A cowgirl and a cupcake

Thank goodness last week’s festivities are over!   We had alot of fun as a neighborhood again this year, getting together to eat and carve our pumpkins the night before the big day.   We produced such works of art as this…

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and this, except it wasn’t so fuzzy in real life…

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And the next night we enjoyed having a cowgirl and a cupcake in the house….

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Although they did come back a little wet and bedraggled thanks to the rain.  However Sophia has never been one to put herself out for anything – even candy –  so she didn’t last that long and was very happy with her tiny haul.  Sarah got a bit more candy, and the boys (dressed up in Star wars characters) ended up getting a ton… but soon problems arose.   Sarah was sneaking candy.  And who can blame her?  I know it’s wrong and we didn’t like it,  but she was a lover of candy before her diabetes, so I would have rocks in my head if I believed that this issue was going to get better after her diagnosis.   And it was frustrating to have her sugar’s all over the place, even though we were trying hard to allow her treats within her target carb limits.

So on Saturday afternoon I traded the girls a new little stuffy for their candy… yahoo,  what a coup!  But there was still the boy’s candy and they were away visiting my parents for the weekend.  But I got them today with Lego sets that we had left over from last Christmas – and now I don’t have to worry about Sarah finding candy to sneak.  The boys got to keep a tiny bit that they promised to hide – they better!  But at least the bulk of the candy is gone and that makes me happy.    Super happy for us and for Sarah and trying to keep her healthy.

On the weekend, we got to enjoy a different kind of sweetness…. a precious new baby courtesy of my younger brother and his wife.

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We all enjoyed holding her and getting our ‘baby fix’.    I think sometimes people worry about me around babies, but the truth is that I don’t want other people’s baby’s, I want my own baby back!!   And I can hardly begrudge anyone a healthy baby, when I had four healthy babies before Ava.  So I just enjoy getting snuggles and then I enjoy giving baby’s back to their parents when they start to cry.  🙂

And speaking of our baby, Ava would have been 11 months today.   It’s hard to believe, and it’s kinda strange actually.  And I’m not sure how this is supposed to work, if she is forever going to stay a baby in my mind, or if I’m supposed to ‘allow’ her to grow up.  But whatever it is,  we miss her and wish that she was going to be with us to celebrate her birthday next month.

When I was in Toronto a few weeks ago they gave me Ava’s final bravery bead… a bereavement bead, a  little butterfly.

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I probably mentioned bravery beads way back, but at Sick Kids a child can collect ‘Bravery Beads‘ where they get a bead for every blood draw or test or poke or clinic visit.  It’s a neat program and although Ava never understood her beads, I did and it’s just such a testimony to what she went through in her short life.

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And I didn’t even do one for one on the beads… I would do one blood work bead for every 10 she got, but still, the meaning is quite clear.  Our strand was quite humble compared to other warriors at the hospital, but I know that I will treasure them forever.  And now the strand is complete and to be honest, for all their colour and cheerfulness, there is quite a bit of pain in that string.  And I praise God that Ava is free of all that pain and knows no more pokes or tests in her heavenly home.

Revelation 21:4  He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.”

Praise God, what a hope we have.

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.

Her chest is closed!

We are very pleased to report that they closed Ava’s chest today just before noon and she seems to be doing really well.  She’s not out of the woods yet – between 12 and 24 hours things can get dicey – but we will just continue to pray pray pray!!

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Here she is looking a little more normal again which is such a relief!   And today has been a much better day over-all,  praise God.

Oh my little Ava – please Lord – please keep her steady over-night and let her chest stay closed!!

Alot to be thankful for…

Wow – so if you have read the previous post (which I recommend) you will see that my dear friend Christa has posted our most recent news – that our unborn baby has a serious heart condition called critical aortic stenosis. 

What a shock is just putting it lightly.

After 4 healthy babies to find out news like this was the last thing we expected.   I expected to have the same kind of pregnancy as always, straight-forward and uncomplicated.  But just like getting pregnant with this little one in the first place, God clearly has other plans for us.  And even though this road ahead seems rocky at best,  God has been our strength through this time, and to show you just how faithful He has been, I think I will show you a time-line of the events that transpired since we found out our news Tuesday morning.

Tues, Aug 14 – After making our way home from the hospital and being prayed for by a wonderful friend who is also a pastor at our church, we made our way back up to the cottage, bewildered and numb.  My mom had been staying with the kids while we were away and although it was nice to be reunited with our family, we knew we had some big decisions to make.   We called our contact from the cardiologist we had just seen to tell her we wanted to go talk with the cardiologist at Sick Kids hospital in Toronto to find out more about the procedure that could be done on the baby now.

Aug 15 – 9:00 am We receive a call telling us that the Cardiologist in Toronto – Dr. Jaeggi –  was very interested in seeing us, as he thought he could do something for our baby, and could we possibly come in that afternoon or the next morning to meet with him.  As we had to make arrangements we opted for the next morning and started making arrangements to leave that night.

