Where my heart is today…

Today my heart is with the Syme family as they mourn the loss of their sweet daughter Evynn…

Evynn

A four year survivor of hypo-plastic left heart,  and a receiver of a heart transplant that so sadly didn’t end up saving her life.

Their blog:  A journey to a Whole Heart

Please join with me today as I pray for this family.

Once again…

My flesh and my heart may fail, but God is the strength of my heart and my portion forever. Psalm 73:26

 

Nailed it

I am very aware of all my failures in life, they are too numerous to count.  But on the bright side some of my failures make me laugh and hence should be shared.  Take this for example, Sarah’s birthday cake… if I was going to try to make it as beautiful as Martha Stewart’s vanilla cake, then I can definitely say I nailed it.  lol

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Isn’t it just beautiful in all it’s sloppy glory?   I think I’ve known since I was 10 that you shouldn’t ice a warm cake, and that is especially true if you want to ice it with a concoction of pudding and whipped cream, which I found out apparently just melts on a warm cake.    Will I ever learn?   But it did taste good, so I suppose it redeemed itself.

So yes, Sarah did turn 8 a few weeks ago and it was fun to celebrate with her and appreciate her for all her gifts and abilities.  And just because you are 8 doesn’t mean that hair-brushing is a priority in life –  I mean really – it’s such an insignificant thing.  Maybe it will be a priority when she is 15?   Good thing she can clean a bathroom, sew and do lots of other thing really well to make up for it.

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And if that cake I made for Sarah’s birthday looked scumptious, then I’m sure you’ll appreciate this concoction…

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“Since when do chicked-peas, boiled eggs, peas, beets, avocado, blueberries and pears belong together in a blender?”, you might ask.    Especially as they were soon joined by joined by yogurt, milk and olive oil.   And since I can tell you that yes, they were blended together your next question might be,  “Who in the world would eat that mixture?”

Well this sweet little person would…

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Remember our little friend Aleeda who we met at Sick Kids?  She received a heart transplant July 2013 and is doing so well.  She came home from the hospital with a g-tube, and she was being primarily fed by that, but rather than push formula into her tube, her mom Tania opted instead to make her real food blends “purees” that mimic the nutrition in a formula supplement.  These are so much better tolerated, as in when Tania pulled the formula and started feeding purees to Aleeda, she stopped puking every day.    And Aleeda has thrived on them and since her g-tube was pulled will actually eat them orally, smart little girl.  I got to help Tania and made a few batches of them for the freezer,  but Aleeda is doing so well that she is almost eating all real food now.  It’s so wonderful to see her progress, I find it just amazing.

Alleeda and her sister Britton came to play with us one day while their mom was at the hospital with their new twin sisters.  My girl’s love Aleeda and her sister Britton , we just don’t see enough of them…

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And since Sophia is the baby of our family now,  it’s good for her to spend time with children younger than her,  I’m afraid that Sophia enjoys being our baby a little too much, but I can hardly blame her.

And now it’s Valentine’s day today and winter trudges on.  Thank goodness I can kick the kids outside to enjoy the snow…

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So I can enjoy some peace and quiet haha.      I do try to enjoy the winter as well, but more often than not it seems I’m enjoying it inside by drinking coffee and looking out the window.  I just venture out to take the pictures.

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Like this one of the moon… see, you need winter for pictures like this.

So even though my cakes aren’t winning any awards and winter is still here with a vengeance, we feel so blessed on this Valentines day to have a loving family and friends to enjoy it all with.

God is good!

A new commandment I give to you, that you love one another: just as I have loved you, you also are to love one another. By this all people will know that you are my disciples, if you have love for one another.”

John 13:34-35 

Amen!

 

 

 

 

 

 

 

512 Nights…

Last Saturday I got this text from my friend Tanya, Aleeda’s mom….  “512 nights at Ronald MacDonald and now we are all home!”    It just blew me away that it had been that long that they had lived in Toronto,  and seeing those numbers was a bit shocking.   Our family was only away for 6 months and that felt like forever, so times that by 3 and then you can see how Tanya would say that coming home really isn’t coming back to “normal”… it’s kinda like coming back to a completely new life again.    And even though Tanya and Brian’s journey has been far from easy… far far far from easy… I love seeing how their faith in God has given them incredible strength to face all the challenges and hurdles of having a  baby with hypo-plastic left heart who needed a heart transplant, and how through it all they have stayed sane and stayed positive.

