Here is Micah's 3rd birthday montage. The first song is his favorite song, so I had to use it! The lyrics to all three songs are below if you want to read them. Enjoy!
Blue October
Jump Rope
Remember how you used to say
You couldn't wait till tomorrow for a brand new day
no fuss when ya had to ride the bus
You just add a little blush
To paralyze your school crush
Now you're older and the weight is on your shoulder
Make the world a little colder
No more hidin in the old day
Be strong
Don't you give up hope
It will get hard
Life's like a jump rope
Up down
Up down
Up down
Up down yeah
Cause it will get hard
Remember life's like a jump rope
Up down
Up down
Up down
Up down yeah
It will get hard
Cause it will get hard
There'll be a bump and there will be a bruise
There'll be alarms and there will be a snooze
There'll be a path that you will have to choose
There'll be a win and there will be a lose and
You gotta hold your head up high and
Watch all the negative go by
Don't ever be ashamed to cry
You go ahead
Cause life's like a jump rope
Up down
Up down
Up down
Up down yeah
It will get hard
Remember life's like a jump rope
Up down
Up down
Up down
Up down yeah
It will get hard
Come on
I want to tell you that everything will be okay
That everything will eventually turn itself to gold
So keep pushing through it all
Don't follow, lead the way
Don't lose yourself or your hope
Cause life's like a jump rope
Up down
Up down
Up down
Up down yeah
You stomp your feet so hard you make it pound
Raise the bottom to the top
And now we're never coming down
Up down stomp your feet spin around
Clap hands to the rhythm
Then you slip down
You stomp your feet so hard you make it pound
Raise the bottom to the top
And now we're never coming down
Up down
Up down
Up down
Up down yeah
It will get hard
Remember life's like a jump rope
Up down
Up down
Up down
Up down yeah
It will get hard
Cause it will get hard
Up down
Up down
Up down
Up down yeah
Life's like a jump rope
Up down
Up down
Up down
Up down yeah
Whoa oh
Cause life's like a jump rope
Rascal Flatts
My Wish
I hope the days come easy and the moments pass slow
And each road leads you where you want to go
And if you’re faced with the choice and you have to choose
I hope you choose the one that means the most to you
And if one door opens to another door closed
I hope you keep on walkin’ ‘til you find the window
If it’s cold outside, show the world the warmth of your smile
But more than anything, more than anything
Chorus
My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold
And while you’re out there gettin’ where you’re gettin’ to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish
I hope you never look back but you never forget
All the ones who love you
And the place you left
I hope you always forgive and you never regret
And you help somebody every chance you get
Oh, you find God’s grace in every mistake
And always give more than you take
But more than anything, yeah more than anything
Chorus x2
My wish for you
Is that this life becomes all that you want it to
Your dreams stay big, your worries stay small
You never need to carry more than you can hold
And while you’re out there gettin’ where you’re gettin’ to
I hope you know somebody loves you
And wants the same things too
Yeah, this is my wish
This is my wish
I hope you know somebody loves you
May all your dreams stay big
Blue October
Graceful Dancing
Describe the Pain
It Choked Your Reality
It’s All in Your Mind
She Said It
Instead You Go Graceful Dancing
You Close the Door
On the War I Started Last Halloween
I’m Gonna Be Fine Again
You Got to Keep Graceful Dancing
Oh
Here We Are
And You’re a Super Star On Your Own
And I’m Looking Over Your Shoulder
Getting Older and God Only Knows
That Here We Are
And You’re a Super Star On Your Own
Now Here We Are
Your Sunset Reigns
Like a Bullet Hole
Trees Only Seems For Hanging
A Moon Is a Target Range
And Rivers Seem Only For Drowning
You Fall Away and Then You Starve
To Finish Your Painting
Well Its Gonna Take Time My Friends
You Have to Keep Graceful Dancing
Oh
Here We Are
And You’re a Super Star On Your Own
And I’m Looking Over Your Shoulder Getting Older
And God Only Knows That Here We Are
And You’re a Super Star On Your Own
Now Here We Are
Who Knows
That Here We Are
And You’re a Super Star On Your Own
And I’m Looking Over Your Shoulder Getting Older
And God Only Knows
That Here We Are
And You’re a Super Star On Your Own
Now Here We Are
Wednesday, July 15, 2009
Monday, May 11, 2009
Dance Rehearsal and Recital May 8-9
Here are the pictures from the dance recital and rehearsal. Leah and Micah both performed...and MICAH is wearing black pants, not tights to any of you who are wondering. And I do not want any lip about a boy in dance, he did great and he still likes girls!!!!!!!!!!