Aug 16 – 8:00 am, we were waiting in Sick Kids hospital in Toronto for an echo-cardiogram
9:30 – Met with Dr. Jaeggi after the scan who is the head of the fetal cardiac program.  He explained the procedure, how they could go in now and do a balloon dilation on our baby’s aortic valve.  This would in theory open up that valve, which could then save her left ventricle, which was already showing signs of damage from trying to pump blood through a closed valve.   If her heart continued to be damaged, she would end up with Hypoplastic left heart syndrome, which means she would be born with a non-functioning left side of her heart at birth – obviously NOT good.

10:00 am- With God’s peace flowing through us, we told him that we wanted to go ahead with it.  It was the baby’s best chance at saving her heart,  and even though the procedure comes with a high risk to her, we felt that if it were her time to go, that was in God’s hands not ours.  He was surprised that we had already made our decision,  and told us that the next step would be to go over to Mount Sinai hospital to go see the OB that was part of the procedure team.

10:30 am – We started waiting for the OB.   We waited and waited and waited…

12:15 pm –  Finally saw his nurse!  She wanted to do an ultra-sound to measure the baby’s weight to see how much anaesthetic she would need for the procedure, she told us she thought the procedure would be today – we were surprised, but still not really thinking it would happen that quickly as we had been told it might happen Friday or Saturday.   She explained that the  biggest concern was that the baby had to be in the exact right position for the procedure – and this was as the baby was doing flips and somersaults while she was trying to get her measurements.   And she also said they sometimes they had to wait hours for the baby to co-operate.  We started praying then that God would put his hands on this busy baby and position her correctly when the time came.   I had to stop eating and drinking and she told us we would be waiting again.

12:30 – 4:30 – Waited and waited and waited some more… we were very bored and very keyed up, not a good combination. 🙂

4:30 pm – Finally got called to see the OB!  Dr. Ryan who is the head of the fetal medicine unit at Mount Sinai – started the ultra-sound on me, right away said she was in the right position, and we should go ahead with the procedure now!   Praise the Lord!!!!   We sent out the word to pray that she would stay correctly positioned.

4:45 pm – People went into action like you have never seen, Jason went down and got me admitted, the anesthesiologist was called, the cardiologists from Sick Kids that help with the procedure were called over, nurses prepped, I changed into a hospital gown praying and praying that the baby wouldn’t move.

5:00 pm –   Dr. Ryan checked the baby again, was worried she was going to make a fool of him as she had moved, but we kept praying and trusting God and when I got on the bed in the procedure room and they checked me again, she was in a great spot and still asleep, or at least not doing flips… my IV went in and a sedative given, they prepped and talked and made final adjustments to her position by externally manipulating her, something they could easily do since my previous 4 children had made things nice and roomy. 🙂   God is good, He held her there, what an incredible answer to prayer.

5:24 – Jason left the room and they started – they punctured my belly with a needle and gave the baby her anaesthetic and pain killers and then started the procedure, going through my belly again with a needle that had a wire and balloon inside…. putting the wire into her aortic valve, inflating the balloon and drawing it back through so that her valve would open.

5:33 pm –  The procedure was done!  9 minutes!  Incredible, absolutely amazing!  The cardiologist did a scan and could see that the valve had indeed opened, God is so good!

10:30 pm – Jason and I were walking back to the hotel room, praising God and rejoicing that it had been done already, what incredible timing!!!   I had been given something so that I wouldn’t go into labour, but I had God’s perfect peace that the baby would be OK.

4:30 am – Woke up in the middle of the night and felt the baby moving again!  She had come out of her anaesthetic, how amazing and wonderful, she was still alive, praise God!

Friday, Aug 17 – 9:30 am – We met with another OB at Mt. Sinai for another ultra-sound and everything looked great.  The baby seemed fine, blood flow to her brain was normal, and best of all that valve was open and they could see blood flowing through it – something they hadn’t been able to see before.  Now we just had to start waiting to see if that left ventricle will heal and shrink like they hope it will.

11:15 am – We were on our way back home!  With such a sense of joy and peace that God had been so gracious to us,  had wrapped His loving arms around us and orchestrated everything so perfectly that even the OB that morning had said it had all been surprising that everything had come together so well.  Dr. Jaeggi was supposed to be on leave, but had come in that day for us.  Dr. Ryan did this after his shift was over and the nurses even stayed late for us.  God brought them all together for His plan and purpose and no matter what happens from here on in, I will never forget that incredible display of God’s mercy towards this baby and us.  

So now we are back up at the cottage, but this time we are able to relax and know that whatever comes next we have so much to be thankful for.   We will be going up to Toronto again on Friday, so please keep us in your prayers as we hope to see some progress with that ventricle showing that healing has begun.

We want to especially thank our friends and family for their support this past week through emails and texts, thank-you, your encouragement was wonderful…
Thanks to my mom for staying with the kid while we were in TO…
Thanks to Jason’s parents – his dad for making hotel arrangements for us and paying for them..
Thanks to our church family for praying without ceasing for us…
Thanks to our friends who stepped in to help my mom with the kids at the cottage…
And the dr’s and staff at both Sick Kids and Mount Sinai hospitals, who although they didn’t even know us, sprang into action to do what they could for this little unborn baby girl.

All we can say now is that GOD IS GOOD and even though our journey is just starting we know we can trust in Him completely!!!!