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!