Thank you!

Once again, thank-you to everyone for your prayers and support right now.   And we also wanted to shout out a huge thanks to Jason’s sister Lija’s co-workers at the London Courthouse…   they had a fundraiser to help us out with staying at the Ronald MacDonald house and we were super blessed! !!!!  Thanks guys!!   We were really very honoured and the money will be a huge help, so thank-you.   There have also been others who have contributed financially to our journey along the way and we are so grateful.  It’s humbling to be at the receiving end but we accept it all graciously for Ava’s sake,  it’s all for our sweet baby.

And that sweet baby does seem to be a bit better.  It’s crazy that they still don’t have any things conclusively wrong with her – in terms of infection that is.   Clearly her biggest problem right now is her her terribly functioning heart, and so any infection, or even a cold or stress just escalates things to a point that almost tips Ava over the edge, as her Doctor’s so nicely put it.

Wednesday morning things seemed very dire and the outlook for Ava did not look good at all.   She had spiked a fever of 41 degrees and her heart-rate was over 200 beats per minute and there was no way her heart was going to be able to sustain that rate for very long.  They had to start Ava on CPAP to take some of the pressure off of her heart  (it’s a mask on her face that forces pressurized air into her lungs).   Unfortunately, but not surprisingly she HATES it so she has had to be sedated since yesterday morning so as not to upset her too much.  Yesterday they also put Ava on a cooling mat that seemed freezing to me, but thankfully she tolerated it and it brought her temp right down which helped bring down her heart-rate as well.  They also increased her heart med – milrinone – to the highest dose to help her heart but that is only supposed to be a temporary measure and they plan on weaning that back to the middle dose that she was on earlier this week.  She’s also on a low but constant infusion of morphine to help keep her calm and to keep any pain away.

But as of today her heart rate is back in the normal range and Tylenol seems to be keeping any fevers at bay.    She came off the CPAP for a few hours this afternoon, and then again tonight.         Tonight when she came off of CPAP, they had left the sedation wear off so I cuddled her and then when she had enough I put her in her chair, and she was actually bright and alert for about 15 minutes.   But she wouldn’t smile.   If Jason had been there she would have smiled as she always smiles for daddy, but she was being stingy with me.  🙂

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She’s kinda puffy still as she is retaining some fluid – always the fluid – and still really sleepy.  But at this point things are looking like she will be staying this side of the cliff that she seems to live way to close to the edge of… and I’m glad because each of these episodes seem to age me 10 year at a time.

In all of this we are so grateful to all the dr’s and nurses who have been so kind and caring.  One of our nurses who is also a believer painted the verse for Ava from my last post on a little plaque that now sits in her crib, and one of the residents who had seen that verse came by and shared she was also a Christ follower and prayed for Ava today which was so encouraging.   And both of our parents dropped everything to come down yesterday to be with us and that was so kind and the kids seem to be handling this OK as well.

And our biggest thanks is to God – our refuge and our fortress in times like these.  He alone gives us the strength day by day…

Psalm 91

1 He who dwells in the shelter of the Most High
will abide in the shadow of the Almighty.
2 I will say to the Lord, “My refuge and my fortress,
my God, in whom I trust.”

Amen.

This little turkey…

So this little turkey… one day she has me thinking that she is not long for this world, and the next day she is happy and has more smiles than I’ve seen in a long time…

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Her uncle John and aunt Erin came to see her and she couldn’t stop smiling… (thanks guys for taking these pics!)

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I can’t tell you how wonderful it makes me feel to see her looking so amazing and so happy to boot.

Partly I think she’s doing better because they are figuring out her fluid balance and they are giving the right amount of lasix as the right time.  With her heart functioning so poorly, it’s  just not able to move fluid properly, so she needs the help removing it.   It’s very clear that when Ava is fluid over-loaded she doesn’t feel good, but when she’s balanced she feels better!

She still is needing oxygen as you can see, and I wouldn’t say that she is getting ‘better’, but she is rallying and just to be able to keep her happy and stable would be a blessing.

Isn’t God good?   Each and every time when I feel like things just can’t go on,  God proves again that this Ava story is NOT done and He still has a plan for her.   Our job is to keep trusting and holding on through the ups and downs, and just wait and see what God is going to do.

Thank-you once again for all your prayers and support.   God knows that without it, we just couldn’t do this journey.

Oh my little turkey Ava, I love to see that smile!!!

