Monday, August 26, 2013

Jacob Rene James

Jacob and his Healing Helper, who also has half a heart and a pacemaker!

Baby Jacob was dedicated last Sunday in a beautiful ceremony that was led by his Poppa, my Dad, who is a Major in the Salvation Army.  When we had Jacob's first dedication, at 3 days old in a isolated room at SickKids hospital I dreamt of the day we could do the same at home.  And I feared that that day would never arrive.  But it did! Sunday was a beautiful day, and so many of our family and friends turned out to support him - thank you all! The dedication itself was emotional, and sweet...It started with the song "Count Your Blessings", and I watched my father fight back tears as he talked about Jacob and his life so far and the life he has to look forward to.  I promised God that I would take care of Jacob, do my best to protect him from all that is harmful and to teach him about God's love as he grows and matures.  Jon and I had prepared a short slide show to give the congregation a glimpse into Jacob's life so far - it's 3 minutes and 20 seconds, but it shows the highlights (and lows) that Jake has come through so far.  Due to the delicate nature of some of the images that follow the surgeries, which had never been shared outside our immediate family, we decided not to post that video on here.  I'm sure you all understand.  The song for the video was "I have a Maker, He formed my heart" - this song and the lyrics have been echoing through my mind since Jacob's diagnosis, often at the times I am most fearful and anxious, so it was a fitting song to time the images of Jacob's life to.

We leave for Toronto in 12 days.  12 days.  You may remember me talking about finding myself clenching my teeth so hard that it hurt during our time in Toronto...this morning I found myself doing the same thing unknowingly while cooking a brunch for Jon and myself during Jacob's naptime.  So many people have said to me "you are so strong" or "I don't know how you do it"...well, I'm here to tell those people that I am not that strong.  And that I don't know how I do it either.  I just know that I do it for Jake and I do it for Georgia.  And many times I start my day crying.  I rarely end the day crying though, because I am usually too exhausted from the demands of the day.  I said to my Mom this morning, I don't know if I am enough. Her response was that I was more than enough, and that all Jake needed me to be was his Momma.  Thanks for the perspective, Mom.

  This summer at home has flown by, and now we are making final preparations and lists for a trip back to SickKids.  It's unbelievable - I feel like we just got home.  I'm still hoping that we will get into Ronald McDonald House to have that close and affordable place to live while Jake is at SickKids.  In the days leading up to Jake being admitted for the open heart surgery we are able to stay in Scarborough again with Heather and Aliyah  if the House is not an option - I'm so thankful for that.  Once Jake is admitted it will be either Ronald Mcdonald House or one of the downtown hotels for us though - we have to be only minutes from the hospital.

I want to ask again for renewed prayer for Jacob's heart and his upcoming surgery.  Particularly for the condition of his left pulmonary artery, and for a miracle that there will be no additional surgical intervention needed.  At the last developmental assessment by Jacob's OT, we were told that Jacob is at the 5 month mark for his fine motor skills and leg development - yay, go Jake! For his neck/shoulder strength however, he was at about a 3 month level.  With this upcoming surgery Jake will fall further behind because tummy time will be restricted and we are unable to lift him under his arms for a minimum of 6 weeks.  I am praying constantly that this lag in development will be minimal and easily recovered after this surgery gives Jake more energy to play and grow.

In the time since I last posted on this blog sweet baby Ava has lost her fight with congenital heart disease.  I cried so much that morning I read of her passing, and I know that when we return to 4D I'll be thinking of her every time I pass the room that belonged to Ava while Jake was last there.  Fly in peace sweet baby Ava.  I read a statistic yesterday that said that more children die each year from congenital heart disease than from all types of childhood cancer combined.  That is incredibly scary given that 1 in 100 babies are born with a heart defect.  So many heart warriors, and each has a story that deserves to be told.  I had the privilege of being able to meet a soon to be heart Mom this past week.  Her name is Danielle, and her baby girl's name is Sara.  Sara will soon be born with Hypoplastic Right Heart Syndrome, which is also one of Jacob's conditions.  Please add Danielle and Sara to your prayer lists, because Sara will soon be  making an appearance and they are far away from their home in Labrador.

Jake is still napping, so I'm going to seize this opportunity to fold some laundry and count my blessings.  Another cup of coffee wouldn't hurt either :)

Tuesday, August 13, 2013

My inner 4 year old

Heads they win...tails you lose...This line from one of my old favourite songs keeps repeating in my head this morning.  Jacob is still doing well, but he is outgrowing the shunt that was placed into his heart during the Norwood surgery.  I am seeing visible signs of this, and they seem to be worsening as time goes on.  Increased sleepiness, sweating,  and being bluer (cyanotic is the technical term) are the most noticeable signs that Jacob is quickly outgrowing his temporary shunt.  So he needs his Bidirectional Glenn surgery to remove the shunt and help with these issues.  I feel so torn - I know he needs this surgery (You can see that just by looking at him!), but I can't stomach the thought of giving him back to the doctors and nurses at SickKids.  SickKids is an amazing hospital and the staff there are incredible, and Jacob's heart surgeon is the Canadian Heart and Stroke Foundation's spokesperson for Congenital Heart Defects, and this is reassuring but there are never any guarantees.  The Momma in me needs a guarantee.  I know life has no guarantees - but they are cutting open my baby's chest again - I want to stomp my foot and demand a guarantee.  Much like my 4 year old daughter would stomp her foot and demand a piece of chocolate before supper.  That's truly how my spirit feels - I am the 4 year old making the demands - and God is the parent telling the child to calm down and wait.

As I finished typing that sentence this bible verse came to mind.  I know God is listening to our prayers, and sending me daily reminders like this one:


Deuteronomy 31:6

New International Version (NIV)
Be strong and courageous. Do not be afraid or terrified because of them, for the Lord your God goes with you; he will never leave you nor forsake you.”


