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 :)

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)

⁶ 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...

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.  

A mended heart is a special heart.

Since my last post a few significant things have happened...one of the best being that Jake has now weighed in at 12.5 lbs at his last dietician appointment, and weighed 12 lbs 12 oz this morning when I put him on our scale. Woo hoo - my little baby is finally getting some chub wub on his bones :)

To update from my last post regarding the Gastro doctor's advice that I stop expressing my breastmilk to give to Jake, I chose to follow my instinct and ignore that advice.  I gave myself a two week limit to see if the blood in Jake's stool would clear up, and if there were any other symptoms of a allergy.  It's incredible how things work out sometimes because since that day I saw that GI - over 2 weeks ago, there has been no blood in Jake's diaper.  NONE! And I have slowly been reintroducing dairy into my diet - I even had a piece of cheese last week -and there has been no change in Jake.  I see the GI on Thursday this week, so I'm very curious about what her take on this will be. There have been no significant improvements in the feeding department, but Jake is now taking some milk from a cup.  I know that sounds strange - I'm feeding my infant from a cup - but it's about 5-10 ml per feed, and the goal is not let Jake forget how to swallow.  Without daily practice the OT has told me he may forget how to swallow.  Now my new hopes for his feeding lie in him having more stamina after his Glenn surgery in September, and in the assurance I have been given that heart babies generally do better with solids than with fluids.  Jake had a developmental assessment session with the OT last week and while I knew that my baby was behind "normal" 3 month old development, it was still hard to hear the OT say that he was behind in terms of his neck and shoulder strength.  In the other departments Jake is fairly on par with the norm for this age, so I am thankful for that.  We have increase Jake's tummy time and other neck/shoulder exercises based on the OT's suggestions and I am already seeing some improvement.  Poor Jake hates his tummy time though, there is certainly nothing wrong with his lungs!

Last week I had another 10 years taken off my life, I'm sure, because when I checked his oxygen levels in the morning the monitor was telling me that Jake's heart rate was in the 60s.  With a pacemaker set at 120, this shouldn't have been possible.  We rushed off to the Janeway cardiology department, calling on the way, and once again we received exceptional care.  When Dr. T checked Jacob's heartrate and confirmed that it was in the 60s, I wanted to throw up.  My first thought was that the pacemaker was malfunctioning, and Jake was going to be airlifted to TO for a surgery.   It turned out that Jake had outgrown his pacemaker settings, and they just needed to be adjusted.  Thank God this adjustment is possible with a machine and a donut shaped apparatus placed over the part of his belly where the pacer lies -  nothing invasive.  We were out of the Janeway less than an hour later, with everything once again as it should be.

We received the official notice of Jake's heart cath at Sick Kids in the mail last week.  We are heading back to Toronto in early September, and if the heart cath shows that Jake's heart is ready, he will be booked for his Glenn sometime in the week following the cath.  I can't bear the thought of bringing Jake back to Sick Kids or back to the OR.  Our stay at Sick Kids in April-May was excruciating, and somehow I feel like this one will be worse.  I think it will be harder because I finally feel like Jake is mine -for the first 56 days of his life I often felt like he belonged to the doctors and nurses who were caring for him 24/7, and my input was minuscule.  Since coming home we have learned  how to care for Jake and meet all his needs, his smiling face lights up my whole world,  and he is finally mine.  I'll have to relinquish some of that control when we bring him back, and I don't know how I will manage that.  I am praying that we are able to get back into Ronald Mcdonald House with him, because that will make life much smoother for us as we wait for his Glenn and then during his recovery.  It will give us a clean, safe place to be a family while we wait and while Jake heals.  If you are still praying for us, please add this specific request to your list.   

We have scheduled a dedication ceremony for Jake at our church in  3 weeks.  Jacob was dedicated by his grandfather at Sick Kids hospital two days before his first open heart surgery, and that is a beautiful memory that I will forever treasure.  Our family would like to have a celebration with those who love Jacob and have been supporting us since the very beginning, so we're going to have a more official ceremony where  he can wear a dedication outfit, and we can be joined by our family and friends in celebrating Jacob as the true gift from God that he is.  Jon and I are working on a special addition to this ceremony, which I can share on this blog after August the 18th.

