A Little Stress Relief

We got the best kind of stress relief this weekend, we went home!    After my “episode’ on Friday, or as my dear darling husband likes to call it, my cry for help (oh haha,  he’s so funny) I was more than ready to go home and look at something other than an inside of a hospital.    It was hard to leave Ava, but I knew that we were leaving her in the care of great nurses, and I also knew that if I didn’t  get a break soon I wouldn’t be any good to anyone.

So we left Saturday morning after I went in to say good morning to Ava, and we got home in two hours which is amazing timing.    And it was great to sleep in our own beds and spend some time with friends and family.   Even though when we drove in the driveway it looked like our house hadn’t been lived in for years… a week of rain and warm weather and every bush and shrub on our property decided to grow like they hadn’t grown before and things looked rather neglected.  But it gave Jason something to do and thanks to his hard work, things look much better now.

It was good being home, but weird and sad in a way too.  First off, there were reminders everywhere of Ava and I found it tough going to sleep the first night with her play-pen still up beside our bed.    Jason actually suggested the next day we should take it down and I did and that was a good thing.   Especially because if Ava does get a heart we will need it here at the Ronald MacDonald House, and if she doesn’t get a heart and doesn’t come home,  well…. I actually put quite a few things of hers away this weekend for that very reason.

Erik, Will and Sarah had a wonderful time with Oma and Opa this past week and to be honest, I’m not sure they wanted to come back to us.   But my parents brought them home yesterday afternoon and it was great to be together as a family again.  And for a little while it did feel like we were a normal family just enjoying our daily normal life.   But then we had to pack up and head back to Toronto and I’m so grateful we made it here tonight just before the rain started and the flooding began… God’s timing is perfect!

I did brave the wild, wet, weather and walked over to see Ava at Sick Kids after we unpacked.   I don’t usually like to walk in a thunderstorm, but you know you are a cardiac mom when you pray that you don’t get struck by lightning… but if you do get hit, you hope they can at least donate your heart. 🙂  I guess that’s horribly sad.   But when you are waiting for a heart you start to think in weird and wonderful ways.   Actually, the rain was so bad, that when I walked in to the hospital,  they were asking people on the loud-speaker to move their cars as the underground parking was flooding… that was surprising.  But apparently Toronto got 74 mm of rain tonight,  which is just a little less than their usually monthly average, so as you can imagine it’s pretty wet here.

And then Ava.   She is doing OK,  but we are a little concerned for her as they told me that she started sweating  all over today.   And it’s not just a little bit of clammy forehead like she is apt to get, it’s all over soaking sweat.  So Ava’s doctor was concerned and started her on antibiotics in case she is getting sick and they are keeping a close eye on her like always.  When I was there with her tonight, she wasn’t crying, but not really happy either and her sweating was a bit disconcerting.   She still prefers to be on her CPAP than off, and I also thought that she looked puffy tonight, so we will see what tomorrow brings.

This is not an easy life and although I long for ‘normal’ in some ways,  I would rather go through what we are going through and still have Ava with us.    And I’m so grateful for a few days to recharge our batteries, a chance to go to our own Harvest church and worship with our family there,  and experience even just a little stress relief.     Thank you Lord, we are very grateful.

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!