Monday, December 16, 2013

Peace

It's a snow morning here, and although Georgia's daycare is open I'm going to keep her home with me for the morning.  Jon is clearing the driveway, bacon and eggs are cooking, Christmas tree is shining, Jake is still sleeping, Georgia is watching cartoons and Momma is drinking coffee.  It's peaceful here.  Here we are in the window watching the very beginning of a big snow storm that would be rocking the house just a couple of hours after this picture was taken...Peace in the midst of the chaos and storm.  I am blessed beyond measure.



Yesterday was an emotional day, for a thousand small reasons and no big reason at all.  At church yesterday morning they sang that song "I have a Maker...He formed my heart" and I found  myself crumbling in tears and unable to sing the words.  Those around me in church may have wondered what brought on the waterworks - now you know :)  This has been a special song for Jake since his diagnosis during my pregnancy.  This holiday season I find myself caught in a whirlwind of thoughts and feelings - thankfulness that Jake has made it to his first Christmas, reflections on the last year, wishes for the new year, apprehension that Georgia will soon be 5 and starting Kinderstart, baby Sara still being in Cardiac Critical Care at SickKids, and so on.

Yesterday afternoon was the children's Christmas Musical, and Georgia was a part of the choir.  She refused to sing, or even to stand up for most of the musical and it got me to thinking about the year that Georgia has had.  It's been a rough one for a 4 year old.  Hey, it's been rough for a 30 year old so I can imagine how Georgia is feeling.  I had a moment of blind panic yesterday before the musical when Georgia wanted her father, who was parking the car, and decided to run outside of the church while I was hanging up her coat.  I have no idea what I did or said in those moments but vaguely remember yelling Move at someone who was at the door, and pushing open the door with such force that it banged against its hinges.  Running to Georgia I felt like her life was flashing before my eyes, and when I caught her I began to shake and shake.  Needless to say, Georgia was in big trouble after that stunt.....and I feel like  my heart is still racing from the experience.  Life is so fragile.  My baby boy is the usual cause of my panic attacks, but in this instance it was my beautiful, headstrong girl.  I'm so thankful that they are both safe and warm at home this morning.

This week Jake said his first words...3 of them!  It started with Momma, and I'd be lying if I didn't say that made my heart want to burst with pride.  The next day it was Dadda...and then "Ga Ga" which seems to be a reference to big sister Georgia.  Sweet little man.  It's a beautiful thing hearing those words come out of his sweet mouth.  I am trying to get a video, but the camera seems to silence him as soon as it turns on!

This is the beginning of a new week.  Jake's first RSV shot is tomorrow, and his latest sedated Echo is Friday morning.  I'm feeling a lot of anxiety and apprehension over the echo again - need to leave it all in God's hands, but at times I can feel the panic rising and need to stop and suppress it once again.  God gives us his peace when we take the time to seek it, and pause long enough to be be still and receive it.  In the rush rush rush of my life I often forget to take this time, and then find myself overwhelmed, anxious, frustrated...breaking down sobbing my in Mom and Dad's kitchen...I'm challenging myself to take the time to be still and listen to God each day.  The mess in the kitchen and the carton of milk waiting to be picked up from the store can wait for a few more minutes.

Isaiah 9:6
New International Version (NIV)


6 For to us a child is born,
    to us a son is given,
    and the government will be on his shoulders.
And he will be called
    Wonderful Counselor, Mighty God,
    Everlasting Father, Prince of Peace.

Happy Birthday, Jesus.



Saturday, December 14, 2013

Jake's friend Baby Sara has a new blog post:


Please keep Sara and her family in your thoughts and prayers.  

Thursday, December 12, 2013

Dear Santa

Georgia's letter to Santa was mailed long ago, and a response from the North Pole promptly arrived in our mailbox.  This year Georgia is asking Santa for a doll with long hair that she can brush.  How sweet is that.  I can assure you that Santa will indeed be bringing Georgia a doll with hair that can be brushed :)  This got me to thinking - if Jake could write a letter to Santa what would it say? I imagine it would be something like this...

Dear Santa,

I really am not a fan of your big beard.  I think you would look less scary with a clean shaven face.  I love all of the Christmas lights, especially on my tree.  Wrapping paper is yummy - I don't know why Momma won't let me eat it.  I love my big sister Georgia, and would really love to have a good pull at her hair.  My big cousin Brandon is so cool - I want to be wild just like him when I am 2.

This year is my first Christmas, and I don't really care what gifts are under the tree for me.  What I would really like is a healthy heart.  At the very least I would like to have a stable heart in 2014 with no procedures or open heart surgeries.  I'm such a tough guy that my daily needles don't bother me anymore, but sometimes I don't like having my blood drawn for testing.  I get annoyed at my EKG and Echo appointments sometimes too.  My many scars have healed nicely and I now have a shirt that says "Chicks Dig Scars".  I really earned that one!

I know what my Momma wants  for Christmas.  Momma wants me to eat more food and start to drink on my own.  This is really hard for me, but maybe our miracle will come in the New Year and I won't need a G tube surgery.  Maybe you could bring some patience for my Momma and Daddy when they try to get me to eat.

My favourite thing in the world is to cuddle with my family.  Especially my Momma.  I always have a smile for those around me - even when I am in the hospital!  I'm very thankful to be at home now, and not at SickKids.  My friend Sara is still at SickKids - please help her family have a joyful Christmas even though they are away from home.

Love,

Superbaby Jake



Tuesday, December 3, 2013

A day in the life of baby Jake

On another Heart Mom's blog I saw a post where the mother took 1-2 pictures each hour of the day, and then shared them with her readers to give a glimpse into her child's life. I wanted to do that today with Jake.  

December 3, 2013 in the Anstey family's life:


8AM - Good morning world!


8:30 AM - Time for Jake's morning Enox injection.  This is the ONLY medicine my boy is now on!


9AM - First attempt at feeding Jake solids for the day.  My favourite coffee mug filled with the good stuff, and Jake's solid eating logbook also made the cut.  After getting some cereal into Jake it was time for a tube feed of expressed breast milk.


10:30 AM - Naptime!


11:30 AM - Interrupt Daddy's work for some cuddle time while Momma gets a fast shower and packs the diaper bag for a trip to the Janeway.


12:00 PM - Time for our daily weigh - 16 lbs 10 oz, and then a bath!


12:45 PM - At the Janeway to get Jake's Anti-Xa level checked to see if his Enox levels need to be adjusted.  These ladies know us well! Jake is such a trooper that he smiled his way through the blood being drawn from his arm!


1:30 PM - A surprise message from our friends Vanessa and baby Philip led to us having lunch at Coffee Matters - first Jake, then Momma! 


Baby Philip slept through the "playdate" :)



3:30 PM - After a short nap, it's time to play and practice new skills like sitting up! Jake is mighty proud of himself here!