I can't believe it will be August in just a couple of days.  We have been home in NL for almost 2 months, and that has flown by.  As it gets closer to September I am getting more anxious, but I have to trust God and believe that He will bring Jake through this next hurdle.  I'm trying to contain my anxiety, and find myself feeling very down on some days - simply overwhelmed by the enormity of all this is going on in my life, and my children's lives.  Having my family living in the same city has helped a great deal in this respect - I can depend on my Mom and Dad, or my Sister to help bring me up when I get muddled down in life - they can always point out the bright side of things, and help me to see the good that lies behind the cloud of darkness that sometimes keeps me from being as happy as I should be.    Thank you for that.  Life is good.  My sweet boy is having a nap in his swing right now.  In two weeks Jon and I celebrate 9 years of marriage, and we have a whole lot to be celebrating this year!

Sending a shout out to Your Vinyl Destination for the t-shirts she made for our family.  Here's Jake modelling his:

"A mended heart is a special heart" is the message on the front.  On the back it says "Thank you SickKids!"

Heart Mom

April 4, 2013

I'll never be the same.
They told me that my child was sick...
I thought, am I to blame?
I don't think I can handle this...
I'm really not that strong.
It seemed my heart was breaking...
As, I'd loved him for so long.
I will not give up on this child...despite your best "advice".
I will give my child a chance...No matter what the price.
And I will learn all that I need...to help my child to thrive.
I'll even use that feeding tube...
My child will survive!
Will he require therapy?
What if he can't gain weight?
Alright God I can do this...I will not curse our fate.
The feeding pump beeps, at 3:00 a.m.
It serves as my reminder...
How many parents would welcome that sound?
Tomorrow Lord, I will be kinder.
Another angel earns their wings...
and I run to my sleeping child's bed...
I watch him then, for quite awhile...
Bend down and kiss his head
Then I cry for the parents whose lives have been broken,
And I look to God wondering why?
Oh Lord, I just can't know your ways...
No matter how I try.
And yet, I trust You to hold his life,
And guide us through each day
My mind says savor each moment he's here...
But my heart whispers,
"Please let him stay".
From... pacing the surgical waiting room...
to sitting by his hospital bed...
From... wishing for a good night's sleep...to learning every med...
From wondering will he be alright?
To watching him reach out his hands.
With every smile, my heart just melts.. despite life's harsh demands
For all who see that faded line...I look to them and smile...
You see, my child is loved so much...
I would face any trial.
That same scar I trace with my finger...
It's the door to his beautiful heart
I never guessed how much I'd love him...
Just as YOU loved him right from the start
A heart mom is always a heart mom...
Now wise beyond her years
And for those who have angels in heaven...
Our hearts share in all of your tears.
Everyday I will strive to remember...
You chose me for him and no other
And I will embrace that beautiful day...
When I became a "heart mother".
~Stephanie Husted

Austin

Lately I have been finding myself thinking about Jacob's future...there is more than a little worry that accompanies any thoughts that go past today's timeline.  Only God knows what is going to be...and my worrying will not change that - but worrying is a Mother's territory, even with  a child with no health issues.  I have worried over Georgia since she was born, and now I worry over Jacob as well each day.  I am doing my best to trust in God, that my babies will be safe and get to grow up and lead happy lives.

 Last night I received an email from a perfect stranger who lives in the US.  I am feeling so thankful for the message that came through this email.  You know who you are - thank you for taking the time to write me that note! Somewhere out there is a 16 year old boy named Austin who also has DILV.  Austin has had the three stage Fontan procedure that Jacob has started, and is now a high school student.  Guess what Austin does? He plays football! He runs track and field! He plays recreational basketball! Austin's mom tells me that he wants to go hiking in the Grand Canyon in the near future - how amazing is that? When I read the email from Austin's mom it gave me such excitement and hope for Jacob's future.  This morning when I re-read the email it brought me to tears and caused me to pray over my baby boy - that God would grant him the opportunity to grow into a healthy 16 year old who has lived such a full life, and still has the rest of his future to embrace.  I don't know Austin, but I am thankful for him and for his Mom's willingness to share the success story of her own superhero.

Looking at Jacob now I see an adorable baby wearing only a diaper because it's the hottest day we have seen here in 17 years...I see his feeding tube, and wish he would drink...I see his scar that is healing beautifully and know that in a couple of months it will be reopened and I'll be able to watch his little heart beating inside of his chest once again...I see his reddish hair that comes from my Mother's side of the family...I see his gorgeous blue eyes and long, long eyelashes....I see his smile and how it lights up his whole face - Jacob smiles just as much with his eyes as he does with his lips...I see the long fingers that love to play with his own hair....I see toes that I love to kiss, and that tickle him when I touch...I see his skinny legs and arms, and wish for plump baby rolls someday soon...but most of all, I see a miracle.  I see MY miracle.  And I am so thankful and overflowing with love for him and his spirited sister.  At each visit to the cardiologist's office here I see a poster for a support group for parents of children with heart defects living in NL.  On the bottom of this poster is a quote that has become a regularly used part of my life - "most people never get to meet their hero.  I gave birth to mine."  Truer words have never been spoken.  And right now when I look at Jacob, it's not hard to imagine him as an energetic sixteen year old who loves life, is proud of all that he has overcome, is not afraid to show his scars to the world, and who is healthy enough to regularly play sports and want to hike in the Grand Canyon.  Thank you to Austin and his Mom for helping me envision that for my son's future.