Some pink in her cheeks

I’m happy to say that the blood transfusion yesterday did Ava some good and there is some pink in our baby’s cheeks again!    And I just want to say a huge thank-you to all of you who donate blood.  It’s one of those things that you don’t think about until you need it, but then you realize just how important it is.

So now Ava is pinker, but she wasn’t much happier today.  She seemed uncomfortable, but she does have an IV in her foot right now.   Even though she has a picc line, the picc line is being used for her heart meds (milrinone) the picc only has one lumen (port) so had to get an IV for her blood transfusion yesterday.    Sometimes IV’s are fine and sometimes they just really seem to bother her, so hopefully this IV stays open as she needs it for a test tomorrow and then we can take it out.

And Ava is also off her oxygen!  She’s been slowly weaning herself off of it for the past couple of days and so we turned it off later this afternoon.  It’s nice to get the prongs off her face and having her breath room air again, praise God!  See how much better she looks… definitely not as white.

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And isn’t that dolly beside Ava a riot?   This afternoon our floor’s Child Life worker took Sarah and Sophia off for a play and they had these dolls that she gave to the girls and they got to decorate them and then they played hospital.  Well as I was told later, Sarah’s dolly had a breaking heart… and then the dolly had cancer and got a few needles.   Sophia informed me that her dolly didn’t have a heart, but that was OK because she didn’t need one. 🙂  Oh my girls, it’s so sweet but sad at what comes out in their play.  (The child life worker and I agreed that the cancer thing is probably something Sarah picked up from living here at the Ronald MacDonald House).

When I tucked Sarah into bed tonight she had her doll and she said that the doll was better now but still had to get a needle every day.  I asked her if the doll had diabetes,  but she said the doll doesn’t have diabetes, just something similar.   Oh my Sarah!!!

We also saw Grandma today as she drove in for a quick visit and Jason and I met with the transplant team’s social worker which was very informative, so the day went by really quickly which is always good.

So even though Ava isn’t quite back to her old self, I’m glad that she is looking better, and hopefully tomorrow will see even more improvement.

We’ll keep you posted!

Happy Birthday Sophia!

Sophia turns 4 today, Happy birthday Sophia!!!

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She’s growing up so fast, our little sweetie pie.    Our sweetie pie with an iron core.  She’s sweet but tough and it’s a good thing because it’s meant that she can transition between our house and Oma’s and the Ronald MacDonald house no problem.   She’s fine with whoever can take care of her,  as long as they love her and can stand her constant chatter… hahaha. 🙂

Last year when I expecting, she  had to transition from my ‘baby’ to my ‘little one’, but now I think that we have to transition again to just our little girl.   Oh Sophia, we love you!

And talking about transitioning, we’ve all settled in well here at the Ronald MacDonald House.  Although I was a little disappointed yesterday when I found out that Ava would be moving back into her own room at Sick Kids, and out of step-down where a nurse was always in the room with her.  She does’t need that level of care now that’s not on the IV heart meds, but it was really nice to know that she was never alone,and so I didn’t feel guilty when I came back to the RM house to spend time with the family.

Now I will start sleeping at the hospital again so Ava won’t be alone which is OK, it’s just another change.   And since Ava typically does sleep through the night, if she has had a good day and settles well,  I will come here and sleep at the RM house occasionally.

And it’s a good thing Jason and I weren’t asleep last night at 10:15 when the fire alarm went off here at the house.  Even though the alarm is VERY loud, we had to wake all the kids up and take them outside until we got the all clear (someone had probably just burnt popcorn) and so that was a bit of an adventure.

And miss Ava is doing well… but probably not 100% percent.   She is coughing more again and so today will get her third chest x-ray since we arrived on May 10th and will get yet another nasal swab to rule out any new infection.  I hope it’s not anything new; but if it’s not viral, that means the cough is probably related to her poor heart function and that is not good either.

Today we had our first introduction meeting with the transplant team, so as of tomorrow Ava will get some blood-work and tests to start the process of listing her.   This really seems surreal, and it also means a complete change of care, from the dr’s and nurse practioners that we’ve grown to know and trust, to a completely new team, but again thankfully we’ll just do this one step at a time and I’m sure this new team is just as wonderful.

Well I must go to spend the rest of the day with my family and our little birthday girl.

As always, I’ll keep you posted!

This treasure in a jar of clay…

This sweet little treasure in a jar of clay…

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Ava who is our treasure… created by God perfectly, just the way He wanted her.