Enjoy!!!
Enjoy!!!
St. Louis May 1st weekend
Here are the pictures from our trip to St. Louis. If you look close, you may actually find a shot of Samantha in there and a few of Jonathan too :) Enjoy! I HAD to use the kids favorite song "So What" by Pink!
Saturday, February 14, 2009
ANNOUNCEMENT!!!
***Jonathan has asked that I make this blog private, so I will be switching to the private setting this week. If you would like to be able to see our pictures, please send me an email at smajor711@gmail.com with the subject of blogger account and give me your email address so I can add you. You can also just leave me a comment on this posting with the information and I will add you that way as well.***
Hugs,
Samantha
Hugs,
Samantha
7 WAYS YOU CAN HELP!
7 WAYS YOU CAN HELP!
1. Donate Blood - Most children with CHD require at least one blood transfusion. It is important that they have blood! Micah required tons of blood from donors. An infant does not have enough blood in their body at birth to be able to be put on the heart-lung machine for open heart surgery, so without donors, there would be no surgery, and Micah would not be here today. He also required a number of blood and platelet donations after his surgeries. You can donate blood all day today at Medical City for our support group!! You can also contact the American Red Cross or Carter Blood Care to set up appointments for a more convenient time. But please, please, please, if you are able, donate blood.
2. Donate Money - I know with the economy the way it is right now that this is hard. Trust me - we struggle just like everyone else. We are becoming a nonprofit very soon....you can donate straight to Micah's group!! www.heartnhands.org
Another great organization is the Chloe Duyck Memorial Fund...I am friends with Michelle Duyck, Chloe's mom, who started the fund after they lost Sweet Chloe to Hypoplastic Left Heart Syndrome in 2004. Her website is http://www.chloeduyckmemorial.com/
There are a few other nonprofit congenital heart funds that are set up around the country that give their funds directly to congenital heart research, so if you need some more links to look at, feel free to ask me :)
3. Support a group in your local area. See if there is a support group around, see if you can help them out. We need more than just money. We need volunteers!
4. Become an organ donor - and make sure that your loved ones know that you want to donate your organs.
5. Find a cause....and work for them. Sell some lemonade this summer. Donate to an organization or to a family that needs some extra help.
6. Educate! Share your knowledge. There are so many heart families out there. People that I never knew had heart kids. You never know when you might be talking to someone like that.
7. Support. Support families that are walking down this road. It is a tough path. Be there for them. Offer a shoulder to cry on...a meal....babysitting...whatever you can do to provide a little support for a special family.
Happy Heart Day!! This day is so much more to our family than chocolates and flowers now, it is about raising the awareness to everyone that February 14th is a day to celebrate the actual heart and finding a way to help these babies born with broken hearts.
Lots of Love!
Samantha
1. Donate Blood - Most children with CHD require at least one blood transfusion. It is important that they have blood! Micah required tons of blood from donors. An infant does not have enough blood in their body at birth to be able to be put on the heart-lung machine for open heart surgery, so without donors, there would be no surgery, and Micah would not be here today. He also required a number of blood and platelet donations after his surgeries. You can donate blood all day today at Medical City for our support group!! You can also contact the American Red Cross or Carter Blood Care to set up appointments for a more convenient time. But please, please, please, if you are able, donate blood.
2. Donate Money - I know with the economy the way it is right now that this is hard. Trust me - we struggle just like everyone else. We are becoming a nonprofit very soon....you can donate straight to Micah's group!! www.heartnhands.org
Another great organization is the Chloe Duyck Memorial Fund...I am friends with Michelle Duyck, Chloe's mom, who started the fund after they lost Sweet Chloe to Hypoplastic Left Heart Syndrome in 2004. Her website is http://www.chloeduyckmemorial.com/
There are a few other nonprofit congenital heart funds that are set up around the country that give their funds directly to congenital heart research, so if you need some more links to look at, feel free to ask me :)
3. Support a group in your local area. See if there is a support group around, see if you can help them out. We need more than just money. We need volunteers!
