Catch-up

I haven’t blogged in a few days,  it’s been busy here, so now I’m grabbing a few minutes to catch up.

So yesterday – Sunday – we dedicated Ava at church and it was so wonderful to be there with her and share a bit of our story.   And we felt really blessed to see all our family and friends who made a special trip to come and support us and we just want to say thank-you again to everyone who came… it meant so much.  And to our church family who hasn’t stopped praying, we are so glad you finally got to see our little Birdy and we so appreciate all your prayers and support as well.

And then Saturday, Ava was 5 months old, amazing!   And as of today she weights 12 lbs 8 ounces!   She’s growing slowly but surely.   And thanks to the fact that I’ve cut all dairy from my diet because of Ava’s cow’s milk protein intolerance, she hardly has any reflux these days.    And even though we would have liked to see Ava get her Glenn surgery this month, I know it’s all in  God’s timing and maybe the longer it takes to get her cath the better the pressures in her lungs will be.

Friday unfortunately, I had the wind taken out of my sails – sort of speak – when I found out that two of the children that had been on 4D – the Cardiac floor at Sick Kids –  the same time as us had passed away.   Their families had also been at the Ronald MacDonald house with us and it’s really tough any time a cardiac child dies.   I think what struck me the hardest is that I watched one of the moms just giving her all trying to help her 2 year old daughter get well,  only to have it not be enough in the end.    And that’s a lesson I need to learn, that with Ava –  or any of my children for that matter – no matter how hard I work,  my best efforts aren’t going to keep anyone here that God has called home.   He already has a plan for each of my kid’s lives just like Psalm 139 says in verse 15 & 16

My frame was not hidden from you,
when I was being made in secret,
    intricately woven in the depths of the earth.
16 Your eyes saw my unformed substance;
in your book were written, every one of them,
    the days that were formed for me,
    when as yet there was none of them.

So I’m not being morbid, I just have to trust God and take each day with Ava and each of my children as a gift… even on the days when they don’t feel like gifts. 🙂

And then Thursday we saw Ava’s paediatrician who is just a lovely person and she was really happy with Ava and her progress, hurrah!   Now she did warn me not to take Ava to malls or anywhere else teaming with infection (hospitals?  haha)  but when I told her I was taking Ava to church on Sunday she said it would be OK.  And we kept Ava out-of-the-way on Sunday and people were careful not to touch her and hopefully that was enough to keep her from catching anything.

So I feel all caught up now… with my blog at least.   Even though it feels like I’ll never be caught up on sleep,  housework or laundry,  at least I can feel caught up in something!

We are here till we grow…

So it would seem that this little monkey…

ava

Needs to grow into her shunt!  She finally had her echo-cardiogram this morning and praise the Lord her heart function looked good – which is such a relief because that had Jay and I  really worried.

But now that they have ruled out that her heart isn’t working too hard, they’ve basically said that she is sending too much blood to her lungs because the shunt is too big – too big on purpose because it won’t grow and she will – and that is why her oxygen saturation’s are at higher levels than they would like to see for a baby who has had the Norwood heart surgery.

So the consensus today on rounds was that we have to stay here at the hospital until Ava grows into her shunt!    Oh man!  So does that mean days, weeks or months?  I have no idea.  Thankfully another cardiologist came by this afternoon and said that they really don’t want to hold us hostage here, and that if Ava is doing well in all other areas, that they would discuss her case with the team and hopefully we might be able to go home,  even though we would not meet the  protocol for sending home single-ventricle baby’s.  So all we can do now is pray and make Ava eat… lots.

And that’s not easy because although her tummy handles my milk just fine,  she can’t gain weight on it because it doesn’t give her enough calories and she uses up more calories than a normal baby would just by living.  And unfortunately her little tummy just can’t handle the extra volume she would need to make up for this – when they have tried to increase her volume she just throws it up, even though she gets fed over an hour.

So they supplement my milk with condensed formula for calories, but she doesn’t tolerate that well either,  so she still hasn’t gotten up past her birth weight of 8 lbs, even though she gets fed every 3 hours around the clock by her ng tube.   And it’s breaking my heart, but she’s having a hard time even sucking on a soother without gagging and retching so please pray that we can get over that hurdle so that she could start to feed orally… the occupational therapist was here again this week trying to get Ava to take a bottle but didn’t get too far, plus it really tires Ava out.

