Monday, February 9, 2015

February is Heart Month

Jake's NG tube issues have escalated over the past couple of weeks.  We have been struggling to keep Jake's fluid intakes to a level that would prevent dehydration because he has been vomiting the majority of his feeds.  This landed Jake in the emergency room over a week ago, and resulted in a new feeding plan - instead of feeding Jake 250 ml in four NG feeds a day, we were to feed Jake every hour during the day in much smaller amounts.  Jake's goal is 1000 ml, but we have not been able to achive this without vomiting even with the smaller amounts.  If we hit 700-750 ml, it's been a good day.  The obvious downside is that Jake spends the majority of his day in the high chair, with me or Jon sitting by his side watching for signs of vomiting.  

The loss of calories has meant a weight loss for Jake too.  In the last week he has lost 13 ounces, but I weighed him this morning and he seems to be holding steady at just above 21 lbs now.  We are now 3 days away from our flight to Toronto and the elusive G Tube.  I have been feeling anxious for the last week or so, with a nagging feeling that the surgery was not going to happen.  This surgery has already been postponed 3 times, so I know where the anxiety is coming from.  It's just anxiety this time though, it has to be.  Feeding Jake every hour makes for an exhausting day for both him and me.  Jake is tired of being plunked in the high chair and made to stay there while the calories slowly drip in, and I'm tired of only having half hour stretches of time for anything outside of feeding.  Jake's body is at it's limit with this NG.  The weather is calling for the biggest storm we've had yet this winter on Thursday.  But that had better be over before Thursday night.  Our flight leaves at 5 AM on Friday, and I'm desperate enough to pilot the thing myself.

I had a moment a few days ago where I realized something.  Jake is 22 months old, lives in Newfoundland, and has never been in the snow.  He's never been sliding or made snow angels, or built a snow man.  Georgia does all of these things on a regular basis, but between fear of Jake getting sick, how easily he gets cold, and his isolation for surgeries - it has never happened.  We even bought a red baby slide last year, but it's still in our basement and has never been used.  So I'm making Jake a promise today.  After this G Tube, when we get home, he is going out in the snow.  The whole family can go out in the snow for the first time ever.  Long overdue!  That's something for me to look forward to through this next trip and surgery.  Jake in the snow.  What a beautiful sight that will be!

February is Congenital Heart Defect Awareness month, and Jake was present in City Hall when the Mayor proclaimed it to be CHD month in St. John's - it was his only non-hospital public outing in a month.  See him sitting up like a little man watching the proceedings...if only he understood...

Afterwards Jake and 3 other Heart Warriors posed for a picture.  From Left to Right we have Isaiah, Sara, Carly and Jake.  Rock on, Warriors.

On Friday NL's Minister of Health, Steve Kent, signed a proclamation that made February 7-14th Congenital Heart Defect Awareness Week for the entire province.  Jake missed that because he was at the Janeway, but it's so awesome that it happened.  It's a hugely important thing, for CHD to be recognized in this way in our province.  As part of CHD week I"ve been taking part in some Social Media challenges, and I'll share some of my posts with you now.  

Every 15 minutes a child is born with CHD.  That's 1 in 100 babies.

And finally...

This is why I will never stop trying to raise awareness.  I will never stop sharing Jake's story, and I will never stop fighting for him.  I am a Heart Mom, and I can do this. 

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