5:00 PM - Time for some banana puree and another tube feed...Jake would much rather chew on Sophie than eat anything solid...



6:00 PM - Jake and Georgia's sweet cousin comes to visit! We love Brandon!


7:00 PM - Sister wants to eat supper on the couch...


7:30 PM - Hanging out with Auntie in a very messy playroom! This will be fun to clean up when Georgia goes to bed...


8:00 PM - Play play play!


8:30 PM - Another Enox injection.  Superbaby Jake doesn't even blink...


9:00 PM - Sister is all clean and getting ready for bed!


9:15 PM - Another tube feed and Jake is down for the night.  My sweetheart is an amazing sleeper at night.



There is another feed at midnight...but I won't be taking a picture of that one because it's Jon's turn and I'll be snoring :)

So there you have it...an average day in the life of baby Jake.

Thank you God for your many blessings on my family.

1 in 100

Jacob is 1 in 100 children born with a congenital heart defect.  His DILV diagnosis is much, much rarer - but he is still part of this 1 in 100 statistic.  More children are born with CHDs than those with all types of childhood cancer combined.  Watch this video, see Jake at about 1:35, and then share share share this with your friends!


Friday, November 29, 2013

Labatt Family Heart Centre

There are so many familiar faces in this video.  Cardiac Critical Care and 4D are both featured.  This is Jacob's home away from home.  This is the place that has saved his life.  I am forever thankful for Sick Kids and the Labatt Family Heart Centre.



Disheartened

Sometimes it's so hard to pin down how I am feeling and put it into words.  The last two days I have found myself feeling down, worried and anxious - much more than usual.  I think it was triggered by the scheduling of Jacob's RSV shot for December and all the warnings that came with the call, several appointment changes, a scare with baby Sara at SickKids and reading an article that was written about a single ventricle heart kid we knew who has now passed away.  It's compounded and intensified by the frustration that I sometimes feel when trying to get Jake to eat or drink orally.  Jake likes food, but he likes it in very small amounts - amounts that the dietician says are insufficient for his needs.  Trying to get Jake to eat 1-2 ounces of solid food can take almost an hour of coaxing, distraction and begging - it's hard and tiring when there is no improvement or if he refuses to eat at all it's very disheartening.  

The other side of the battle is that I am so lucky to have Jake, and for him to be doing as well as he is is a gift in itself.  American thanksgiving has gotten me thinking about my blessings once again.  I found an excerpt from a blog (http://www.aholyexperience.com) that talks about thankfulness with this quote as the context:

If anyone would tell you the shortest, surest way to all happiness—
he must tell you to make it a rule to yourself to thank and praise God for everything that happens to you.
For it is certain that whatever seeming calamity happens to you, if you thank and praise God for it, you turn it into a blessing.
Could you therefore work miracles, you could not do more for yourself than by this thankful spirit, for it heals with a word speaking, and turns all that it touches into happiness.
… it be the noblest sacrifice that the greatest Saint can offer unto God.”

This is from an old text, written in 1728, but it spoke to me when I stumbled upon it yesterday.  I have highlighted the parts that really stood out in my interpretation.  I am called to give thanks to God regardless of my circumstances - and in the last two days I have done anything but give thanks.  I have been grumbling and complaining and asking why - being a big whineing baby in my prayers.  But I know in my heart that when I thank God for my life and every aspect of it, what was a burden becomes a real blessing.  Jake's illness is a burden that I cannot carry along on my own shoulders - but when I take it to God and thank him for giving Jake to me and for the strength to care for him each day - I find happiness.  True happiness - not the kind of happiness that comes from taking part in Black Friday consumerism madness - but the kind of happiness that has it's roots deep in the heart.  Sacrifice is a concept that I have often struggled with - I am a person who loves comfort of all kinds, and the very idea of sacrificing something that I have or hold dear makes me want to run for the hills.  Jake has taught me in his almost 8 months of life that I need to sacrifice the "ideal life" and "ultimate plan" that I have been forming in my mind since I was old enough to think about having my own family.  My plan of having 2-3 healthy kids and a relatively easy life has been stolen from me by reality.  But I would never change it  now that I have a new reality - Jake and Georgia and Jon are my reality.  And I won't lie, some days are really hard and filled with self doubt and outright fear of what the future may hold.  But I've sacrificed my plans and accepted what God wants for me instead.  

This time last year we recieved Jake's initial diagnosis - HLHS (which turned out to actually be DILV and HRHS) - and I went through some of the most depressing and sad days of my life.  I questioned everything - and found very few answers.  Fast forward to a year later and here I am sitting in my kitchen typing this blog while Jake sleeps in his Father's arms and Georgia snores in her bedroom.  I no longer take anything for granted...I am thankful for everything.  I have days when I lose my perspective, but when I find it again I know without a doubt that I am blessed and that God is good through it all.  Tonight I find myself seeking that perspective once again.  Maybe a good night's sleep will help to restore it.  Christmas is right around the corner - Jake's 1st Christmas! - and I want to enjoy it to the fullest and experience all the joy that the season has to offer for me and my family.  So here's to finding that perspective, and to being thankful and happy once again.  

Tuesday, November 26, 2013

I am so blessed.

Today was Jake's latest sedated echo...and the report was good.  Jake is fine for the time being, with no further narrowing of his left pulmonary artery and nothing else to cause concern.  In 3 weeks we go back for another sedated echo just days before Christmas.  Leading up to the appointment this morning my stomach was all nervous, butterflies and sleep interruptions.  My fear was that the LPA would be narrowed and we would be told that we had to spend Christmas in Toronto.  But thankfully...it was only irrational fear inside my head.  I am fairly confident that we are spending Christmas at home.

Our biggest battle at the moment is feeding.  Jake is eating solids well - meats, veggies, fruits and cereals.  I've discovered that if I combine anything with carrot he will eat it.  That boy loves him some carrots :) I get a lot of satisfaction from the process of making baby food for him.  I often feel that I am unable to do anything to help Jake because he is so complex...but I can make wholesome, natural food for him to eat.  That's something, at least.  I can't seem to make any progress with Jake's liquid feeding - there has been no progression for months now.  I bought a special bottle for babies with oral feeding issues, and at it's first use today Jake drank a pitiful 4 mls.  I have no idea which way to go with getting him to drink.  We will soon be facing the issue of a permanent feeding tube in his stomach - the G tube.  I want so badly to spare Jake another surgery but I don't have any idea how to prevent it.  One day at a time, one day at a time.  Maybe we'll get a miracle.  On the positive side, and it is a HUGE positive - Jon and I now sleep through the night as Jake will tolerate larger feeds in the day to make up for omitting the middle of the night feed.   The last feed of Jake's day is at midnight, so we are usually in bed by 1 am.  And it's lovely...so very lovely :)

With the cold and flu season also comes RSV season (Respitory Syncytial Virus) - a very common infection of the lungs and breathing passages.  For a baby with a heart like Jake's this very common and easily treated virus could be fatal.  Fatal.  My heart stopped for a beat when our cardiologist told me this.  So beginning in December Jake will be recieving Synagis shots each month, which contain antibodies to help him fight the RSV virus if he gets it.  It's not a vaccination, because there is no vaccination for RSV, but it will help in the event that Jake gets infected.  The five months worth of shots will cost $35,000 just for Jacob.  Seriously, I kid you not.  I am so thankful for our Canadian healthcare system because Jon and I do not have $35,000 to give away!  Only babies who meet strict criteria receive these shots, and heart babies are among them.