This is Jake just about 10 minutes ago, laughing as I kiss his belly...Baby Jake, I hope you can find this much joy in life every single day of your life.  Love you, sweet boy!

Blessings

I don't claim to have the right answers to my big questions, or to have an understanding of how the world works, but there are some things that I know to be true.  Here are a few of the biggest truths in my life:

• Life is hard.  Or as Glennon Melton would say, life is "brutiful" - brutal and beautiful.
• The biggest devastation of your life can become the most wonderful part of your life - from a diagnosis that the majority of pregnant mothers choose to terminate, to the handsome baby who has whole heartedly completed our family.
• Having a sick child is the scariest experience of life - every word from health professionals is over analysed, every number on a monitor, echo cardiogram or blood test is a constant worry, germs have become public enemy number one, and in the background of every happy moment is the worry of what may happen in the next moment.
• Even though we have declared war on germs, my four year old will make sure she touches the dirtiest surfaces existing wherever we go - touch with her hands, lips, tongue...such places as the shopping cart handle at WalMart or the fish tank at the Janeway...ew!
• There is not enough hand sanitizer in the world to satisfy me.
• Jacob is my child.  He does not belong to the health care system, the doctors or the nurses.  Thank you to Doctor T. for reminding me of this fact, and giving me back some control over Jacob's life.

• It's ok to accept help - in fact, it's sometimes the best thing you can do for yourself.  Thank you go those who have offered help, or just went ahead and helped anyway.  Especially my Mom, Dad and Sister - you have all gone way beyond the call of duty for me and Jacob.  I love you.
• Knowing other Moms who have been through this, and being able to share with them and learn from them is an irreplaceable gift.  Last night I was able to get out for a couple of hours and get a lovely pedicure with another heart Mom who has become a real friend - Daina :)
• God is good.  I'll never understand why Jacob's heart was designed the way it is, but I know without a doubt that without my faith I would not be able to do this.  No way, no how.  His strength is perfect, when my strength is gone.  He'll carry me when I can't carry on.  Raised in his power, the weak become strong.  I'm living proof of that!

Jacob now weighs in at 11 lbs 6 oz.  Two days ago that was 11 lbs 8 oz, but hopefully it won't go down any more.  We are still struggling to figure out whether or not Jacob has an allergy to cows milk protein - I am not convinced at all, but the GI is convinced.  GI wants me to stop giving Jake my expressed breastmilk - but I was able to get them to agree to give us another 2 weeks before we do anything that drastic.  It's been 5 days of blood free stool for Jake - I am seriously hoping that he has turned a corner with this issue.  Please, God! In terms of feeding, things have gone downhill.  Jake is no longer breastfeeding, and no longer bottle feeding - he is flat out refusing to do either of those things.  But at the same time, he can spend an hour sucking loudly on his pacifier - so I have hope that he will start drinking again.   It has been said to me twice now that after his next surgery he will have more strength and endurance and may be able to drink more on his own.  So, once again I am receiving a lesson in patience.  Jacob's poor little legs have become lumpy and hard at his enox injection sites, so we are now giving him the injections in his arms.  Precious boy - he's so brave, but the arm injections seem to hurt him more than in the legs.  It makes this Momma sad :(

  SuperBaby is happy!

Today Jake recieved his first round of immunizations.  Poor little tyke - those needles are big! Jacob was very upset about each injection, but when snuggled close to my chest he calmed right down.  I've been checking for any change in terms of a temperature or oxygen levels, but all seems to be okay.  Knock on wood and send up a prayer that it stays that way.  Overall Jacob's oxygen levels are dropping slowly - this is normal because as he grows a greater strain is place on the shunt that was created for him during his first surgery.  This is a temporary shunt, and not able to sustain his blood flow needs as he gets bigger - we are praying for it to be strong enough to sustain him until at least September so we can get some weight on his little bones before they place him back on the operating table at SickKids.  Now...this Momma is exhausted.  Time for a bath and a couple of hours of sound sleep before Jake's next feeding.  Please keep the prayers coming - Jake is doing well but he is not out of the woods yet.