Now the journey is still far from over.  Aleeda is still being fed through her g-tube and is on quite a few meds, so she and her baby sister are going to keep Tanya very busy, but I know that God chose wisely when He gave Aleeda to Tanya and Brian and I hope that someday Tanya finds a way to share her story for everyone.

The girls and  I actually went and saw them today – we are so fortunate that home for them is only 40 minutes from here… hurrah!  Sarah had said that she just wanted to see Aleeda smile and she got her wish…

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Doesn’t Aleeda look amazing?    Sarah also spent alot of time holding the baby like she had been doing it all her life…

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But to be honest, seeing pictures of Sarah holding babies kinda makes Jay and I sad.  There are so many pictures of Sarah holding Ava and we just wish that it was still Ava that she was holding… sigh.

While we are on the topic of Sarah… Jason and I attended a class last week to learn more about using an Insulin pump as a method to control diabetes.  We learned more about how the pump works and they also talked about how we can begin to start the process to get Sarah pumping if that is something we want to do.   Here is a handy dandy illustration of what a pump looks like…

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Basically the pump is a little digital device that you wear on your belt, which pumps insulin through tubing that is attached to you.   Having a pump would be great for Sarah because it would allow her to eat what she wants when she wants, just like the rest of us.   But the downside of that is that you are kinda married to the pump in the way that it’s always there… it never leaves your side, literally. 🙂

Right now we manage Sarah by giving her injections of insulin, which is restricting because she has to eat at scheduled times and has to stick to a strict set amount of carbohydrates for each meal – but in between snacks and meals we don’t really have to think about her diabetes.    So I guess it’s one of those things where you have to weigh the pros and cons and figure out what works the best for you and your family.   I’m fairly certain that just because of the flexibility we will be perusing the pump, but that means now we have to figure out which pump to get!   So if anyone has any suggestion for us, we’ll take them!

Other than that, it’s just business as usual around here.  I am pleased to report that with some help from my friend Rachel,  I finally manged to tackle the room in our basement that held a lot of our belonging we had brought home from Toronto.   I thought I couldn’t sort it all because some of the stuff was Ava’s and I was pretty sure it would make me sad.  As it turns out it didn’t make me sad, and I realize now it wasn’t Ava’s stuff that was bothering me, it was just the mess and chaos that was bothering me!   I do feel like I am close to whipping this house back into shape and getting things all organized so that it can be functional for us.  But it’s taken a long time because life is busy here with 4 children plus diabetes.

Today is actually 3 months since Ava died.  Three months already.  And then in a few weeks it would have been Ava’s first birthday…. December 4…. Ava Day. 🙂   We haven’t quite figured out how we want to celebrate it, other than the kids want to decorate our house with birds and probably eat cake.  But I hope that as part of ‘Ava Day’ we can find a way to reach out to other families who are struggling with a baby in the hospital.   We will see what happens and I will keep you posted.

And we just wanted to thank people once again for your continued prayers and support.  Even after three months we still miss Ava like crazy, but are truly thankful to be home and I think Tanya would say the same thing, especially after 512 nights away.

A trip to Toronto

It’s Friday already!  And I really thought that I would post this post sooner… but apparently that didn’t happen.   So it was already 5 days ago when I took a train to Toronto to visit my good friend Tanya who I left behind in Toronto when we came home in August.   I’ve written about Tanya before and I’m so blessed to call her a friend.  We grew quite close as we walked the same path of being mom’s to our girls waiting for heart transplants and she was (and is) an inspiration to me and a huge source of knowledge.   She also makes me laugh alot… which is good, laughter is always good.

Anyhow, I hadn’t seen Tanya, or her daughter Aleeda who received her new heart August 2nd, or Tanya’s three-month old baby daughter Britton in almost 2 months –  so thankfully Jason encouraged me to go.   And I’m glad I did as it was wonderful to see them again.   Aleeda looked amazing and it was so nice to be able to hold her and cuddle her and see her happy, and she grew!  Since she has received her new heart she has grown so much and filled out, and her hair is longer and she looks like a new kid.   And I was also so pleased that she remembered me and wasn’t mad that I hadn’t visited her in so long.   And baby Britton is getting big and is so sweet!   She was my therapy baby when she was a born – holding baby’s for me is the best therapy I could ever get – and I even got to babysit her briefly while I was visiting this time.   I felt like a nice sort of aunt.