4. Become an organ donor - and make sure that your loved ones know that you want to donate your organs.
5. Find a cause....and work for them. Sell some lemonade this summer. Donate to an organization or to a family that needs some extra help.
6. Educate! Share your knowledge. There are so many heart families out there. People that I never knew had heart kids. You never know when you might be talking to someone like that.
7. Support. Support families that are walking down this road. It is a tough path. Be there for them. Offer a shoulder to cry on...a meal....babysitting...whatever you can do to provide a little support for a special family.
Happy Heart Day!! This day is so much more to our family than chocolates and flowers now, it is about raising the awareness to everyone that February 14th is a day to celebrate the actual heart and finding a way to help these babies born with broken hearts.
Lots of Love!
Samantha
Friday, February 13, 2009
Thursday, February 12, 2009
CHD Fact Sheet
More CHD Awareness!
Congenital Heart Defects in Children Fact Sheet
What is a congenital heart defect?
Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
Is all heart disease in children congenital?
No, but most is. These defects are usually but not always diagnosed early in life. Rarely, heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as "arrhythmias".
Who is at risk to have a child with a congenital heart defect?
Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
How many people in the United States have a congenital heart defect?
About 1 million Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
Why do congenital heart defects occur?
Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
How can I tell if my baby or child has a congenital heart defect?
Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
How serious is the problem?
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the United States due to congenital heart disease. Charges for care exceed $2.2 billion for inpatient surgery alone.
Are things improving?
Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30 percent and today it is around 5 percent.
How well can people with congenital heart defects function?
Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives. For more complex lesions, limitations are common. Some children with congenital heart disease have developmental delay or other learning difficulties.
What is the social/financial impact of congenital heart defects?
Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.
What is the impact of congenital heart disease on families?
The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping.
Where can I get additional information?
You can get additional information from the American Heart Association. You can reach them by calling 1-800-AHA-USA1 (1-800-242-8721) or via the Internet at www.americanheart.org/children.
Heart Hugs,
Samantha
Congenital Heart Defects in Children Fact Sheet
What is a congenital heart defect?
Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. Defects range in severity from simple problems, such as "holes" between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.
Is all heart disease in children congenital?
No, but most is. These defects are usually but not always diagnosed early in life. Rarely, heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as "arrhythmias".
Who is at risk to have a child with a congenital heart defect?
Anyone can have a child with a congenital heart defect. Out of 1000 births, 8 babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.
How many people in the United States have a congenital heart defect?
About 1 million Americans have a congenital heart defect. Approximately 35,000 babies are born with a defect each year.
Why do congenital heart defects occur?
Most of the time we do not know. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects.
How can I tell if my baby or child has a congenital heart defect?
Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.
How serious is the problem?
Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. Over 91,000 life years are lost each year in the United States due to congenital heart disease. Charges for care exceed $2.2 billion for inpatient surgery alone.
Are things improving?
Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30 percent and today it is around 5 percent.
How well can people with congenital heart defects function?
Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives. For more complex lesions, limitations are common. Some children with congenital heart disease have developmental delay or other learning difficulties.
What is the social/financial impact of congenital heart defects?
Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.
What is the impact of congenital heart disease on families?
The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping.
Where can I get additional information?
You can get additional information from the American Heart Association. You can reach them by calling 1-800-AHA-USA1 (1-800-242-8721) or via the Internet at www.americanheart.org/children.
Heart Hugs,
Samantha
Wednesday, February 11, 2009
7 Ways CHD has Changed my Life
More CHD Awareness Week blogging.
