what a week...

In an attempt to escape and have a break from the waiting and stress that comes with waiting I pulled Joshua out of school on wednesday and Kaleb, Josh and I made the trek to the cottage for a couple of days off. The trip was rough, just as we were passing the Tim Hortons just off the 400 past Vaughn Kaleb started to have asthma trouble, and as I was pulling off the highway Josh started to vomit. I pulled over in what I thought was a clear area but it turns out that it was a truck pass through... needless to say I was standing in the rain with one kid covered in vomit, one kid struggling to breathe and trucks honking at me. My first thought was to turn around and go home but first I had to move the car, strip Josh and get Kaleb his meds. Once all that was complete I got Josh a bagel at Tim Hortons (hoping some food would settle the tummy). Once back in the car I decided that since I was almost half way there already I would continue the trip as planned. Before long both boys were asleep and the rest of the trip was fairly easy. More trouble began when Kaleb woke up once we got the cottage, his asthma was getting bad and no matter how many times I gave him the rescue meds he didn't seem to perk up at all. I finally popped him in the bath and he was so lethargic that after a few minutes he wanted to lie down (not helpful in a tub full of water). I got him out of the tub and he lay in my lap wrapped in a towel while my Mom and Dad got Josh sorted out. I finally figured out (yes it took me this long) that the rescue meds I brought for Kaleb were actually expired and not working. I called the pharmacy and got a prescription transferred to the local Shoppers. Once he started to get his meds (working ones) he began slowly to perk up again. It was a long night, and though not fully better yet he's doing much better.

Thursday brought with it the news that Joshua's next round of tests (a catheterization and cardiac MRI) will take place on the 22nd of May with his pre-op on the 21st.  So, three more weeks of waiting and then we should have enough information to decide how best to proceed.

As always I will keep you all posted as we learn more.

We are home now and Kaleb is recovering, though grumpy.

What a week!

Not about me

On Friday Josh had an OT (Occupational Therapy) appointment. While I was there I ran into our Physio therapist and chatted with him briefly to let him know that Josh's surgery was going to happen this summer and if he wanted us to do the casting it would have to be right away. Today he phoned me, it turns out he's been thinking about Josh all weekend and wanted to talk a little more about it. In order for the casting to work properly (training his muscles and hopefully helping him to walk on his flat feet rather than his tip toes, Josh will need to be active and have extensive therapy post casting which he won't be able to do if he's laid up in the hospital recovering from heart bypass. He feels that if we do the casting now, in light of what may come this summer, that there is a chance it won't work the way we are hoping. So, he's allowing us to wait until September, at which point he will be in Bloorview school and be able to get started immediately with the intensive therapy through the school. He said 'It actually works out much better' and I smiled. Of course it does...

So, the good news for this week is that casting Joshua's two legs this month is now off the table and spring is not going to be ruined for him! I have to admit that I find relief in that, it's not that the casting will be painful but it's certainly not going to be 'comfortable' for him nor will it be easy for us. To have that pushed back gives the procrastinator in me a sigh of relief.

The Bible tells me that God works all things together for good, for those who love him. I see that daily these days. When we first heard about the surgery we were coming off the back of hearing about this development with his legs and I couldn't help but worry about the timing, I pictured Josh in casts and having to go through all that he's about to face and I started to wonder if maybe we should put off the casting until September. I thought out all the pros and cons, do we let him them put him in casts before surgery or do we put him through even more post surgery? How do you know what is best? I have to be honest and say that I didn't pray about it, I just wondered it and discussed it with Tim. Somehow I find it pretty awesome that even through I didn't specifically pray about it, God still knew it was a concern and answered my question for me. It made me think back to all the times I have worried about something or thought out something but not prayed and yet still got an answer, and that led me to thinking about prayer, what is it? What does it look like? It would seem I am always coming back to that question in this blog... The reality that I am starting to see is that when in relationship with an omnipotent God, he knows what is on my heart even without me saying it out loud to him in formal prayer. Not that praying isn't important, I am not suggesting that. I am however saying that Prayer, relationship, is a knowing. God knows me, he knows my heart, he knows Josh and he knows Joshua's heart, and in that knowing, he seeks to ease our fears and help us answer the tougher questions that we don't have the words or forethought to pray.

Then I started thinking about all the times I haven't known what to pray for, all the times I have sat staring at Josh or Kaleb and wanting to pray for them (not just their health issues but just for them, as they grow and learn, who they will become, who they will meet and develop relationships with... all the little things that as parents we want to pray for them) I often want to pray but feel overwhelmed with the amount of things there are to pray about and I find that I have no words at all. What do you say, how do you say it? What if I ask the wrong thing?

Today it dawned on me... it's not the words that matter. I can say nothing to God and he will still do what is best for my boys and Tim, it's more about the actual act of taking time to talk with him. To build relationship with him. What kind of marriage would we have if Tim and I never spoke to each other? I don't need to tell Tim when I am worried, he often knows before I say a word, but I still tell him and in the telling I find that I have someone to share the burden with. I can sit in silence with God, not knowing what to say to him, not knowing how to share my deepest fears with him but he already knows, and when I do find the words I find that I am not alone, He's right there with me and listening.

Whatever happens, prayer or no prayer, it isn't going to change how God answers, how he provides, how he moves and works. My prayers don't change Gods mind, they simply open the lines of communication and build a relationship with Him. This has been such a relief to me and I can't believe I didn't learn this before. All this time I have been thinking I have to pray harder, I have to be more faithful, I have to do more... or worse, I am praying wrong, I am not saying the right words, I don't have enough faith... crazy isn't... it's not about me?! :)

Induction day

Yesterday was a big day for my husband Tim. He was inducted as the Rector of Little Trinity (Trinity East). I have to admit, I am not an Anglican by birth so I had no idea of the importance of such an event. I got a dress on and attempted to get the boys as clean as possible (promptly ruined when I allowed them to play at the park before the service), I packed snacks for them and both had 'entertainment bags' to keep them occupied through the service. I dosed up on caffeine before hand and was 'ready' and at the church early. What greeted me was a surprise and an overwhelming appreciation of the wider church community. As I sat outside the church letting the boys play at the park and blow off steam before asking them to sit for a couple of hours of church I watched as face after face of old and new friends came pouring our of their cars and walked into Little T. I was so surprised by the amount of people who came. I had figured on a few friends, family and of course the clergy that were supposed to come but I wasn't expecting a full house. The service started with some of the most amazing worship I have had the pleasure of being involved in. There was the formal stuff (handing over of keys and such) prayers and then Tim was introduced as the new Rector. As Tims wife I was asked by the Bishop to join Tim at the front for this introduction and I am so glad I didn't balk at the opportunity. I have never been so proud of Tim as I was in that moment, when a standing room only Little T all started with first applause and then quickly replaced by a standing ovation. I struggled not to get weepy as all these people stood and filled the room with their applause and appreciation of Tim as their new Rector. What an honour for Tim!

Changing churches in the face of this new development in our family has been hard, knowing that he faces challenges at work and now at home I have struggled to support him and I have to be honest, I have missed the people who have walked us through these types of hard times before. The people who were there with us when Joshua was born, who prayed us through every single obstacle that we have faced with Josh from diagnosis to subsequent surgeries. Yesterday, as we stood at the front of that church I looked out and I saw all those faces, and the faces of all the new family that will uphold us as we face the future together. It's a busy time for us, not only as a family but also as a church under new leadership but yesterday there was no doubt that we are exactly where God wants us, and that God was there celebrating with us as a larger church family. To say it was awesome is an understatement!

