Thursday, March 13, 2014

Coming full circle.

Planning for Jake's 1st birthday celebration is well underway, and I had another moment of realizing how great the people around us are when Terry Rielly, the Teddy Bear Man himself, contacted me and offered to  perform at Jake's party.  The kids are in for a real treat, I think!  It's a Superman party for Superbaby Jake!!!

 I've been spending a lot of time thinking back to this time last year...At this point I was already off of work because of Jake developing Complete Heart Block and the risks associated with that.  I was being seen for an echocardiogram and 3D ultrasound at the Maternal Fetal Assessment Unit of the Janeway 3 times a week - every Monday, Wednesday and Friday.  I spent hours upon hours there, and always had a cup of tea afterwards at the cardiologist's urging that this could help speed up Jake's heart rate.  The kindness shown to to me and Jon and our extended family by the ladies of MFAU will never be forgotten, and every time I walk by the entrance to the unit I'm overwhelmed again by how special they are.  At this point I was packing my suitcase in preparation for getting on a plane to TO at 36 weeks pregnant to wait for Jake's birth.  Jon and I were taken in by Heather and Aliyah and stayed there until we were advised to move closer to Mt. Sinai as Jake's arrival became imminent.  We shared a lovely couple of days with Mom and Dad and Georgia at an hotel across the street from SickKids before delivery day arrived and this saga truly began for our family.  It seems like just yesterday that I was waddling around downtown Toronto scared to death for my baby, but also as ready as I could ever be for the experience.

And now...My 11 month old is crawling around my living room with a smile on his face.  We have been so blessed.  So truly blessed.  Click below to view the first video we got of his slow and steady crawl...

My last couple of posts have been vague concerning Jake's feeding issues and his potential g tube surgery, but not intentionally.  I didn't have enough information to really provide an answer.  Now I do - Jake will not be receiving a g tube anytime in the foreseeable future.  Why, you ask? Simply put, because his pacemaker is completely blocking access to his stomach, and SickKids has determined that it is unsafe for the pacemaker to be moved.  It's a fairly new pacemaker, just implanted in September 2013 and it will only be moved or replaced when the battery is low or Jake is due for another open heart surgery which should be happening around the same time.  I've been slowly processing this news, and really my only fear is that Jake will still have the NG when he is old enough to notice that he is different from the other kids his age.    My goal is to give Jake as "normal" of a life as is possible for someone with half a heart.  We've been having some issues with Jake's hemoglobin level being too high, and last month we increased his fluid intake by 10% in an effort to deal with this.  When the level was retested last week it was still high.  I'm not sure what this means, but when our cardiologist returns from the travelling clinic tomorrow, we'll find out.  I'm a little nervous, and hoping it doesn't mean that he needs another med or anything invasive. It's in God's hand though.  God is bigger than the boogie man, like the Veggie Tales characters sing.

One new development with Jake that breaks my heart is that he is now recognizing unpleasant situations.  In particular, the bloodwork clinic at the Janeway and his RSV shot at the day clinic.  At his last round of routine bloodwork Jake looked visibly upset when we went into the room we are always in, and the same technician that we always have walked in.  He started bucking his body up and down on the table to get away from her before she had even taken the needle out if its packaging.  He has NEVER done this before.  Also, he now cries frequently at his twice daily enox injections - when before he would never cry.  I think it's recognition of the needle and anticipation not only of the prick but also of us  needing to hold his arm or leg in place for two minutes while we put pressure on the site.  It's heart breaking.  I don't know what to do to reassure him, and often I am the one holding him down so that pain can be inflicted on him.  This is the hardest thing to ask of any Mom.

Remember baby Sara from  my earlier posts? Here she is hanging out with Jake at our house one night last week.  She is the sweetest little miracle, and getting to be a big girl!

Exciting things are happening locally for Moms of CHD warriors.  We had a very insightful and affirming meeting with our local Heart and Stroke Association, and the NL Heart Parent Support Group is taking part in Claire's 3rd Annual Craft Fair with an awareness booth in partnership with Heart and Stroke Association.  If you received an invite to this fair from me, that's why! If not, the info is below.  Come along and spend a little time on your Saturday taking part in a very important event for a very important cause.  Look for me at the CHD booth!

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