6 Weeks...

Well, we've made it to the 6 week mark!

It's been pretty quiet here on the blog.  No excuse;  just the reality....we've been in the trenches.

And now that we're starting to see a glimmer of life post surgery....life that is becoming a bit more 'normal' and a bit more tolerable....I can now admit how tough it's really been.

It's been all around tough.

Appetite tough...
Going out in public tough...
Medicine tough...
Mentally exhausting tough...
Blood test tough...
5 yr old needing control tough...
Marriage tough...
Simple things tough...
Overwhelming tough...

I think you get the idea :)

But how can I complain, when Nate is here....with us!  He is doing well!!  I am so thankful for the incredible progress I see, as recently as the last week.

Taking his meds is now routine - dare I say easy?  A far cry from having two adults and 4 arms holding him down while shooting in the nasty stuff to the back of his mouth.  We've got a routine down pat, that includes his favourite chips and his beverage.  So what if he's eating chips after breakfast!!  I'm also not having to be a chemist - crushing and mixing and 'hiding' his Coumadin everyday.  He's chewing those pills (again, with Doritos - but I'm not complaining!!) and that has been such a relief!

His finger pokes are still never fun, and I do like to make sure my windows are closed before doing the poke (it can still get a little noisy :) ), but the frequency has decreased, which makes it much easier.

His appetite is still sketchy.  We have not had a normal breakfast or night snack in 6 weeks (normal being cereal, toast, etc.), but really - so what if he's having pasta for breakfast....it's all carbs anyway!  Cooking meals has been frustrating, as I do try to cater to his tastes, often to have him take one bite and promptly tell me he's full.  Or demand an entirely different meal.  You will understand my willingness to cook according to his needs, when you've been in a situation where zero food is going in....you'd do just about anything to get him to eat.

His energy level has improved!  Now that the majority of the healing has taken place, it's time to see how he will tolerate activity and endurance.  At this point, Don and I both agree that his energy level has improved from pre-op.  Even in just the last week, I've been so impressed with his desire to be active and the progress he is showing.  He still knows when he's tired, and self regulates his activity.  But we've come a long way, from even a few weeks ago, when I was doing a LOT of carrying him around!

Through it all, Brady has been the most awesome Big Brother.  He is so keenly aware of Nate and his activities, and is always the first to ask Nate if he's okay.  In the first few weeks post-op, when the boys were playing in the yard, Brady came to me and said he thought Nate's heart was ticking a bit too fast.  Another time, when Brady wanted to go play ball at the school yard behind our house, he got out a lawn chair and brought it to the field for Nate to sit on and watch....it was a sweet moment.  Brady has taken these difficult weeks in stride....never complaining when Nate would get all the attention, or exceptions to many rules.  When Nate would be having one of his (very common) fits of rage, Brady would often come and whisper some advice in my ear....it was usually an idea to calm Nate, to give Nate something that would make him happy.  And often he and I would just exchange a little look with each other, smile, and nod knowingly.  As yucky as those moments were, Brady could understand that Nate was just dealing with some tough stuff and responding in the only way that he could at the time.

And we've been surrounded by so many that love us all so much.  It's hard, for the ones that love Nate so much, to see him dealing with such anger or fear.  I know they all would do anything to make things easier for us in those times.  It's maybe even harder to be the one who wants so badly to carry the burden, to ease the hurt, than to be the one in the trenches.  We have been carried through by each prayer, each kind word.  We are so thankful to each one of you!  Thank you for loving us - and for loving Nate - especially when he didn't return the love.

We had another cardiology appointment today.  And today, Nate behaved like a charming, sweet and kind little guy.  Do you know what a relief that is, to be able to take that component of stress out of the equation?  So thankful.  As far as the appointment, no news is good news in this case.  We're going to change up some of his meds and see how things go in the next two weeks.