1) I have a small pharmacy in my kitchen. Seriously, I have two huge bins filled with different medications, one kitchen counter has all the current medications that need to be taken, plus an entire box filled with syringes. I also have about 8 boxes filled with Pediasure, feeding pump supplies and a handy dandy medical pole :)
2) I know a bunch of doctors really well. I have never been one who really knows any of our doctors...now I do. We could be out and if one of our doctors saw us, they would actually know us by name instead of "that face looks familiar...but"
3) I have become a member of a really great congenital heart defect support group. I have not been as active as before, but I am getting back with it. It gives me a great sense of pride to be a part of this group and help others.
4) I have started my own business (Bundles of Snuggles) so that I can make a little bit of money to stay home.
5) I have attended three babies funerals in person and virtually mourned the loss of too many other babies due to CHD's. They were the most awful things I have ever been to or experienced. No parent should have to lose their child...ever.
6) I worry even more than I ever did before...and that is hard to top :) I have always been a worrier, and since Micah's diagnosis, I worry more than I should, but in a way, it keeps me a bit more sane...I know that sounds crazy, but if I let my guard down, I seem to fall apart a bit more...so I prefer to be hyper vigilant about his health.
7) I have learned how to be a DEMANDING person with insurance companies. I have learned how to be the biggest advocate for Micah's health and I have MADE the insurance company cave in at times and gotten them to authorize medications that are "not medically necessary" or too expensive according to THEM!
***And an extra since I came up with more than 7 :) ****
8) I have a much stronger faith in G-d. I have struggled with this since my grandfather passed away at an early age, and I really struggled through it when Micah was first diagnosed. I am not overly religious, but I have learned that I do have a faith that G-d does have a plan and though I may not be real happy about the path I have been lead down, it was chosen for me for some reason...I have yet to figure out WHAT that reason is, but I know that there is a reason that I have been chosen to care for Micah.
1) I have a small pharmacy in my kitchen. Seriously, I have two huge bins filled with different medications, one kitchen counter has all the current medications that need to be taken, plus an entire box filled with syringes. I also have about 8 boxes filled with Pediasure, feeding pump supplies and a handy dandy medical pole :)
2) I know a bunch of doctors really well. I have never been one who really knows any of our doctors...now I do. We could be out and if one of our doctors saw us, they would actually know us by name instead of "that face looks familiar...but"
3) I have become a member of a really great congenital heart defect support group. I have not been as active as before, but I am getting back with it. It gives me a great sense of pride to be a part of this group and help others.
4) I have started my own business (Bundles of Snuggles) so that I can make a little bit of money to stay home.
5) I have attended three babies funerals in person and virtually mourned the loss of too many other babies due to CHD's. They were the most awful things I have ever been to or experienced. No parent should have to lose their child...ever.
6) I worry even more than I ever did before...and that is hard to top :) I have always been a worrier, and since Micah's diagnosis, I worry more than I should, but in a way, it keeps me a bit more sane...I know that sounds crazy, but if I let my guard down, I seem to fall apart a bit more...so I prefer to be hyper vigilant about his health.
7) I have learned how to be a DEMANDING person with insurance companies. I have learned how to be the biggest advocate for Micah's health and I have MADE the insurance company cave in at times and gotten them to authorize medications that are "not medically necessary" or too expensive according to THEM!
***And an extra since I came up with more than 7 :) ****
8) I have a much stronger faith in G-d. I have struggled with this since my grandfather passed away at an early age, and I really struggled through it when Micah was first diagnosed. I am not overly religious, but I have learned that I do have a faith that G-d does have a plan and though I may not be real happy about the path I have been lead down, it was chosen for me for some reason...I have yet to figure out WHAT that reason is, but I know that there is a reason that I have been chosen to care for Micah.
Tuesday, February 10, 2009
7 Things I have Learned Since Micah's Broken Heart
More CHD Awareness Week!!!
1) Life is more fragile than I ever imagined it could be.
2) Babies/Children are the strongest things in the universe. I could not imagine going through all that Micah has and yet, he wakes up EVERY morning with a smile on his face and he NEVER stops. He knows how great it is to be alive.
3) All about the heart...I really only got that the heart had four chambers before...now I could probably ace an exam on all the functions of the heart, the anatomy as well as all the different heart defects and medications that are used.
4) That there are such things as a compounding pharmacy! I had never known that there are special pharmacies out there to make medicines for kids who have to take grown up medications in smaller doses that the pharmaceutical companies do not make.