We had our Christmas pictures done with Pretty Pictures...look how beautiful my children are.  I am so blessed.  Thank you, Lord!



Baby Sara is still at SickKids, but I just got a message from Danielle saying that she moved from Cardiac Critical Care to 4D today.  Way to go, Superbaby Sara!  Please continue to pray for Sara and her parents.  It's a long, hard road that we know all too well.  Sara now has a blog at www.sarasheartofgold.wordpress.com , please have a visit to her site too!


Tuesday, November 12, 2013

I love you, old man.

Today is my husband's birthday, and I feel like sharing with the world just how amazing he is.  Jon is an incredible father.  He always has time to get down on the floor and play, to cuddle and to love his kids (and his nephew too!).  I am so thankful that my children have this man for their Dad.  Here's Jon with a very young Jake in May at SickKids hospital.  Look how different Jake looked back then!  They say that it takes a strong man to be able to show his emotions, and Jon and I have been able to cry together and laugh together and love our family together.  That's not to pretend that things are all perfect  - they're not! Having a sick child has put a very real strain on our marriage, but underneath it all one thing remains true - I love this man.  Georgia and Jacob are so very lucky.  I am so very lucky.






Georgia loves her "Dadda" - she is a Daddy's girl through and through.  She also has him wrapped around her little finger, but I know that Jon wouldn't have it any other way.  I think the picture below says it all.





Happy birthday Honey.  I know you don't like attention, but you deserve this post.  Thanks for putting up with me through all my highs and lows, my impossibilities and everything that life has thrown at us in our 11 years together.  I love you, old  man.


Friday, November 8, 2013

Sideways rain and imperfection

This has been a day of mixed blessings.  It started with a typical Jacob and Momma morning - diaper changes, Enox injection and meds, a feed and then rushing to get ready and out the door to a very important appointment.  Outside it was high winds and sideways pouring rain...typical St. John's weather.  It was nearly impossible to find a parking spot at the hospital, and then I got drenched in the trek from our car to the door.  The blanket I had placed over Jake's carseat to keep him dry was stolen by the wind and we had to chase it across the wet parking lot.  Then we get into the waiting area to register and are told that this very important appointment was in fact YESTERDAY.  Oh dear.  After calling to reschedule, Jake and I headed back to the car and proceeded to become even more soaked with rain.  Once in our car we had 45 minutes to kill until our next appointment at the other side of town, and I had a mini  mental breakdown and sobbed in the car until I called my Mom who as usual knew just the right words to give me the perspective and calmness that I needed.  I felt like I had failed as a Mom at that moment, and that I had let Jacob down by writing the wrong date in my planner.  Once calm, I headed to the nearest Mcdonalds and proceeded to load up on greasy food, which tasted fantastic but made me feel worse afterwards.  At the next appointment the nurse turned out to be a member of my Mom's congregation, who knew Jacob's story, and had so many words of encouragement for me that it was as if God himself had placed her in my path for that very moment.  I sat in the exam room while we chatted thinking in the back of my mind that I serve an awesome God.  Looking back on the morning now I can see the other small blessings peeking out of the awfulness - finally getting a parking spot relatively close to the hospital, the smile on Jacob's face as he peeked out from under the car seat cover at me, the soothing tone of Mom's voice just when I needed to hear it, and finally the perfect person placed in direct contact with myself and Jake at just the right time.

To someone else the events of the morning might not seem like a big deal, but to me it was huge.  Jacob's appointments are the clock that my life has run by for the last 7 months, and this was the first time I had ever missed one.  Mommy guilt has become a pervasive part of my life - I am always feeling guilty for something.  There is always something that I feel I need to do, or am not doing well enough with regards to my kids.  I want to spend more time with Georgia, I want to do more to help Jake learn to eat, I want to do more enrichment and learning activities with Georgia, I want Jake to have the happiest day possible...there is always something more that I want to do, and frequently don't have the time or energy to make happen.  I have been talking to a couple of other Heart Moms for awhile now, and one message comes through repeatedly from them - I am being too hard on  myself.  Sometimes I know this to be true, and other times I just feel like it's all too much for any one person and I have to do the best I can and be satisfied with that.  I know that God doesn't make mistakes, but there have been moments when I have genuinely wondered what He was thinking when he gave me all this responsibility.  I don't know if I can handle it.  But I have been handling it.  And my kids are both doing well.  Everything is far from perfect, but they are happy and well cared for.  My house will never be as tidy as my Sister's house, but it's a home filled with love and covered in toys.  I have to resign myself to this.  And Laura, please come clean my house :) Just kidding, Sis! Life is imperfectly perfect in my house.

Look at this gem from the first time my boy tried carrots:



So sweet.  Orange poop and all :)

Wednesday, November 6, 2013

My big girl

Jake's big sister Georgia is one amazing little girl.  Georgia's life has been turned upside down repeatedly over the last 7 months, and we have been constantly amazed with how well she has handled it.  That's not to say there haven't been bumps in the road, but for a four year old I think Georgia has proved to be a real trooper.  Since we returned from SickKids this time, a lot of my worry and anxiety has been focused on Georgia.  There was a short period of time when Georgia vented her frustration by writing on anything and everything she could when she would find a pen/crayon/permanent marker around the house, but thankfully this phase seems to have ended.  The other obvious difference was that our independent girl became a little clingy, and needy - to the point where if Jon or I were not in the room with her she would sometimes cry and say that she thought we had left her.  But it's been about a week since the last time that happened, so I'm hoping that ship has sailed as well.  Today Jon and I booked Georgia's birthday party at the place she requested, despite it costing more than we would usually spend - we talked about it and decided that after the year she has had it won't hurt to treat her for her 5th birthday.  This is also the last year I have my sweetheart to myself, as she will start Kindergarten in 2014.  My smart, funny, beautiful little girl is growing up fast.  It's an enormous weight off my shoulders that Georgia does not blame or resent Jake at all for any of the changes in her life.  She loves her baby brother unconditionally, and his face lights up when she walks into the room.

Today Jake had his 4 month immunizations.  He's 7 months old now, but behind the immunization schedule because of his surgeries.  Jake really got upset with me and the nurse during his appointment today, it was unusual for him but the nurse said that one of the vaccines causes a stinging sensation so that was likely the culprit.  When Jake had his 2 month immunization (at 4 months old), he was on the 4th percentile for size.  Today Jake outdid himself and landed at the 37th percentile - I was so relieved by that.

