Cross Runner's Heart

Noah is working really hard to establish oral feedings.  Because of his heart condition, he fatigues easily.  Someone told us that his feeding challenges are similar to an average person stepping out to run a 5k with no training.  Our medical team does not want him fatiguing past thirty minutes to get his full three ounces every three hours.  Sometimes he is able to gradually consume the whole amount, and other times we are faced with the decision to connect his nasogastric tube for the rest.   Fighting to feed As Noah works to improve his feeding efficiency, Jana and I are striving to find a balance with our time.  Yes, I am still running.  Sometimes fast and sometimes slow.  We are both trying to be more proactive while taking time-out for "mindfulness" in our own ways.  I'm trying to remind myself to use the creative portion, or right side, of my brain as mentioned in the  About Me  section of  www.crossrunnershea...

Click here for Noah's Homecoming PART 1 Part 2: Our milk bank July flew by.  Despite our medical backgrounds, it has been a constant learning curve.  Jana is filling up our freezer with breast milk and we now have a huge supply.  There was a special milk bank when we were at the hospital, a place where we could store excess feedings.  Now we have our personal bank at home.   The nasogastric tube (feeding tube) placement can be tricky, especially when you realize it has come out at 4 am. Imagine milk dripping into the crib and the tortuous device has to go back in your baby's nose, down into his belly before the next feed.   We are now in the interstage period (time between Noah's first two open heart surgeries).  There are a lot of details and precautions to constantly be aware of.  We send his daily heart rate  and oxygen levels to the cardiology team at Nationwide Children's Hospital through a monitoring devic...