Monday, December 22, 2014

The True Light

Last Monday I took Jake to his monthly dietitian and Occupational Therapist appointment, and left there feeling very defeated and worried about my boy.  Jake had not gained any weight once again, and for the first time he was starting to trend downwards on his growth chart, falling somewhere about the 3rd percentile for his height/weight combined.  That's a low percentile for a child to be at, and we immediately increased the amount of liquid feeds Jake is receiving through his NG, and I doubled my efforts to get him to eat high protein/fatty foods.  Today Jake was weighed again...and...he gained half a pound in 1 week! The extra calories are paying off, even though we have been struggling with increased vomiting from the extra fluid amounts.  Please be in prayer for weight gain and tolerance of the additional liquids.  Jake has been consistently drinking orally, but typically no more than an ounce a day and his preferred fluid is water, which of course has no calories.  Here is is today waiting patiently for the weigh in...


I took this picture a couple of weeks ago at the cardiologist's office, but I wanted to share it - the sweetness is amazing.  I don't know if you can see it in the picture but Jake is watching the snowfall.



Monthly RSV shots (Synagis) have resumed for the winter season, and although Jake hates the needles I feel some small measure of relief at another layer of protection for my honey.  Jake is still struggling with his asthma, although he has accepted his puffer more now that the frequency has been reduced to 3 times a day.  He calls the puffer his "pah"..."Want pah", he says when he sees it coming.  Along with the cold weather, my germ and sickness anxiety has also returned.  Jake rarely leaves the house now unless he is going to the hospital or to his Nanna's house, and when we do venture out our corner of the world is covered with hand sanitizer and lysol wipes.  Sometimes I wonder if the people watching me sanitize a shopping cart before placing my baby in it think I am nuts :)  Once Jake has had his G Tube surgery and recovered I'll be able to relax my efforts a little, but until then we have to keep him healthy.  It's sad though, as Jake has now started to pick up his shoes and say "I come" when he sees one of us putting on our coat and boots.  Little doll.  Someday I hope to give you the freedom you want, but for right now I need to keep you in the well sanitized cocoon of our house.

Christmas is fast approaching, and we took the kids to the Santa Claus parade last weekend despite the rain as it was 13 degrees outside and he had a good waterproof suit.  Lots of cookies were eaten while waiting for Santa!


You can see in the picture above that Georgia has lost her first tooth.  Can you believe that she will be 6 years old in January? Amazing.

We've been dealing with some health issues of our beloved dog Lukey.  Lukey has been struggling for a few years now with Lupus and hypothyroidism, now in addition to that he has a growth on one paw that the vet believes may be cancer.  After much debate we opted not to go ahead with a biopsy to know for sure because Lukey doesn't heal well because of his prednisone meds, and also because of the whopping $565 price quote.  Lukey's birthday is next week, and he will be 8 years old - we're going to party like it's 1999 with the sweetest dog in the whole world.

Jake also had his 6 month pacemaker clinic checkup, and we learned that his dual chamber pacemaker is pacing the bottom chamber of his heart 100% (as it always has been because of the third degree heart block), and the top chamber is paced 27% of the time.  This means that for 73% of the time one of the chambers is doing what it's meant to do independent of any assistance.  I'm thankful for that 73%, and hope to never see the number drop lower.  

John 1:9 says of Jesus's birth that "The true light that gives light to everyone was coming into the world".  I want to be sure to recognize the True Light in my world each day, not only at Christmastime.  There have been many times I have failed to see this Light, but I hope there have been more times that I have been able to recognize and embrace God's presence in my life.  Even through my anxiety, worry and frustrations - God's True Light is shining bright and I want to always be open to seeing and experiencing that.  






Wednesday, November 26, 2014

Walking Home...

Thanks to everyone for all the prayers and kind words.  We brought Jake home yesterday.

He's so incredibly happy to be home.  He is still recieving 2 puffs every 4 hours and struggling greatly with that, and his oxygen numbers are again in the high 70s.  I'm unsure what this means, but will be calling cardiology this morning to talk to our wonderful cardiologist.

