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.  

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 :)

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.

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 :)

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.

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...

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.