One thing that I've learned of myself, as a heart mom, is that I find great satisfaction in the technical details.  I don't like the 'layman's terms' in regards to Nate and his health.  Give me details and use the real words.  I suppose in the very beginning, the simpler terms were better, but now... bring it on.  Side note:  I had to inwardly chuckle during a particular rounds while in the PICU in Edmonton.  The doc was taking his residents through quite late one night.  After one of the residents presented Nate, the doc went on to do quite a intense grilling, questioning them, as to Nate's particular heart complexities, L-TGA in general, reasonings behind treatment, and implications of different parameters. Oh my - I just had to hold my breath as this conversation went on at the bedside.  Truly, I was rooting for them to answer the questions correctly, the silence while waiting for any of them to answer was painful!!  I just wanted to whisper under my breath and give them the answers they needed.  Anyway, I like details, and I know some of my heart mama's might be interested as well, in some of the details, so here are a few:

• Nate was on bypass for 123 minutes, an aortic clamp time of 72 minutes.
• A 25mm On-X mechanical valve replaced the severely regurgitant left AV valve (Ebsteinoid like)
• A Medtronic dual chamber epicardial pacemaker was implanted, with leads capped and were tucked away behind left rectus sheath (no generator implanted yet).
• The VSD that was closed was the diameter of our surgeon's pinky....how's that for detail?!?  Lol, it's the best info I got!!

My Big Ol' Bro

Since you only turn 40 once in your life, I thought this would be the best time to share this little gem with my big brother - who turns 40 today!

My sister came across this note recently.  It was written by me, to my brother Kerry.  She found it tucked away in one of the Encyclopedias that we had at home growing up.  Judging by the content and my reference to 'Johnny' (my brother's boss - AKA Johnny Buhler -  for a short time after Grade 12, before Kerry moved on to big things!!) this note would have been written somewhere around 1991.

I had a good laugh over it!  Although everything in it remains true.

Happy Birthday Kerry!!!

In case you can't read it, here it is:

Kerry, 

Just a little note to say 'Hi'!  Hope you are having a great day (don't give Johnny too much trouble!).  Just wanted to say that I really love you and appreciate all that you do for me, even though I don't show it all the time.
I'm praying for you and remember that Jesus really  loves ya and is looking out for you! 

Love,
Carole 

P.S. I made these cookies specially for you!  Enjoy them and eat the whole batch if you want!  I'm on a "diet"!

 Love you, Kerry!!

Fierce Love

Mother's Day - 2013

Mother's Day is celebrated in two different ways.  The one way that I'm most used to celebrating is how I've spent the last 35 years doing:  honouring MY mom!    That will never change.  I love my mom and am so grateful for each way she shows her love to me, her child.  She loves each one of her children so dearly, that much is clear!  So whether it is shown through her words, prayers and encouragement, or her desire that we zip up our jacket and for sure that we cover our ears when it's cold out...it's all done in love.  And we love her so dearly!

Then, the newer type of celebrating Mother's Day began 7 years ago, when I first became a mom.
My thoughts and feelings about Mother's Day this year are a little bit different than other years.  There are several reasons....mostly stemming from the intense time of 'mothering' I am in right now.

If there is one thing that has been going through my mind the last few days, it is this:

Being a mom hurts.

Now before you jump to conclusions or opinions, hear me out.

This love, the love that a mom inherently acquires the moment she becomes a mom, and the love that continues to grow exponentially through each 'mothering moment'.....this love becomes fierce.

Fierce love.

And anytime you allow yourself to love so fully, you open up and expose your own heart to the hurt that can come along with it.

In my moments, I have been hurting for the pain Nate has been in.  For every confusing moment, every out-of-his-control moment, every physically painful moment.

This fierce mothering love desires.... yes, longs to take any pain and hurt from your child.  And when we can't - it hurts.

And when you become one of the only people your child reveals their inner turmoil and anger to....that's when this fierce love needs to be the strongest.  In many ways, I'm so thankful that Nate is able to express his 5 year old emotions to me, in his own way....even if it isn't positive.  He needs his voice to be heard in all of this.  And for now, he needs to feel safe, protected and loved.

And in the moments where he can forget about all the yuckiness of the last while;  when he shows the little parts of Nate that we know - the laughter, the twinkling eyes, the silly and goofy little boy who hums The Imperial March while building Lego....in those moments, this momma's heart breathes a sweet breath, and thanks Jesus for the gift of being able to love.

To love.  Fiercely.

Sweet surprises.

Isn't it just like our God to send us little surprises to brighten our day!  We've been talking about Kingdom Moments in church recently - and we've had a few of them!!

Just one example:  After a bit of a rough morning (after Don had left for work) getting Nate's meds in and doing his finger poke, and getting him happy - or at least compliant enough -  to head to Brady's school at 10:30 for their Spring Concert, Don called me after lunch and gave me a little patch of God light for the day.