Before we had Ava, our Pastor Norm preached a sermon on 2 Corinthians chapter 4, verse 7…

But we have this treasure in jars of clay, to show that the surpassing power belongs to God and not to us…

And Norm explained that we are those jars..  we are frail and easily chipped and cracked just like the terra cotta flower pot that he dropped on stage to surprise us all – and we are even easily shattered.   I know that I can certainly relate, but it doesn’t matter that we are frail, because God can use us and work through us.  And then He gets the glory, AMEN.

And for His own purposes, He chose Jason and I to be parents of another little jar of clay…  our sweet Birdy, who already has more chips and cracks than most others.

And a month or so ago it hit me, that I’m a mother of a child who has a single ventricle heart and who someday may need a heart transplant and it made me sad… she’s not going to just ‘get better’ like my other kids and I started feeling guilty for even having her and putting her through all that she went through… and it was a very low time for me, a bit of a valley.  And as I was coming to terms with this, a kind friend sent me an email in response to hear that I was feeling down.  She wrote this..

My heart aches for you, but also rejoices in your faith and that I know God knitted Ava together in your womb — He did not make a mistake —  He made Ava as he planned. He also chose you to be her mom — He chose you with purpose. He will not abandon her or you.

And it still makes me cry.  Ava is just as she is supposed to be.  And even though she’ll always be my little chipped jar of clay,  she still has an eternal soul and I pray that I’ll be able to share with her this truth that Christa found for her… (from Pinterest of course)…

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And I think I can speak for Jason as well when I say that we wouldn’t trade Ava for anything, or even trade this experience of having her and going through her surgery and recovery.  It’s been quite the journey so far and tomorrow we start another as we come home and learn to care for her at home, but once again we have faith in our almighty God.   And I think that we can sum up this whole hospital experience in these words from later in the chapter of 2 Corinthians…

So we do not lose heart.  Though our outer self is wasting away, our inner self is being renewed day by day.  For this light and momentary affliction is preparing us for an eternal weight of glory beyond all comparison.

So we can say, to God be the glory, and thanks for giving us Ava, just as she is!

So tomorrow…

Tomorrow is the day… the day of Ava’s feeding study which I’m so nervous about.  For this feeding study they will give her a bottle of sugar-water and barium and take an x-ray video of her swallowing while taking the bottle.   This will show them whether or not her vocal cords have healed sufficiently for her to be able to drink thin fluids and not aspirate.

If the test shows that she is swallowing properly then that will allow her to start to learn how to breastfeed and she would also be able to start taking my milk from a bottle –   yahoo!  And hopefully that would lead to eventually getting rid of the ng tube!!!

And if her vocal cords haven’t healed and she still needs thicker fluids, well, I don’t know what we will do.    The hospital won’t thicken breast-milk because they have deemed the thickener needed to do it  ‘unsafe’ and so that leaves formula that has to be thicken with rice cereal – and the combination of those two hurt Ava’s  tummy so much and just make her want to throw up.

So please please pray that Ava’s vocal cords will have healed.  I so need to trust God with this and not stress because I know how I will feel if the news isn’t good.  So I’m not going to worry, I’m just going to trust a faithful God and know that He he will carry us through whatever the results may be.

And talking about removing her ng tube,  the other day when we replaced it, I snapped some pics of  Ava without it…

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Oh my beautiful girl!!!   I just want that darn tube gone for good… oh Lord, please give this mamma patience!!!

So now to change the subject, we’ve been in Ward 4D now for a month!   And as I was walking back to the hospital last night after having dinner with Jay and the kids, I was kinda shaking my head at how adaptable us human’s really are.    It almost seems a bit normal now to be here and live at the hospital.   The nurses and other people here are even starting to feel like family, except others keep getting better and leaving, while we are still here, which is a drag.

I do truly  miss living with my own family, and I can’t wait for us to get home, but I guess knowing that this whole hospital stay is just a short moment in time compared to all eternity is really helping to get us through.   And instead of focusing on how less than ideal the situation is right now for our family to be separated   we just try to keep focusing on that point in the future when we can look back and say, “Hey – remember how God so faithfully got us through all those months at Sick Kids?”   Thankfully the days just fly along here and its crazy that  Jason and I came to Toronto December 3rd to have Ava, two months ago.  So much has happened since then that I feel like I’ve lost all sense of time.