But her little vocal cord is starting to heal because Ava is getting louder every day, so hopefully we can do a feeding study before we get out here to see if Ava can drink non-thickened fluids without aspirating  – and that would open the door up for breastfeeding.   So many hurdles to jump over.

Thankfully she is doing well in other areas, and its so cool that Ava is now meeting our eyes!  My parents came down last weekend and my mom was so kind and stayed with Ava over-night and almost all of the next day to give me a little mini-vacation with my family and when she was here Ava started meeting her eyes and responding!   She was looking right at my mom when she snapped this pic…

avabyoma

And it’s so cool to see Ava start to meet these milestones, even though her prolonged stay in the critical care probably set her back bit.   But back to my parents, it was so great having them here last weekend and then we were blessed even more this week when friends came to  visit us yesterday and today.   We can’t tell you how much we enjoy these visits.  Our kids love seeing friends and Jason and I love it and it just makes us feel closer to home.  Just like when people send us emails or even leave comments on the blog,  we find  it all so encouraging, even though we might not always find the time to respond back.

So we are just going to get into a groove and take things day by day and pray that Ava will grow!

Thankful

So rather than blogging, I’ve been spending my time wracking my brain trying to come up with a new blog name.   Just in case you hadn’t noticed, in about 7 weeks or so this blog name won’t be accurate (see previous posts)  as there should then be just the 7 of us.   But that name just doesn’t have the same ring to it,  plus it’s already taken.  So if anyone has a good blog name idea they would like to share with me, please do so and put me out of my lame-blog-name-ideas misery.

But back to this post now that I am actually writing…. we’ve been enjoying the fall here.   I of course love the cooler weather (keeps me from swelling) although when the forcast for this past Thanksgiving weekend showed very cold and rainy – I was worried about it being a little too cool, especially since we had been planning on spending the weekend at the unheated cottage.   But Jay and I always cook our goose by telling the kids days in advance that we are going, and even though we half-heartedly tried to talk them into an exciting weekend at home, it didn’t fly and  so we went.   Not to mention the rest of Jason’s family was going to be there and if we didn’t go we’d miss out on Thanksgiving dinner – and that certainly wasn’t going to happen.

So we went, and were chilly occasionally, but for the most part had a nice relaxing time.   And the turkey was amazing and the pumpkin pie was all that it should be so the cool weekend was completely worth it.  We even got some beach walks in and attempted a picture of all four kids together.  Since our expectations are always low we are never disappointed when everyone isn’t looking at the camera and smiling.  We take what we can get. 🙂

For Jason and the boys this was their second weekend away.   The weekend before they and a family friend Patrick headed up to a canoe/camping trip up North at a place Patrick has been going for over 20 years.  He took his boys when they were young and Jason used to go with them occasionally, and now it’s so cool that Jason and our boys are going.

I had no desire to go camping in my condition, but when I saw the pictures I was a bit jealous,  it was so beautiful up there…

And the boys absolutely loved every minute of it.    And I was so glad that they could spend some quality time with their dad before things get all crazy here and our family gets separated for a while when we’re at the hospital with new baby.

And how are we doing other wise?   Pretty good everything considering.

I’m still dealing with my own failings of not being able to see my own limitations and so I know I’m trying to do too much, and when I do I get tired and cranky.  But there really seems a lot to do!   Being pregnant with number five at my age is no joke in itself apparently.  But God is being faithful and He’s giving me grace to get through each day and even though the first week of December is coming fast, with His help I know I’ll be ready.

And this is the time of year to be thankful… and there is a lot to be thankful for.   I’m starting to realize that in tough times thankfulness and gratitude are great ways to keep one’s heart humble and joyful even when it’s tempting to focus on the problems and feel all discouraged and down.

I was encouraged this weekend when a friend who just went through a tough time had the same thoughts and shared them with me – that it’s so much better to focus on the support and comfort that God has provided during a rough time instead of just being focused on why God isn’t fixing everything for us.   And I think that’s the key for us too.

And there are so many things to be thankful for!  The list would go on and on – and actually I’ve just inspired myself to start a thankfulness list for when I get discouraged – nice!    I’ll definitely be putting on this list that I’m truly thankful for a God who never leaves us or forsakes us.  I’m thankful for so many amazing friends who have come along side me to do all sorts of things, like take care of my kids,  help me pitch my junk,  garden for me, provide emotional support and even shop with me!   And Jason and I are also blessed with four healthy kids and parents that love us and support us no matter what.

How can I not be thankful?

