Monday, January 26, 2015

Hi Friends!

I have entered Jake in the Mended Little Hearts #rockyourscar contest, so if you can please vote for him at Rock Your Scar Contest.  Yay, go Superbaby!

Thursday, January 15, 2015

The best laid plans...

It's the day before we were supposed to travel to Toronto for Jake's G Tube surgery.  You read that right - supposed to - as in we are not flying out tomorrow.  It's painful for me to even type these words, but there has been another delay.  A delay in October, a delay in December and a delay in January.  I've processed this now, but we got the news 4 days ago and it's only now I can sit and type out this post.  The surgeon had a personal emergency and has cancelled all of his January surgeries.  So...our new date is February 18.  That's 4 weeks and 5 days from today.  :(

Our flights have been rebooked, at an extra fee and hassle over the oxygen assistance required for Jake.  This will be Jake's first time flying with asthma so his cardiologist has requested extra oxygen for him, and Air Canada didn't like that one bit.  After jumping through the hoops (both us and the cardiologist), it's been straightened away.  We now fly to Toronto at 5 am on the 13th of February.

In more positive news, Jake gained 4 ounces last week.  He had 6 vomit free days in a row, but has now vomited both yesterday and today so we're back to the struggle.  He's come very close to slipping back down to the 20 lb mark.  We fought so hard to reach 21 lbs and then 22 lbs, it's so hard for me to see those numbers go down.  Keep praying friends, Jake needs to start gaining steady weight.  Heart wise things are going really well, Jake had another No Change echo report on Tuesday and after the G Tube heals the plan is to start skipping months for echoes.  If all is well, Jake will have a echo every second month instead of every single month.  How lovely will that be! And his last echo was done unsedated so the plan is to try for unsedated echoes each time now and only use sedation if he is uncooperative.  That's a few steps towards simpler visits to cardiology, and I welcome them with open arms!

Here's Jake at Cardio this week rocking his "My cardiologist is better than your cardiologist" shirt, and then right before his echo showing off his muscles.



   Since Jake is still in isolation we're spending our days inside for the most part, and trying so very hard to stay well and healthy to avoid yet another delay in surgery.  It's a hard battle during flu season, but we're fighting it daily.  Last week found us at the Janeway emerge in an isolation room to check out a cough and runny nose that Jake was having.  During that stay we had a very unpleasant and panic inducing experience with a young doctor using the words "possible heart failure" to describe the look of Jake's chest x-ray.  Those are terrible words to fling at heart mom, especially if there is no basis for them.  Once cardiology was consulted we were told that there were no signs at all of heart failure, it was likely a shadow remaining from his struggle with RSV and asthma.  I aged 10 years, and I think my mom aged 20 years, while we were waiting to hear if Jake was indeed in heart failure.  I hope to never again hear those words uttered in a sentence referring to Jake.  Never again.

So, although I'm sorely disappointed that we are not getting a plane tomorrow I will count my blessings today.  A relatively healthy family, a new surgery date, no heart failure, and  4 ounce weight gain.  Woo!


Monday, January 5, 2015

January Prayer Request

2015 is underway, with a return to normal routines today.  Georgia went back to school, Jon went back to work and Jake and I stayed home :)

I mentioned in my last post that Jake had not been gaining weight well, and had hit the 3rd percentile on the growth chart which is the lowest he has ever been.  He was in the 4th percentile at 2 months old when we returned from Toronto.  Trying to increase Jake's fluid intake to up his calorie count has failed miserably.  Jake started to vomit, often projectile vomiting, daily and sometimes multiple times in one day.  This was at the lower feed volume, so we have only reached our target of 270 ml a few times successfully.  A major downside of this vomiting is that he has also been vomiting up his NG tube.  So he loses an entire feed, and the NG tube at the same time.  Not only that, but he has been choking on the NG as it is only coming halfway up so part of it is in his mouth and the other part is still in his throat/nose.  It's been awful.  In the last 2 weeks we have gone through 7 NG tubes.  Normally these tubes are changed monthly.  It's horrible.  This has resulted in a very upset Jake and very guilty feeling parents.  This morning when we replaced Jake's tube he got into his ball pit and crouched down low with his blanket and refused to look at us.  He knew what was coming, and he fought with all his strength.  I have been doing all NG tube inserts and Jon has been the one restraining Jake while he fights.  I wanted to switch jobs, but I am not physically strong enough to restrain him - that's how hard my 21 month old is fighting this NG tube.  

Jake has now been started on 2 reflux medications.  We're waiting to see if this helps.  But...he just vomited another NG tube, this time only 60 ml into his feed.  And I just put that tube in at around 8:30 this morning, so it was in for less than 12 hours before being vomited up.  What on earth is happening?  So once again he gets only half of his daily fluid requirement.  I will have to close my eyes when he is weighed before his Synagis shot tomorrow - I don't want to see that number on the scale.  I'm feeling so sad right now.  My poor sweet boy.  Here's a shot I took this morning before he knew I was about to put the NG back in...My unsuspecting little man.



Jake's G Tube surgery date is 16 days away.  I am asking for big prayers for the next couple of weeks.  Jake needs to stay healthy so there is no delay in surgery, and he needs to start keeping his feeds down and his NG tube in - this constant putting it in and having it thrown up is not good for his happiness or his health.  Weight gain would be a lovely plus also.  Oh my.  Please pray.

Jake has been in isolation for a few weeks now, and we'll continue this until his surgery on the 21st, as much as we can.  The only place he's gone is to Nanna's house or Auntie's house.  Jake is tired of being cooped up, and routinely will try to put on his shoes or coat, or hold up his hands to us and say "I come" when he sees us getting ready to leave.  It hurts my heart.  I want to give him the world, but I can't let him out of the house right now.  Ugh.  It's hard on Momma's nerves too, all this isolation.  Every day I try to leave the house at least once, even if its just a drive to Tims or a quick run to the grocery store.


In happier news, Georgia will be 6 years old on Saturday January 10th, and we celebrated this past weekend with a big party that included swimming, a bouncy castle and minnie mouse with all her friends.  It was a good day.






On Sunday past the message was focused on 1 Samuel 16:7 "man looks at the outward appearance but the Lord looks at the heart".  I found my mind drifting a little towards the wondering what God sees when he looks at Jacob's heart.  On the outward we see a small little guy, tough as nails, often with a blueish tint to his face, covered in many scars and a big yellow tube and white tape on his cheek.  What is on the inside? Brokenness? Imperfection? Strength? A miracle? Marks left by the surgeon, and pacemaker wires attached to his heart? All of my love and faith and hope bound up in half of a precious heart?


I've said this before, and I'll say it again.  The world may see my son as an imperfection, but in the eyes of those who love Jake and in his Creator's eyes he is PERFECTION.

Check this out...Jake likes to fall asleep in my arms like this...



And this is the appreciation we got on Christmas morning from Super Baby...



Even in the  middle of my fustrations I am blessed.  Blessed.  Please pray for Jake and his family, January is going to be a rough month for us.

Thursday, January 1, 2015

2015


Happy New Year from our family to yours.  We have no idea what 2015 will bring for our family, just vague events like a G Tube surgery,  Georgia finishing kindergarten and starting grade 1,  a heart catheterization, possibly the third stage of Jake's heart repair...but really no one knows what 2015 will bring for them and their loved ones.  So we take on giant step forward today - happy and thankful.  Bring it on 2015, we're ready and God is in control!