5) That congenital heart defects are America's #1 birth defect....and the #1 cause of birth-defect related deaths. I did not learn this until Micah's heart was broken...there was no need for me to know...however, I am making it my goal to let everyone know this...it is something that we should all know.
6) That no matter how much I want to, I cannot make Micah all better just by hugs and kisses. I HAD to rely on and trust strangers to keep him alive and that is by far one of the most difficult things I have ever had to do. I do not trust easily, there are very, very few that I trust in my life, and then I found out about Micah's heart and all I could do was trust in others...there was no way that I was going to be able to fix him on my own. That is a horrible feeling to have, not being able to do the most basic, human thing that a mother is suppose to do...protect her child.
7) I have learned all about feeding issues. Not the normal kind of my kid won't eat vegetables...the kind where your child at one year of age is actually diagnosed with anorexia. The kind that you watch your child starving himself and there is not a single thing in the world that you can do to help him. The kind of feeding issues that kept me nursing him until he was 23 months old just so he got some kind of nutrition. It is heartbreaking to watch a child who was once eating so well, just turn it off overnight and then not turn back. I have learned all about feeding tubes/buttons, watched my baby go for another surgery to save his life again (though not in the same manner as his heart) and then finally start to thrive again.
Most of these things are not the happy things that we get to learn as parents, but they are things that I have learned since Micah's diagnosis came on March 30, 2006. I never imagined all that I could learn just from hearing that my baby was going to be born with a broken heart.
1) Life is more fragile than I ever imagined it could be.
2) Babies/Children are the strongest things in the universe. I could not imagine going through all that Micah has and yet, he wakes up EVERY morning with a smile on his face and he NEVER stops. He knows how great it is to be alive.
3) All about the heart...I really only got that the heart had four chambers before...now I could probably ace an exam on all the functions of the heart, the anatomy as well as all the different heart defects and medications that are used.
4) That there are such things as a compounding pharmacy! I had never known that there are special pharmacies out there to make medicines for kids who have to take grown up medications in smaller doses that the pharmaceutical companies do not make.
5) That congenital heart defects are America's #1 birth defect....and the #1 cause of birth-defect related deaths. I did not learn this until Micah's heart was broken...there was no need for me to know...however, I am making it my goal to let everyone know this...it is something that we should all know.
6) That no matter how much I want to, I cannot make Micah all better just by hugs and kisses. I HAD to rely on and trust strangers to keep him alive and that is by far one of the most difficult things I have ever had to do. I do not trust easily, there are very, very few that I trust in my life, and then I found out about Micah's heart and all I could do was trust in others...there was no way that I was going to be able to fix him on my own. That is a horrible feeling to have, not being able to do the most basic, human thing that a mother is suppose to do...protect her child.
7) I have learned all about feeding issues. Not the normal kind of my kid won't eat vegetables...the kind where your child at one year of age is actually diagnosed with anorexia. The kind that you watch your child starving himself and there is not a single thing in the world that you can do to help him. The kind of feeding issues that kept me nursing him until he was 23 months old just so he got some kind of nutrition. It is heartbreaking to watch a child who was once eating so well, just turn it off overnight and then not turn back. I have learned all about feeding tubes/buttons, watched my baby go for another surgery to save his life again (though not in the same manner as his heart) and then finally start to thrive again.
Most of these things are not the happy things that we get to learn as parents, but they are things that I have learned since Micah's diagnosis came on March 30, 2006. I never imagined all that I could learn just from hearing that my baby was going to be born with a broken heart.
Monday, February 9, 2009
7 Reasons I am Happy to be a Mom to a CHD Kiddo
Many would say that there is NOTHING good about having a child with a heart defect, and in most ways, I agree...however, there are at least 7 reasons that I am happy that I have been chosen to be one.
1) I have Micah, here in my life. He survived and will continue to survive.
2) I have met some incredible families who have been through so much and continue to fight and conquer. I have made friends with women that I have never met, yet I feel I know better than some that I have known in person for years and years.
3) I have learned a ton about the heart, medications, feedings and so much else in the medical field that I have an honorary medical degree :)
4) I have found a new sense of faith. I am not highly religious, but I feel a presence of strength that was not there for me before Micah.
