It's one of those literary statements that like "it was the best of times, it was the worst of times.". It will stay for me forever.
Since reading it, I haven't been able to shake it.
The story is tragic. A beautiful couple, loving each other since high school; gets married. They have a beautiful son, Noah. They are making a beautiful life together.
Baby number 2 is on the way, another boy, but there are complications. He is going to be born with 1/2 of his heart.
Doctors promise surgery, the reality is not repairing what is there, but rather now, a heart transplant. Edmonton is where they send these babies and their families, away from the support of family, friends and church.
I don't normally do this, but here is the entry they had from a couple days ago, and I can answer the question. It will make you more compassionate, more loving, more reliant on God, more of all kinds of great things. And I can see that like your life before Miles, you will continue to impact the world.
"I wonder how this is changing us as people"
That was the question Sam and I had last night, at the end of a very long and trying day. The results from Miles catheter test yesterday were not what we had hoped for. The pictures revealed that the coronary arteries don't supply the back side of Miles heart. As a result, the planned surgeries to repair his heart are no longer an option.
Miles needs a heart transplant.
We are still processing what we've found out. Things almost seemed simple, or at least planned, and orderly before we found out that his heart couldn't be repaired. Our surgeons and cardiologists have been very honest with us, and we know the cards are not stacked in Miles favour. There are many complicating factors, including keeping Miles alive long enough to try and find the heart he needs.
A meeting is being held Monday morning between our health team and the hospital administration to advocate for our cause. Normally heart transplants like this one take place in Edmonton, although in a couple exceptional circumstances they have been performed here at BC Children's Hospital, which has an incredibly capable, sought after and experienced team. Moving to Edmonton to wait for a heart would mean the literal end of our family financially, which we've accepted, but it would also place an incredible emotional burden on our family, especially on our precious 2 year old Noah, that right now seems unbearable. It seems we've been tossed into the middle of a continuing argument. The need for a children's heart transplant centre here in BC is urgent. You can read lots of recent articles in the Vancouver sun and Province newspapers, explaining the situation, and the roadblocks.
After the meeting on Monday, we should get a clearer picture of the road ahead. Miles should hopefully be on the official waiting list for a heart by mid week. And then we wait.
Every prayer is heard, and needed every hour of the day. Every hour Miles is with us is a gift that emphasizes the preciousness of life. Every day when the clock rolls over at 5:23 am, we celebrate that we have been entrusted with this life for another day.
Late last night, our pastor Derrick Hamre came to the hospital and dedicated Miles to Jesus. It was incredibly special time, that Sam and I are so grateful for. We appreciate your prayers so much, for our boy, our family and our every need.
To donate to this family follow this link:
http://gogetfunding.com/project/caring-for-baby-miles
It's one of those literary statements that like "it was the best of times, it was the worst of times.". It will stay for me forever.
Since reading it, I haven't been able to shake it.
The story is tragic. A beautiful couple, loving each other since high school; gets married. They have a beautiful son, Noah. They are making a beautiful life together.
Baby number 2 is on the way, another boy, but there are complications. He is going to be born with 1/2 of his heart.
Doctors promise surgery, the reality is not repairing what is there, but rather now, a heart transplant. Edmonton is where they send these babies and their families, away from the support of family, friends and church.
I don't normally do this, but here is the entry they had from a couple days ago, and I can answer the question. It will make you more compassionate, more loving, more reliant on God, more of all kinds of great things. And I can see that like your life before Miles, you will continue to impact the world.
That was the question Sam and I had last night, at the end of a very long and trying day. The results from Miles catheter test yesterday were not what we had hoped for. The pictures revealed that the coronary arteries don't supply the back side of Miles heart. As a result, the planned surgeries to repair his heart are no longer an option.
Miles needs a heart transplant.
We are still processing what we've found out. Things almost seemed simple, or at least planned, and orderly before we found out that his heart couldn't be repaired. Our surgeons and cardiologists have been very honest with us, and we know the cards are not stacked in Miles favour. There are many complicating factors, including keeping Miles alive long enough to try and find the heart he needs.
A meeting is being held Monday morning between our health team and the hospital administration to advocate for our cause. Normally heart transplants like this one take place in Edmonton, although in a couple exceptional circumstances they have been performed here at BC Children's Hospital, which has an incredibly capable, sought after and experienced team. Moving to Edmonton to wait for a heart would mean the literal end of our family financially, which we've accepted, but it would also place an incredible emotional burden on our family, especially on our precious 2 year old Noah, that right now seems unbearable. It seems we've been tossed into the middle of a continuing argument. The need for a children's heart transplant centre here in BC is urgent. You can read lots of recent articles in the Vancouver sun and Province newspapers, explaining the situation, and the roadblocks.
After the meeting on Monday, we should get a clearer picture of the road ahead. Miles should hopefully be on the official waiting list for a heart by mid week. And then we wait.
Every prayer is heard, and needed every hour of the day. Every hour Miles is with us is a gift that emphasizes the preciousness of life. Every day when the clock rolls over at 5:23 am, we celebrate that we have been entrusted with this life for another day.
Late last night, our pastor Derrick Hamre came to the hospital and dedicated Miles to Jesus. It was incredibly special time, that Sam and I are so grateful for. We appreciate your prayers so much, for our boy, our family and our every need.
To donate to this family follow this link:
http://gogetfunding.com/project/caring-for-baby-miles
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