In my interpretation, the “them” in this bible verse is Jacob's heart defect.  I know that God has been with Jacob every step of the way since his conception, and I know that God will continue to be there.  But I am still terrified.  Absolutely terrified.  One thing I know for sure - my son is strong.  He's tiny, but he's tough.  He truly is my superbaby.  And he's God's superbaby too, I'm holding on to that promise for dear life.  

Here's my sweet pea having his toes dipped into the pond for the first time.  I'm glad my Mom got to be the one to give him this experience - and next summer he can be the cute 1 year old splashing in the shallow end :)




Jake definitely has a cows milk protein allergy.  We found this out the hard way when I used some of my frozen breast milk from my time at SickKids.  I can have the occasional treat and his tummy doesn't mind, but if I go anywhere near milk or cheese the result is vomiting and blood in his stool.  The adjustment has gotten much easier - and I now eat 70% cocoa chocolate made by Lindt - it's dairy free! That Lindt chocolate has gotten me through many tough days since my new dietary restrictions began.  His development seems to be going well, we have been working hard on his neck strength and can see a big difference in him now.  We have another developmental assessment with the OT next week, I'm wondering what her analysis of him will be at that point. Praying for him to be closer to where he should be for a 4 month old.

One of the sweet babies that was still at SickKids when we left has finally gotten a new heart.  Sweet Aleeda shared the Stepdown room on 4D with Jake for a few days, and was on the transplant list for a year before a heart became available for her.  Aleeda has a long road of recovery ahead of her, and I'm hoping for nothing but the absolute best for Aleeda, her new baby sister and her parents in the days ahead.  Praying friends, please say a prayer for Aleeda and her family too!

I am looking forward to this weekend, Jacob is having his second dedication service on Sunday.  This time we will be surrounded by family and friends, and Jake won't be 2 days away from open heart surgery and in a isolated room in an hospital.  It is going to be a celebration! A big hurrah to celebrate my heart warrior before he heads off to another battle in September.  27 days until Jake's heart cath appointment...


Saturday, August 3, 2013

Dreading September...


Jacob had his first sedated echo on Friday.  The process itself was fine, and he still managed to be all smiles and charm despite having gone 6 hours without a feed by the time the medicine was given to him.  The echo showed us that the main areas of his heart are working as expected, and he is doing generally well.  There is one exception - his left pulmonary artery.  This artery has been mentioned to us in the past as a possible complication for the future - and now it seems that the future has arrived.  Until Jake's heart cath on September 11 we won't know exactly how bad (or how good) the situation is for this artery.  There is narrowing of the artery, and with the artificial shunt that was placed during his Norwood pushing the blood through this artery all is still well.  The next surgery, the Glenn, will disconnect the pulmonary arteries from their existing blood supply - the shunt.  The Superior Vena Cava is disconnected from the heart and redirected into the pulmonary arteries.  With Jake's left artery being narrowed, it is possible that there will not be sufficient blood flow once the shunt is removed.  If this is the case, then it complicates his Glenn procedure by adding on an additional problem to be solved.  My understanding of the two solutions to this problem is that the archway that was reconstructed during the Norwood will again be reconstructed, or that a catheter balloon inside a high tech wire structure will be inserted into this artery and then expanded and removed -leaving the wire in place to hold the artery open.  The first option, reconstructing the archway, brings the risk level of the surgery high and comparable to the risk level of Jake's initial Norwood.  Given that we were expecting this Glenn procedure to be the "easiest" of the three stages, Jon and I are feeling very defeated by this.  The second option, with the high tech "chicken wire"(lol!) placement has the drawback that this wire will not grow with Jake's heart and thus will need replacing as he grows - leading to more open heart surgeries.  Our wonderful cardiologist gave me a sliver of hope, saying that it is still possible that the shape of the artery may still allow sufficient blood flow - and that this is what we should be focusing our prayers on.

 So...wonderful people who have been praying for Jacob for months now...can I ask for a renewed strengthening and focus to your prayers? Pray for the following:


  1. For Jacob's artery to be whole enough to need no surgical intervention.
  2. For the success of his bidirectional Glenn procedure.
  3. For a recovery free from complications.
  4. For the Glenn procedure to give Jacob the strength to improve his feeding issues
  5. For accommodations for us at Ronald McDonald House Toronto
There is no way to express to you how much we appreciate your prayers.  Each and every one of them.

We are going to be booking our plane tickets back to Toronto over the next few days.  Jacob is well enough to fly on a commercial flight, so we will have no fussing with the air ambulance this trip!  Provisions will be made for there to be oxygen available on the flight in the event that Jacob needs it.  Before Jacob's Friday echo I was already dreading September.  With this new understanding of his pulmonary artery my heart feels like it has permanently taken up residence in my toes.  If the news that we get on September 11 is not ideal -I don't know what I will do.  I have been struggling to keep my mental state positive and, to be perfectly honest with all of you, fighting to keep depression at bay.  Most days I win - I have so much to be thankful for.  But some days I lose - and spend the day in a fog of dread and tears.  I am trying so hard to be strong for my children - both of them.  Georgia needs me to keep her life happy and as normal as possible.  Jacob needs me to keep it together so I can meet his needs - and they can be very demanding needs.  My faith gets a good shaking every time something big happens - and this is no exception.  Lord,  please keep me strong and keep me focused on Your greatness and strength.  In you all things are possible, I have believed this for as long as I can remember.   Heal my baby boy, or at the very least, give him enough health and strength to life a long and happy life.  Amen.  

38 days until the heart cath.  38 days to wonder, fear and hope.