5) I have met some of the most incredible doctors and medical professionals in the world and I know that they are taking extraordinary care of my little guy.
6)I get to help others. That is my goal in life. This is what I have studied in my professional life to do and this is what I get to do with a whole new realm of understanding. I get to work with the heart support group and help other families who are going down this road and it feels good to show them a strong little boy who is doing well...even after all the hurdles he has had to jump.
7) I understand what it is like to others going down this road. It is not something that everyone gets an opportunity to do...nor do I ever want or wish for anyone to understand at this level. But I understand what it feels like to worry (within good reason) that your child will not get the opportunity to grow up and do all the things that others can do, or even wake up in the morning. I understand the fear that a parent feels when they are having their child wheeled away for a surgery that they may not come out of, and I understand that we worry more than parents of "healthy" kids do. I know this, because I have been blessed to have both kinds of kids in my life.
1) I have Micah, here in my life. He survived and will continue to survive.
2) I have met some incredible families who have been through so much and continue to fight and conquer. I have made friends with women that I have never met, yet I feel I know better than some that I have known in person for years and years.
3) I have learned a ton about the heart, medications, feedings and so much else in the medical field that I have an honorary medical degree :)
4) I have found a new sense of faith. I am not highly religious, but I feel a presence of strength that was not there for me before Micah.
5) I have met some of the most incredible doctors and medical professionals in the world and I know that they are taking extraordinary care of my little guy.
6)I get to help others. That is my goal in life. This is what I have studied in my professional life to do and this is what I get to do with a whole new realm of understanding. I get to work with the heart support group and help other families who are going down this road and it feels good to show them a strong little boy who is doing well...even after all the hurdles he has had to jump.
7) I understand what it is like to others going down this road. It is not something that everyone gets an opportunity to do...nor do I ever want or wish for anyone to understand at this level. But I understand what it feels like to worry (within good reason) that your child will not get the opportunity to grow up and do all the things that others can do, or even wake up in the morning. I understand the fear that a parent feels when they are having their child wheeled away for a surgery that they may not come out of, and I understand that we worry more than parents of "healthy" kids do. I know this, because I have been blessed to have both kinds of kids in my life.
Sunday, February 8, 2009
7 People Who have helped my little man...in honor of CHD Awareness Week (I forgot to start this yesterday)
In honor of CHD Awareness Week, I am going to post about 7 people who have made a huge difference in Micah's survival.
1) Dr. Steven MacDonald: Dr. MacDonald was my OB/GYN who I had just switched to and then got pregnant very quickly after meeting him. Dr. MacDonald did my 19 week "sex check" sonogram and noticed that the heart was not getting a good picture...he DID NOT tell me to worry, nor did he even mention that much about it...he just told us we were having a boy and that we got to see him again in 4 weeks. Dr. MacDonald looks at parts of the heart that according to our first echo tech, most ob's do not bother checking for...since he has his sonographer's go above and beyond the basic check, we were able to find out at 23 weeks that Micah's heart was broken, and start researching what we needed to do.
2) Dr. Charles Goebel: Not only did Dr. Goebel listen to me cry and cry those first few days of finding out about Micah, he gave me loads and loads of information and direction on what to do. He helped me decide where I would deliver, what Micah would need in terms of surgery (even with the cardiologist disagreeing) and he personally caught Micah's heart failure at least 3 times BEFORE his old cardiologist did. Dr. Goebel has taken amazing care of all three of my kids for over 6 years now and he truly is an amazing man that I am proud to have caring for my kids. He is just amazing....AMAZING!
3) Dr. Eric Mendeloff: What can I say about this man except for he is the reason my Micah is alive and well today. I cannot even begin to imagine what it must feel like to go into work everyday holding someone's baby in your hands. To have that enormous amount of stress in your life, and yet carry yourself in and not show fear or concern to the parents. He has this way about him that actually can calm you down. I had never expected to one day be faced with life and death for one of my children, however, knowing Dr. Mendeloff made handing Micah over for surgery just a little bit easier...not that it was easy...no, that is not an option, but he can calm the room. He is simply a remarkable man, I just cannot express enough in words how much he has helped me and this family.