And focusing on God’s goodness towards us does feel much better than focusing on what is going wrong.

And so I can truly say today that even though I’m still sad and it’s not fun to be faced with a baby that’s going to be born  neeeding so much medical attention,  there is still joy and I’m very very thankful for all the good things in my life.

There is room for friends

I will be the first to admit I don’t have much talent in the home decorating arena.  I need help picking out paint colours – as in professional help – and with help from friends and family I can kinda limp along in the placing of furniture etc.  I actually think Jason has better taste than me.    But, I like to read the home-decorating blogs and I like to keep up on what the do-it-yourself people are up too, and slowly I’ve been getting some ideas of my own.   I never said they were good ideas, but they were ideas none the less.  Couple all this with the fact that I don’t like spending money on home furnishings unless I have too and well, the end result is that our home is comfortable and nice rather than elegant and refined, but I’m fine with that.

And then once in a while I look at some area of my house and know that something needs to be done.  Since I’m getting a little braver about tackling these projects I just dove (or is it dived?) right in to updating this shelf…

Look at it, oh so cluttered, oh so random and hadn’t been painted in years.   Then we  had these sliding glass doors that made it look like it belonged back in the 70’s.

So I primed it…

Painted the back a contrast colour just a bit darker than our walls and did the rest white…

Then I tried hard to put only things back that I liked….

And even though it’s just me trying to place things nicely on shelves, I believe it’s a huge improvement and it definitely doesn’t look as dated.

And best of all, it contains one of my prized possessions, which I grew up loving and my mom was so nice to give it to me a while back…

And in the end, that’s really why I want my house to look nice anyway –  for friends  – and that’s all I care!

Our wonderful (Not Thanksgiving) Weekend

We really enjoy going to the cottage in the fall, but when we went last weekend it was more with the fond hope that the weather would still feel like summer.   It didn’t, until the day we left which seems to be the way things roll at the cottage.     We had taken a few extra days to make it a long weekend and I know that I remarked more than once that if we had brought and cooked a turkey, it could have passed for a Thanksgiving weekend no problem.  The weather when we got there Wednesday night was downright chilly and Thursday was cold and very windy,  but the light was beautiful when the sun managed to peek out from behind the clouds.

When I ran back into the cottage after taking this shot my feet were almost numb, because weather or no weather I refuse to wear socks and shoes on the beach and look like a renter even on a Thursday in mid fall when there isn’t a soul around.  That’s my pride, or maybe it was just me being lazy and not wanting to find my flip-flops.

By the afternoon it had warmed up a little more and we were able to spend more time outside, the kid played in the sand…

suitably bundled of course, and later that night Jason had fun with the camera…

I do enjoy a good landscape photo…

Seriously the clouds and the lake really made us feel like we had suddenly been transported into mid October. So we were thankful when the wind calmed down Thursday night and it was great weather on Friday to do some hiking.


Just a daddy hiking with his girls…

And someone obviously worked very hard to make this bench out of sticks along the trail and as it was a bench made out of sticks on the trail, it had to be sat on by the children and as their parents we dutifully took the picture the situation required..

As an aside, someone was joking the other day about not having pictures of the youngest child. But I have to admit that in all honesty, I probably have MORE pictures of Sophia than of the other kids. Maybe it’s precisely because she is the baby and I feel I have to capture every second before she grows up on me just like the rest of them.

On Friday night we were joined by some good friends with their four kids and their pop-up trailer.   They soon settled right in…

The kids love having other kids to play with and they kept each other entertained for the rest of the weekend which was nice for the parents!

So that was our weekend. Nothing too thrilling or exciting, just a fun relaxing weekend with family and friends not eating turkey and pumpkin pie, which is too bad,  because that would have been delicious.

Canada Day Weekend Highlights

Hight-light posts are the best… a picture really is worth 1000 word right?  So here are the high-lights from our 4 day weekend at the cottage.

Jason and I were so proud… Erik can water-ski! And not only did he get up the second time on Monday, but he also mastered deep water starts and he can get up on his own, way to go Erik!

Our good friends Collin and Carrie from Michigan were up at their cottage as well with their two kids who are William and Sarah’s age. These two were as thick as thieves. From the moment they see each other until it’s time to go, they are joined at the hip…

I was worried about Sophia not enjoying her first real boat ride in the Mastercraft since she likes to play things safe, but she really didn’t seem to mind even at full throttle, here are the girls waiting for their ride…

And when it was over, she didn’t want to get out, she wanted to drive!