Thank you to all who attended and made the day so special for Tim, and by association me. We are again reminded of the tremendous blessings that fill our lives on a daily basis. It's a new day at Little T and I am so excited to see the plans that God has in store for this amazing church!

beautiful lessons

I have spent a lot of time thinking about the social issues that Josh will face as he gets older, sending him to school was huge for me because I always worried that his language impairment would cause him to have problems making friends. When he first started school it took him a while to make friends, and every day he would cry and ask me not to send him back. That was September and October of this past year. I remember one night in particular when he was saying his bedtime prayers he expressed to God that he didn't like school because 'I can't talk'. It made me cry, agonize and worry about him. As someone who never had a problem making friends, and after watching Kaleb take after me in the area it was something new for me to worry about with Josh. What happened if kids made fun of him? What would his self image be like if this problem wasn't fixed in MY timeline? I can't tell you the nights I spent lying in bed hoping and praying that Josh would make a friend at school... and I can't tell you how many play dates I arranged to make it happen.

It's April now, and Josh has been happily attending school for most of the year now, he loves it, he's learning and growing in leaps and bounds. He has friends and is much better at telling me about his day.

The teacher told me that recently a boy moved here from Bulgaria, he speaks no english and he has joined Joshua's class. Then she said, that she noticed Joshua playing with him and went over to listen to what was being said... as it turns out Joshua has been playing with him and helping him learn simple phrases, things like 'Hi, my name is... ". 

Here I was so worried about only Josh that I didn't stop to think about what a blessing he might turn out to be with all this empathy and compassion. Seeing a little boy who knows less English that he does must have been such a wonderful chance for him to show kindness, and to gain confidence and to understand that he's not alone. I don't know that I have ever been prouder of my little boy before. I want my kids to be the kind of people who meet troubles and face tough circumstances with a brave face and a fighting spirit, I want them to be the kind of people who look up at the stars rather than the mud they may be stuck in. I have always wanted that, and yet I realized today that I haven't been giving either of them enough credit. They already are those kids. Josh could stare in the face of his impairment and allow it to define him, or he can use it to show empathy and compassion to other kids like him or worse off. To know that he chose the latter fills my heart with so much love and pride.

Kaleb who is always bugging his brother, throwing things, punching, wrestling him to the ground... just yesterday told a boy off who happened to bump into Josh on the slide... he said 'Hey! (VERY LOUDLY) Don't hurt my brother!'!

I think... sometimes... that I am the sole person who is going to teach my kids about becoming men... I think sometimes that I am solely responsible for who they are going to become. The last few days I am being taught that I am merely here to guide, and that to believe otherwise is putting me at risk of creating idols out them.

Beautiful lessons that I am happy to learn.

Next step

There is so much to say, so much to worry about and yet also so much to be thankful for in the next post.

Let's start with the phone call I finally recieved last night during dinner... Our Cardiologist called after the meeting with Surgeons and explained a LOT... so bear with me.

The doctors feel that something is needed, we have a few options as I mentioned last week. The first option is a Tricuspid replacement (a valve they have tried twice now to fix without success). The second option is called a shunt (half of a fontan procedure) where they take the vein supplying de-oxygenated blood straight from the neck, bypassing the right side of the heart and dropping it right to his lungs using gravity. The third option is to do both while they have his chest open and heart already on bypass.

The shunt procedure is something that can not be undone, it irrevocably changes the make up of his heart and should it not work we are looking at heart transplant. Our Cardiologist said 'given Josh's history of being on the side of rare this is something we need to think about before doing'. I have to admit that it gives me much pause as well. Always before his surgeries have moved to place of 'fixing' his heart, and being 'fixable' should something go wrong (case in point was the pulmonary valve that Josh rejected the first time around). The thought of coming to place of needing to be put on a transplant list makes me feel ill on many levels.

So, the doctors (one of whom was his last - and best) surgeon have decided that they want a more comprehensive look at this heart. He will be sedated and they will send a catheter through the groin and into his heart to run some tests to get the exact measurements and pressures of his heart, then they will get an image using the Cardiac MRI. This should all take place within a month. Once they have the images they will meet again to finalize a plan for going forward.

On Thursday morning when I woke up I had such a feeling of despair, I was terrified and sick and worried and every other possibly emotion that one feels in a situation like this. Before I left to pick Josh up from school I prayed that God would somehow let me know what the right choice is, and that he would confirm for us that this is absolutely necessary before we again place him on a table. When I got home there was a letter offering us the placement at Bloorview, this sounds morbid... but it gave me a hope for the future. My deepest fear is that we will lose him, knowing that God has a plan for Josh that goes beyond this next surgery gives me infinite hope for Joshua's immediate future. Then yesterday on the way home from school a boy ran past Josh and I, and Josh stopped to watch. Pointing at the boy Josh said 'Mummy, that boys is so fast' to which I agreed and started to move again but I looked at Josh's face and he looked up me with the saddest look on his face. He said 'I can't run fast' to which I asked him why, again, his face filled with sadness he looked at the boy running away in the distance and said 'Im too tired'. My heart ached but there was a part of me that heard this and knew that it was again God saying 'this is not in vein, he needs this, and that is something I really needed to hear going into these decisions.

Last night Cardiac Kids gave us tickets to see the Leafs play the Devils. As it turns out we were in the players box and our host was David Clarkson of the NJ Devils. His mother sat talking with us for a large part of the second period and after the game she invited us to come down to the ice to meet her son. While we waited a man who works at the ACC came over with one of the sticks from the game and gave it to Josh, then we got to meet David who signed Josh's stick and chatted with him for a bit.

This past week has literally been a roller coaster of high highs (Bloorview) and low lows. Last night as I lay in bed I was thinking over all that has happened in less than one week and I have to say, I am so in awe of God's incredible timing, his healing peace and his ever comforting arms.

I think, since most of you who read this have also promised to pray for Josh, that this would be a good time to let you know exactly what we are praying for.

1) I really DIS LIKE the idea of a shunt... I am personally praying that it isn't needed
2) Peace, for all of us as we face this next round of tests and meetings
3) Wisdom for the doctors who are making these crutial decisions regarding Josh's heart
4) the catheter procedure is what caused Joshua's first stroke... please, pray against this during his next one.
5) We will need help with the emotional aspects of this for Josh, please pray that we find the right words to explain it and that God gives him the peace he's given us.
6) while I am going for broke in my requests... maybe we could also ask God to heal him... just generally heal this little man and allow him a full, long and very happy life?

My inbox has been full all week and for that I am so thankful, I feel so blessed by the amounts of people who love our family and who are praying so faithfully for us. Please know, even if I can respond to all of you right away, I have been blessed by you and feel your prayers daily as we move forward. Thank you for your support!

Blessed

I have been attending church since I was born, yet it hasn't been until I have been older that I have really understood and benefitted from the joys of a Christian community. I have found that no matter where you go, you never leave behind your community. This past weekend has been a wonderful reminder of how incredible a gift it is to be in relationship with other Christians, old and new friends alike have been contacting us and praying for us and I stand in awe because I have felt those prayers; like a warm blanket on a cold rainy day they have wrapped me up and buffered out the cold.

God has blessed us with a weekend full of many distractions to keep our minds busy and away from the nagging gut wrenching decisions that tomorrow brings. Peace has enveloped us as a family and as we walk through the next few hours into tomorrow I find that I am stronger than I thought I was and that to me is a precious relief.