4) Kathy Drescher, RN: Kathy is Dr. Mendeloff's nurse practitioner. Kathy is the person who met us first and told us what was going to happen with Micah. She came to my hospital room every single day before that surgery and spent as long as we needed her answering questions and listening to our worries. She was the amazing person who called us every hour during Micah's surgery to ease our fears and let us know what was happening. She is the woman who checked on Micah every single day while we were in the ICU and pediatric unit. Micah knows her and loves her and I know that he knows how special she truly is.
5) Dr. Todd Ruk: Dr. Ruk was kind enough to take my case on very late in my pregnancy. Since I wanted to deliver at Medical City so I could be with Micah, my OB was not able to deliver him. So, Dr. Ruk took me on around 28 weeks and did something incredibly special for me. I wanted to deliver Micah on the 18th...it is a lucky Jewish number...that was a Tuesday...Dr. Ruk does not work on Tuesdays, but he made a special exception for me that day because "I needed all the luck I could get". He was so caring and kind to us all, and I am very lucky that he was the doctor who cared for me during those last months and my delivery. Oh, one other bit of interesting information on him...when I first spoke to him when he took my case, he told me that he had had open heart surgery when he was 4 years old...he wanted me to see that he turned out okay...I never asked what his heart trouble was, but after Micah was born and I saw him for my 2 week follow up, I asked him...he told me that he had the same kind of heart as Micah's...only much less severe. How strange a world that I should happen to be directed to an OB who had Micah's heart...what a true act of G-d.
6) Dr. Darrell Hermann: Dr. Hermann did not come into our lives until last year, but I feel that without him, Micah could have been lost. Micah was not eating and failing to thrive so much, so Dr. Hermann placed Micah's g-button. Since Micah has received his button, he is doing so much better and I know that it is because of the nutrition he receives now. Dr. Hermann is the kind of doctor who does not forget his patients and takes great care of his patients. He was so kind and considerate to Jonathan and I, and I will never forget him and his sense of calm when he took Micah back to surgery.
7) All the other doctors and nurses who have been there along the way: All the NICU doctors and nurses, the amazing PICU nursing staff and doctors...one doctor in particular who had to be woken up at 3am one night to STOP Micah's heart because he was in a fatal rhythm, all the specialists who have cared for Micah (and the parents who were right there nervous and crazy). Just to list a few of them: Dr. Jack An, Dr. Rohn, Dr. So, Dr. Ewalt, Dr. Scheurle, Dr. Copenhaver, Dr, Berkowitz, Dr. Clapp (heart cath), Dr. Kort (heart cath), Dr. Albert, Dr. Rubin, I am sure there are more doctors I am forgetting and the nursing staffs of all the offices. I also thank Clarissa and Jackie for checking in on us during our hospital stays...you were amazing and the support was tremendous. You all have been amazing!!! Thank you.
8) I am NOT SURE HOW I FORGOT DR. WRIGHT so this will be 8 people!!! I guess I just have her so much in my thoughts that I forgot to talk about her! She is the amazing cardiologist who started to care for Micah at his 1 year mark...she has been nothing but FANTASTIC and wonderful to us. She has taken better care of Micah than most doctors would dream of doing. She has held my hand, called me, come to visit Micah when she did not have to and just been a dream come true to our family. She has checked out Noah and Leah and told me that they both have perfect hearts and she has listened to my every concern and worry and not minimized any of it. She trusts me and I trust her...she told me once that 50% of Micah belongs to her, and while I jokingly told her that she never had to carry him around and deliver him...I have to agree and maybe even disagree that she holds a great deal of stake in him. She is part of our family and we love and adore her!!!!
If you have a chance, please go to our heart support groups website: Heart-N-Hands at heartnhands.org and learn more about congenital heart defects/disease. There is so much that needs to be learned about it and yet there is so little being done.
Heart Hugs!