Erik and William and I were supposed to go for a bike-ride, but 10 seconds into the ride Erik’s tire popped, so instead we drove to the ice-cream stand. I think the neon-coloured ice-cream tasted just the same…

We were also happy to spend some time with Liam and Aidan, it’s fun to watch the kids be together…

Sarah had a friend too in Dana. It’s neat because this is now the third generation of friends!

Erik made a new friend with the girl next door. She’s 9, she’s a riot and they had a great day together…

And as always lots of work was done by Grandma and Grandpa with some help from dad. Although this one looks ready I can’t honestly say she was that helpful…

And of course we celebrated at night on the beach with some fireworks. Here’s someone waiting patiently…

Happy Birthday Canada, we had a wonderful weekend celebrating!

Fall Wrap-Up

Well I haven’t given up on blogging yet!  It’s been a while, but since fall is over, I’ll do a quick wrap-up of the rest of our fall.

After the Wyoming Fair, we had a really fun afternoon at Appleland with some homeschooling friends of ours.  I of course forgot to take our camera so no pics, but the kids loved picking apples and eating them, and even though Sophia got stung by a wasp, it was great fun and a perfect fall day.

Then on a Sunday afternoon at the end of September we took the kids to the Sunrise Corn Maze.  We took friends of ours from Church and had a great time together.

The maze itself became an adventure when after walking for 30 minutes, we reached the half-way point and so continued on obviously looking for the way out,  however, every path we took led us right back to the middle of the maze!  We tried again and again, and still came back to the same point.   Corn mazes are fun, being stuck in them, NOT so fun.  Especially when your darling 15 month old daughter decides she wants to walk, is obviously is too slow, has to be carried and starts crying.    Erik by that time was ready to get out on his own and our friends have 2 older boys who felt the same way, so then comes the time when we realize that the four boys aren’t with us anymore.   We didn’t panic, but figured that the boys must all be together and safe and so decided to forget finding the exit and we would just back-track instead to the start.   But something didn’t feel quite right, so Jason went back just to make sure that the boys were OK and didn’t he end up finding Erik – at the ripe old age of 7, map in hand, happily wandering the maze by himself,  quite confident of finding his way out on his own.   When we finally came out the ‘entrance’ – William and the  two older boys were playing on the pedal go-carts, and of course they informed us that we hadn’t come out the exit like they had… oh corn mazes!!!

But after the maze, there was plenty to do there… the girls really enjoyed the ‘cornbox’ which we had to eventually drag them out of.  It was a another fun, fall afternoon.

Then we were off to the Ilderton Fall Fair with Grandma and Grandpa and Aunt Lija and Uncle Mike and our cousins Aiden and Liam on the first of October.  Again, no camera, but even if I had brought the camera, it was the rainiest, coldest, yuckiest day of the fall and even though we still enjoyed the parade (the kids got lots of candy) and went to the fair afterwards (brave souls that we were) any pictures would be of us huddling and freezing our buns off…  so those pictures were probably best left untaken.  We DID however put our furnace on for the first time when we got home after that!   But still a huge thanks to Grandma and Grandpa for a great time!

Then it was off to the cottage for Thanksgiving, and we were blessed with a beautiful weekend and we had a wonderful time.   The boys even ventured into the lake it was so ‘warm’ out – crazy cannuks!!!!

You just have to love any beach time that you get at Thanksgiving!

Then October 22 was the fateful day that I was diagnosed with ulcerative colitis.   The following week was a painful blur, but I am recovering and will go into more detail another time.

Then of course was Halloween.   Jason and Erik carved the pumpkin to look like Larry-boy from Veggie-tales…

And then Jason took a plain Buzz lightyear costume and jazzed it up by making the best wings to go along with it.  We also made great boots and the costume was complete.    William wanted to be Luke Skywalker and Oma made a fabulous tunic for Will and just by adding some things we had at home, his costume came together and looked great as well.  And Sarah was happy in her tiger suit (my fierce little girl), and sweet Sophia was a poodle, again in costume modified by Oma.  They had a great time,  even Sophia, who happily wandered around the neighbourhood with us, they ate all their candy in a week and everyone was happy.

Phew… so that was our fall in a nut shell.  Busy, happy, tiring.  With some good times and low times,  but now we are starting to look forward to Christmas and I have a little boy here who asks every day… “But when is it going to snow??????”