I don't know what the surgeons will decide tomorrow, they have a few options and obviously my prayer is that they decide to hold off, that they choose to not go with any surgery... at the beginning of this latest episode I allowed myself to believe that it was in the surgeons hands but I was wrong. It's in God's hands and I have been reminded this past week that God's timing is the best timing and maybe, just maybe, it's time I just stop worrying and put aside the fear and allow God's perfect timing, His perfect will to be enough. He knows my deepest desires and he's heard my heart felt prayers and if this is how he is going to choose to answer then I have to trust Him. Hard as that may be... how can I go into his room each night and pray for Josh's healing, and then be frustrated when he gives us an answer just because I don't like the way he chooses to answer?

As I read through the responses to the Blog this week I am amazed and wonderfully filled with peace and hope because I know that there are thousands of people in the world praying for my son. He is one blessed little boy, and I am one blessed Mum!

L

Heaven Hugs

I love God's timing on things. As you can imagine it's been a hard week for us and it's not promising to get any easier any time soon. This morning was rough, fears and doubts are plaguing me and I have been at a loss for words. However, today after picking Josh up from school I came home to find that the mail had come. I opened the mailbox and found a large envelope from Bloorview school. Now, for those who are new to this blog I will quickly update...

Due to Joshua's stroke Joshua has many therapy needs but his biggest deficit is his language. He suffers from both receptive and expressive language impairment. Finding therapy for Joshua has been a long and very stressful road. We have tried everything we can think of to get him the help he needs. It wasn't until earlier this year that we finally found a therapist who was able to help him and I promise you she isn't coming cheap. Thanks to the Bishop's company we have been able to access her services but we won't be able to keep it up for very long. During the struggle to find help we were told about Bloorview school, (a school based at the Holland Bloorview rehab hospital). Getting in was a very long shot... so long that I didn't really expect anything. I almost didn't even bother with the interview process because it just seemed like one more fruitless appointment. However, I went to the interview, fell in love with the program that they offer and left feeling even worse because I had no real hope for Josh getting accepted but in my heart I knew that if ever there was a school that would help Joshua this was it.

Today, when I opened the mail I read that Joshua has been ACCEPTED to their program! A two year program (to be reviewed after a year) focused on mainly his language but also offering him his physio therapy as well as his Occupational therapy. All of this at the same time being a Senior Kindergarten and possibly grade one school program.

I have been waiting months for this... to find out the day after hearing he needs more surgery feels like a little hug from God. A little way for him to remind me once again that Josh is in his hands and to cheer me up.

I know that so many of you (hundreds of readers now) are praying for Joshua and will continue to pray him through this next surgery and time of suffering. I wanted to share the good news with you so that you too can rejoice in this with me.

This is yet another reminder that we can only hang onto today... because we just don't know what tomorrow holds.

Quick Update

I have had a lot of emails today asking how things went... I want to say thank you to everyone who prayed. When I got home I went through past blog posts for days like today trying to find words... but there aren't any really.

I won't go into too much detail until I know more on Monday or Tuesday but I can say this...

Joshua is more than likely looking at another surgery in the next month or two. We have a few options... none of them are good ones.

On Monday our Dr will take Joshua's case to her team and they will finalize decisions, at which point Tim and I know more and I can better update you. As you can imagine this is terrifying and sickening. I am sorry to those of you who wrote and got no response. I will do my best to answer questions on Monday or Tuesday.

Thank you for your prayers.

Please pray

As you have heard the last few days Josh has been struggling, the main issue of course is that he's tired but there are symptoms that are worrying us. The last month has been particularly difficult for him and though I have tried to put the worry aside it finally came to a head on the weekend and I contacted our Cardiologist. She booked us in as soon as possible for an ECHO and a ECG and a clinic visit. So. Tomorrow for good or for ill we head back to Sick Kids for more tests. I write this to you because I am asking for prayer. I don't know what they will do or say tomorrow that will help but I do know that Josh is having a really hard time lately and watching him struggle has been tough. Please, pray for Josh if you think of him tomorrow... and pray for the doctor for wisdom... and then pray for Mum... I don't know what I need but God does.

ECHO - 10am
Clinic - 1PM

Thank you!
L

in the silence

Time and time again I find myself in a place of questioning the wisdom of God, like I have some sort of knowledge that tops his or something!? I can't tell you why I do it, or if it's just that I am suffering from the human condition. What I can tell you is that God quickly turns me about face and reminds me that I am actually fallible, that while I may 'think' I know what I see, I can't see beyond the limits of my humanness.

Beyond me there is a world full of suffering, a world full of despair, a world full of pain and beyond me, God is working to heal those wounds, to bring some good out of the suffering, to pour out his love, like a balm to soothe the hurts. While I can't see what he is doing, I am once again reminded that he is in fact 'doing' something. Wasn't it Socrates that spoke about us being but a grain of sand? (I could be wrong... I have Bill and Ted's Excellent adventure running through my head right now). It doesn't matter if I am right about Socrates or not, the reality is that today while sitting in a pew at church, letting the music wash over me I was reminded that I am a grain of sand on a beach that stretches the imagination. I can't ask the why, without first understanding this simple truth. God has a plan. That is all the trust I need to have right now, there is no such thing as 'too little faith'. Believing just a little is believing enough for the moment. Lynn, (our associate Pastor) spoke about God being someone that we see the back of, (she quoted a Jesuit priest that I don't know so I can't pass along the actual quote, but it doesn't matter... it's the point that matters). We may not encounter God in the moments, but if we look back in our lives we can see him walking in our lives, working, healing, moving... that is what I need to cling to this week because if ever there is a lesson that Joshua has taught me through out his life it's that if I look back I can see God as surly as he if he was standing before me. Every little thing that has happened along the road has been touched by the hand of God. I can see it clearly when looking back so I need to trust it as I move forward. I don't have the answer to why we suffer, I can't tell you why God allows suffering except to say that in the garden, humans made a choice of death over life, and with death comes pain and suffering. With Easter came the reminder that God is victorious over death, and from that I choose to believe that God is using our suffering to bring victory to us, and to those who are close to us. His work isn't about me, Joshua's Mum... it's about His Kingdom. Learning this is not fun, it's not even an answer that satisfies me on many levels. It comforts me to a degree yes; but I would be lying if I said it was enough. What I really want is for God to come over for a cup of coffee and tell me that Josh will be fine, that he will achieve all his therapy goals, that he will one day speak to me clearly, that he will run without falling, that he will love with a full and unbroken heart. That's what I really want and to say otherwise is lying to myself and you.(something I have tried hard not to do in this blog).

The point of the post? I haven't got a clue. :) I guess I am learning again that each day can either be a step forward or a step back but no matter what direction we are going God is making those steps with us. He isn't a goal to be reached but rather he's a friend to cling to. What I don't know; he does. What answers I don't have; he has. That for the moment just has to be enough.

So at night, when I go in and place my hand on Joshua's head and beg for his healing... God is standing on the other side of Joshua's bed with his hand over mine. Even if the answer is wait. Even if the answer is no. Yesterday in my post I said I was being met by silence and today I was reminded that silences are needed when someone is listening. 

How long?

