[Image: Caring for Baby Miles]

About This Campaign

As written by the parents of this precious little life:

"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 Childrens 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."

 

July 16, 2013 Update:

A really quick update Mid morning today, we had a very excited and flustered surgeon run into our room in the PICU and say "the hospital is listing Miles for the surgery here".

We are so happy. Words cannot express what a stress this is off of our shoulders. We still haven't heard from the ministry of health what their stance is on the issue, but obviously, someones chains have been rattled. We've had radio interviews with CBC kelowna, vancouver and kamloops. We just finished filming an interview with Global BC, and we are filming an interview with CBC television this afternoon.

We are so happy for this victory for our family, but we want to be sure this is a permanent change, and that when possible, it becomes standard procedure for these kids to have their operations in BC.

As a side note, our fundraiser page is making us gasp. I don't know who you are, but I can never say enough, I weep over my keyboard at your generosity. We would like everyone donating to know that what our family doesn't use while Miles is in treatment, will be donated back to the BC Childrens Hospital Foundation and Vancouver Ronald Mcdonald House.

Miles life, and all this love will touch more lives than we can imagine.

 

July 17, 2013 Update:

Another long day has come and gone, and the agony of waiting already feels like more than we can handle.     
Today was eventful. The day started out with Miles getting an MRI, he's part of a research study looking into kids with congenital heart defects and how those defects impact brain development. The results from today were not what we had expected. This was the second MRI miles has had, the first one was at 30 weeks while in utero. When the 2 were compared the doctors could see 2 small lesions deep in Miles brain, both evidence of "strokes". One appeared to be a few weeks old, which of course means it happened during pregnancy. The second looks as though it happened in, or shortly after labour. Thankfully the areas affected are in the communicative part of Miles brain, and not in the functioning brain cells them selves. The neurologist assured us no one, and no expert would ever be able to perceive an effect from the "strokes" if there even was an effect. The worry now is the possibility of more, and the possibility of them happening in a more crucial area in his brain. The current theory of the research study is that the underdeveloped heart plays a roll in these events, though its not clear to what extent. As miles becomes sicker the risk having more of these "strokes" increases. They are a matter needing urgent prayer.     
Miles was able to give us some blood today to hand over to the transplant people so they can run there battery of tests. The doctors had tried to get the blood yesterday from a vein, but after about 7 pokes gave up. Today they applied some freezing and hit a bigger vein, guided by an ultrasound, and were able to get everything they needed in one shot.     
During the afternoon rounds today we had a discussion at length with the surgeon doctor Gandhi. The team still aren't happy with Miles over all performance, his feeding is somewhat lacklustre, and his stats are not as good as they would like. The bottom line is Miles needs to stabilize quickly, or the doctors will intervene. Right now, "intervening" would mean sending Miles, Sam and I to Toronto to have whats called a "Hybrid Procedure" performed. During the hybrid a stent would be placed in Miles heart, and rubber bands around each pulmonary artery in an effort to better regulate the flow of blood in his body. Unfortunately its Toronto or bust on this one. The procedure involves a major surgery and a catheterization at the same time, and Toronto is the only one in Canada doing anything like it. It isn't a fix for Miles, just an effort to buy him more time. In our doctors words, "we aren't really close to needing the hybrid, but we're not that far away either". Miles condition over the next couple days will likely determine if were heading east or not. If we were to go to Toronto, the plan would be to have the procedure done, and as soon as Miles was stable enough to do so, move him back to Vancouver to await a heart.     
Days all seem like one lately. We try not to watch the clock. We try to ignore the vital monitors. All we can do right now is be parents, and parents will worry as we always do. Thank you for all the love and support, we will need it all the more to get us through the days ahead.
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[Image: babymiles]

babymiles

Kelowna, Canada

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  1. Updated posted by babymiles On Sep 20, 2013

    September 14, 2013

    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 t...

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  2. Updated posted by babymiles On Sep 11, 2013

    September 8, 2013

    It's been a busy week of ups and downs for Miles. As of last thursday Miles was 8 weeks old. His weight is up to 3.245 Kg, and in our eyes he is becoming a big boy. He even seems borderline plump, although thats all in perspective. Miles "plump" is still small compared to most babies his age, but its a huge improvement from continually losing weight. Vomiting continued to be an issue this week, so on Friday the team decided to change out his NG tube for an NJ tube. The NJ tube passes through Miles stomach and goes directly into his Jejunum (upper part of the digestive tract). By using the NJ tube there shouldn't be any food in his stomach to be thrown up. ...

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  3. Updated posted by babymiles On Aug 28, 2013

    August 27, 2013

    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. ...

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