Feeding boot camp officially starts for Jake on Friday.  This should be interesting.  Jake is now eating cereal and a veggie each day.  He loves carrots and sweet potatoes, next on my list to try is parsnip so hopefully I can make that by the weekend.  We saw our cardiologist on Tuesday, and now we have a 3 week period until our next visit for a sedated echo.  3 weeks! That will be the longest period in his life that Jake has gone without seeing Cardiology.  Woo hoo :)

I know that many prayer warriors read this blog, and today I want to ask for prayer for another heart baby named Sara.  I have mentioned Sara on the blog before and to make a long story short, Sara had to be rushed to SickKids for open heart surgery much earlier than expected because of complications.  Sara's surgery went well, but in Cardiac Critical Care she has taken a turn for the worse and desperately needs our prayers.  I spoke to Sara's mom Danielle today, and she sounds totally devastated but through her words you can also hear strength.  A heart Mom is a very special kind of mother.  Please pray that the Lord will hold Sara in the palm of his hand, keep her safe and heal her tiny body.  Pray also for strength and comfort for Danielle and Dave as they deal with the day to day reality of having a sick child.

Thursday, October 31, 2013

Trick or Treat!

Happy Halloween from Jake and Georgia :)


Jake is posing as SickKids Cardiac Surgeon of course!


Georgia is Sully from Monsters U!


Our good friends Daina, Gary and Isaiah dropped in too.  Isaiah is another very special kid with half a heart!


Friday, October 25, 2013

It's a beautiful life.

Those who follow me on Facebook will have noticed a passionate post in the last week about people who like to touch my baby.  It seems like people are drawn to Jake - those who know his story, and strangers as well.  To say that it drives me nuts is putting it mildly.  I know everyone is well intentioned, and most likely do not realize the possible implications of touching a heart baby without washing their hands, but knowing the possible complications it makes me wild when someone reaches for Jake.  And now, he has his first cold.  Today was day 3 of the cold, and the worst one yet for him.  My poor baby sounds awful, but he's still managing to be his happy self 90% of the time.  Jake was examined by his cardiologist today, and she was really happy with how he was handling the cold - he wasn't in distress and his oxygen saturation was 88.  Also, he's now hit 16 pounds - way to go big guy! Jake also had a echo today, although he couldn't be sedated because of his cold and he spent a good part of the echo trying to show the technician how to do her job by pushing the probe around himself.  The echo shows that nothing has changed in terms of his left pulmonary artery, so all is well in our world today.  Jake had bloodwork done to check his enox levels, but I got a call this afternoon saying that the lab couldn't get a result from the bloodwork so it has to be redone on Monday.  Poor baby Jake.  He gets too many needle pokes.

In between appointments today I stopped in to visit the ladies at the Maternal Fetal Assessment Unit, they were such a huge part of this journey through Jake's diagnosis and my pregnancy.  It was such a familiar feeling to walk down that hallway like I did 3 times a week during the last part of my pregnancy.  Jake must have had a thousand pictures taken in the MFAU room while he was still in my tummy.  It was really nice to see their smiling faces, and to hear their positive comments about Jake's development.  

This afternoon I was driving home and rounded a corner and saw this...


The first thing I thought was how beautiful the rainbow was.  The second thing I thought of was the significance of a rainbow in the bible - it's the sign of God's promise.  Literally taken, it's the sign of God's promise never to flood the whole earth again.  To me today, it was a profound reminder of God's presence in my life - and of the precious gifts he has given me in the form of my two children.  I pulled the car over to the side of the road, took this picture and then drove the rest of the way home feeling light and full of hope for my family's future.  I don't know what tomorrow brings for Jake or Georgia, but no one else knows what tomorrow will bring either.  So for today, I'm trusting and believing.  God is good, and He has proven himself over and over in my life and my miracle boy's life.

Halloween is right around the corner and Jake has the perfect costume.  I can't reveal it yet though - check back on Halloween to see what my two little monsters are wearing :)

One highlight of our visit with the cardiologist today was being told that I could take Jake to a program at my Mom's church that I have been wanting to  join - Grow With Me.  Before Jake's Glenn surgery this would have been impossible because of exposure to germs and possible infections.  Now Jake is still living in a bubble, but the bubble can get a little bit larger because his heart is stronger.  Tooth number 2 is almost through, it's so close that I wouldn't be surprised if it was through by tomorrow morning, especially given the way his gums are bothering him tonight.  On the eating front, Jake is going to be starting in on meats this week.  We have worked our way through the types of cereal, and next on the menu is meat.  After that will be veggies and finally fruit.  It's so exciting, but also nerve wracking because I want so much for him to eat.  To eat enough to get that feeding tube out.  It's not an impossibility, but it will be an enormous challenge for Jake and for me.  Please focus prayer on Jake's oral feeding - I want to avoid the need for another surgery in the form of a G Tube for his stomach.  
 
I'll leave you with this beauty shot of my little pumpkin and his little pumpkin.  It's a beautiful life.


Thursday, October 17, 2013

Boring Blessings.

I have sat down to write a new post three or four times since we got back home to Newfoundland, and each time the words just haven't come.  I've been mulling over why this could be, since I usually have an over abundance of words available :) My reflective thoughts have led me to the conclusion that my 'norm' has been so stressful and eventful for the last 10 months that now that life has calmed down, my mind feels that there is nothing to report.  In other words, life is boring right now.  Wonderful, thrillingly, exceedingly boring.  Jake's medication schedule is down to only 8 med times a day, we see cardiology every 2 weeks, OT every 2 weeks and dietician once a week - this is a very scaled down version of the crazy life that we led before Jake's Glenn.  We are now spending much more time at home than at the hospital - yay!

The highlight of this week has been the appearance of Jacob's first tooth, which you can see poking through in the picture below:


The other highlight was meeting baby Sara, another precious heart baby who needs your prayers as she prepares to go through the Glenn procedure herself.  Please keep Sara and her parents in your prayers.