Here are the girls in their stroller, the sweetie-pies. I love how Britton is on the bottom shelf…

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Now even though Aleeda looks amazing, she is still in  hospital, which is rather frustrating.  Especially considering the fact that she has been in hospital since July 2012.  Can you just imagine?  Tanya has not lived at home with her husband in 15 months and it will still be a while before she gets all the way home.  Hopefully soon Alleeda will soon be released to live at the Ronald MacDonald House, but until her feeding issues get sorted out, she is stuck in hospital.  On Tuesday morning Aleeda did get a g-tube, so that ng tube you see on her face is no more – which is always nice to see.  But please please pray that God would intervene here and heal Aleeda’s tummy so she can go home.   My dream is that their family will be reunited and home by Christmas,  please pray with me!

I came home on Tuesday and I made it back just in the nick of time to watch William run in the cross-country finals.  And I when I mean just in time, I mean that I had to run and bum a ride of a stranger (another mom whose child was running) to make it there 2 minutes before the race started – but I saw him start and finish – and William came in 6th!   Out of all the grade 3 boys in the city,  running  a kilometer and half.   We are so proud.

And then Wednesday was back to real life for me, but I felt really unsettled and a bit down.  It didn’t seem that terribly hard to go back to Sick Kids when I was there, but coming home again made me realize once again just how much I missed Ava.    But it was more than that…  it was seeing families who we knew while we were there with Ava, and who are still there,  as well as meeting new families who have sick little one’s and even seeing Leo’s family as they waiting for him to come out of surgery.     It made my heart ache for these families who have to go through so much.    I can’t tell you how much strength we got from our faith in God as we walked through our journey with Ava.  It covered us with peace and joy even in the darkest times, and now I’m committed to pray for the families that I’ve met who are still walking through it.

But I know that losing Ava has changed me forever, and has even changed my view of the world.   I know now that I have no control over life, I know that bad things do happen and things aren’t always going to turn out as I want.  But am I worried, or discouraged or even depressed?   No I’m not. 🙂     Because I have a personal relationship with the one who has control over everything, the same guy that allows these seemingly bad things into my life for a reason and when I get to heaven He is going to show me how these things all turned out for His glory.   Praise God,  He holds it all in His hands.

I love this verse… here it is again…

2 Corinthians 4:16-18

16 So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. 17 For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, 18 as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

Amen.

Friends and Birdys

This week is over!   And it’s been a good week – but a busy week and I’m glad it’s the weekend.     The kids have a full week of school under their belt and they all did pretty well.   Sophia loved school on Monday, but cried a few times on Tuesday.  Wednesday morning I had to put her crying on the bus, but I didn’t feel good about it, so at 9:30 am I drove to the school to see how she was.  My plan was that if she was happily playing that I would just turn around and go home.  But her class was still outside and I could see that she was holding her teacher’s hand and when she saw me I could see that she had been crying, so she came home for the day.

When I asked her why she was crying  Sophia said that water kept getting in to her eyes and making her cry…. you know the irritating water that finds itself in your eyes. 🙂   I told her that the water was probably her tears, but she was pretty adamant that it was just the water… and missing mommy.   If things had been different for us, I honestly think that Sophia would have gone to school happily this year and not looked back.  But this year was different and Sophia clearly has some anxiety and separation issues and I don’t see any reason to push her.  I know she will get comfortable eventually, but for now we are just happy to let her take her time.   This morning when she didn’t want to go to school we told that today was the last day of the week and then she would get 2 days off for the weekend.   And her response was, “Two days?  Not eight?”   No, not eight Sophia, little turkey.

So back to our busy week –  Tuesday, Jason and I had a wonderful day in Toronto.  It was so good to go back and be in the place where we spent most of our time with Ava.  And it’s funny how things can change in a year… last year at this time we were making day trips to Toronto for Ava’s echocardiograms and my high-risk pregnancy clinic visits and we didn’t know a soul.  And now when we go it’s like we are going to visit our large extended family.