Here's a snapshot of our homecoming waltz down the hallway of the Janeway :)


Sunday, November 23, 2014

Our "Second Home"

We've been back in our "second home" since Friday morning - the Janeway.  Since Jake's discharge after having RSV his oxygen saturations have been consistently still lower than normal, and that in itself had us watching him closely.  Then on Friday morning he started coughing, runny nose, and feeling rattly in his chest so I called cardiology and they suggested he come to Emerge.  After spending the afternoon in Emerge Jake was admitted because they expected him to become progressively worse over the course of the day/night.  And he did. We avoided oxygen assistance until Saturday afternoon - but then his sats were low and he was breathing fast so we decided to put on the low flow oxygen prongs.  Jake has managed to avoid an IV this time around (knock on wood!) so that's been a little break for him.  Now it's Sunday morning and we're still here.  I'm expecting it will be Monday or Tuesday before we get to take him home.  It's all up to Jake - whenever he recovers enough to not need the oxygen for a consistent period of time then we'll be discharged.

The unfortunate news from this illness is that Jake has developed asthma as a result of his bout with RSV.  That's the reason why his oxygen levels and breathing patterns have not returned to his norm of high 80s/low 90s.  So, we add to his daily routine 2 puffers.  One for daily use, and one for when he is really struggling.  In my reading on the topic I came across a study that showed that in children under the age of 2 who have RSV and need oxygen assistance during that virus, 50% will develop asthma as a result.  This is particularly true for children who have chronic illness of the lung or heart.

So far the puffer has been a torture method for Jake.  He has to be physically restrained and holds his breath for as long as he can when the mask has been placed on his face.  It's awful.  I'm really hoping he will adjust to it, and soon.  Right now it would be impossible for one person to administer the ventolin by themselves, because of how hard he fights.

Here's a snapshot of Jake just after waking this morning, he had a little to drink and a few nibbles of breakfast.



Yesterday I was able to step out of the hospital for a couple of hours with Georgia to celebrate the Little Ladies Night Out at the Temple with her.  She was princess Georgia and treated as royalty.  It did my heart so good, and my belly too - real food!  It was a blessing.  I love being able to focus on Georgia, especially at times like these when Jake can easily monopolize all of our attention.




I was thinking last night of how well we have adjusted to our life with Jake.  These hospital visits don't get under our skin the way they used to.  I've become very comfortable with the equipment and with my knowledge of Jake that I often direct the nurses or doctors in what he may need.  And even stranger, the nurses and doctors will listen to me!  If Jake gets tangled up in the oxygen tubes or the saturation monitor wires I'll unhook them, untangle him and then reconnect.  No need to bother the nurses with that! If his IV line is hurting his vein, or it's about to collapse I'm the one who sees it and brings it to his nurse's attention. Flash back to Jake's first months at SickKids though - I wouldn't touch anything without asking a nurse first, and would question myself if they asked me what I thought Jake needed.  It's been a full 360 spin of understanding and knowledge for me and Jon in this daunting medical world.  But we know our son.  We may not have all the technical knowledge, but we know Jake.  That's what makes the difference.  I'm thanking God for this development.  It was a hard road achieving it, but we have arrived.  This is our life, and even in this moment of sitting with my son on a hospital bed while he watches his third movie of the day while coughing and breathing quickly - it's good.  I wouldn't trade it for anything.  I'm thankful and blessed in the midst of it all.  The song that always plays through my mind during Jake's hospitalizations is Praise You in This Storm.  I have shared it several times before on this blog, but one more time won't hurt.

Though my heart is torn.  I will praise God in this storm.



Wednesday, November 12, 2014

Another delay...

Last week Jake was hospitalized at the Janeway for 5 days, we had brought him in because he was coughing, vomiting when he coughed, and his Oxygen saturations had dipped to low 70s.  We spent 4 days in PICU and one on 4Med with Jake. The nose swab eventually proved that Jake had RSV (Respiratory Syncytial Virus), which we had been told was one of the worst things for heart baby to get.  Given that Jake is no longer a "baby" he was able to fight it off with the help of oxygen.  Jake recieved Synagis shots to help prevent RSV last winter from December to April, and these should start up again next month to help prevent a occurrence.  I'm so very thankful for my Mom and Dad for their help once again.  Mom stayed each night with Georgia at home, and while Jon was working in the daytime Mom and Dad came so I could go home to shower and eat real food.  Here are some pictures from that "fun" week :)


The night Jake was admitted...he needed 100% oxygen.  He was so sick.


A few days later...







All discharged! Walking out on his own steam...

