Aug 28, 2013 at 05:19 pm

August 27, 2013

Update posted by babymiles
Its been a few days since we have updated you all. Miles has been relatively the same. We had a nice weekend with visits from friends and family. On Monday Miles had his transplant blood work done. We asked for Miles anesthetist to come and do it because the lab techs have been unsuccessful on about 16 pokes. The anesthetist used ultrasound to find a good vein and got it all in one shot. Today we got the results back and it was a "ZERO". This is a very good thing because it checks to see if Miles has developed any antibodies. Babies typically don't develop antibodies until they are closer to a year of age but Miles had a blood transfusion after one of his procedures and that blood could contain antibodies. Antibodies mean Miles would need to receive a heart with a specific blood type, ruling out possible hearts available. Because Miles counts were "zero" he can receive any donor heart with a mismatched blood type. This keeps his options open for any heart the right size that comes available. On Monday Miles had his regular weigh in...He now weighs 3.015kg, up from 2.9kg. Another small victory. He is gaining very slowly so the doctors talked and were considering their options to increase calories. For now they have increased his volume of feed from 60mLs to 65mLs. It doesn't sound like much but at the end of the day that is an extra 40 mLs. They will see how this goes and may add micro lipids (fat) and/or sugar to my milk to pump up the caloric intake. These should increase the calories without possibly causing distress on his bowel like formula powder can cause. Over the past week we have received some very extraordinary gifts. MBSS Bears football team and family came together and donated funds to our family as well as a beautiful bear for Miles. He's the littlest Bear fan! We were also blessed to receive a donation from Kelowna General Hospitals ICU and beyond. They also put together a gift bag for Noah full of trains and tracks, cars and other toys. Noah couldn't wait to set up his trains and cars, he played for hours. Thank you! A friend of ours Brennan Garrecht, even fundraised at his office (Capri Insurance). Thank you so much to all the people who continue to support our every need. Spiritually, emotionally, physically and yes..financially. We have been so blessed. Noah and my mom came down yesterday evening to spend at least a week with us. It is so great to see him after 11 days away. He is growing and changing all the time. He has learned to ride a tricycle most recently and we couldn't be more proud of how well he is talking and communicating now. This coming weekend, I (Sam), will be turning another year older. It won't be a typical birthday. Living in a hospital room makes it hard to celebrate all together with our family. But we will celebrate none the less. I have made it through another year to celebrate with the three greatest boys a mom and wife could ask for. It may be in a hospital room but we will all be together...I couldn't ask for anything more.  Kelly has been looking into Hotel deals the past few days trying to find a place for us to get away for a night to celebrate my Birthday together and have a break and rest. I have been less than willing to leave Miles at night and have been greatly encouraged by friends, family, nurses, doctors, and people who have been in similar situations to get out and rejuvenate. If I am worn out or get sick I am no good to Miles. So, I am going to try and leave for a night and hopefully get a solid nights sleep without waking up to beeping, bells, creaking doors, lights, noisy nurses or a hungry/cranky baby. A big shout out to Elaine Yong for hooking us up with a great deal! So appreciated! Fall always feels like the start of a new season of life, and yes sorry to break it to you but summer is ending. We are praying that this autumn would bring the new lease on life our boy needs. And now heres a super cute video.
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