The latest news in the never ending saga of Joshua's therapies is that Josh, who walks on his tip toes and has a lot of balance issues is having trouble with his legs. They are too tight in the ankles and because he's always on his toes it's causing a lot of trouble for him with his walking and running. The combination of toe walking and balance problems cause him to trip a lot, and if the ankle muscles don't become more flexible we are looking at a painful surgery that results in a long recovery. Yesterday we met again with our Physio therapist who is going to put him in casts for three weeks (he wants to do it before the end of the month). Two casts, for up to three weeks. It's more of an annoyance than anything painful for him but he's struggling this week. He's angry, sad, fed up and ready to call it quits on all therapy. To be honest... I don't blame the kid. I feel the same way after his appointments. I thank God I didn't know all the endless problems that result from a stroke back when he first had it. This week has been difficult, he cried all the way to his language therapy and no matter what I said, it didn't help. He wanted to go home. He was tired. I finally got into the back seat and sat beside him and told him about his stroke. I am not sure I have ever really explained that to him. I told him about what happened, and I told him what it means for him as he grows and develops. I explained that it makes things like talking harder for him, that it makes one side of his body weaker than the other, and then I did my best to explain that all the doctors, all the therapists want to help him to recover from the stroke. I don't know how much he took in and actually understood (another down side of his language impairment) but he was listening. Then when the sobs eased a little bit I asked if he would go in if I asked her to shorten his session, and that finally got him out of the car. Yesterday, he cried all the way to PT, quiet, heart breaking sobs from the back seat. Whispered little 'too many doctors'... it's enough to break the heart of the toughest person and I am not not a tough person. Our saving grace yesterday was that PT includes running, jumping, and a therapist that rewards him with little games of basketball. All that to say, it's been a really hard week. It's been a long winter. Spring will bring three weeks of casting for Josh, little mobility and then when it's all said and done it means special orthotics for the summer and then come September, it means three months of physio therapy. I can't help but ask God why? When will it end? Psalm 40 rings through my mind as I ask him How long?? How many times will I go into his room long after he's fallen asleep and touch his head and beg God to heal him only to be met with silence. What does all this tiredness mean for his heart? The lethargic Josh is returning and I ache because though it could be nothing... it could also be EVERYTHING.

Reminder for myself

What do you give up to be a parent? That's been running about in my mind a lot this week. I would gladly give it all up for them, but it doesn't mean that there aren't things to give up. It doesn't mean that sacrifices haven't been made. Sometimes it's hard to not look at what has been given up, and other times it's more like seeing what isn't, and realizing that you wouldn't have it any other way.

I never expected to be a CHD advocate, I never anticipated weekly, bi-weekly appointments, numerous doctors and endless rounds of therapies, medication schedules etc. I had big dreams and big plans. Do I sometimes wish that I was working as a full time photographer? Yes. I won't lie to you. There are days when I lay down at night and I am so exhausted by the endless stress of all the doctors and therapists and phone calls to advocate for the kids that all I can think about it how lovely it would be to only have to worry about a photo shoot. How therapeutic it would be to just edit photos today... self pity? No, I think it's just normal. It's normal to sometimes look at the neighbours yard and wish you could get your grass as green as theirs.

Those moments don't last though, I am the only person in the whole world who knows absolutely everything there is to know about Joshua's therapy schedules, what happens in those therapies, what the next step is, and what progress is being made. I am the one who gets sit in those sessions and see the smile of pride on his face when he achieves something new, or to see the surprise on the therapist face when he uses a word we had no idea he knew. I am the only who gets to hold their hands when they are at the doctor and they are scared, I am the one who gets the post-doctor snuggles. When they go to bed at night, safe and snug in their beds I can close my eyes and know that there is NO WHERE else I would rather be, there is no photo shoot that will ever give me the satisfaction of a job well done that a smile or hug from one of these two boys can give me, no other job that would ever compare to the one I have. I didn't choose to have kids with medical issues, but I chose to have kids and sometimes being a parent means rolling with the punches. Sometimes it means giving up what you thought you wanted for something that you couldn't live without.

So, for the moments when I am weak, the times I am just tired from the endlessness of therapy... I write this post to remind myself,  that this is where I am meant to be, this is what I am being called to do at the moment. Fighting for CHD awareness, working with therapists, writing, raising my kids and yes, when all that is said and done... working shoots and being blessed enough work at something I can find passion in, something that soothes my weary soul. 

resenting the church?

Thanks to Bell who finally fixed a downed line outside our house is once again 'online'. I never realized how much I count on the internet before I didn't have it. Now that it's back online my inbox is flooded and instead of doing anything with it all I can think about is how badly my blog has been neglected. So here I sit.

March break came and went with a swiftness that I don't remember happening before. I took the boys to the cottage for the week and though each had a cold they also had a great time playing with their Grandad and Grandma and somehow I managed a relaxing week away. What surprised me was that when we returned home Kaleb was visabaly angry with Tim about not being there with them. I hadn't expected that, nor would I have guessed that he would have that sort of reaction. We had been having fun at the cottage, Tim called at night to talk with the boys and yet when we got home Kaleb was clearly angry with him. When we finally asked him about it he said 'I don't like Daddy, he's always at church'. This brought me up short, the boys know that Tim works at church but I never really figured they would equate work with church. I told them that we were going away because they didn't have school and that Daddy couldn't come because he was at work. Clearly Kaleb put two and two together to come up with "Daddy is at church instead of with us". It didn't take much to appease the little man and once again restore Tim to his good graces. It has however taken me longer to digest what this means.

I don't want my kids to grow up resenting the church because of the times it takes Tim away from them. I want them to grow up embracing the church, respecting the church and the work that their Dad does there. I don't recall ever being angry with my Dad for his time away at work, or the trips he had to make because of work, or even the times that he couldn't do something with us because of work. So I am left to wonder if I am doing something wrong? Am I somehow saying something that causes them to resent Tim's work? The church?

I remember when the boys were babies and all the sleepless nights, the total dependence they had on me and all I could think was 'this is just a hard phase, it'll be easier when they are more independent'. I am seeing more clearly that each phase is hard, each new development poses new obstacles and potential land minds to be navigated... I knew parenting was going to be hard but sometimes I am floored by the depth of responsibility that it comes with.

Internet is totally gone... Right now I am on wireless up north. Things should be back up by the end of the week or early next week. Please don't lose faith in me... keep checking in. I hope to be back soon.
Thanks for your patience.
Laurie

CCHA? What's that?

Time is running out in February, it seems that while this is supposed to be the longest of winter months in terms of feeling like it will never end; it is indeed the shortest when it all boils down to days. I have been working with dodgy internet so my posts have been few but when I see the light for internet come on I do my best to provide as much information in as little time as I have. Not easy I assure you.

Today I am going to tell you about an organization that I have talked about a few times in the last few posts. The CCHA (Canadian Congenital Heart Alliance) was founded in 2004 by Adult survivors of CHD; after a few false starts which included the much too early death of their co-founder) they achieved their charitable status in 2006. The primary aim of the CCHA is to improve access to care and the level of care for all patients with CHD, both old and young so that they can live long and healthy lives. It began with a meeting hosted by Dr. Gary Webb, the director of the Toronto Congenital Cardiac center for adults at Toronto General Hospital. The main topic of conversation was  to tell these patients about the clinic (one of the top facilities in the world) and to let them know that due to lack of funding the clinic was in danger of closing. 

"He said we had to start advocating for ourselves because the government, heart and stroke, and other decision makers weren't paying attention. That was a real wake-up call. None of us had a clue about the politics behind our doctor appointments. I am sure none of us had ever given funding, or the lack of it, a second thought. After our meeting four of us got together and the Canadian Congenital Heart Alliance was born" - Shelagh Ross - President of CCHA

Shelagh, an adult survivor of CHD left Sick Kids in 1981 and like most adults with CHD, she fell through the cracks in the system for almost 17 years, until finally at age 33 she found herself in an ambulance headed to Toronto General Hospital, she was suffering from Ventricular tachycardia (a life threatening arrhythmia) she had been seeing a cardiologist annually and every year she heard that she was 'doing great', but in fact her pulmonary valve was seriously leaking. She had no idea at the time that the Toronto General Clinic even existed. 