Jason and I weren’t sure how we would react going back up to the 4th floor at Sick Kids, I hadn’t been up there since the day after Ava died.   But but when I stepped off the elevator so many memories of Ava flooded in that I started to cry.   Thankfully before we even made it to the Ward we started meeting people we knew and after getting some hugs and starting talking I couldn’t cry anymore. 🙂  Can I just say how much I love our 4D nurses?   And it was so cool that all the nurses we had the last few day of Ava’s life were there on Tuesday and it was so good to see them again.   They gave such love to Ava and so much support to Jason those last days that they will always be in my heart.    In fact, I feel like all the staff of 4D have become part of our family and we are so blessed to have them in our lives.  And they make me laugh, and they helped keep me sane through those tough times with Ava, so I will be going back to visit them for a long long time.

We also were able to spend time with Tanya and baby Britton and we saw Aleeda!  Oh sweet Aleeda.  She looks amazing and her hair has grown a ton since her transplant and she has grown too – but she is still tired and still isn’t tolerating her feeds and so she is still in the hospital.   Please keep her in your prayers, and pray for her parents Tanya and Brian too as they just want to see progress for Aleeda so that they can see home in their future.  You can imagine they aren’t looking forward to spending their second Christmas in the hospital, and it’s very very tough right now to not see huge improvements after Aleeda’s  heart transplant.  But I know that they know that God has a plan for Aleeda and their lives, and they will continue to remain faithful no matter how hard it gets.

We also went back to our other home-away-from-home…  the Ronald MacDonald House.  And we saw the staff again and met with friends, and it was wonderful to reconnect .  And it’s strange, because we lived there for so long that you might think being back there would feel weird, but it doesn’t.   It just felt very familiar, and I guess it felt just like being home.   Our home away from home.

And then we were back at our real home with our kids and to make the week more interesting we had Sarah’s diabetes clinic Thursday morning.  She had to go to clinic every three months to make sure everything is OK, and I’m happy to say that she is doing great and I think I will give it her own blog post, so stay tuned. 🙂

Otherwise, we are doing OK.   We all have times where our hearts just ache and I don’t think that will ever go away, but we have each other for comfort and I praise God for our family.    And our friends.  Two of my dear friends brought this too my door yesterday….

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A sweet birdy necklace for me to wear to always remember my sweet little Birdy.    And it has five leaves to represent our five children and even looking at it now makes me teary.  It is a beautiful gift.

Which reminds me of the first verse I ever learned… James 1:17   Every good gift and every perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadow due to change.

We know that God is the giver of every good gift and once again, even in this busy week – we’ve been blessed.

Hard to hear…

This morning when rounds came they were still being led by doctor who the head of the heart transplant program, and she knows her stuff.   She was the one who decided earlier this week that Ava should get the heavier diuretics twice a week – but since Ava’s kidney’s aren’t responding that well anymore, she now needs to receive diuretics every other day.   Anyway…

While they were talking on rounds, they decided that since it’s clear that Ava is not doing well,  they are going to try to start her on another heart drug tomorrow – Dobutamine.   It’s like Milrinone,  and if it works, the dr said we might be able to buy Ava another 4-6 weeks waiting time for a heart.    This news kinda broke my heart.     Jason and I know Ava isn’t doing well, we know her little heart is just getting worse and everyday and I can see the effect of that… but hearing an actually time-line was hard.

And it doesn’t mean the doctor knows for sure that’s all the time she has left,  and we understand that.  But I think they are just looking at Ava’s downward trend even in the past few weeks, and since it has been going downhill pretty rapidly, I think it’s fair for them to assume that at some point you have to reach the bottom.

If God is going to send us a new heart, we need it to come fast.   But in saying that, our doctor also told me today that if Ava does get a new heart now, it will likely be a slow recovery for her as her health has deteriorated so much.     Even today she is still having blood in her diaper, but they have decided not to treat it, or even find out what the problem is, as the cure would probably be harder on her than the disease.

So we are just asking for your prayers once again as we wait and trust for God’s perfect plan.

My friend Christa posted this quote on Pinterest, and so I wrote it out and pinned this up at the hospital today in Ava’s room…

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So even though the news was hard to hear today – we know it’s still not the end of the story for Ava.

God still has a plan and He is faithful and sure.

