Sep 20, 2013 at 03:41 pm

September 14, 2013

Update posted by babymiles
Another week has gone by here with Mr. Miles. There was a time in this saga that our family thought we would only be in vancouver for a few weeks, or perhaps a month. That was in june. We've realized the trick, is to not anticipate the long term. It feels strange, I suppose partly because we are so culturally wired to plan ahead. For now we are thinking in small increments. Miles turned 2 months old last week. He was 9 weeks on thursday, and once he gets his heart we will be able to go home, hopefully, after about 2 months. Those are the time frames that have become our everyday. We will worry about retirement later. Miles is up to 7.5 Lbs. It seems like the NJ tube is making a big difference in keeping his weight gain steady, and keeping his food where it belongs. Our little guy is finally showing a tiny bit of baby fat. The tests that seemed so intriguing in the first week of Miles life have become the everyday norm. When a run of the mill n...ewborn fusses at night, parents rock and feed him, maybe change him and carry on. When Miles fusses at night, nurses jump into action, an ECG is ordered and a cardiologist is called in from home. Im beginning to wonder if some of our doctors sleep. We made it outside today with Miles, first time in a month. One of our doctors has been encouraging us, basically twice a day every day since the last time we were outside, to get Miles outside of the building. Its tough to take Miles off the floor though, because we need a nurse with us at all times, and we take half the medical equipment in the building with us when we go. But we made it out none the less. The pictures below with the signs are our evidence to prove we got out.  We decided to give our months notice at our house in West Kelowna this week. We had hoped that we wouldn't need to give up our house, but it doesn't make sense for us to keep it any longer. The doctors aren't willing to have Miles sent home to wait for his heart. So if we are being honest with ourselves, what we thought was our visit to Vancouver, has become more of a move. We feel kind of like a band of gypsies. But consider the ravens. We will deal with finding a home, once we are actually able to be home. Thank you for your continued interest in our family. We miss our friends and our home awfully. Please pray for our sons miracle.See More
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