So much...

Yesterday on Facebook I saw a meme floating around that looked like this...

Those are powerful words.

 So much has been given to me; I have no time to ponder over that which has been denied.  

Reading that, many different meanings pop into my head - it's so profound and highly relatable for any parent, but especially for those who have a child with a complex illness.  So much has been given to me - This past week a young heart warrior at SickKids lost her battle with congenital heart disease, and her mother has been in my thoughts and prayers every day since.  That could easily have been Jake at several points during his journey to a repaired heart, and I know in my own heart that it is always a possibility in his future.  Not too long ago I was sitting in a room at SickKids depressed and despairing, feeling like Jake would not get to live his life, that we would never be able to take him home.  But that wish was granted to me - and Jake lives each day like it's his last - never a moment wasted.  That's the life and death interpretation of this quote.

But there is the everyday interpretation as well...so much has been given to me - material possessions aside, my life is filled with love, family and friends.  My children are growing up in a great city, surrounded by family and friends, on a safe street, with a christian upbringing and as much stability as life with a CHD child can bring.

I know there are those who would look at my life and feel sadness, pity or relief that their children have whole hearts, I meet them almost daily in my outings with Jake.  When someone says "ohhh, look at the poor little baby" or "it must be hard to have a child who is so sick" there is no adequate response that I can give without taking up an hour of their time.  I'm filing this quote away as a response to these people the next time we meet.  So much has been given to me!

I have no time to ponder over that which has been denied.  This sentence leads my thoughts to my belief and understanding that God has a plan for what is best and good for our lives.  Goodness knows I have spent many moments wondering why God would create Jacob with a broken heart, but I believe down to my core that there is a reason.  And it's a good one.  And in all likelihood, I will never know what that reason is.  I leave that sentence knowing that what I do have - in Georgia, Jake and Jon - is much more rewarding and challenging than anything I may have been denied.

That's my sermon for the week :)

Sitting down to the computer now, I realize that there is so much to update on.

On Thursday the In Honour clinic for Jake was held at Canadian Blood Services St. John's.  Jake was at the clinic for the majority of the day, walking around and charming those who came to give blood in his honour.  It was a lovely way for us to spend the day, and the tally for the day was 58 blood donations. That is completely awesome.  Thank you SO MUCH to everyone who took the time out of their day to donate for Jake.

At the beginning of the day Jon and I were taken to the storage for the current blood supply for our whole province.  This was it... I was astonished.  Newfoundland and Labrador is one big province.  This is not enough blood!

I'm so sad that this pic turned out blurry.  This is our friend Morley.  Morley is a long time blood donor, and today was his 450th time donating.  Yeah you read that right - 450! Thank you Morley for all you have given, and for your promotion of the need for blood donors.  The world needs more people like you!

And last but certainly not least we got Nanna and Poppa both in to donate - for the first time! Jake is super proud of you both.  We'll all go to donate again in 56 days :)

If you are interested in making a blood donation, check out www.blood. ca - it's so easy, and makes a huge impact on the people who need this blood.  Hey, it could be you that needs that blood next.  You never know.

In other, less exciting news, the five "use" allergy tests that I have done for various types of tape/barrier cream were all negative.  Negative! I want to say that this is a good thing, but it doesn't explain the damage done to Jake's face.  We're seeing our dermatologist tomorrow, but I'm not sure he'll have anything new to add other than that Jake obviously needs to stop using tape on his face.  

On Sunday Team Jake had the oppourtnity to walk in the Red Shoe Crew Walk for Families in support of Ronald Mcdonald House NL.  An enormous thank you needs to be said to those who donated to our team - Team Jake raised the most of any team that took part in the St. John's portion of the walk.  Our total was $2280! And we got photobombed by two strangers in the background of this picture :)  Way to go Team Jake - next year we'll aim for the $3000 mark!

Today was the day for Jake's monthly sedated echo...check out this cutie pie as we waiting in the waiting room at cardiology for his name to be called...Jakey always wears his pjs to his echos because they are so early in the morning!  We got the reassuring "no change" from our cardiologist again, thank God.  There were a few tense moments leading up to that where his left pulmonary artery couldn't be found on the screen, and we thought we might be sent down for an emergency CAT Scan, but then...there it was...it's getting harder and harder to see, in part because of the bump on Jake's upper chest from his repeated sternotomys.  (The breaking of the chest bone to allow access to the heart for those who are confused by that term) :)

Next week we're getting on a plane and going back to Toronto once again.  We are still hoping that the pacemaker won't need to be moved, and that the G Tube can fit around it in it's current location but we were reminded again today that that's an unlikely outcome.  I'd like to ask for specific prayers leading up to our October 3rd appointments - pray for guidance for the doctors/surgeons and for the mapping ultrasound to show a route for the g tube that doesn't require the pacemaker to be moved.  It's an unlikely outcome, but my God is a God of unlikely outcomes! I believe!

