Thursday, June 13, 2013

Our journey continues...

Jake enjoying playtime on his mat!

There is really no place like home.  The days since we left the Janeway have been wonderful, despite being the busiest I have ever been in my entire life.  Jake's schedule of medications, and his feeding schedule combined with his feeding issues, his doctor and specialist appointments, plus all of our normal life responsibilities and keeping Georgia happy make for one very tired (but very happy) Momma and Daddy.  Last Sunday we found blood in Jake's stool, which brought on a very real fear that his NEC was reoccuring, but the cardiologist on call was able to do some testing and reassure us that this was very unlikely to be the case.  I was very impressed with the Janeway's response when I brought Jake in - they did the triage in an isolation room to protect him from any germs in the waiting area, kept him isolated and with his own nurse for our entire stay.  Our waiting room visit was so short I didn't even get to sit down before we were called in.  Thank you to the Janeway for that quick response, and for caring enough to keep Jake safe from everyday germs! To make matters even better on Sunday, Jon had left at 6 am for a business trip to Boston - but thankfully my Mom and Dad had come in to help me out and Georgia was able to say with Mom while Dad went with us to Emerge.  A full assessment, abdominal x ray, and two bloodwork pokes later we were on our way home.

Two days later at his cardiology checkup Jake still had not gained any weight - he has been steady at 9 lbs 8 3/4 oz since we got home, despite round the clock and calorie fortified feeds.  Jake was sent down to see the dietician who listened to our description of Jake's eating habits and his poops (sorry, TMI, I know!) and is now convinced that he has a cow's milk protein allergy.  The formula fortification was switched to Nutrimigen A+, which has the cow's milk protein already broken down, and I was directed to stop eating dairy.  It has been only two full days since we changed his formula and my diet, but it seems like there is less blood in the stool, less frequent and less painful poops as a result.  I personally am missing milk like crazy, and am not fond of the almond milk variety, but maybe it will grow on me? The two things that I have not figured out how to replace with a dairy free version are cheese and chocolate.  If you know me well, cheese and chocolate are two of my absolute favourite things to eat - and to eat in large quantities for that matter! One friend has told me that bulk barn carries soy chocolate that tastes like milk's worth a shot, but I'll believe it when I taste it! And if anyone has a solution to my cheese dilemma, I'd love to hear it!

I am praying that at our checkup tomorrow my skinny little boy has gained something...even an ounce would make me happy at this point! According to the American Heart Association, "Healthy babies usually double their birth weight between four and five months of age. Infants and children with congenital heart disease and congestive heart failure or cyanosis (blueness) tend to gain weight more slowly. An eight-ounce to one-pound gain in a month may be an acceptable weight gain for a baby with a heart defect." (  8 ounces to one pound in a month! Seriously! At this point in Georgia's life, she was often gaining a pound or half a pound between weekly visits to the breastfeeding clinic.  Jacob's heart surgeon was not kidding when he told me that Jake's development would be regularly testing my patience!

I know how blessed I am to be home with my baby, and he has come so far in his little life.  The feeding issues and weight gain are worrying and frustrating at times, but they are not life threatening.  I'm so thankful to God for having brought us this far. Our journey with Jake's heart is far from over, but I know that our family is not walking this path alone.   Psalm 147 has a beautiful message for Jake's life, and a perfect outlook for the days ahead.

Psalm 147:3

New International Version (NIV)
He heals the brokenhearted
    and binds up their wounds.

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