 
Since we've been home Jake has been much happier.  His oxygen saturations are still low for him, but as long as he has no extra work breathing cardiology says that is ok.  Besides being a little slower and sleepier than usual, Jake has a lingering cough that makes him quite uncomfortable at times.  We had been waiting to hear from SickKids whether this admission and RSV diagnosis would change the date of Jake's G Tube surgery, which has been scheduled for December 3.  Today we finally heard back - unfortunately, it does indeed delay the surgery for Jake.  We are now rebooked for January 21, and will need to keep Jake healthy until then.  Easier said than done, my dear!

On Saturday Jake  vomited two of his feeds, along with his NG late at night.  We didn't replace the NG or the feeds that night because Jake was coughing so hard.  The following morning this happened...



A new record of 95ml! Not all at once, but in small portions - first 55, then 22, then 15, to make up the grand total of 95 by the end of the day.  A new all time high for Mr. Jake, it only took him 19 months to get there.  I'm so proud of this accomplishment but at the same time I feel like it's such a Catch 22.  I know Jake can drink his fluids.  I know this happens only if he is thirsty.  In order to learn to drink more he needs to feel thirst.  BUT. With his narrowed left pulmonary artery dehydration runs the risk of forming a blood clot which can have catastrophic effects on him.  So, we can't let him actually be thirsty, but if we could I really and truly think he would drink.  It's such a frustrating thing for me to think about.  Jake can do it.  I know he can.  But we can't create the ideal conditions that would allow him to want to drink.  Heads they win, tails you lose.  Oh dear.

This weekend coming up the Heart and Stroke Foundation and the MUN school of Nursing are putting on a conference called Living With Heart Disease: The Newfoundland Story.  I'm really excited, as there has never before been a conference with a focus on congenital heart disease (as opposed to acquired heart disease) and I have been part of the planning meetings since the first stage.  I've been invited to sit on the panel at the end of the day, as a Mother with a child with a CHD.  I'm super nervous about that, but I guess they knew what they were doing when they asked me? The first presenter that day is Jake's own cardiologist, speaking on Congenital Heart Disease across the lifespan - I fully expect that to be a fascinating half an hour.  The next presenter is baby Sara's own Mom, Danielle.  Remember miracle baby Sara? Yeah, her Mom! It's going to be a good day.

Our whole family, except Jon who hasn't been feeling well, has now gotten the flu shot.  Georgia fought hers this year, which really surprised me as she has never done that before.  But we made it happen.  I came across this article: http://www.skepticalraptor.com/skepticalraptorblog.php/scary-flu-vaccine-ingredients/  which lays out the most logical argument I have come across yet for why the flu shot is not dangerous as anti-vaccination theorists like to claim.  It's a worthwhile read if you are having any doubts about the flu shot for yourself or your family.

I missed posting about Halloween so I'll share these awesome pics before signing off...Last year for Halloween Jake was a sickkids surgeon...this year that costume still fit!

Here at 6 months old



Here at 18 months old



But of course he also had a new costume...Here are my spooky skeleton girl and crabby boy :)



Sunday, November 9, 2014

Chosen.

A couple of Sunday's ago my Mom asked me to be part of her message, to share my story and thoughts around the theme Chosen.  The following is my portion - I shared it with St. John's West Corps and St. John's Temple Corps.  It's from the bottom of my heart, and more than few tears were shed while writing it.  I firmly believe every word though, and stand by it!

Here it is.  From my heart to yours.  

Two of the meanings of the word “Chosen” according to Webster's Dictionary are “not by choice” and “handpicked”.  There is one path that life has led me down that would not have initially been my choice, if I had had any input in the decision.  I can see myself standing at the foot of the path of having a child with a life threatening illness, peering into the unknown world of surgery, hospitals and palliative care, and saying to those around me – I am not strong enough for this path...this path belongs to someone else.  Having walked this particular path for 18 months of my son's life, I believe that this path was “handpicked” for me by God himself.

Let me tell you a little of my story.  My name is Lisa, and for as long as I can remember I have loved God and trusted my life to His care.  My life has been a good one, filled with many blessings, but in some ways my faith was the naïve faith that believed that God would never allow anything bad to happen in my life.  When I became a mother my journey as a Christian took on a new meaning.  I have been blessed with two beautiful, perfect children.  Georgia is five years old and just started Kindergarten – she is my strong, imaginative, loving and beautiful girl.  Jacob is just 18 months old, and it was his path that I was referring to in my “chosen” analogy.  You see, Jacob is a miracle. He was formed in my womb with only half of a normal heart.   The doctor at the Janeway who diagnosed his heart defect held my hands and cried with me and told me that my baby boy would probably not survive to be born.  By the grace of God he did survive...and he has endured more suffering in his short life than most people endure in their whole lifetime.  3 open heart surgeries, 2 pacemakers and many invasive procedures later Jacob is thriving – he is now walking, and his verbal ability is above average for his age – Jacob has surprised his doctors and surgeons repeatedly in his short life.  For Jacob there is no cure, no magical “fix” that will take away his heart defect – he will have a lifetime of interventions and medical treatment.  But this diagnosis does not define Jacob.  Many of you have met my son, or seen his pictures – Jacob is going through his life with a big smile on his face.  Jacob is a child of God.  He is God's masterpiece, even though in the eyes of the world he is a broken masterpiece.

