Caring for Baby Miles

Update posted by babymiles On Sep 20, 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 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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Update posted by babymiles On Sep 11, 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. Trying to get the tube in was an exhausting experience involving a failed attempt and 3 trips to radiology that consumed most of the da...y on friday. Miles was exhausted by the end of it all, and so was our poor nurse after not getting a break all day. The new set up means that Miles is now on continuous feeds, and at least so far, it seems to be helping things. Noah arrived on friday and has been helping as only a 2.5 year old big brother can. Sam has been able to let Miles breastfeed again now that his feeds are being strictly controlled. He's only allowed to try for about 5 minutes at a time, but it's nice to see him doing something normal. Our plans with Miles are always fluid at best. The doctors say that the most recent ECGs and echos show little change in function, but the fact of the matter is that Miles heart is getting worse, and has a limit on how long it can hold on. They remind us that Miles is in a constant battle, but that he has also shown how strong he is. On wednesday miles will be 2 months old. He needs a miracle. Please pray.See More
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Update posted by babymiles On Aug 28, 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. 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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Update posted by babymiles On Aug 28, 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. 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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Update posted by babymiles On Aug 28, 2013
Yesterday was Miles 6 week birthday. Every week our little man proves once again that he is a fighter. Its nice when the docs come for rounds and don't even say anything medical about Miles. It means he's holding his own. It seems that the new main concern for the docs has been getting Sam and I out of the hospital before we lose our minds. I think we are finding it difficult to answer when people ask "how we are doing". More often than not we don't really know how we are doing. Whats the baseline we are supposed to be compared to? Miles condition remains the same. He's still listed at the same status on the transplant list, and our only course of action continues to be waiting. He had a period of about an hour and a half this morning where he sat in his bed, perfectly content, wide awake and just surveying the room. It's in those moments it can be so hard to believe anything is wrong with him. These days are blessed, we pray it all changes s...oon. We had a few nice visits today. One with another heart transplant family (Carmen Carriere ), another with auntie and also with our friends Jesh Tse and  Tammy Tubs for dinner. It was the first time Sam and I have been out together for weeks. It was great.
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Update posted by babymiles On Aug 28, 2013
Today was a good day. Miles was his normal happy self today. Last night however he was a bit of a grump. Also last night he had a few heart rate decelerations, and was unsettled enough that the nurses called the cardiologist. Fun fact about BCCH, there are always cardiologist fellows sleeping here over night. So no matter what obscene hour of the night it may be, a frizzy haired doctor is only minutes away. The doctor wasn't overly concerned though, and there wasn't much they could do. He was just being a fussy baby I suppose. Sam and I have had some nice visits the past few days. We've seen all sorts of friends from near and far including Kirstin Grant,Michelle Spletzer Van Dolder and Stephen VanDolder, Laurie McNaught and Jenna Rae McNaught, and today Elaine Yong and her wonderful family . I even had a nice surprise talk with Brennan Garrecht who popped by at Nanny and Pas house and played with Noah. It's so nice seeing friends, and even jus...t talking to them to break up what has become a routine of long days spent in the hospital. A big thanks tonight to the Bears football team at MBSS in west kelowna. The young men on that team, along with their families took it upon themselves to help raise funds to support our family. You're another bunch of heroes Miles will one day get to hear about. It's so overwhelming, to be propped up by people in our community, and even strangers from our online community. I don't know what our family ever did to deserve so much love. Our lives will be spent passing it on. At Miles 8pm feed tonight I had a moment. Sam has been in bed since 7pm, and I hope somehow she can get some sleep. Miles has had as good a day as we can ask for all things considered, and when he was sitting in my lap tonight, being burped I closed my eyes. I could almost imagine for an instant that we were at home, and that for a few quiet seconds, I was in my own living room, with my family. The quiet never lasts long, and after a few seconds somewhere an alarm started complaining for attention and I was brought back to reality. We miss "normal life" so much. We miss home and we miss all of you. Please pray for our family, for Sam that she would have strength, for Noah that he would be resilient and protected, for Miles that he can get his heart and know health, and for me, patience. Thanks for the support, we would be lost without it.See More
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Update posted by babymiles On Aug 28, 2013
I almost forgot to add that Miles also had his weigh in today. Last Monday he weighed 2.78kg and stayed the same on thursday. Since Thursday he has gained, weighing in at 2.89kg's! It doesn't sound like much but for Miles every little bit counts!
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Update posted by babymiles On Aug 28, 2013
So today was a busy day. This morning Miles had an echo, blood work, and a dressing change on his PICC line. We never got an hard numbers back from the echo but the tech said it looked good. His ductus and septum are open! The stent is holding and the PGE is doing its job to keep the ductus open. The tech we had today was telling us in 35 years or doing this he has never seen a case like Miles. HLHS with a single coronary artery and atrial stent.  He is one of a kind. Getting blood has proved very difficult in the past and continues to be a point of frustration for us. Miles veins are so small that every time they poke him and try to draw blood the vein collapses and typically the small amount they are able to get clots before they can remove it from the tubing. Some tests are able to be drawn from a heel poke but Miles transplant blood work has to be from a vein or artery. They weren't able to get it today and will have to try again another ...time. We are advocating for a doctor or anesthesiologist to come and try next, it is really frustrating to watch your child be poked and prodded for the same outcome. Miles' PICC line looks good. No sign of skin irritation or infection and the line looks to be in a good position. Right now Miles is doing fairly well. He has continued to tolerate his feeds with minimal vomits but still tires very easily. His sweating is getting a little worse. A sign his body and heart are having to work really hard even at rest. This afternoon we were blessed to visit with a great friend! Kirstin Grant came to see Miles bearing gifts and food. Thank you so much for all your support and advocating in the media for Miles and other families facing heart transplant now and in the future. It feels so refreshing to see people from home, to feel like we arn't so far away from our old life. Thank you to everyone for your continued words of encouragement and thoughts and prayers. This week Noah is home with his grandparents. He plans to enjoy some playdates and pool time and head back down to see us on Friday. We are so proud of our little boy all growing up. Noah has started to talk up a storm and play with such imagination. He is growing like a weed. His arms and legs and hands are big and thick. Even his head looks considerably larger than two months ago when we left home to be down here. It brings such joy to our hearts to see our one son growing and learning and changing from a baby into a wonderful little boy. We are just hoping and praying we will see Miles do all of the same things his brother is doing. We pray for our family to be together at home enjoying the simple things like laying in bed together in the morning, cuddling on the couch, playing in the yard and going for family walks in the woods. Please pray with us for all of these things.