The  situation at the Toronto clinic has improved a lot, but there is still a long way to go before the level of adult care is on par with that of kids. That's not to say the expertise isn't excellent but just that there isn't enough specialists and not enough clinics. The vast majority of adult patients are not being followed by one of the 15 adult CHD centers and many fall through the cracks when they transition from their pediatric center. 

"We are trying to get the message out that CHD is a lifelong disorder, and that kids aren't 'fixed' by surgeries, interventions like catheterizations, medications, pacemakers, and/or defibrillators." says Shelagh Ross . The trouble is getting people excited enough to be involved because unless you have CHD or you are a parent of a child with CHD you are not going to get it. CHD lacks the fear factor that some of the other more high profile diseases have. CHD patients often look healthy so it's an invisible disease, something that as a mother to a son with CHD I have come to know only too well. How many times have I heard how good he looks, how healthy, when in fact it's a constant source of worry for us. They repair during surgery, they don't cure. These aspects of CHD are all reasons for the lack of funding, the CCHA is trying to raise the profile of CHD so that things can change, so that they can reach those patients who got lost in the system post pediatrics and get them to follow-up at a specialized clinic and receive the care they need; so that the kids coming out of pediatrics in the future will transition smoothly into adult care, and so that young cardiologists can specialize in CHD care. With the survival rates for CHD climbing the need is growing critical for adult patients.

"It always surprises people when I say that there are an estimated 180,000 Canadians with CHD, 100,000 with Parkinson's, 75,000 with MS, 58,000 with HIV/AIDS, 50,000 with Cerebral Palsy and 3,600 with cystic fibrosis - but you almost never hear of walks or runs or fundraisers of any kind for CHD. Most people assume that the Heart & Stroke foundation includes CHD as a part of their mandate, but it doesn't."  - Shelagh Ross

Another road block to care is that most parents get involved with their child's hospital and direct their funds through those channels. This is something that I, as a parent have done in support of Joshua. The problem of course is that paediatrics only last until they are 18 years old. We need to get working to improve things for the growing number of survivors, many of whom will need specialized care in the future. More and more children with complex heart conditions are surviving and the adult system is  not set up to care for them.

What can you do? Shelagh Ross says that the Canadian Congenital Heart Alliance is trying to get more and more people engaged and concerned, that they are asking people to contact our government, hospital administrators, create fundraising events with them so that they have the resources they need to spread awareness across the country.

"I would like to see us grow into a really powerful national organization that supports and advocates for patients of all ages, and their families. I would like to see us lobbying for or even funding CHD research, and developing programs that deal with the psychosocial issues patients have (anxiety, depression), and the healthy living issues that so many patients struggle with (lack of activity, obesity). There is just one psychologist in all of Canada dedicated to helping adults with CHD and she is in the Toronto clinic, there are no social workers that I am aware of." - Shelagh Ross

On a personal note before I close this post I want to say thank you to Shelagh Ross for taking the time to answer all my questions, and for reaching out to me and offering me a place to share my voice on behalf of Josh and other CHD patients. Please, feel free to check out their website and find out more about how you can help change the face of CHD for adults as well as children.

 

Check it out!

Hope on the horizon

Today I had the absolute pleasure of finally seeing an article in the Toronto news (Globe and Mail) that featured CHD and the crisis that has arisen in our country when it comes to the care of it's adult patients. It was like a balm to the soul to see it in print, to know that someone other than me cares, to know that it's a problem that people are trying to have addressed. It gave me; in a word. HOPE.

I was talking to my Dad about raising awareness for CHD and how frustrating the process was. I shared how annoying it was that no one seemed to care, least of all was the media or anyone who could actually have a larger voice than mine - a mere heart Mom. My Dad is a PR specialist and has YEARS of experience with the media, fundraising, news, journalist, along with any manner of issues revolving around communications, he even wrote a book called 'the media and the message' for organizations on how to cope with the media. He's an expert in crisis management and has dealt with all manner of 'crisis' situations in many number of organizations and company's; I tell you this because of all the people who will know and understand my frustration it is going to be my Dad. What he said to me was this... 'sadly, getting people interested in CHD is going to be like Chinese water torture - You just have to keep plugging away at it'. Not hopeful, but certainly I understand what he means.

So, you see why I am excited that a story was picked up in the news??

Here is is:

Living with Congenital Heart Disease

CCHA

This video pretty much explains it all. It's also a video for an organization that I am now going to be helping with raising awareness. The Canadian Congenital Heart Alliance. Very happy and excited to be asked to join this organization! Check out the website and learn more about CHD!

if only for a moment

I am a having a hard time today, thinking about Valentines day and hearts and flowers and all that stuff, putting together my research surrounding CHD awareness... I had a plan for today, a plan for a special post about raising awareness of CHD. Today took a turn though and I can't seem to find the brain power to switch gears back to the task at hand.

Most of you know that last year Josh attended a school for kids with special needs, well, this year Kaleb also attends the school in the integrated class (a class with both special needs and high functioning kids). Today we learned that a little boy in Kaleb's larger class passed away in his sleep on Tuesday night, his parents made the horrific discovery yesterday morning. All my thoughts on CHD awareness blew out the window. The cynical part of me thinks "who cares anyway?". The reality is that hearing this just brought to mind my own worst fears and nightmares.

Last night our small group finished the book revelations... it's been a long study but the fact that we ended last night seems fitting. Today as I heard this news all I could think about was what heaven will look like for these wee little people who have been taken too early. No more pain, no more suffering, no more sadness, no more scars. How many times have I sat thinking about what that will look like? How many times have I wondered what heaven will be like? Too many I am afraid, to count.

Death is as I have mentioned 'a given' in this life. We were born and then we started to die. That's just the way it is. However it doesn't ease the pain for those left behind, it doesn't ease the fear for those saying goodbye. As we finished revelation last night we were asked to think about how this reality (that heaven awaits us) will affect our daily lives. As I processed this news today I realized that it will make me love, it will help me forgive, it will help me to be compassionate, less focused on me and more on those around me. Death is inevitable, but we must still live. I will one day die. My children will one day die. My husband will one day die, everyone I know and love will all die. What we have now, is today. This moment is the only sure thing in life. It doesn't matter if you have CHD, or if you slip peacefully away in your sleep or die in a terrible tragic accident. That is all in the future. Right now, this moment you have life, and we all too often forget that. The only guarantee we have is what we have right now. Right now I have a son who just moments ago said 'Gross' when I kissed his cheek, and then said 'kiss my lips mummy, that's better'. Will CHD kill my son? Probably, but what I sometimes forget is that he's not gone yet. Worrying, fearing about when that might happen is hopeless. I need to embrace him NOW.

I heard the other day a saying 'Faith and Fear have one thing in common. They both ask you to believe in something you cannot see.'

Today, on this day of celebrating the people you love, remember to enjoy the NOW with them. Hug them a little tighter, tell them with words and actions that they matter because you just don't know how long you have with them.

I won't be posting a picture today, my heart is heavy and sad and I can't think of an appropriate photo to go with those feelings. Instead I leave you only with a post and a prayer... that those of you who are suffering loss today, for those of you who ache, for those of you who fear... that you will find peace today, if only for a moment.