Walking this path with my baby, it has taken me a long time to reach my current point of understanding, faith and hope with Jacob and his diagnosis.  I have struggled with depression, and anxiety, I have doubted God and raged against Him for not giving my innocent child a whole heart.  There were times when I felt that I could not go on, it was too hard to watch and be helpless while my child went through such immense suffering and instability.  Day to day I have struggled with living in the moment, and wasted time worrying over the future.  In these months of my life, I was acting in much the same way I used to when as a child I sat in the front pew and refused to listen to my Father's sermon on Sunday morning.  Some of you may know that I wear 2 hearing aids, and this came in handy when I didn't want to listen – I would actually reach up and switch them both off so that I wouldn't be bothered by the message my Dad was preaching from the pulpit.  Later in the service my Mom would have to tell me to turn them back on...in much the same way, I refused to listen to the voice of God during these darkest months of my life.  When I reached up and turned my hearing aids back on I was finally able to hear what God was trying to say to me.  As always, it is a message of love.

One of the phrases that has frequently been said to me is that “God will not give you more than you can bear”.  Well, I stand here this morning to say that I could not disagree more.  God will give us more than we can bear – life will give us too much grief… but the promise of God is found in the middle of all the pain.

The promise I have found and proven true over and over again is this: we cannot handle this life on our own strength.  You and I, in our individual struggles and life paths, cannot make it to the end on our own.  In moments when life is too much to bear – it's ok to feel like you can't handle it, like you are going to give up, like you are failing.  It's at this lowest point that we find God is suffering with us.  God is faithful.  He is always in the middle of the chaos of our lives and He will meet us right there in all of the mess and in all of the pain if we are willing to let him in.   And when God meets us there, we need to recognize that there is a constant need to depend on Him.  Depending and trusting in God is not  only for those times when our lives are not going as planned – it is an everyday conscious decision to start anew and love and trust that God is in control.   Trust, and depend on the Almighty God – cast all your fears, worries, suffering and pain on Him.  God cares for me, and for you.  God chose me to be Jacob’s Mom, and handpicked me for this path.  Not because I am a strong person, but because I can conquer my challenges through the strength that fully depending on God provides.




Saturday, October 4, 2014

Down Memory Lane.

One of the first things most families do when they arrive at Ronald Mcdonald House Toronto is to create a design for the door to their own room.  Tonight I personalized Jake's door, and that lead my thoughts down memory lane to our other 2 trips here.  I thought it would be nice to find those images and share them with you all as a reminder of how far Super Baby Jake has come.  Praising God for Jake's life, and thanking all of you for every prayer sent heaven-ward for my son.

Trip 1 - Began in March 2013 when I was 36 weeks pregnant with Jake.  We waited here 3 weeks for him to be born, then on his birthdate we got into RMH.  This trip lasted about 11 weeks in total, 8 of those were with Jake at SickKids.  In this trip he had his Norwood, an emergency repair of his aortic archway, and recieved his first pacemaker.  This was our door on that trip...


And here's a clip of Jake in the hospital...




Trip #2 - September 2013, this trip lasted about 4 weeks and Jake had a heart cath and his Bidirectional Glenn procedure.  He also got a new, adult sized pacemaker on this trip.  Here was our door and my sweet five month old all prepped for the operating room...




Trip #3 - here we are! No idea how long this one will be, but I am thankful that there will be no open heart procedure while we are here.  Here's our door and my handsome now 18 month old boy...


Friday, October 3, 2014

Back to SickKids

Today we went back to Sick Kids.  It's been almost exactly a year since we last walked out those doors to take Jake home after his Bidirectional Glenn open heart surgery.  We wheeled our beautiful, happy, 18 month old boy inside in his stroller...and I cried.  I was fine in the moment before stepping through that door, but once my feet were inside it was like a wall of memories, pain and depression hit me.  We sat down for breakfast before Jake's appointment and I told Jon I'd like to visit the cardiac ward on 4D and see some of Jake's old wonderful nurses.  But when we actually walked towards the elevators to do this...I couldn't.  I just couldn't bring myself to go there.

