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...