Sick Kids

I have been hearing about Sick Kids since I was a little girl, I have seen thousands of commercials raising funds, I have gotten all the brochures for the Sick Kids lottery. Yet, until I was booked into the Fetal Echo lab at Sick Kids I had never really thought too much about it. The hospital ads, the lottery, the stories, they all seemed so far removed, it happens to other people. Knowing that it can happen to you changes things. When Josh was born he was stabilized at Mt. Sinai and then rushed to Sick Kids, and I began to learn about this amazing hospital. The staff, some of whom have gotten to know Josh and us very well are warm and loving. The have on occasion even heard we were in the hospital and come looking for us to say hi. If I show up at the asthma clinic with Kaleb (the asthma clinic shares space with the Cardiac Clinic) all the doctors and nurses see me and with a panicked look on their face ask me why I am there, if Josh is okay, if Kaleb is okay. They are specialists, in not just Cardiology but with kids and with parents. The information I am giving you today (again in honor of CHD awareness month on this Blog) is about the Labatt Family Heart Centre.

The Labatt Family Heart Centre was established in February 2007. The extraordinary generosity of the Labatt Family allowed the former Cardiac Program to move forward with a series of important internal initiatives, funding the redevelopment and future activities of the Heart Centre at The Hospital for Sick Children. (The Cardiac Critical Care Unit - CCCU is the only specialized Cardiac ICU in the country)

VISION

We will be the best paediatric and congenital heart disease centre in the world. CURRENT STATE  The Labatt Family Heart Centre brings together significant interdisciplinary and interprofessional activities within Paediatric Cardiology, Cardiovascular Surgery, Cardiac Critical Care, Cardiovascular Research and Adult Congenital Heart Disease programs, thus allowing the Heart Centre to address the needs of patients and families from fetal life through to adulthood.



The Heart Centre at SickKids promotes these activities through seamless integration of research activities, academic performance and exemplary clinical care.  Membership within the Centre consists of SickKids' clinicians, researchers and educators from nursing, medicine, surgery, perfusion, respiratory therapy, physiotherapy and occupational therapy, social work, child life, diagnostic imaging technologists, and pharmacy. Additional membership is drawn from outside SickKids and includes adult cardiologists from the University Health Network (UHN), Mount Sinai Hospital and Hamilton Health Sciences as well as paediatric cardiologists in London Health Sciences, McMaster Children's Hospital , Children's Hospital of Eastern Ontario (Ottawa), and Kingston General Hospital.

Key linkages with other proposed centres (Genetics, Cancer and Blood, Healthy Breathing) will further enhance the integration of the Heart Centre within the framework of the larger SickKids Community.  Many other professional and ancillary groups participate in Heart Centre activities with a greater or lesser clinical, research, and/or administrative relationship.

Cardiac Imaging, while remaining under the auspices of the Department of Diagnostic Imaging, is an integral part of the Heart Centre, as is Cardiac Anaesthesia, under the Department of Anaesthesia. Similar healthy collaboration exists with the Division of Genetics, the Division of Respiratory Medicine, the Division of Neurology and virtually all of the other subspecialties.

The complex nature of congenital heart disease and its genetic and syndromic associations require a multidisciplinary and collaborative approach.  We are the largest member of the Pediatric Cardiac Network of Ontario (PCN), a provincial forum which has become an important part of the organization of children's cardiac services in Ontario.

Through this forum, via a variety of means, i.e. regular telehealth conferences with cardiologists and surgeons from London, McMaster, and Ottawa, referral of patients, discussion of problems, and regular patient follow-up are all achieved between the groups.

There is also a network of community Cardiologists within Toronto. Each of these individuals work in a collaborative and supportive manner. Several provide part-time echocardiography staff coverage within the Echo Lab, and all attend our clinical meetings for continuing medical education, referral of patients, and development of research studies. New patient referrals to SickKids, and known patients requiring pre and postoperative follow-up, are triaged to our community cardiologists along well established guidelines, significantly reducing the outpatient work load at SickKids.

FUTURE DIRECTIONS

Our vision of premier international excellence is based on the four pillars of our mission:      Unsurpassed, measurable patient outcomes     Innovative, practice-changing research     Superb education, training and quality of work life     Exemplary patient and family satisfaction

Feel free to visit the website, learn about what great things Sick Kids is doing, and how you can get involved!

What if?

We all know that at some point something is going to wrong with our health, the health of those we love and that someday we will all die. That's a given. What's not a given, or shouldn't be at least, is the thought of it happening to your child. It's always a bigger tragedy if you hear of a child dying, being in a car accident, ski accident, drowning or violence of any kind. Children are sacred to us, we hold onto them, our jobs are to protect them. Just recently the world's heart broke when the news of the terrible tragedy at Sandy Hook elementary spread. Parents around the world who heard the story immediately thought of their own kids, and that night most gave them an extra kiss and a longer hug.

Think about it. For a moment I want you to allow your mind to go there... what if your child got sick? What if they were taken too soon? What would you do? Where would you go? What would your life look like? Most parents don't even entertain those thoughts, most parents don't need to, not even when they hear horrific news about someone else who lost their child. The thoughts are just too terrifying to properly imagine, too horrifying to entertain for any reasonable amount of time. Instead we choose to hug them harder and try to see the blessings rather than than the fear.

I speak about this because I know. I know what it is like to sit in an empty nursery and wonder if there would ever be a baby crying in that crib again. I know because I have had to kiss him on the cheek and say goodbye when they told us there was nothing more they could do. That is what I want to write about today, the fear that comes from an illness like CHD, and the hope that can found there.

Josh's first open heart was not until he was 6 months old, it followed 2 catheter procedures and a stroke. He went into the OR a happy, chubby, sweet little baby boy. He came out scarred, blue and clinging to life. The surgery didn't go as well as they had hoped and actually caused further damage. That was on Monday July 21st 2008, on the Friday morning following his surgery he was totally lifeless, arms and legs were blue and cold and to the naked eye he looked like had already died. I held him as the doctor told us that the only other option was to go in for a second surgery, with tears in her eyes she said "I'm sorry". The reality of it was simple. He was too weak to face another open heart and we both knew it. He was rushed down to the CCCU (Cardiac Critical Care Unit) and we were told he would be prepped for surgery. Hours later, thousands of prayers later, the surgeon came and told us that they just didn't want to go in for more surgery. He was too weak and they didn't think he would survive it. Instead, they wanted to wait, keep him on life support and have the weekend to reconsider their options. To me, it felt like it was answered prayers, like my goodbye might not be a goodbye after all. I think of all the hard weekends I have had in my life and none of them come close to that one. It was like I went to hell for the weekend and was given the grand tour. Every hour felt like a month and every day felt like a year. There were so many scares, so many times when his saturation levels dipped to deadly lows and we again had to prepare our hearts for the worst case scenario. On Monday morning, July 28th, the doctors came to us in the CCCU waiting room and proposed an idea. Instead of surgery they would first try a catheter procedure to place a device in Joshua's heart and repair the damage done during the surgery. While he was in the Cath. Lab they would run a test and if the test worked they wouldn't need to do the surgery. If it failed they would take him straight to the OR. We agreed, signed consent and once again we said goodbye to our little boy. I should tell you that it was the longest wait of our lives but it wasn't. We spent the time praying, and before long the surgeon reappeared. My stomach quivered when I saw him but he smiled at me and I felt peace. The test that day went well, the device was implanted in Joshua's heart and will remain there. We went to see him an hour later in the CCCU and for the first time in his life was pink.

Living with CHD is a day by day sort of life. It forces you to think 'now' and not 'one day' because you really don't know how long you will have. When the doctors tell you that you have 6 more months until the next ECHO you rejoice because you have 6 more months for someone to do more research, to come up with new ways to help, 6 months for funds to be raised, 6 months for people to be trained, it means you have 6 more months with the child you love so much it hurts. This is why I care so much, this is why I clog up twitter and facebook every time Heart month comes along.

