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!

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5 thoughts on “Home sweet sweet home..

  1. Hi Jason and Lisa and family, Just to let you know that we’ve been following your blog since before Ava was born; just never posted anything…. But after praying for you all for so long and “walking alongside” you through the blog, you’ve become a part of our day-to-day lives! Thanks for sharing so personally and honestly, both the struggles and the joys. It’s a wonderful encouragement to hear how God is carrying you through each and every day. We are thankful for the good news of growth, and will keep praying for strength for that little heart! With love

  2. I so enjoy reading your blog and how you are all doing.
    We continue to pray for all of you and are blessed by how your faith is seeing you through.

  3. Thanks for all these updates, Lisa! It was was great to have a quick little look at Ava when I saw you at the hospital. I’ll continue to pray for her and all of you.

  4. So glad to hear that you are all back home safe & sound! Although you didn’t get all the favourable news you hoped for, you did get some. Your little, precious Ava is growing – you can tell from her photo! Sending you all bg hugs & much love! Marlene & Carm

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