I have a birthday coming up this weekend, and I feel like this past year has really aged me.  Grey hairs and undereye circles are physical evidence of this.  The more telling evidence for me though, is the way I feel inside.  I feel like my heart has taken a real beating.  It's been turned upside down and inside out repeatedly by Jake's life experiences.  And he's only 6 months old! A wise Mom I met at SickKids has told me several times when we talk about the uncertainty of our heart child's future - "expect the best and prepare for the worst".  That's a really great summary of my life.  I expect the absolute best possibly outcome for Jake, but throughout it all I am always mentally preparing  myself for the worst.  Does that make me a cup half empty type of person? I don't think so.  I think it makes me phenomenally great at seizing the day and squeezing every last drop of joy out of each moment...without being naive enough to think that our family's struggles are over.  But for right now my struggle is getting up when the alarm clock goes off at 2:30 am so that I can feed my baby.  When my body complains about having to do this every night for the last six months I remind myself that there are heart parents who have lost their little warrior and would so love the opportunity to have to do a night feed once again.  As I enjoy my final day of being 30 tomorrow, I'm drawing on this promise once again:

Isaiah 40:31
King James Version (KJV)

31 But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint.



Thursday, October 3, 2013

Perspective

In the time since my last post I've been doing some thinking.  Through the thoughts, experiences and conversations with those around me over the course of this trip, I've come to the conclusion that life is all about perspective.  My life is, anyways.  Life has not turned out the way that I wanted it, or had pictured it.  But looking at it with all the perspective that Jacob has given me in his short life I know that it is a better, harder, much  more fulfilled version of the life that I had anticipated.  I'm not going to spend the rest of my life feeling blue because my "plans" are unfulfilled - my life would be so empty without Jacob and Georgia in it! And they are both perfect in their own way.

When I was pregnant and Jacob developed Complete Heart Block in utero, our cardiologist held my hand and told me that Jake might not make it to the next checkup.  And he was born at full term, a bouncing 8 lbs 5 oz and with a loud cry.  Yes, he was blue and needed immediate intervention, but he was alive!  At 5 and 6 days old, Jacob had 2 open heart surgeries - the first of which had a 20% likelihood of death during the procedure.  Then after 56 days at SickKids we got to take Jacob home and spend a wonderful summer with him and our families.  Jacob has now had 3 open heart surgeries, 1 pacemaker implantation surgery, 1 heart cath and more tests/scans and bloodwork than I could keep track of.  Jacob is beautiful, strong and so HAPPY.  The way he views life is inspirational.

Today marks 2 weeks post-Glenn operation for Jacob.  Tomorrow he will be 6 months old.  2 days after that we will be home in Newfoundland.  Sunday is also my Father's birthday, so that's a nice birthday present right there huh, Dad?   There is so much to celebrate!

Jacob's Glenn operation was successful, and in the words of the surgeon "uneventful" and we are so thankful for that.  The repair to his Left Pulmonary Artery was not as successful, unfortunately.  After more tests: a CT scan, x-rays and bloodwork we have been cleared to bring Jacob home but with the knowledge that he may need to return to SickKids for intervention in as little as a month.  Or it could be six months.  Or a year.  Or until his final stage Norwood procedure.  There is no way of knowing.  The doctor's here are fairly comfortable with Jacob coming home, but insist that he be watched very closely when we are home.

So we are bringing our Superbaby home again, I am excited to get back into the routine of our crazy life.  Jacob is coming home with a heart that is much stronger and more stable than it was when we came to Toronto.  His little heart is working half as hard as it was before his Glenn procedure.  This complication with his LPA means that we are coming home with the knowledge that we need to be ready to go again at moment's notice.  That is all the more reason to live a Carpe Diem lifestyle with each day we are given.  I believe that our God has this all under control.

Jacob's improved heart function has already made noticeable improvements in his life.  My ever-vomiting child has only vomited twice since his Glenn procedure,and has been having typical baby spitups instead of full out projectile vomits, and this is because of the improved circulation in his body.  Jacob has also had no blood in his stool since before the Glenn, even though trace amounts of dairy are in the food that I consume daily.  I'm wondering if this is also related to the Glenn, but that's a conversation to have with the cardiologist and dietitian when we get home.

While we were here Jacob's cardiologist, the surgeon and several others on his medical team have commented on his size.  They think he's big! It blows my mind a little, because he looks small to me...but on the day of his post-op checkup at SickKids I took this picture of him with one of our favourite members of Jake's team - the Single Ventricle Nurse Practitioner, Jenny.  In this picture he looks big.  My little six month old...maybe I should reward him with some icing after he eats his cereal tomorrow? :)


Thursday, September 26, 2013

And it's still raining...

Last night we got the results from Jake's sedated echo - everything looks good but the left pulmonary artery (LPA) is still narrow and will be a cause for concern in the future.  We went to bed feeling hopefully optimistic about being discharged soon.  This morning at rounds the doctor reiterated what we had heard the night before, and speculated that Jake might need intervention for his LPA before his next open heart procedure, the Fontan.  Then we were told that we were on course for discharge tomorrow.  So excited! Over the moon happy to be taking our boy back to Ronald Mcdonald House to wait for his checkup next week at the cardiac clinic.  I was in Jake's room laughing with Mom while Jon and Georgia walked around the hospital and then Jon came into the room and said he had just been talking to Jake's SickKids cardiologist.  Right away I knew...something was wrong.

The cardiologist had taken another look at Jake's echo pictures and decided that the LPA was too narrow for us to go home without intervention.  To verify this, he wanted Jake to have a MRI - but because of Jake's pacemaker we had to settle for a CT scan.  Jake was given morphine and taken down right away for the scan.  Because of his very small veins Jacob needs a special team to get his IVs in, and this team was unavailable when Jake was down in the CT department, the regular team tried and could not get an IV in so Jake's CT was cancelled for today.  Now we are waiting for the morning for the IV and CT scan, and then finally some answers and a plan of action.  Unfortunately this means that our discharge for tomorrow is on hold, most likely until at least Monday.  It also likely means that Jake's break from daily injections will be short lived - if a stent is put in place in his LPA than he will need the anti-coagulant drug again.  My heart bleeds for the daily pain Jake has experienced with that, and that he may now have to experience again.

The title of my last post was "cautiously optimistic"...well this morning we went from cautiously optimistic to completely optimistic to devastated all in the span of a few hours.  Now I'm feeling like I've been run over by a truck - completely emotionally and physically drained by the day.  My planned post for tonight was a positive one with the highlights of the past two days - Georgia and my Mom arriving, Jake's good report and Jake eating (and enjoying!) cereal for the first time - and instead I find myself struggling to praise God despite the storm.  I need to praise God because for the first time in his entire life my baby boy has pink cheeks - pink! Jake's normal colour since birth has been a pale blueish-grey.  When I first noticed the colour in his cheeks I thought something was wrong...he's flushed, he must be warm, have a temperature, etc.  Then Paula, the nurse practitioner explained the obvious - it's because of Jake's new increased blood flow! Jake's heart is doing half of the work that it had to before his last open heart surgery, and he looks and feels healthier because of it.  I am so thankful for that.  But still...We had come through the storm, and looked up expecting to see a clear blue sky and instead find that the storm is still raging all around us.

I know you are tired of hearing me ask...and indeed, I am tired of having to ask...but please...continue to pray for Jake in the days ahead.