I didn't lose my son, every day I thank God for more time with him. I am one of the lucky ones, and that is something else I know. There are many parents who have faced the worst that CHD can do and lost the battle, there are parents even now who work tirelessly to raise awareness, raise funds, change laws so that it what happened to them won't happen to us. I thank God for them and for the little warriors that didn't make it and I pray daily for the survivors, that there will be 6 more months for them too.

The device in Joshua's heart, the one that saved his life that Monday in July 2008; it was only created five short years before. If not for the research being done we wouldn't have Joshua with us today. There is hope, but first MUST come knowledge.

My guys are helping raise awareness this year! Will you join them?

In all my research I am finding that Canadians are not as involved in CHD awareness. There are Moms out there dedicated but the media is a tough nut to crack and though districts and communities are declaring February 14th 'official' CHD awareness, the sad reality is that still most media are not getting involved. I would like to see this change... as would my guys. I need your help with this like never before. COME ON CANADA! We are a proud and mighty nation, we can be LOUD when it comes to hockey, Tim Hortons, our toughness against the weather... I am asking you to GET LOUD for our heart warriors too! Help me out. Share the posts about CHD awareness and help these two little men with their cause. It matters... it's not a funny joke, they aren't trying to get a puppy, they don't want a trip to Disney land if they get 1 million likes... they just want you to know about CHD, what it is, what it does to the kids affected, what you can do to help. Josh wants it for himself, so that he can grow up big and tall and one day be a fireman or a hockey player (depends on any given day) and Kaleb wants it for his big brother, because he loves him and considers him his best friend.  Me? I want it because there are more kids out there than just mine, more little brothers and sisters who want to have their sibling around for the long haul, more kids who know all to well the pain and suffering of living with CHD. Kids who are not yet born who could have their lives saved with early screening and proper care, and I want my son to grow up and find that there the health community cares about him and has the ability to help him when he's ready for it.

Meet Logan

One of the great things about this blog is hearing from readers who have similar stories to share, parents who are coping with the same terrifying defects and know too well what CHD can do to a family, and hearing about the amazing kids who are braver than they should have to be. This month I will share some of these stories with you, this being the first. 

Submitted by Logan's Mother

Our lives were shattered with the utter of four little words, “I hear a murmur.”  As our pediatrician looked up from our two week old son and began to explain how I needed to take Logan down the hallway for a few tests I found myself in complete shock.  In total disbelief that this was even happening I felt numb.  I simply followed orders and walked down the hallway with my mom to get Logan an EKG and chest x-ray.

What was supposed to be a happy day filled with our new baby boy’s two week well child checkup, a photo session with our three year old and his baby brother and fun time with Grandma quickly turned into every parent’s worst nightmare.  When the tests were complete we returned to the office to await the results.  Making the phone call to my husband who was at work was not only emotional but very difficult.

In a matter of minutes your life can change forever. 

Three days later we found ourselves sitting in an exam room at the Children’s Hospital, an hour and a half away from our home, reeling from the news we had just been handed.  We received confirmation that something was indeed wrong with our baby’s heart but what we thought was just a Ventricular Septal Defect turned out to be much more severe.  Our precious little guy not only had a VSD but he also had D-Transposition of the Great Arteries, Double Outlet Right Ventricle, Pulmonary Stenosis and a Right Aortic Arch.  All of which were killing him.  His oxygen saturations at the time of his diagnosis were in the 60’s and he was in heart failure.  He required immediate intervention in the pediatric cath lab to save his life.  Those final moments that I rocked him before they took him into the cath lab were the most agonizing moments of my life.  I was devastated by his diagnosis, fearful of the unknown and terrified of losing him.

After many tears and several hours later he came out of the cath lab and was placed in the NICU.  For the next three days we were thrust into what seemed like a foreign land with a foreign language.  We had to learn medical terminology, take CPR, understand Logan’s new cares and come to grips with everything his future would entail.  It was overwhelming emotionally, physically and mentally.  Yet we were so unbelievably thankful to have our baby boy still with us.

We were able to take Logan home for two weeks before it was time for his first heart surgery. 

When Logan was five weeks old he had his first heart surgery, the BT Shunt.  Handing my baby over again to the arms of strangers was incredibly hard.  I was a wreck the entire time he was in surgery and praying that he would make it out.  Several hours later he did and seeing him for the first time after surgery was quite traumatic.  They show you pictures in a book prior to surgery to try and help you to cope with all of the things you are going to see post op but it doesn’t even come close to what it is actually going to be like.  The many, many machines pumping lifesaving mediations through his body, the ventilator helping him breath, the shocking scar running down his chest, the constant beeping of monitors, chest tubes protruding from his chest, and his little lifeless body laying there unable to move or open those big brown eyes.  It was absolute torture not being able to pick him up and swaddle him in my arms. 

Logan spent the next 31 days in the hospital suffering many complications and setbacks along the way.  He had focal seizures, bloody stools later determined to be caused by a protein allergy, breathing difficulties and a severe oral aversion that led to needing a feeding tube.  Being away from our three year old son, Wyatt, for so long was hard on all of us.  He came to visit on the weekends but it was so upsetting to him and us every time he had to leave.  All we wanted was to be together again and once Logan was stable enough we did.

Logan was still very sick when he came home.  He was on many heart medications, had severe acid reflux, a severe oral aversion and a feeding tube.  We spent a lot of time the next eight months going to see our pediatrician and traveling for cardiology follow-ups.

When Logan was ten months old he had his second heart surgery, the Rastelli.  This time around we were more prepared and took the speed bumps along the way post op a little better.  His recovery time was much shorter despite developing a cyst behind his vocal chord that required laser removal so he could breath, trouble coming off of milrinone and a mystery infection.  During the Rastelli surgeons replaced his severely stenotic pulmonary artery with a synthetic conduit.  Since the conduit would not grow with him we were told to be prepared for more surgery in the future to replace it as he grows.

Brining him home from this surgery was such a huge celebration for us.  It was the first time were going to be able to take him out in public, attend family gatherings and just feel like a somewhat normal family again.  Six months later, however, we were quickly reminded that the world of Congenital Heart Defects can be unfair.  We learned at a routine cardiology checkup that Logan’s conduit had a huge bulge in it and he was going to need a chest CT Scan to determine how serious it was.  When the results came back it was confirmed that Logan needed an immediate cath to see if they could perform an intervention to buy him a little more time before he needed surgery again.  We were devastated because we had originally been told to not expect surgery for a few years, not months later.  Thankfully the trip to the cath lab was a success and it bought us some time. 

Logan endured his third heart surgery when he was three years old to replace his conduit and remove a muscular growth from his right ventricular outflow tract.  This surgery was one of the hardest for me personally.  It was very different than handing over my baby that I barely knew.  This was my sweet little boy who kissed me, hugged me, shared with me his sunny little personality and was the light of my life.  The thought of having that ripped away from me was agonizing.  But Logan once again pulled through his surgery and recovery despite suffering a surgical complication known as Dressler’s Syndrome which causes fluid to develop around the heart along with other symptoms.

Since then Logan has grown into a vibrant free spirited six year old little boy who lives each day to the fullest.  He is sweet, silly and funny.  Looking at him now you would have no idea all of the things he has been through the past six years.  He started kindergarten this year and has been busy making friends, something he has wanted for so long.

