Jake and the Fries

Jake is very interested in our food and is always wanting to touch it or try to put it in his mouth.  This gives me hope! In the next few days we have the go ahead from OT to try cheerios...then we can progress to such things as toast and cheese...exciting days ahead.  Trying to be patient with him on the drinking front though - there is no progress at all in that respect.  Just had to share this picture - he was determined to get those sweet potato fries from his Dad!

Chicks dig scars!

When I sit down to update this blog the words usually flow easily from my fingers...but I've sat down to write a new post several times since leaving the Janeway yesterday and this is the first time I've managed more than 3 words.  It's not that there is bad news - that's not the case, at least not yet.  It's that there is no news.  How do you write a update with nothing to tell?

All I can say for certain is that getting Jake his G-tube is more complicated than we anticipated, and it's frustrating because this is supposed to be the "simple" surgery.  Jake's pacemaker is blocking the path to his stomach, and while there are options for getting around the pacer, none of them are simple options.  Uncomplicated g tube insertion is essentially done with a needle and a very small wound.  In Jake's case we are looking at having him opened up for the procedure, regardless of the route that they take.  The option that I can't get out of my head is the possibility of the surgeon physically moving Jake's stomach to allow for the g tube.  It's actually quite silly that this bothers me given that Jake's heart has been totally reconstructed since his birth - with parts added and parts taken away - but I can't seem to "stomach" this g tube option.  Regardless, Jake is going to a upper GI test at the end of the month and it will be early March before we get an answer from the surgeon.  It figures that when I have myself in a good place mentally to prepare for the g tube, we now don't even know if he can safely have one.  I have to find a way to stop dwelling on it until then, or I'll drive myself nuts.  Once again a lesson in patience from baby Jake. 

Check out these images that were taken while we were in the waiting room yesterday...My boy is beautiful :) 

 Congenital Heart Disease Warrior Jake

Chicks Dig Scars! 

Thanks to Your Vinyl Destination for designing this very fitting shirt!

Jake has been doing well with solids for the last couple of weeks - eating up to 6 tablespoons of food on his best days, but typically 2-3 tablespoons on an average day.  He has discovered a love of puffs - and has eaten up to 25 in one sitting! His little lips munching on that puff is just the sweetest thing you ever did see.  Sweet jaws.  But, no liquids - most days if I can get 5 ml of formula into him that's a good day.  And it's not that he can't do it - it's that he won't do it.  Oh the frustration!

In better news, baby Sara is out of cardiac critical care and doing well with her parents on 4D at SickKids! Her update can be read at www.sarasheartofgold.wordpress.com .  Way to go Super Sara!

Today I had a friend tell me that she doesn't know how I keep it all together, and that if the situations were reversed she may not have made the same decision we did when were offered the option of terminating the pregnancy.  This much I know for sure - my life without Jake in it would not be much of a life at all compared to one I am living now.  It's not easy, and sometimes I just want to be that family that seems to have everything come so easily, but I wouldn't want any of it without Jake.  I've had a day of feeling fustrated and down, but I'm choosing to end the day holding Jake close as I do his late feed and thank God for the struggle - because the struggle brought Jake to me and given the choice, I'd never give that struggle to any one else - Jake is my perfect baby, and I am his perfectly imperfect Mom.

Happy Birthday Big Sis!

On this day 5 years ago Jon and I became parents to a beautiful baby girl.  Georgia was born at 1:15 AM and weighed in at 7 lbs 10 oz.  Neither one of us had any idea that such a love was possible.  Georgia quickly became our "princess" and filled up our lives with love.  While I call her "Princess", she is so much more than that.  Georgia is incredibly smart, quick to learn, curious, headstrong and sweet.  I see so much of myself in her that sometimes I just stop and stare.  I see more of her father in the way she acts than in the way she looks, but he's there too.  Happy 5th birthday sweet Georgia.  I can't believe you start Kindergarten this year - that is going to be a very hard day for this Momma.  Here is a photo recap of Georgia's birthdays through the years...

I hope my girl never doubts my love for her or how incredibly special and unique she is.  I tell her every day, and her response is "I love you to the moon and back, Momma".  What more could anyone ask for in life than that? Thank you Lord for the gift of my sweet girl.

Good Lord Willing.