An envelope, addressed to us, was sent to Don's work.  In it was a card with beautiful words that touched us both.  Someone that we don't even know, but is a friend of our friend (that's you, Shawna!) had heard about Nate and was following along on our journey through this blog.

In the card were also instructions to use the gift they sent to go out for a meal, and treat Brady and Nate to special treat.  When I told Nate about this person, whom we didn't even know, but knew all about him and his operation.....and wanted to do something special for our family - and that HE could pick the restaurant for supper, you should have seen his little face.  His eyes got big and looked at me excitedly, and yet he was trying SO hard not let his mouth turn into a smile.  He didn't succeed - and soon that cute little smile broke through his lips.  I told him that he could tell Brady about the special surprise and he did that with pride and excitement.  He picked his favourite Winkler restaurant - Twisters!

So, to the dear one, who made my boys day today, I thank you!!!

Tomorrow we head back to Winnipeg to the heart clinic.  It seems like we were just there, but it's been a week already.  He still had some fluid around his heart last week, and hopefully the echo will show that it's been resolved.  They'll also do blood work after the echo, and get our INR machine calibrated to the lab's INR results (please pray they get enough blood this time).  His INR numbers have been a bouncing around a bit.  From too low at 1.9  late last week, to too high at 5.0 on Sunday.  The sweet spot is 2.5-3.5.  But I suppose this is to be expected at the start, especially with the sporadic diet he had at the beginning, which has been increasing (changing the absorption of the warfarin) to getting a method of having him ingest the whole dose (my kitchen counter is turning into a drug lab as I crush and mix pills and try to hide them in different drinks, etc.!)

Thanks again for your love and kindness - for your prayers, emails, meals and hugs!!

Love you all!

Life at home....

It's hard to summarize and explain how life is back home. If you've ever been in a situation, even remotely close to this, you'll know what I mean. Yes, there is a huge relief to be home. To be together as a family, surrounded by our family and friends, in the place we are most comfortable...home. And yet, I'll be honest, flying home that day, my mind and heart were in conflict. It's a little scary being away from our doctors and specialists, for one. But probably, a bigger issue I was battling was what life was going to look like for us now. Like I said before, this wasn't a fix-it-and-forget-it type of surgery. To be sure, we did this to preserve and prolong the function of Nate's heart, and we will see the benefits of a less stressed (left sided) right ventricle, but there are many more and many new cautions that are a part of our life now.

This immediate time after surgery likely would put anyone on edge....watching for any unusual or unexpected signs and symptoms. So when Nate started throwing up in the middle of the night yesterday, you can bet I was alarmed. Thankfully no fever accompanied this episode, and the nausea did not continue, so today was a 'movie and games on the sofa' kind of day.

We're still battling with two of his oral meds. I would love to say everything is just wonderful and Nate is completely cooperative, but since you're reading this, you probably want to know the real deal. It takes both Don and I to do these tough ones. It is done as calmly as a mother soothing her child and with gentle and encouraging words, but it takes both of us to restrain him. It's horrible to do, especially for this momma's heart. And the hardest and most frustrating part is the spitting. We've done a couple in which he didn't spit any out and there feels like such victory with those. However, it is entirely defeating when it does happen. Especially with the Coumadin (blood thinner). While we are still getting his INR levels up and stable, his dosage changes based on the finger prick test. So you can imagine the pressure we face: when he doesn't take the whole dose - resulting in lower INR levels - which results in increasing his Coumadin dose - which really isn't accurate to what he may/may not need.

There have been wonderful glimpses of sunshine in our days though, too. Hearing him laugh, seeing a smile, especially when he is trying very hard not to! Even hearing the boys fight over their lego....it's a good and normal sound. Then there are the ways that we are being blessed by friends and family, as they show the love of Jesus to us.

The local church that some dear friends and family go to, surprised Nate with a special gift. Their Sunday School kids had been collecting money to make build-a-bears, and then donate them to a hospital for the kids there. Since the church had been praying for Nate, they chose to present a specially made (by a special friend) Jets bear to Nate. Even though Nate tried to be very stoic as he opened it, there was no denying that little smile that peeked through. Thank you to Bethel Church for their prayers and love!! And that's what it's all about, isn't it. Showing the love of Jesus to others. Being his hands and feet. Being the encourager, the listener, offering a hug. Being surrounded by people like this has added strength to our own. To my own dear family and friends and church family thank you for being part of Nate's story and our family's journey!!

Happy Birthday Braveheart.