Tuesday, September 24, 2013

Cautiously Optimistic

Guess who arrives in Toronto tomorrow? My big girl with her sweet smile and my wonderful Mom.  I cannot wait for them to walk through the door to Jake's hospital room.  Since we're in parent care we are allowed visitors and siblings can stay during the day, so I'm sure my boy will be smiling tomorrow when he sees his sister's face!  There is a possibility, dependent on many factors, that Jake will be discharged tomorrow and released to Ronald McDonald House for a week.  After that week he will have a final checkup and if given the all clear we can book our flights home.  I'm very cautiously optimistic because I know how quickly things can change and how many disappointments we had over the first surgery hospital stay.  Before we can go, Jake needs to keep maintaining his oxygen levels (which have been in the high 70s and low 80s with no oxygen assistance!), get a good report from the pacemaker team, have a good Echo, and possibly a chest x-ray.  So...we'll see.  If we are released tomorrow Jake will have been discharged 6 days post-open heart surgery.  How's that for a superbaby!

I've been doing a lot of thinking about the future.  Jake's future in particular.  Our time in Toronto and connections we have made with other Heart families have shown me how fragile life can really be.  In our short time on this journey with Jacob we have made connections with several families who have since lost their Heart warrior.  This week a family we met at RMH is saying goodbye to 9 year old Jordan, who was also a single ventricle patient, and I cannot even begin to fathom what they are experiencing.  Jacob always seemed to have a smile for Jordan, the few times that their paths crossed, and it's hard to wrap my mind around the fact that last week we sat at the table with him but a few days later he was gone.  My heart goes out to his family, and his to little sister who Georgia loved to play with during her last visit to RMH.  I had a great conversation with another Heart mom about this today, and wish I could reach a place of peace for this aspect of our family life.

Today I captured a picture of Jake's smile...these are few and far between right now, so it's precious to behold :)  You can see from the picture that he still slightly swollen from fluid retention, and he has the line in his neck but that line will be coming out tonight - Good Lord willing.


For right now, I am doing my best to be content.  I have so much to be thankful for.  And looking at the picture above warms my heart.  Once Georgia arrives, all will be right in our world again.  God bless both of my babies.

Sunday, September 22, 2013

Superbaby SMILED!

Here we are 3 days post-Glenn operation, and it's been such a whirlwind that there has been no time to update.  In a nutshell, Jake's surgery lasted about 6.5 hours and had no complications.  No complications from the medical end, but Jake went 3 entire days without even a hint of smile.  It was pure sadness on his face and in his eyes until my heart felt like it was broken watching him.  Jake was in Cardiac Critical Care (CCU) by early evening on Thursday.  Thursday night went well, he was sleeping soundly and again had no complications.  On Friday Jake was doing well enough to cause the doctors to talk about transferring him out of critical care.  Because his oxygen saturations were still low, it was decided that he should stay in CCU for the night.  On Saturday Jake's oxygen saturations were still dipping low, but he was on a minimal flow of oxygen and otherwise doing so well that he was discharged from critical care and brought to the 4D ward.  We came upstairs anticipating a day or two in the stepdown unit, which is the norm when leaving CCU, and instead Jake was admitted directly into a private/parent care room! This was a really  nice and uplifting surprise.  A few hours after admission Jake's pain had really gotten much worse, and he was very upset, crying and so sad.  This was due to three things: his morphine dose had been cut in half (to help raise his oxygen saturations, and make it easier for him to take big breaths), the fluid on his lungs was making him cough which pulled at his chest incision, and the two drainage tubes were causing the most discomfort.  The first 24 hours on 4D were very rough for all three of us.  Jon and I were heartbroken over how sad and in pain our baby was - and were completely helpless to make it better.  Jake didn't even want to be held at this point.  By Sunday morning Jake was puffy and swollen all over his face, and needed to be restarted on his diuretic.  An x-ray of his lungs showed that they were "cloudy" and he needed to drain the fluid.  His drainage tubes were now having minimal drain so they were removed along with the external pacing wires this afternoon.  The extra morphine given to help with the removal of the tubes helped him get a couple hours of straight sleep finally.  After this nap Jake's nurse came in and we gave him a bath together, being careful to avoid getting his chest incisions wet...and we got a SMILE!  Shortly after the first epic smile, we got several more smiles and he even started kicking his legs a little, and chewing on his fingers as he would have before this ordeal began.  I think my baby boy may have turned a corner and be on the mend.  Superbaby is earning his nickname this past week!

Jake had some visitors today...starting with Daina, Gary and Isaiah who are here for Isaiah's heart cath and also staying at Ronald McDonald House.  That was followed by Krystyne and Keegan, who brought some homemade goodies including dairy free brownies! After that we had some time with Heather and Aliyah, who always puts a smile on our faces.  God is good...and He has provided friends for us even when we are so far from home.

I can't get past the smile that we finally saw on baby Jacob's face tonight.  It's like an enormous cloud has been lifted off my shoulders, and the tears that I have cried and the prayers that I have prayed have been heard and answered.  Thank you to everyone who has prayed for Jake.  There are so many of you, and most of you I don't even know.  I could feel the support through Jake's surgery and into his recovery, the same as if someone had placed a warm blanket over me.

Yesterday in my parent's hometown of Seal Cove, it was Rally Day at the Salvation Army church and the town said prayers for Jacob and released balloons for him.  There were pictures of the event posted to my Facebook wall, and it was such a nice thing to have happen on such a rough day!

Jake's oxygen saturations are still a big issue, but we are hoping that tomorrow might be the beginning of these numbers stabilizing now that his painful drainage tubes are gone.  I don't know what tonight and tomorrow bring, but I am feeling renewed going into the future thanks to more answered prayer and the most beautiful smile in the world.

Wednesday, September 18, 2013

Tomorrow is surgery day....

As a quick update to my last post, I wanted to share that the news from the team at SickKids was good news! Jacob does not need his Aortic Archway reconstructed.  The narrowing is minimal, and there is no blockage.  Thank God for that!

The Pacemaker team has decided to give Jacob the larger pacemaker during tomorrow's procedure - this pacer has a larger battery, so will have a longer battery life.  New pacing wires will also be attached to his heart so that both ventricles will be paced from now on.

We are getting ready to do some prep for the surgery now.  The last dose of his Enox injection has been given, and we are setting our alarms for the latest time of night that Jake can have any fluids.  Next on the list is to pack a bag for Jake, and to give him the bath with the surgical scrub brush and Chlorhexidine solution for disinfection.  Scrubbing his little chest, and the many scars that already exist, will be especially hard on my heart tonight.

Please pray, friends.

God bless baby Jacob.