It’s about Him

So poor Ava is definitely fluid overloaded again.  We had such a stretch of good days that I think we all got complacent, and then WHAM…. she retained way too much fluid.  So they started giving her the big meds yesterday, but they didn’t have the desired effect and this morning her weight had gone up again and her liver was bigger again.  So then she received another dose of the metolazone this morning but it still didn’t seem like she was peeing, and around 5:30 pm our Doctor came in and told me that she was worried about Ava.  Ava just wasn’t herself, she has been so tired today and hasn’t really tolerated being off of her CPAP at all, and her heart-rate was high.  So she ran a full set of blood-work to see if anything else was going on and so I went back to the house for dinner wondering if I should be worried about her too.

So I made a quick trip back to the hospital after dinner to check on her and I was reassured as it did seem that Ava was doing a bit better.  Her heart rate was coming down and thankfully her blood-work came back all normal.   And our nurse tonight is amazing and one of my favourites so I could go home feeling confident that Ava was in good hands.  And I just called the hospital 10 minutes ago and it looked like her fluid balance was headed in the right direction, so I am hopeful that we will once again be able to get the extra fluid off.  Now if we could just get it too stay off!!    But all of this fluid retention is once again a sign of heart-failure that so many of our cardiac kids deal with.    There are a few of us mom’s waiting for transplant and the fluid balances of our kids is often a topic of conversation, just like it’s perfectly normal to talk about your child’s fluid in’s and out’s.    And talking about other kids, I’ll give you a quick update on Aleeda;   So she is doing OK.   They did a CT scan on her today just to make sure everything was fine with her as she hadn’t moved her left hand, but Tanya figures she hasn’t moved it because it’s uncomfortable because it’s so puffy.  Aleeda is fluid-overloaded too right now as her body is trying to get used to her new circulation and she was on so many diuretics before the transplant that her kidney’s need more stimulation.  But hopefully in the next day or two they will close her chest and from then on things should get a little better every day.  Please keep praying for her!

Now back to Ava – thankfully she is looking Ok, because if she wasn’t we would have to figure out a way to get Jason back here, because  he and the kids left again today – this time for a week and a half at Jason’s family’s cottage.   On one hand I am so happy that they get to escape the city and our small apartment here.   But on the other hand I am sad that they left without me.    I really didn’t like saying ‘Good-bye’ to my family again today, and what made it worse is that lately I’ve been having  a hard time in general because I’m just plain sick and tired of being here.

I said to Jason the other night that I just want to be a real mom again to our kids and he responded by saying, “And I just want to be the dad again.”   It’s hard when we are both playing different roles than one’s we would choose and there just doesn’t seem to be an end in sight,

The PACT team came by this afternoon (the pediatric advanced care team) and they asked how I was doing, and even though it would have been easier to fib and say OK, I wasn’t feeling OK.  So I shared some of sadness that I’m feeling over my life right now.    And their response was good, and  they pointed out that you need to allow yourself to feel what you are feeling, and even though there are people who are going through tougher situations than we are, it doesn’t make our situation easier or less stressful for us.     But even though talking to them made me feel better in way – I still felt like there was something missing, something that would say that me focusing on how bad I was feeling wasn’t the way to go.

And I realized after I got home what that was.

See, I realized this whole situation is not all about me.  Or about Jason and I or Ava or our kids.

It’s about Him.

It’s about Christ.

There is a bigger picture here which is all about God and His plan for Ava and for our life.   My job as a follower of Jesus Christ is to live for Him whatever place or situation or calling He has me in, and to bring Him glory as I go about doing it.

Romans 14:8 points out…   For if we live, we live to the Lord.  

When I first got to Toronto in May I was struggling with being here and a friend sent me this quote by Charles Spurgeon, from his devotional Morning and Evening…

Why then are we here? Would God keep his children out of paradise a single moment longer than was necessary? Why is the army of the living God still on the battle-field when one charge might give them the victory? Why are his children still wandering hither and thither through a maze, when a solitary word from his lips would bring them into the centre of their hopes in heaven? The answer is-they are here that they may “live unto the Lord,” and may bring others to know his love. We remain on earth as sowers to scatter good seed; as ploughmen to break up the fallow ground; as heralds publishing salvation. We are here as the “salt of the earth,” to be a blessing to the world. We are here to glorify Christ in our daily life. We are here as workers for him, and as “workers together with him.” Let us see that our life answereth its end. Let us live earnest, useful, holy lives, to “the praise of the glory of his grace.” 

