Baked Jeans

Baked jeans and a bunch of things, that’s what this post is made of.

Back in the olden days when the weather was warmer in March and April we would often take a drive to our family cottage for Good Friday.  (Our church rents so we can’t hold a traditional Good Friday Service.)  It was usually our first view of the cottage after the winter, and we would stop for breakfast on the way up and just have a great day.    So this year we decided to do that again, but thought we would also spend the night  –  for fun.  Ha.   But it wasn’t all fun,  because for some reason although we KNEW there was still snow at the cottage, we didn’t exactly prepare for it.  So the kids played and got soaked playing in the slush without snow-pants and ended up having to spend the rest of the day indoors.  We had packed light since we were only staying for one night which meant the kids had to change into their pj’s and we may have all gotten a little cranky from being stuck inside for the rest of the day.   And then what is a mom supposed to do when faced with a bunch of wet jeans in a cottage with no washer or dryer?  Well she bakes them in a convection oven at 250 degrees for 10-15 minutes.   Who knew baking jeans would be so easy, or so smelly (that’s ditto for the socks, but WAY stinkier).

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Backing up now to three weeks ago – I had the opportunity to go to SickKids and share our Ava story with a group of people taking a palliative care course.  It’s such an honour to be asked to go and Jason and I both feel it’s just a small way that we can give back to the hospital who gave so much to Ava.  It’s always a pleasure to be there and meet with some of the wonderful people that we got to know while we lived in Toronto.  It actually really makes me miss my time in Toronto and I look back with a little bit of longing for those days when Ava was alive and we saw our Toronto people regularly.  But now I’m just happy for any opportunity to see them and I also have to thank my dad who comes with me because we had such a great day together and I love the company and I love not having to drive in Toronto in my not-so-small vehicle.

And now backing up all the way to the end of March (backing up seems to be a common theme here) – we had 3 inches of snow early one morning on a day that warmed up pretty quickly.   Will, Sarah and Sophia headed out the door as soon as they could and built these 7 snowmen… one of each of us.

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snowmen

But since it warmed up so quick, the snowmen starting melting and first we saw daddy topple, then I bit the dust, and noses all fell off and it wasn’t pretty.   That afternoon the girls and I went and ran some errands, and when we came back, Sophia got out of the vehicle and ran into the yard yelling, “Is Ava still alive?”   I laughed out loud.  Oh dear sweet Sophia, I wish, I wish Ava was still alive.  But as for your baby snowman, it may have died.  Life can be harsh. 🙂

And staying on the subject of life being harsh, yesterday at church they mentioned a conference coming up next weekend at Harvest Oakville by Paul Tripp called When Suffering enters your door.   He says that we shouldn’t be surprised by suffering, it’s a universal experience for all humanity… and they showed this clip – which I HIGHLY recommend because it quickly explains how Jason and I were able to have the hope that we had in the face of our suffering.

Which brings me back (one more time) to a quote that I found when Ava was sick which I blogged about back then as well, …

In the mid-16th century Francis Xavier (1506–1552), a Catholic missionary, wrote to Father Perez of Malacca (today part of Indonesia) about the perils of his mission to China. He said,

The danger of all dangers would be to lose trust and
confidence in the mercy of God… To distrust him would
be a far more terrible thing than any physical evil which
all the enemies of God put together could inflict on us, for
without God’s permission neither the devils nor their
human ministers could hinder us in the slightest degree

And a great verse from Romans 8:18

 For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.

Suffering if something that we all will  experience at one time or another, but praise God that through Christ, it never has to be without hope.

Amen!

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.

Another machine…

So as of last night, one more machine was added to the already crowded area around Ava’s bed…

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An EEG machine. Yesterday she was getting episodes of high blood pressure combined with her heart beating faster which made them wonder if she was having seizures… not huge seizures, but still, never something a parent wants to hear! So they hooked her up to this EEG machine to be monitored for 24 hours.

And so far so good, I was there just now when the dr’s did their rounds and they haven’t seen any sign of seizure activity in the past 12 hours that it’s been hooked up, praise God. And because of this monitoring, she is now off the muscle relaxants which means that she’s moving a bit and twitching today. She is still getting alot of morphine, but at one point she did get quite agitated so they gave her a sedative. But it is still nice to see her move a little instead of her lying there so incredibly still all the time.

And I think today they are going to give her a tiny bit of food – colostrum that I’ve pumped for her – just to get her started, not enough for nutrition. Of course this will all come from a feeding tube, but at least the food is coming from me which make me feel like I at least have a small part in caring for her, it really is so strange having a new-born daughter but not being able to do anything but stand by her bed and talk to her and touch her hand and her head – except now I can’t even touch her head!

Anyway, we are still thankful that she is here. Thankful for all the small mercies that God is providing. And even though I miss my kids like crazy and still find it hard to be in this situation, we are getting through with God’s help, minute by minute, hour by hour.

And soon that darn EEG machine will be out of here so I can at least touch her head again!