Every person in our family has been changed by this journey.  While it has not always been easy and will continue to be something we have to battle every day in the future as Logan will require more surgeries,we wouldn’t trade it for anything.  It has made us who we are, brought us all closer and taught us so much about what is really important in life. 

We are incredibly thankful for each day we have been given because we know how close we came to losing everything.  At the time of Logan’s birth it was not routine practice to receive a 20 week ultrasound in my OBGYN’s office to screen for heart defects.  It was also not routine practice to have a newborn baby screened for heart defects before leaving the hospital using a pulse ox.  Not a day goes by that I don’t think of how things could have turned out so differently because our baby came home undiagnosed with life threatening congenital heart defects.  Thankfully due to the efforts of so many amazing heart moms this will one day no longer happen.  Legislation has happened or is currently in the works in many states to make pulse ox screening mandatory on every single newborn.  It is a wonderful feeling to know that one day no family will ever have to find out about their child’s heart condition until it is too late.

Our family had the amazing opportunity to be filmed for a documentary on congenital heart defects called The Heart of the Matter that was produced by TMK Production and The Children’s Heart Foundation.  It made its televised debut on PBS stations across the United States last summer.  If you have yet to see it you can watch a trailer for the movie by visiting http://www.congenitalheartdocumentary.com/

To learn more about Logan’s journey and to follow our family’s story visit our blog at http://www.whenlifehandsyouabrokenheart.blogspot.com

5 questions

This has American statistics but the questions you should ask hasn't changed.

Finding out about CHD was not a choice for us as a family. Until Joshua came we had never heard of congenital heart defects. When I heard the term 'birth defect' I imagined a woman I saw once when I was a kid who had a tiny hand coming out of her elbow. I had no idea the devastating things that can happen to a baby while in the womb. My biggest concern on learning that I was pregnant was miscarriage, once I made it to the second tri-mester I breathed a sigh of relief and began to get really excited. We were asked if we wanted to do any genetic testing, for different types of syndromes etc. but we said no, in our mind the child was there, why worry what might happen when he was born? Neither Tim nor I believe in abortion as a choice, so why stress more tests?

The one thing we really did want to know, mostly because neither of us are very patient people, was the sex of our child. I can't tell you how excited I was for that ultra-sound. It was something I counted down to, anticipated more than my birthday (a huge deal for those of you who don't know me) and when the day came I couldn't contain my excitement. We had a name picked for both sexes, Kiera for a girl, or Joshua for a boy. Tim and I both hoped for a boy, maybe that's wrong, maybe we should just have hoped for a healthy child, but we both longed for a son. When they showed us his 'package' (the technicians word not mine) we both cried with joy. This was our Joshua. We saw and heard his heart beat, not knowing that it was a broken heart we heard.

Just a week later we got a call asking us to go for a stage two ultra-sound, there was a small chance of a problem they said, 'probably nothing' but they wanted to make sure. So Tim and I made an appointment and off we went. A week after that we were asked to go to the Fetal ECHO lab at Sick Kids in Toronto. We were again told 'it's probably nothing, let's just be sure."

As you know, this was the day that we came to know of Joshua's heart defect. This was the day that we learned first hand what CHD is. My prayer is that you hear about CHD here on this Blog, and not in a hospital.

If you are regular readers to this blog then you have heard the story before, but bear with me for a moment. I have a purpose to rehashing this particular tale.

There is nothing worse than hearing a doctor tell you that your child is sick, nothing worse than hearing him say 'there will be no miracles here', nothing worse than staring death in the face and having the professionals say there wasn't much hope, that you should abort and try again. 

This post is about hope, hope that we found because there are people out there doing research for CHD, people who are doing what they can to improve the chances for little boys and girls not yet born. Joshua is now a statistic in hope. He's proof that there are kids who can survive an early birth with a heart defect. However, and this is important... he's also evidence that early detection can save lives! If we hadn't known about his heart defect Joshua would not be here. I would be visiting a cold grave each week rather than getting warm snuggles and soft kisses. I am not trying to be dramatic, I am just simply trying to make my point clear. One of the reasons I feel so passionate about CHD awareness is because people, young men and women having children, need to know about early detection. The more knowledge you have the better the chances that your baby CAN live!

I don't know how many times through out the pregnancy we thought we he would come early, each time they would say to me 'we need to take him today' (he was technically viable, if not for the heart defect). Each time we would ask for a pediatrician to come in to advise us on what to do, and each time the Dr. would say 'with his condition he would not be viable'. The other doctors who had wanted to take him early would dig in and do their best to keep him where he was so that we could have more time until he became 'viable'. Finally, when Josh was five weeks early they had no choice to take him. As you know from the last few posts, we should have lost him that night. If not for the amazing team at both Mt. Sinai special pregnancy unit and Sick Kids in Toronto we would have lost him. By all accounts we should have lost him.

There are many reasons to educate yourself on CHD's, to educate those around you. Early detection is just one of those reasons. I ask you again, to consider sharing this post with those you love, with friends, followers, twitter-nation, whomever you choose. Please, don't just read this and move on to the next posting of interest. Share it, and help us to raise awareness.

What's the point?

Josh is clearly a blessed little boy, just read this blog and you will know that as his parents we feel he has and is receiving the best possible care through Sick Kids hospital in Toronto. He has already survived 5 years longer than he should have and he's only 5 years old. So the question that begs to be asked, why the need to raise awareness for CHD (congenital heart defects) at all? What's the point?

This month I will make it my mission to help you understand why I feel it's my job to help raise awareness, and more importantly I hope to get your help. My request is simply this. Help me get the word out, share the posts, email them to friends, tweet them, hook them up with the Path, post them on Facebook. There is a serious lack of knowledge surrounding this defect, and it's costing lives.

I have said this before, but I feel one of my main jobs as the parent of two boys is to see them 'safely' into their futures. What I have discovered on this journey of understanding Joshua's heart and medical care is that though he is blessed now to be in a beautifully designed system that cares for his every cardiac need; this will not be the case when he is released into adult care at 18 years of age.

With the advance of medicine in the last number of years the kids who are born with CHD are surviving into adulthood (obviously great news!), and so the care of Adult CHD patient is very young in it's development. In many ways this is a baby system, and I don't want anyone to lose their child (because no matter how old they are, they are always your child) to a system that is flawed, by lack of funding, research and staff.

Let me break something down for you:

12 Canadian children are born each day that have some form of CHD

180,000 estimated Canadians (adults & kids) are living with CHD right now

100,000 estimated Canadian adults are living with NO program equivalent to that provided for children or people with acquired heart disease.

There are only 5 regional facilities that have been identified as 'regional center of excellence' (with CHD specialists)

There are only 22 Cardiologists in all of Canada who have been specifically trained in the field of adult congenital heart defects

Pretty much sums up my concerns right? How can I do my job as Josh's Mum properly if I don't do everything in my power to see those numbers change before he reaches 18 years old. What good is it to help him arrive at 18, only to lose him into an adult system that isn't ready for him?

As the month progresses you will learn more about the issues surrounding the adult system, the needs, the areas of concern, and the ways that we as a community can help.

In the world of social media, where you will share a funny picture, an ad or contest without thought or hesitation I ask that you take a moment to share this as well. Help me, help Josh and the 12 babies born today with CHD, help the 100,00 adults in our country who are not receiving the care they need in order to live long and healthy lives. The faster we raise up as a nation and ask for a better system, the more the youth heading into the field of medicine learn of this desperate need, the more the adults with CHD learn about the defect they have, the better the chances for change.

Thanks for your help.

Happy Heart Month!