We had our three appointments throughout the day, with some unexpected turns along the way.  And some good news and some disappointing news.  Before I go into details I thought I'd share this gem of a picture of Jake with the mickey mouse he picked out from the store on Main Street inside Sick Kids...Here he is sitting in the doctor's chair and waiting for the preanaesthetic appointment to begin...


My precious treasure.  He proudly walked all around SickKids today, and inside I was rejoicing that he had come so far since the last time we were there.  The doctors who saw him all had a remark about how good he looked, how well he was developing, and how advanced his language was.  He's my miracle boy - there is nothing half-hearted about how Jake lives his life!

After several twists in our plans, here is how the day ended: The mapping ultrasound showed two possible routes for the GI team to take without moving Jake's pacemaker.  But, cardiology deemed these routes to be too close to the pacemaker to be safe.  The risk of getting the pacemaker site infected was too high.  Instead, they wanted General Surgery to put the tube in using a surgical route.  The problem is...no one anticipated this and no appointment was made with us for General Surgery.  As it turns out, the earliest appointment available with this team is next Friday - one whole week from today.  Jake's SickKids cardiologist is going to try to make this appointment earlier given our out of province home address, but there are no guarantees.  So where we stand now is this: We are here to wait for another week, and when we see General Surgery they will give us one of three options. 

Option 1.  No, they don't feel the tube can be inserted without moving the pacemaker.  That takes us back to square one and needing the pacer moved.

Option 2: Yes, they can insert the tube surgically, and we may have to wait a week or two for that appointment.

Option 2: Yes, they can insert the tube surgically, but their wait list is quite long and we need to go back to NL and come back in a couple of months for the tube.

I am calling on all of Jake's prayer warriors to pray for Option 2.  Pray that General Surgery will do the tube, and that they will do it with only a short wait for the surgery date.  Jon and I have been away from Georgia for only 2 days, and already our stomachs are in knots.  It's awful.  I miss that sweet smile...I even miss that saucy smile.  I just plain miss my girl.  Hug her tight for me tonight, Nanna and Poppa. 



One bright spot to my day - I finally got to meet Baby Owen and his sweet family in person.  I even got to hold him - and he's a perfect miracle from God, and another child who has had such an impact on the world already.  I can't wait to get to see him again.  Remember Owen, Grace and Cory in your prayers too - they are firm in their faith, but Owen is having many struggles on the road to recovery.  Today Grace told me about Owen's room at home, which she has not yet seen as her Husband had to finish the room while she waited near SickKids for Owen's birth.  It's a elephant theme, and yellow in colour.  I'm praying, praying, praying that Owen will be safe at home in his own room very soon. 

So now we wait.  And pray, and pace :)

Jake is fairly happy here at Ronald Mcdonald House, although he does sometimes seem like he's puzzling about where he is.  This morning he asked for Georgia, and our hearts just about broke.  Please Lord bring my children back together soon, and keep them both safe and happy in the meantime. 

I miss my sweet dog too.  I'll leave you tonight with this gem.  Jake decided to climb on Lukey all by himself, and I was lucky enough to capture the moment. 



Tuesday, September 23, 2014

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...

Friday, September 12, 2014

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!






















































































Saturday, September 6, 2014

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!

Sunday, August 17, 2014

An anniversary to remember...

On Thursday August 14, Jon and I celebrated 10 years of marriage!  Jon and I have been very fortunate over our 10 years of marriage to have been able to hold on to our love through some tough times.  We've had a lot of joy, some loss, financially good years and financially tight years, 2 cats, 1 dog, one bouncing 7 lb 10 ounce beautiful baby girl, a miscarriage, and then our 8 lb 5 ounce fighting superbaby.  It's been a wild ride, and we're far from perfect but we're holding on for another 10 years now.