So please pray again for tomorrow.  I am going to need a huge dose of God’s grace to sustain me if the news isn’t good – but again – her vocal cords have to eventually heal, but patience can be difficult when you feel you’ve already been waiting for such a long time.

I love how I can share all this on my blog and know that through it we receive so much encouragement.   Thank-you all so much for sticking with us and travelling this journey with us!!

We are here till we grow…

So it would seem that this little monkey…

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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…

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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!

I held her!

Oh, what a wonderful moment!   I got to hold my baby yesterday, after 2 weeks and 6 days, I actually got to hold my sweet Ava.    And even though she’s not used to being held, she didn’t mind, snuggled right down and went right to sleep.

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And even though it might look like I’m nursing her, I’m not…  to bad really.  The little monkey does have chylothorax and so is on special formula which she is getting right now through her NG feeding tube.  I wish this wasn’t the case, but with everything else going on, I don’t have the emotional energy to worry about.  Small blessings I guess! 🙂

But holding her was so wonderful,  even though we still had to juggle cords and tubes.   But it’s possible to hold her now because she’s off the ventilator!    They removed Ava’s ventilator Christmas Day and so we got to see her face with just her feeding tube in and the kids came and she was awake and it was nice, we were actually all together on Christmas Day – even if it was just for ten minutes.

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Terrible pictures I know…  we forgot our good camera and the kids were crazy, but it was nice we got a pic of them together for Christmas.

So now moving forward, Ava is off the ventilator but still has to spend quite a bit of time on CPAP, which stands for Continuous Positive Airway pressure, which helps keep everything in her lungs open.  So although it’s another tube, it’s removable and she’s spending time off it each day.  They also removed a line that was in her neck and she’s losing one of her drain tubes today.  It’s so exciting to see these things being removed, and seeing her get back to looking more like a normal baby.

And on the Sarah end of things, we are doing well.  She is taking her insulin like a champ and we will spend more time tomorrow at the diabetes clinic for more training.  Now that we’ve gotten over the first hump, it’s time to learn more about it.

So that’s where we are at.    And we are actually feeling calm these days which is a nice feeling.  The other night Jason and I were really stressed, but then realized that we hadn’t spent any time together,  (one of us is usually here at the hospital while the other is taking care of the kids), and so much has been going on with Sarah’s diagnosis and wanting to be with Ava and then adding in Christmas – so our stress levels were super high.  But we know now that we need to take time each day to talk with each other and pray together and sleep is always good too.

It’s still a day-by-day journey here, but praise to God, we are getting through by His mercy and grace.  And every day is one day closer to going home!!  I can’t wait!

More Easter pics…

Warning!  This post is pic heavy… but I don’t think the grandparents will mind. 🙂

Easter celebrations actually started a week ago Sunday when we celebrated birthdays and Easter and my side of the family.  All three of my brothers and their families were there and it was great to have everyone together.   Here are some of the cousins waiting for their dinner…  some and not all… there are 12 cousins in all!

And here is my littlest niece on my side of the family, but she won’t be the littlest for long.  It’s very exciting but my middle brother and his wife are expecting number 2 any day.  And more babies is great in my books!

And then yesterday afternoon we were off to Jason’s parents for the annual Easter egg hunt graciously put on by the Easter bunny (a.k.a. Grandpa and grandma.) 🙂

Another great Easter come and gone with just the chocolate left, but it’s disappearing fast as well!

Just some extra pictures…

so just some extra pictures I had lying around from our vacation…

here’s Sophia on one of the rare moments she had to herself and she was great, she happily played in the sand by herself…

until I got the camera out and she started to pose, the little monkey!

I always buy the kids a new notebook for the cottage for them to draw in… here they are one morning, all busy… I love the memories they make

Gotta love being able to sleep anywhere!

Auggg! My kids are drinking pop! But it’s a cottage treat, and at least there’s no artificial colour or flavour. 🙂

I wish I could remember why Will has that lone tear, but I don’t. It’s just him after a moment…

Sarah and her buddy Jay just hanging out…

just a cute little beach boy, our friend from next door…

his sister enjoying light-sticks on the beach at 10:00pm with our kids when all good little children should be in bed…

I love this pictures – the clouds are in the same part of the sky that spawned the Goderich tornado later that day…

And I’ll leave you with two sunset pictures which join the 100 we already have, but the sunsets at the beach just never seem to get old…

Thanks for looking!