The downside to going back to TO is leaving Georgia.  She's still in her first month of kindergarten, and Jon and I think it would be too big of an interruption to her transition to take her out of her class here and place her in the class at Ronald Mcdonald House.  I am so thankful for my parents, they are stepping in once again to care for Georgia while we can't.  We still haven't told Georgia that we are leaving, and honestly, I'm afraid to.  I don't want to have that conversation with her.  When Jon booked our flights, Georgia heard me say say something about flying and immediately perked up, walked away from her favourite TV show, and asked me where we were going.  I didn't have the heart to tell her then, so I redirected the conversation instead.  I'd like to ask for specific prayer for Georgia too.  For her to know that she is loved, for her to have some understanding in a childlike way why we have to leave, for her to be happy and safe while we are gone, and for her to not resent her little brother for this interruption in her life.  

My Dad and sister are coming over later so that Jon and I can get a couple of hours out together, celebrating with a friend as he launches his latest book.  I'm thankful for that too.  It will be lovely to relax and just be together without any other demands on our time.

So much has been given to me...

Keep Calm and Trust the Almighty God

Last year in October 2013 we brought Jake home from SickKids after open heart surgery #3 - the Glenn.  We flew home with high anxiety and incredible happiness, on the plane holding a oxygen mask to our five month old baby's face.  One year later in October 2014 we will be heading back to SickKids for (hopefully) a gastronomy tube placement.  Remember my last post about Jake's allergies to the tape on his face? Well that night I moved the NG to the opposite cheek and retaped carefully with the tape that was recommended by our ICU.  Two days later Jake pulled out his NG in the tub and this was underneath...

Oh my dear.  I went into full frustrated Mother mode and contacted the Janeway, SickKids and our dermatologist.  Yesterday we got the needed response from SickKids, they had expedited our assessment appointment and booked us in for October 3rd.  There are 3 appointments for Jake on that day - G Tube Assessment, Mapping Ultrasound and Preanaesthetic clinic.  As things currently stand, Jake won't be getting his G Tube on that trip.  :(

The plan is for Jake's pacemaker to be moved on that first trip, then for him to come home and heal before making a second trip to SickKids to finally get the G Tube.  There is a slight possibility that all will be done in the one trip, but we won't know until we get the results from the tests being done on October 3rd.  Please pray for it to not be necessary for Jake's pacemaker to be moved - for the surgeon's to see a route to get around the pacemaker without needing to do two separate procedures.  I'm holding out hope for this, even though I feel the likelihood is slim.

In the meantime we are doing "use" tests for 3 different kinds of tape and 2 kinds of barrier creams (Cavilon and AllKare) to see which allergies are legitimate.  This test involves different kinds of tape being taped to his inner arm area, leaving it for 4 days, and then seeing if there is a allergy reaction when the tape is removed.  I'm beginning to suspect that it's the barrier creams and duoderm, as the reactions have always been a straight line of red - not heart or animal shaped like the hypafix would be.

Jake is still his happy and smiling self, although he does try to remove the tape from his arms whenever he gets a chance.  Check out this shot from today while waiting for big sister's bus to come down the street...

 
Dollface :)

We're having some technical challenges right now in our home - it's week 2 with no oven as we are still waiting for the part to come from the mainland, and this evening Jon broke my slow cooker while cleaning it out after supper.  Oh my.  We're getting creative anyway!

Georgia has adjusted well to school, and likes her teacher and loves riding the bus.  I'm so proud of her.  Lukey likes to wait at the bus stop for Georgia too.  Here are some waiting for the bus/getting off the bus pictures...

We are really loving our life at the moment, despite the stresses of the NG, taping and germ anxiety.  We are blessed, and we know it.  Each day is a treasure, regardless of how chaotic and stressful it is.

Tonight we went to Chapters with the whole family, and I really felt my germ phobia and anxiety taking over my whole experience - and certainly interfering with Jake because of all the hand washing and sanitizing I had to do while we were there.  From now until his October appointment I need to keep Jake well - there is no chance of surgery or anaesthetic if he is sick.  The last thing we want is a prolonged stay at Ronald Mcdonald House waiting for Jake to be well enough for his appointments.  Where is that bubble when I need it? I'm seriously considering taking Jake out of any outside activities between now and then - music, church, etc. I don't know what to do.  How do I find a balance that is healthy for Jake while not depriving him at the same time? I'm thinking it might be reasonable to have short term restrictions until after his procedures - this is shaping up to be a boring, stay at home month.  I don't know.  I don't have the answer to this puzzle.  Oh dear.