I’m not on this earth to live a fun-filled, happy and self-fulfilling life.    Nor am I here to live for my family and my kids.     I’m here on earth to live for the Lord, and to fulfill His plans.   And when I look at it that way, I can look at my life right now with joy instead of sorrow, with a purpose instead of pain and with a peace that comes from knowing that this is not all I have,  there is an eternity to look forward to where I will find rest and peace.

Isn’t that cool?   And what I love even more is that God is so faithful to me that I can actually work through my faith as I blog, and God shines these truths into my heart even when I just think I’m giving you an update on Ava.    Isn’t God good?

Thank you Lord for reminding me of this tonight, I can live for you!

Amen.

(I’m so happy that it’s not about me, it’s all Him!!!)

Quick jot…

Today was an OK day for Ava.  I got to the hospital early this morning because I didn’t want to miss any of her awake time, and I was rewarded by a happy smily girl, who gave me a nice snuggle.   I took her for a walk around the unit, but she tried quickly and wanted to go to sleep right away.   It turns out that her liver is a bit enlarged again which means that yet again she is getting fluid over-loaded.  I thought that it might be that way yesterday as she just didn’t have the energy that she did have the previous week and her heart-rate has been higher than normal.   So this morning they decided that she needed another dose of metolazone – the heavy-duty diuretic they give her once in a while.  It takes a while to work, but I’m hopeful that by tomorrow morning she will be feeling a little better.   She is such a little trooper and even though she still wants to sleep most of time, I just cherish the awake time we get with her.

And Aleeda is doing well… she is still sedated in the Critical Care Unit, and they are still waiting for her ‘new’ heart to regain all its function.   Apparently it’s not usual for a transplanted heart to lose some function after transplant, but we are just praying that the heart recovers all of it’s function soon.   Alleeda also still has an open sternum, so please pray that they can get her chest closed sooner than later, and that she and her new heart can heal quickly together.

And I apologize but it’s been a very busy day and I’m fading fast and so I need to sign off.  But tomorrow is another day and as always I will keep you posted!

His perfect timing

I have some great news for everyone, but I will keep you waiting and first tell you that little miss Ava had another great day.   Our plan was to go to church today, so when I accidentally woke up early this morning I to put it to good use by getting the kids ready and dressed to help Jason out,  and then I left the rest of the getting ready to him and went to visit Ava.    And Ava was so happy to see me!  I got some cuddles and lots of smiles from her and we both really enjoyed our quick visit.   Then Jason and the kids picked me up from the hospital and we went to church at Harvest Toronto West .   And there we heard a great sermon about how God always has a plan, God’s plans are always for His glory, God’s plans are always for our good and that we must believe that God’s timing is always perfect.    Can you believe that was the sermon?  Seriously it was, I kid you not.   Little did the pastor know that he was delivering a sermon tailor-made for us.  And even though these aren’t new concepts, I think it was perfect time for a reminder of these truths.

But in terms of God’s timing being perfect, I am so excited to tell you that our little friend Aleeda from the hospital got her new heart Friday!!!!    She did!!!  It’s so incredible,  because after waiting one full year, she finally received a heart transplant and the wait is finally over.   I am rejoicing with her family and I am so thankful that God has answered all the prayers that had gone up on Aleeda’s behalf.  God is good.

Now, just because Aleeda has received a new heart doesn’t mean that everything automatically is well with her… she is still in critical condition and her chest isn’t closed yet, so please please be in prayer for her as her body adjusts to this new heart.   Just think, all of her organs and brain and even her blood vessels need to become accustomed to a good steady blood flow, something that she hasn’t had in a really long time.  But she is a fighter this little one, and I know that God is going to carry her through this.

It’s certainly my prayer that God will carry her through as Aleeda has definitely found a place in my heart.   She had a room right across from Ava’s, and even today I missed seeing her cute little face smiling at me from her high-chair in the hallway.   She used to lure me over to her by making her kissing face,  even though most of the time when I went over to her she just allowed me to kiss her.  She loves Ava and always smiled when she saw her and her mom has become a wonderful friend to me.   I have been so inspired by how patiently Aleeda’s mom Tanya waited for this heart, the staff at the hospital loved her and so they should, as Tanya never grumbled or complained.    Tanya also has a strong faith in God and we both knew that He had a plan, and it’s so amazing to see God’s plan and timing finally come together.