Tuesday, September 17, 2013

Pre-Op Day

Monday was Pre-Op day for Jacob at the Cardiac Clinic in SickKids.  Thankfully most of the preop requirements had been completed last week - Echo, EKG, bloodwork, and Cath so they had most of the information they needed - but it turned out that an unexpected complication had come up with Jacob's Aortic archway.  This archway appears to be either narrowed or blocked, but different tests are showing conflicting results because the Echo shows it as narrow/blocked but the Cath shows it to be fine.  Because of this Jacob was sent for a CT scan yesterday afternoon - a thoroughly torturous experience because it took two teams to get an IV into him for the dye, and Jacob was so upset that he was purple and soaked through with sweat by the end of it.  When the IV was finally in place Jake was exhausted and fell into a sound enough sleep to sleep through the whole scan, in spite of the very loud machine noises and flashing blue/green lights! It was like a space ship taking off in the room, and Jake slept right through it...He didn't even notice that his arms were strapped up, and he was being moved around inside this huge machine.  We will know tomorrow (Wednesday) what the team has decided for Jacob based on this CT scan.

The artery that we have been worrying over, and praying over for awhile now is indeed narrow, and needs to be patched.  The Surgeon, Dr. C. didn't seem to feel this was a big deal - he showed more concern over the possible arch complication.  Then, the icing on the cake was that the team felt that Jacob's pacemaker should be replaced now during the Glenn procedure, and the single pacing wire on his heart should be replaced with two pacing wires so that both ventricles are being paced.  The reasons for this suggestion are based on battery life of the device, and on the changes that the upcoming procedure will make in Jacob's heart.  To make this decision, Jake was fitted with a holter monitor that will take readings of his pacemaker use for a 24 hour period.  It's a medium sized box hanging outside of his clothes, and his chest is literally COVERED in wires, stickers and tape.  Here he is being set up by the pacemaker lady, and not minding it at all.  This boy amazes me at every turn.



 So, Jon and I felt like...our fears were confirmed with the left pulmonary artery needing patching, and then it was double whammy of unexpected news between the Aortic Archway and the Pacemaker.  Tomorrow morning the whole team meets to discuss Jacob's case, and the big decisions will be made and then communicated to us.  Because they are reopening Jake's chest in the same spot the team will have to deal with scar tissue, and from the description we were given this can be a very complex and sometimes dangerous task as the scar tissue from the heart can attach itself to the sternum where the opening is made.  I shiver at the thought of it...Jake is so small! One of the hardest parts of Monday was signing the consent form that listed all possible complications - from death, stroke, kidney/liver disfunction, brain damage, bleeding and so on.  The likelihood of death is very small compared to his last Norwood procedure - it's 2% instead of 20% this time.  But these other possible complications have higher risk, and my mind feels like it will implode when I go there.  So, I'm not going there.  My God is bigger than these risks, and I believe with every fiber of my being that he is holding Jacob's life in the palm of his hand.

Georgia is doing well with my parents, and looking happy in all the pictures we see of her.  She had a breakdown over the phone the last time we talked, and that was incredibly hard on the heart but the plan is for her and Mom to come to visit us after Jake's surgery.  The surgery is schedule for Thursday morning, we have to be at SickKids by 6 AM with Jake on that day, and the surgery will likely be a long one - not because of one big complicated procedure but because of several "small" things being done at the one time.  It's 98% likely that Jake will come out of the OR with his chest already closed and will be extubated very soon after arriving in critical care.  I'm praying that all goes smoothly for my treasured boy, and that we will be home with him in no time at all.

In a really cool turn of events, one of my Heart Mom friends - Daina - is going to be at SickKids with Isaiah for a Heart Cath next week.  Georgia will likely be here at the same time, and that's really cool because she loves Isaiah.  It's so heartwarming every time I lay eyes on that boy - he's so big and strong, and no one would ever know that he has half a heart and has come through so many struggles to get to where he is today.

Over the weekend we had visits from Heather and Aliyah, and a outing to Danish Dreams for dairy free frozen yogurt with Krystyne and Darcie.  Tonight I'm meeting up with my friend from high school/university, Kate.  I'm trying to make the most of these spare moments before the surgery, because there will be no free moments once that surgery takes place.  Oh, and I got to eat NACHOS! Made with dairy and soy free cheese - it does exist!

When I stop to think about the upcoming procedure, I'm so scared, but I'm using all my strength to not dwell on that and to enjoy these days of cuddles and time with my amazing superbaby before this next trial begins.  Please keep Jake in your prayers, especially on Thursday and the days following the procedure.

Thursday, September 12, 2013

Post-Cath Update

Jacob's cardiac cath went well, with no complications.  He spent six hours in the recovery ward, and then was discharged to go back to Ronald Mcdonald House with us.  This was a lovely bonus as we had been told to expect him to have an overnight stay.  His oxygen saturations were low for awhile, as low as in the 50s and 60s at some points, but then stabilized at high 70s before his release.  We have five days of wound care to do for his groin area, but other than that he is his happy go lucky self.  I'm thanking God for another safe procedure.  We are still waiting on some answers about his heart, but these won't be given until Monday when the surgical and single ventricle teams meet to discuss.  The final pre-op requirements will be completed Monday morning, and Jake's surgery will be either Tuesday or Friday of next week.  This will be determined at the Monday appointment as well.

Here are Jake and I about half an hour before his Cath...I wish I could give you my whole heart baby boy.  I'd do anything to fix yours!


Wednesday, September 11, 2013

Cath Day

It"s as though we never left TO in some ways...we have settled back into the familiar routines and ways that we established during our last trip here.  The flight was mostly uneventful, although Jacob used 3 tanks of oxygen and had a significant dip in his saturations during the last half.  He was sleeping in my arms and then his oxygen dipped to 53 and he woke up very upset, seemed frightened and working hard to catch his breath.  Given that we were in the air somewhere above Quebec, this was terrifying.  The episode lasted about half an hour and then his saturations slowly began to climb.  When we landed they had settled back into the low 80s, thankfully.

We are so thankful for Ronald McDonald House...Jake is doing well there and he especially loves the huge fish tank.  He seems more interested in the bubbles at the top than in the fish :)  Yesterday was a long day of pre catheterization assessments: x-ray, bloodwork and echo.  The bloodwork was so rough on his hands that both of his palms and part of the top of his hands are bruised.  It's such a sin.  My little trooper handled the majority of it with a smile and even a laugh at times.  I am continually amazed by Jacob's pleasantness, irregardless of what life throws at him.  This is a big lesson that my boy is trying to teach me!

Right now at this moment Jake is sedated, intubated and in the cath lab.  He"s about 1.5 hours into the procedure, and we are waiting in his room on 4D for the doctor to come find us.  This is a routine procedure but the list of possible complications is long and some are very serious.  I found myself singing the same song to him that I sang in my head during his delivery and countless times over his bed during his recovery from the Norwood...

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 sheltering arms

I know that is  not  how the chorus really goes, but it's been my theme song since the day Jake was born.  We should have some news about his heart and readiness for the Glenn surgery today.  Please continue your prayers for my sweet, happy heart warrior.  I believe that God is in control of Jacob's destiny! Jake has gone into every procedure with Georgia's picture on his bed...today was no exception.  Before his cath I had to disinfect him with this special sponge and dress him in scrubs.  That was a first for me, and so bittersweet as I helped to prepare him for the procedure.  He was asleep in my arms when the nurse came to take him - letting go is getting harder every single time.