We had a great day celebrating the anniversary, but ended the night at the Janeway emergency with Jake.  Flash forward to today, Sunday, and we are still at the Janeway with Jake.  Jake was admitted with a viral lung infection (most likely, we are still waiting for the swab results), he was having laboured breathing and drops in his oxygen saturations.  Tonight is night #4 here, but Jake seems to have turned a corner with this bug, he's been off the oxygen for most of the day and  is holding steading at 79-80  percent saturations for the most part.  If he can stay off the oxygen over night, we will be discharged in the morning.  And I want to go home! The staff here have been wonderful, especially our day nurse Sarah - she was a God send for Jake and for us.  Jake likes her so much that he blows kisses and waves when she leaves his room.  As long as she is not holding the nose suction thingie, he is happy to see her!

Here's Jake on Day 1 of his treatment...He was feeling  really sick at this point.



It's tough having an IV in your foot when you are a toddler who just learned how to walk!



After day 2, Jake started to feel and act more like himself...even getting into mischief by squeezing his IV bag, and twisting the oxygen dial on the wall through the bars of his crib!



It's funny the things you miss when you can't go home.  Every day we've spent in this isolation room I have longed to be able to mop the floor - seriously.  It's near the top of my list of things to do when I get home tomorrow :)  Also on that list is to cook a yummy homemade meal, kiss my Doggie on the nose, have a bubble bath and shave my legs,  and spend all my free time on the floor with Jake.  Big Sister spent this week in Twillingate with her grandparents, and she is having a great time.  I'm thankful that she was happy and well cared for while we were here with Jake - if she had been at home she would have felt left out with us spending all this time at the hospital.  Georgia is getting a huge squeeze when she gets home on Tuesday.  I just want my little family in my cozy house all healthy and together - is that too much to ask? :)

This morning Jake had perked up enough to start acting like himself again, and I got this gem of a video of him bopping to Bobs and Lolo on the tv in his hospital room.  This will definitely make you smile...Take the time to click on this one!

https://www.facebook.com/photo.php?v=10154485308020611&l=545343752418445390

This is Jake's second hospital admission for a respiratory infection this year.  The last one was in March and lasted 2 nights.  This one has been double the time so far.  And his echo was once again postponed.  We are now nearing the 2 month mark with no echo - the longest Jake has gone without an echo in his entire life.  The general rule for sedated echos after a respiratory infection is minimum 17 days, so we're waiting for a new appointment now.  When this echo finally happens I will be one happy and relieved Momma.

Jacob is developing a true fear of some things that he sees frequently, such as strangers in gowns/face mask, and he can detect a bloodwork technician as soon as they walk into the room.  He just knows.  And he cries, and looks to me for protection from the hurt, and my heart breaks into pieces all over again.  It's so hard.  I worry at those moments what Jake's future will look like, and I have read stories of children with complex illnesses who have developed post traumautic stress disorder in reaction to their time spent receiving treatment, and then I have a new worry.  It's a vicious cycle.

Today is Sunday, and I wanted to be able to go to church - but since I couldn't my Mom brought church to me through her cell phone :) Jake was napping when the service started, so I got to listen to part of the service through the speakerphone during those peaceful moments.  Thanks Mom.  I didn't feel alone at all during that time!

Jon and I are mentally preparing to head back to SickKids once again.  We're still waiting for the date, but we know it will likely be in the next month or so.  With that in mind, my family is taking part in the Ronald Mcdonald House's Red Shoe Crew - Walk for Families in September.  We are raising money for the local RMH in St. John's, even though we have never stayed there - we feel a connection because of the 3 months we lived at RMH Toronto in 2013.  With another stay at RMH approaching, we've set a fundraising goal of $500, and we're half way there! If you would like to make a donation to Team Jake - we have set up a Canada Helps page that sends the donation directly to RMH St. John's.  Here's the link to our fundraising page - every donation helps, and donations of over $10 get a tax reciept.  https://www.canadahelps.org/GivingPages/GivingPage.aspx?gpID=38565

Please consider making a donation to help us reach our goal!

God is faithful, and He's good.  He's been Jake's strong foundation and protector since the moment of his conception, and this experience has been no different.  My Mom reminded me today of the song that I spent hours and hours singing to Jake during his two stays at SickKids - on days when I didn't know if he would make it through, at at moments when I feared for his life.  It has been months since I thought about this song, and I was thankful for the reminder.


Lord send your angels to watch over Jacob,
I'm so afraid of the night.
Lord send your angels to watch over Jacob,
wrap him in your loving arms.

That's my prayer for the night.  For angels to watch over my children, both Jake and Georgia.  For my fear of the unknown to be at rest.  For Jacob and Georgia to know that God loves them.  For Jake to have strength enough to keep his oxygen level steady overnight, so we can all go home tomorrow.  Lord, send your angels.