Perfection.

This is one of the beautiful pictures taken by Pretty Pictures last week.  That's some amazing talent there.  Thank you, Vanessa! They are images I will treasure forever.


It seems that my little half heart has more lessons in store for me.  I thought I had grasped the concept of one day at a time during his stay at SickKids, but apparently I now need to relearn that lesson.  Jake is doing well overall and he has started gaining weight with the switch to dairy free.  Yesterday he weighed in at 10 lb 8 1/2 oz at our cardiology clinic visit.  The blood in his stool is still there, and some days there is quite a lot of it, I haven't gotten a clear answer as to why this would be.  The cows milk protein allergy was supposed to be the solution, but he is now having my breastmilk (which is dairy free because of my diet), and Neocate formula for supplementation - this formula has the cows milk protein 100% broken down already.  And the blood is persisting.  Another suggestion was that he might have polyp on his bowel wall, but that has not been followed up on at this point.  This is going to be a topic of discussion for us at our cardiology appointment tomorrow.  In terms of feeding I am beginning to feel that his NG tube is going to be around for awhile.  Jake has been nursing almost exclusively, with one bottle during the night at the feed that Jon does so I can sleep.  The nursing sessions are very short, and usually end with him sleeping or getting frustrated with all of the work.  I'm trying to persevere, but this process is teaching me patience on a new level.  The visit to the cardiology clinic yesterday was unscheduled, but Jake's oxygen saturation levels had dropped down as low as 66 so the cardiologist on call wanted to examine him.  By the time we got to the clinic Jake's levels were again mid-80s, which is his usual range.  The examination went well, with lots of smiles and coos from Jake directed towards his cardiologist - who is an awesome person and doctor and that Jake already seems to love.

I thought I would share this picture of Georgia comforting her little brother after his  morning Enox injection :) Jake loves his big sis and always has a smile ready for her!

Living in the moment, patience, loving unconditionally...these are all lessons that Jake is teaching me over and over again.  Our whole family went back to church Sunday past...and that was so wonderful.  When Major Judy welcomed Jake back it was all I could do not to bawl all over him.  And aptly enough, the focus for the sermon was the new movie Man of Steel - Jake got special mention as the Citadel's own Superman :) After the service we had a family lunch at Boston Pizza, and my comfort level with feeding Jake outside the house is pretty good now.  I was stood by the end of the table rocking him and holding up his NG gravity feed for a good part of the meal - we get some stares but when people notice the tape on his face they seem to be reasonable enough not to make any comments or stare too hard.  That being said, I have had a few adults stare so long and hard that I have physically removed Jake from their sight while doing my best now to make a comment or glare at them.  It's hard though - Jake is perfect in every way to me, but many people do not see his perfection - all they see is the tube going into his nose and the tape on his face.  Here is the perfection that I see, and my entire heart all wrapped up in these two amazing children:

This picture is a pretty accurate indication of our life right now, with this sibling moment in the forefront and in the background a baby scale, hand sanitizer and lysol wipes.  Thank you Lord for these moments, and even for the frustrations that come with them.  Give  me daily strength to be the Mom that these two blessings need.