 

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Update posted by babymiles On Aug 28, 2013

Miles has had a good weekend. The last 48ish hours have been better then most of the past week. Little Mr. Miles has been able to keep almost all his food down. Tomorrow is weigh in and we will hopefully see an increase. We spent most the weekend visiting with family and getting used to our new room. One exciting development.... our new chair. We picked up a Poang from ikea yesterday. Most days either Sam or I will spend around 8 hours sitting in the chair with Miles, so it has to be something better than hospital standard. Tuesday will mark 5 weeks since Miles was listed for heart transplant. We want to remind all our friends and family, to please please please sign up yourselves and your family to be organ donors. You can help save someones life. Today Miles and Noah had cuddles for the very first time. Until now Noah has only been able to reach into the crib and pat Miles head. It took about 30 seconds for Noah to become a "protective" big brother, and he wouldn't even let me or mom take Miles away, it was pretty darn precious. Earlier this week, a few of our favourite nurses helped us get Miles footprints on paper. They also took moulds of his feet and made some pretty neat casts. We've been trying to have fun with our boy, whenever the days allow for it.  We are hoping and Praying that this will be the week Miles can start over. Thanks for keeping our family in your prayers.

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Update posted by babymiles On Jul 30, 2013
2 days have passed with Miles remaining mostly unchanged. One thing that is different is feeding time. Miles had a feeding tube, or an NG tube to be specific, placed in his nose and down his throat yesterday. The problem is that little Mr. Miles is still at his birth weight, at nearly 3 weeks old. So the protocol now is to let him try to bottle feed for about 15 minutes, and then top him up through a pump connected to his NG tube. On his own, Miles gets too tired too fast while eating, so hopefully the added calories through the NG tube will help him bulk up before his big day. His food still consists of breast milk only, but his intake is being closely monitored, and a formula could be added to the breast milk if required. There is talk once again of our family being moved up to the cardiac ward, though the team seems to be split on wether or not it's a good idea. We likely wont know that the move is a certainty until we are rolling down the hall, just the way it goes around here. The past couple days have been par for the course, a battery of x-rays, ECGs, blood tests and echocardiograms. Miles main surgeon said this morning that although he wouldn't call Miles "stable", he would say he hasn't declined significantly over the weekend. We had some nice visits from old and new friends alike, family, and some of our nurses came to say hello when they weren't even on shift. Miles is so well loved. We rest in the shadow of Gods wings, waiting for a miracle.
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Maddox, Noah & Tanya

Backed with $50.00 On Dec 02, 2013

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To our littlest bear praying for a big win for you!!

BEARS MAMA

Backed On Sep 20, 2013 Amount Hidden

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We have been following your journey since the start and are sending positive thoughts your way from Penticton.

Karen & Scott Finlayson

Backed with $100.00 On Sep 15, 2013

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Dennis Grant

Backed with $200.00 On Aug 28, 2013

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Keep fighting Miles! Our thoughts and prayers are with you and your family.

Guest

Backed with $375.00 On Aug 26, 2013

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Guest

Backed On Aug 22, 2013 Amount Hidden

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Stay strong. My thoughts and prayers are with you, your family and baby Miles

Jessica & Christian

Backed with $50.00 On Aug 20, 2013

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Faubert Family, kelowna BC

Backed with $28.90 On Aug 14, 2013

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<3

Guest

Backed On Aug 09, 2013 Amount Hidden

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Just hoping that baby Miles is doing good and there is good news in the very near future!!!!

NoahNormandale

Posted On Aug 02, 2013

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