjoying being home again.    Maybe because I’m slowly starting to feel like a mom to my other kids again and it’s been so great sleeping in my own bed.   Then there is how much I’m enjoying reconnecting with friends and family and I’ve even been out shopping once in the past two weeks.   Just once – but still!   So once again, I had to surrender everything to God, tell Him once again that I trusted Him even though I was so sad at the thought of going back and went and packed my bags.

The reason they had talked about having to admit Ava was her lack of weight gain,  which has always been slow.   And so because of that had also mentioned the possibility that she might need a g-tube so we could start doing continuous feeds to help her gain weight.     However, even just looking at Ava yesterday both Jason and I thought she looked so great that we were sure that they wouldn’t keep her.  And sure enough when our nurse practioner saw her, she thought she looked great too!    Especially the little bit of chub that Ava has put on her thighs,  there is something about a little bit of chub on a baby that just makes my heart melt and nurse practitioners of single-ventricle baby’s very happy.

Anyway, Ava had the full work-over at the clinic,   blood work, an echocardiogram and a thorough check up by our nurse practioner and it turns out that Ava is actually gaining at a rate of about 25 grams a day!    Which is not as much as they would like, but since she also grew 2 cm since she was discharged, everyone was happy with her progress and there was no talk of admitting her.

Now we still have put in a requisition for a g-tube.   Just because Ava’s ng tube probably isn’t going away anytime soon and a g-tube would probably be safer and better in the long run.  The good things is that as an out-patient it will take 5-6 months to get it and the hope is that by that time she won’t need it anymore and we can just say no.   I hope that in 6 months she will be able to take all of her food orally, and so we can say no, at least that  is my dream and my prayer!

And then there is our little Birdy’s heart.   Unfortunately the echo we did yesterday, compared to the one we did just before we left the hospital, showed that her heart’s function is decreasing, which isn’t good.    It’s just that with her current configeration her right ventricle is over-worked as it has to pump blood to two places,  her lungs as well as her body.   And like I’ve mentioned before,  your right ventricle is just not designed to pump to your entire body,  it’s smaller than the left side as its meant to pump blood solely to the lungs.   But in kids like Ava with hypo-plastic left heart – where the left ventricle is non-funtioning  – they have no choice but to try to make the right side do it all.

So they are keeping a close eye on her heart, and hopefully if the function doesn’t decrease more,  they will seriously look at doing her next surgery sooner than later, as the next surgery will take some of the pressure off her heart.    She is booked for another echocardiogram in London next week and then in a few weeks we will be back to Toronto where they will do a catheterization on her heart to see if she is indeed ready for the next step.    Now, if her heart function decreases and she’s not ready for the next surgery, she will be admitted and be put on some heart medication to help her function and then we wait.   Which is not the route we want to go, so please pray that her function doesn’t decrease anymore, we need her heart to stay strong.

So.   As the cardiologist in London said to me last week, nothing with these single ventricle baby’s is easy or simple – and we can agree with that.  But we just take things day-by-day.  We still pray for strength everyday, and still just enjoy Ava day by day.  And it isn’t hard to enjoy her… she is such a sweet baby whois us usually awake and happpy, or sleeping, which she does quite a bit of the time.

Ava

And as for coming home last night in the dark, all I can say is that I’m thankful that Jason is such a good driver and could navigate the snow covered roads and the lack of visibilty with far more courage and tenacity than I ever could!  And once again God was faithful and heard our prayers and kept us safe.

So now as I prepare for another night where I get to stay up and enjoy it more than I should,  I can still say thankfully – I’m just happy to be doing it here at home, sweet home!