God bless baby Jacob.


Saturday, September 7, 2013

Deuteronomy 31:8

Our flight to Toronto leaves early tomorrow morning...I am in the middle of finalizing the packing, and trying to make sure that nothing important is left behind.  I realize that I'm going to be in downtown Toronto, and there are stores left right and center that can supply most needs so I'm trying not to go overboard with what goes into the suitcases.  Jacob comes with a suitcase full of medical supplies, and we also need a carry on medical supply case to cover the possibility that the full sized suitcase gets lost or misplaced by the airline.  I just placed an emergency NG (feeding tube) replacement kit into my carry on - I can honestly say that packing has never been this complicated.  I consider myself to be a fairly organized person, but I'm finding organizing this trip to be extremely challenging.

Yesterday we got a phone call that provided an answer to prayer.  God is answering our prayers before we even leave our home province! There is a room available for us at Ronald Mcdonald House as soon as we arrive in Toronto.  That gives us a safe, clean and affordable place to live with Jake while waiting for the surgery and just as importantly,  after he has been admitted we will be only minutes away from Sick Kids and in an environment where everyone around you understands why you need to cry or why you need someone to talk to.

I'm feeling anxious about leaving my little girl, my family,  my dog and my home.  God has already prepared the way for us, I truly believe that to be true.

Deuteronomy 31:8

New International Version (NIV)
The Lord Himself goes before you and will be with you; He will never leave you nor forsake you. Do not be afraid; do not be discouraged.”

Georgia will be in the best of hands with my Mom and Dad - she even has her very own pink bedroom there! Lukey and my house will be in great hands with my good friend Krista, but Lukey's health has not been great lately so I worry about leaving him.  My family has each other, and constant calls/texts from me and Jon to keep them informed.  I'm going to miss everyone so much.  But I'm praying that this trip is less than a month long.  3 weeks is not an unreasonable expectation if all goes well.  I know that the prayer support for Jacob and our family has never ended - and I have been feeling a renewal lately...Thank you everyone for your prayers and kinds words - I will do my best to keep you all posted through this site while we are in TO.

Jacob is doing well - his oxygen saturations regularly drop into the high 60s/low 70s but also spend time in the high 70s and low 80s.  Tomorrow on the plane he will be hooked up to his oxygen monitor and have a oxygen mask blowing air on his face for the whole flight.  It's possible his oxygen could drop as low as the 50s without the assistance of this oxygen, and that is just too low.  Jacob's sweet cardiologist joked that Momma might need to use the oxygen too when she see's how low the numbers go on the oxygen monitor! We're going to try to time Jake's feed so that he doesn't need one while on the plane - he vomits enough without being fed in a moving vehicle.  Jon and I also have extra shirts packed in our carry on because sometimes the vomit is inevitable.

Yesterday I saw a picture on Facebook that had the caption: My son has HRHS (Hypoplastic Right Heart Syndrome).  His half of a heart makes mine whole.

Jacob's half of a heart makes our family whole.  God bless baby Jacob.



   My two beautiful children - Georgia and Jake.

Sunday, September 1, 2013

Jake the Smurf :)



This time next week our family will be putting the final things into our suitcases for our trip to Toronto.  We'll be moving our sweet beautiful girl over to her Nanna and Poppa's house for the forseeable future.  I haven't been able to bring myself to tell Georgia about our leaving yet.  Our last trip feels like it was only yesterday, and I know how hard that was for Georgia.  Georgia and Jake seem to have formed a deep attachment with each other.  Jake smiles the brightest for Georgia, and she loves it when he smiles for her.  Each sound or gesture Jake makes brings Georgia such delight - it's beautiful to watch! And despite all of the extra time that is needed for Jake's care and doctor's appointments, Georgia has not shown any sign of jealousy.  She is one amazing little girl, and I will be missing her like crazy when we leave.

On the brighter side, this trip should not be nearly as long as the first.  Georgia will start preschool, ballet and singing company while we are away, so her life will be full of fun and activity.  And my parent's lives will be extremely full of busyness, chaos and sweetness as Georgia fills up their house with pink dresses, loud squeals and her enormous heart.  I have very real hope that Jacob will come throught this surgery with flying colours, and there will be no additional intervention needed for his pulmonary artery.  We could be home 3 weeks from his surgery if all goes well.  One big difference this time is that Jacob will have his chest closed before he comes out of the operating room. The last surgery his chest was open for 7 days before the real healing could begin.  Jacob is doing well overall.  His oxygen stats are lowering slowly, they seem to be mostly low 70s, occasionally 60s for now, and considering that 100 is the normal oxygen level this is more proof that he needs his bidirectional glenn surgery soon.  My baby boy has blue lips most of the time, and when he is upset he goes from pale to purple in no time at all.  He's my little smurf :)   I weighed him on our home scale today, and he weighed in at 14 lbs 6 oz!!!  My goal all along has been to get him to 15 lbs by the time of his surgery - and I think we might make it.  Go Jakey go - you are an incredible heart warrior and I love you more than life itself.

On Friday afternoon after a long day of appointments for both Jake and myself, I had finally changed into my comfort clothes and started to tackle the untidyness of our house when my doorbell rang.  I opened the door in my pj's with unwashed hair to find someone that we barely know who wanted to wish us well on our upcoming trip, and to give a donation to help cover our costs.  The kindness that surrounds our family is unbelievable.  Thank you.  You know who you are :) It is so needed, and so appreciated.

I realized that I hadn't mentioned Jake's feeding for a couple of posts, and this is because there really is nothing to report.  He's still not bottle feeding or nursing, all feeds are 100% through his feeding tube.  We discovered while Jake was in the bathtub one night, that he likes the "taste" of water.  So, we are now cup feeding Jake water 3-4 times a day so that he doesn't forget how to swallow.  Most of the time he has no problem with it, which gives me some hope for when we introduce solids after this surgery.  My poor boy is also teething...He is normally so happy but now he will have crying spells where he cannot rub his gums enough or get a teether into his mouth fast enough.  Oddly, his favourite thing to chew on seems to be blankets :)

In my life, coffee has become a very dear friend.  Tea has taken the back burner for now, or is my substitute when there is no almond milk around for my coffee.  I was very surprised that Starbucks doesn't carry almond or rice milk, but they told me that if I bring in my own almond  milk they can make any drink with it.  Now I normally have a juice box of almond milk in my diaper bag or purse :) Ah, the life of a diary free Mom.

Heading out to church with my family this morning.  This will likely be my last chance for at  least a month so I plan to enjoy it.  It's a Cast Your Burdens on Jesus kind of day in my world.

1 Peter 5:7

New Living Translation (NLT)
Give all your worries and cares to God, for he cares about you.

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...