And it’s another reminder that God can bring a heart!   And so we ourselves just keep giving Ava to God, knowing that she is His child first and foremost and even though this waiting for a new heart – or perhaps God’s plan to ultimately heal Ava in heaven – isn’t an easy road to travel,  we can trust God and wait for His perfect timing.

Amen.

Things don’t just happen…

It has been so crazy around here… crazy and busy and I’ve been so tired, so I apologize for not blogging.

Kinda crazy too because Ava hasn’t been doing that well.  Too be honest when I saw her yesterday afternoon I was pretty sure that we were losing the fight.   Ava’s heart-rate was up and she had a fever and was restless, and nothing seemed to be working to calm her down.   They had tried morphine and a sedative and Advil and Tylenol and she was still restless and irritable.    Her feet and hands were dusky and she is still so puffy, I know she is still extremely fluid over-loaded.   So yesterday afternoon was really hard, and very very emotional.

So when the PACT team came by, we discussed how to keep Ava more comfortable and they thought that maybe pain wasn’t Ava’s problem, but maybe she was feeling anxious, with breathing being so difficult and with her heart not working well.  So we decided to swap out morphine for some anti-anxiety meds.  We gave her a dose right away and it seemed to help and that was great.  She woke up a little later and even though was calm, you could tell that she was a little befuddled… the cocktail of drugs that she was on was a bit much I think.  And then I just start feeling bad for her.   She hasn’t really smiled in days and I know she’s not comfortable, but waiting for a heart is like having a carrot dangling in front of you…  you don’t want to give up the fight in case the heart is right around the corner.     But once again I was praying that if God was calling her home, that she would just go, that we wouldn’t have to take drastic measures like turning off her heart meds or take away her CPAP.    Jason and I both don’t feel right about doing that,  and really, I know that neither of those things can really keep her alive if it is her time to go, so I take comfort in that.

And then just before I left the hospital yesterday, when I was feeling so low…. the Cardiologist Fellow came in.     He is from Singapore and he is wonderful and kind and really knows his stuff, and he’s a believer to boot!!     He said that he thinks that Ava needs to lose about 400 grams of fluid and once he can get her back to real or ‘dry’ weight, she will feel so much better.  And then once again I feel kinda astounded by God.    Here all afternoon I feel like I need to prepare myself to let Ava go and the writing seems to be on the wall, and then a doctor comes in and says that he believes there is still hope, and what he is saying makes sense.   And then I realize that when I try to guess at what God is going to do I never seem to get it right.  I just need to have faith and wait.

And Ava had a good night last night, but this morning at 6:00 am she was awake and really restless and irritable, like she never really has been before.   Again they gave her every drug they could to relax her and finally she slept again.    And then later this morning when she woke up I gave her a little bit of milk to drink, like I always do, but when I was done she freaked out.  So I gave her a little more and she drank it like she had never seen fluid before.  It kinda dawned on me that maybe she was just incredibly thirsty.    Which would make sense… she has a set amount of fluid she is allowed to take in during a day, so when she started IV antibiotics last week, they took away fluid from her feeds so it wouldn’t be too much.  But  IV fluids tend to collect in wrong places, and that is probably how she got fluid over-loaded.   So now they are trying to dry her out, so they haven’t given her all her fluid back to her and so she probably is thirsty poor baby – thirsty like every other cardiac kid on the ward. 🙂       But hopefully in a couple of days she will have lost this extra fluid and we can increase her feeds and she will feel better.  That is the hope, we will see what happens.

I know I don’t have to ask you to continue to pray, I know everyone is praying.  God has been so good and so faithful, and I know that He is carrying our little Birdy under His wing and I know He cares for her so much.    And my friend Christa posted this poem in my comments, but in case you didn’t get to read it, I thought I’d put it here… it’s so perfect.

Things don’t just happen to us who love God
They’re planned by His own dear hand,
Then moulded and shaped and timed by His clock;
Things don’t just happen, they’re planned.

We who love Jesus are walking by faith,
Not seeing one step that’s ahead,
Not doubting one moment what our lot might be,
But looking to Jesus instead.

We praise our dear Saviour for loving us so,
For planning each care of our life,
Then giving us faith to trust Him for all–
The blessings, as well as the strife.

Things don’t just happen to one of His own,
To one that has taken His stand;
No matter the lot, the course, or the price,
Things don’t just happen, they’re planned.
(by Esther L Fields)

Amen.