The final weeks of 2013 were awesome for our family as they brought Jacob's first Christmas and lots of family time and sweet moments that I will treasure in my heart forever.  The whole family was sick with the cold, starting with Jake and then myself and then Jon - only Georgia managed to avoid the cold.  But we didn't let it get us down!  Among the highlights were hours and hours spent at my parent's house, a couple of days with Jon's family, Christmas Eve watching my parents light the Advent candle at church with the "help" of Georgia, Jacob and my sweet nephew Brandon, Christmas morning watching Georgia open her gifts while Jake was cozy sleeping in his bed, and New Years Eve out with my handsome husband.  Here are a few photo highlights from the holidays:

One good thing about the time we spent in Toronto in 2013 - the Disney store.  Georgia was happy with her Disney gifts :)

When Jake finally decided to grace us with his presence on Christmas Day, Georgia greeted him with a big hug and kiss.  I am blessed.

This Christmas I had been disappointed that I couldn't take Jake to meet Santa at the mall like I did with Georgia every year - we just couldn't risk the exposure to germs and I'm sure that Santa suit is not regularly cleaned.  It's just one of the small things that other parents don't think twice about, but as a heart Mom I couldn't let Jake take part in that experience.   My awesome Dad went out and got a Santa suit so that Jake could have his moment with Santa, and I could stop feeling like something was missing from his first Christmas.  Jake loves my Dad - but he did NOT love Santa.  Thanks for making that happen, Dad.

Jake is now saying 4 words: Mama, Dada, Gaga and DOG. Here's Jake with his big old doggie, Lukey :)

 

I am not sad to see 2013 go.  It was the year that brought us our precious baby boy, and saw him go through 3 open heart surgeries, 2 pacemaker implantations, and a cardiac cath. For 4 months of 2013 Jacob lived at SickKids in Toronto.  Jake has suffered so much in 2013, and the lowest point for me were the days following his Glenn when he would not smile.  My sweetheart, always smiling baby boy could not find his smile - it was devastating.  I thank God that Jake found his smile again, and that he has been thriving as well as a baby with half a heart can be thriving ever since.  2014 is likely going to start with a surgery as well - but this time it's not a heart surgery.  It's time for Jake to get his permanent feeding tube, a G-Tube, in his stomach.  This surgery should be done at the Janeway at home, but we are waiting on confirmation from the surgeon that Jake's pacemaker is not in the way.  If the Janeway deems that Jake's pacer is in the way and needs to be moved we are likely on the road to SickKids hospital once again for his G-Tube and movement of his pacer.  Please God, let that not be necessary.  If Jake has to have a G-Tube, I want to be surrounded by family and friends when it happens, not isolated in TO again.

I think some of you may be wondering what happened with Jake's eating - I had been regularly posting pictures of Jake covered in food, and had happy Facebook statuses about what Jake had eaten that day.  Jake seemed to be on the right track to getting rid of his NG tube, but really  he wasn't even close.  In a nutshell, a chunk of each day is spent coaxing and cajoling Jake to open his mouth and eat, or drink, but the amounts and volumes Jake consumes are not nearly sufficient to sustain him without the help of his feeding tube.  A average feeding for Jake will go something like this: about 1-2 tablespoons of baby food on the best day (or 1/2 teaspoon on a bad day), followed by maybe 2 puffs broken in half, and 1/4-1/2 of a Farley's cereal biscuit, all washed down with 5-10 ml of formula.  That would be Jake's best case scenario - and even if this happens 3 times a day - it's not enough.  To give you an idea of what he should be consuming - 175ml of formula goes into his NG tube every 3.5 to 4 hours throughout the day - and the maximum Jake drinks on his own is 20 ml from a sippy cup.  So, that's why we are meeting with the surgeon on January 15 to talk about his G-Tube.  I'm ready for it, or resigned to it really.  I see no way around it, and I am exhausted with my efforts to avoid it.  It is what it is - Jake needs a more permanent feeding tube.  Jake has been pulling out his NG more frequently, hates having anything put near his face (because he thinks you are going to move the NG or replace the tape on his face), and the skin on his sweet cheeks has become damaged from the constant taping to hold the NG in place. Over Christmas I moved the tape on one cheek that had lifted, and the damaged skin underneath tore and bled for almost 48 hours before finally clotting and scabbing over.  If you noticed in some of our Christmas pictures that Jake had the NG on one cheek and a star wars band aid on the other cheek - that was why! As much as I am looking forward to a time when I can see all of Jake's face when I look at him, the thought of another surgery fills me with dread and I find myself pushing the panic back down.  Please, please, please...let this one be at home.

I would love to have prayers on Jake's behalf once again - for the surgeon to make the right decision regarding his pacemaker and G-Tube, for Jake's surgery to take place here at the Janeway, for healing and a fast recovery when the surgery happens, and for a step forward in Jake's feeding and drinking skill development.  

Here's to 2014, the year that I hope will be boring and calm for the Anstey family.