I think I need to make this my mantra...take a deep breath and...

We received a generous gift of help from a friend, completely out of the blue, that will take away some of the stress of the travel and time away from home.  You know who you are - thank you!

Don't forget Jake's blood donor clinic is coming up this week...Here's the poster again in case you missed it last time!

Your Grace is enough for me.

This has been an eventful week for our family.  Our big girl started Kindergarten.

Georgia went to school with only a little nervousness, and much more excitement.  I knew she was ready for it, and I felt like I was ready for it too - but I cried outside her locker on the first day.  I pushed back my tears quickly though, left her in her classroom and walked away.  That part was hard! I hope this year is a positive beginning to her education.  I pray that she will be safe and happy, and that her teacher will see her as a shining star and nurture her in the way that she needs.   I'm claiming Jeremiah 29:11 as Georgia's verse for this school year...

11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.

Love you, little princess.  Oh, and if you can't read the final line on the picture above, it says "When I grow up I want to be a mermaid." Dream big, my dear, dream big :)

Last night I put Jake in the tub, which may just be his favourite place in the whole world, and before I did that I put him on his scale.  I've not been weighing him as frequently as I used to, because the frustration that I felt when there was no weight gain, or there was weight lost, was just putting pressure on us to further develop his eating/drinking skills.  But last night I weighed him for the first time in a week - and the scale that has been reading 20 lb 2 oz for at  least the last month said this...

Then it was time for a dance party in Jake's room! YES! I honestly felt like he wouldn't reach 21 lbs until he was 2 years old :) Love being proven wrong at times like this.

We spent the last weekend of summer at Camp Starrigan with our church family, and had a wonderful time despite Georgia getting sick and running a fever for the last day and a half we had there.  Once the tylenol was taken she was outside running around again, so it turned out alright.  My favourite picture is from the 70's night...Check this out, are we stylin' or what?

We still have not gotten a surgery date from Sick Kids for Jake's G Tube, but I'm holding out hope that it will be soon.  We discovered earlier in the summer that Jake is allergic to duoderm, a barrier tape used to help keep skin from getting irritated by the NG.  The dermatologist told me that these allergies often develop over time because of long term use of the tape.  Today we discovered that Jake is likely also allergic to hypafix, which is what we have taped his face with since day 1.  I did a routine tape change and found this underneath:

Oh, it breaks my heart.  We then tried Tegaderm to tape the NG on the opposite cheek, but it wouldn't stick well although we reapplied it 3 times.  Then we moved on to dermapore tape, which didn't stick the first time either but seems to be sticking now.  It's been a hard day with a lot of unpleasantness and torture for both Jake and us.  I'll do the spot allergy test with hypafix this week so see if it is actually an allergy or something else.  His skin is looking a little better now, and his good spirits are back...but I feel traumatized and like I need a week in bed to recover from the torturing I did to that sweet boy today.  It's a terrible feeling and makes me so sad.  We managed to make it to the Temple's Rally Day despite the terribleness of the afternoon...This cuteness cheers me up without fail...but still I feel so guilty for all he is going through.  It seems so unnecessary and pointless to be tortured over tape.  :(

My head is still pounding from the headache I got putting the NG in and taping it repeatedly in place, but instead of giving in to the sadness and heartache I am finding strength in God's word again.

2 Corinthians 12:9:

9 But He said to me, “My grace is sufficient for you, for My power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me.

God's grace is enough.  We sang this one at our Corps retreat last week, and I know it to be true.  God's grace in my life today is shown when my sadness and weakness with dealing with Jake's new skin irritations are translated into me finding the strength to deal with it, and the comfort of knowing that God is in control.  I am inherently weak and flawed - I openly admit that.  But I also openly admit that I can be strong through God's grace.  Without my weakness I would not be open to the strength and comfort that God wants to provide for the trials in my life.  Would I prefer that there be no trials in  my life? - of course! But every one has trials and tribulations, they come in many shapes and forms.  I would much rather embrace my life with it's hard days and find strength in my faith, than I would try to find the solutions on my own.  I cannot imagine the loneliness I would feel from facing this life alone.  

The in honour clinic for Jake is being held by Canadian Blood Services in St. John's on September 18 at the Wicklow Street location from 11-7.  Come on down if you live locally and are able to donate blood, we'd love to see you there.  Jake will be there most of the afternoon for sure.  Here's a copy of the poster that is circulating:

Those of you who have been praying for baby Owen, thank you for that! Owen is now on the 4D recovery ward at Sick Kids, and his parents are able to provide most of his care finally.  He's a miracle baby...keep him and his parents Grace and Cory in your prayers please!

And in running news, look at this! Laura ran her first official race for Jake...We love our IRun4 runner!

Go team Superbaby!