Samantha
1) Dr. Steven MacDonald: Dr. MacDonald was my OB/GYN who I had just switched to and then got pregnant very quickly after meeting him. Dr. MacDonald did my 19 week "sex check" sonogram and noticed that the heart was not getting a good picture...he DID NOT tell me to worry, nor did he even mention that much about it...he just told us we were having a boy and that we got to see him again in 4 weeks. Dr. MacDonald looks at parts of the heart that according to our first echo tech, most ob's do not bother checking for...since he has his sonographer's go above and beyond the basic check, we were able to find out at 23 weeks that Micah's heart was broken, and start researching what we needed to do.
2) Dr. Charles Goebel: Not only did Dr. Goebel listen to me cry and cry those first few days of finding out about Micah, he gave me loads and loads of information and direction on what to do. He helped me decide where I would deliver, what Micah would need in terms of surgery (even with the cardiologist disagreeing) and he personally caught Micah's heart failure at least 3 times BEFORE his old cardiologist did. Dr. Goebel has taken amazing care of all three of my kids for over 6 years now and he truly is an amazing man that I am proud to have caring for my kids. He is just amazing....AMAZING!
3) Dr. Eric Mendeloff: What can I say about this man except for he is the reason my Micah is alive and well today. I cannot even begin to imagine what it must feel like to go into work everyday holding someone's baby in your hands. To have that enormous amount of stress in your life, and yet carry yourself in and not show fear or concern to the parents. He has this way about him that actually can calm you down. I had never expected to one day be faced with life and death for one of my children, however, knowing Dr. Mendeloff made handing Micah over for surgery just a little bit easier...not that it was easy...no, that is not an option, but he can calm the room. He is simply a remarkable man, I just cannot express enough in words how much he has helped me and this family.
4) Kathy Drescher, RN: Kathy is Dr. Mendeloff's nurse practitioner. Kathy is the person who met us first and told us what was going to happen with Micah. She came to my hospital room every single day before that surgery and spent as long as we needed her answering questions and listening to our worries. She was the amazing person who called us every hour during Micah's surgery to ease our fears and let us know what was happening. She is the woman who checked on Micah every single day while we were in the ICU and pediatric unit. Micah knows her and loves her and I know that he knows how special she truly is.
5) Dr. Todd Ruk: Dr. Ruk was kind enough to take my case on very late in my pregnancy. Since I wanted to deliver at Medical City so I could be with Micah, my OB was not able to deliver him. So, Dr. Ruk took me on around 28 weeks and did something incredibly special for me. I wanted to deliver Micah on the 18th...it is a lucky Jewish number...that was a Tuesday...Dr. Ruk does not work on Tuesdays, but he made a special exception for me that day because "I needed all the luck I could get". He was so caring and kind to us all, and I am very lucky that he was the doctor who cared for me during those last months and my delivery. Oh, one other bit of interesting information on him...when I first spoke to him when he took my case, he told me that he had had open heart surgery when he was 4 years old...he wanted me to see that he turned out okay...I never asked what his heart trouble was, but after Micah was born and I saw him for my 2 week follow up, I asked him...he told me that he had the same kind of heart as Micah's...only much less severe. How strange a world that I should happen to be directed to an OB who had Micah's heart...what a true act of G-d.
6) Dr. Darrell Hermann: Dr. Hermann did not come into our lives until last year, but I feel that without him, Micah could have been lost. Micah was not eating and failing to thrive so much, so Dr. Hermann placed Micah's g-button. Since Micah has received his button, he is doing so much better and I know that it is because of the nutrition he receives now. Dr. Hermann is the kind of doctor who does not forget his patients and takes great care of his patients. He was so kind and considerate to Jonathan and I, and I will never forget him and his sense of calm when he took Micah back to surgery.
7) All the other doctors and nurses who have been there along the way: All the NICU doctors and nurses, the amazing PICU nursing staff and doctors...one doctor in particular who had to be woken up at 3am one night to STOP Micah's heart because he was in a fatal rhythm, all the specialists who have cared for Micah (and the parents who were right there nervous and crazy). Just to list a few of them: Dr. Jack An, Dr. Rohn, Dr. So, Dr. Ewalt, Dr. Scheurle, Dr. Copenhaver, Dr, Berkowitz, Dr. Clapp (heart cath), Dr. Kort (heart cath), Dr. Albert, Dr. Rubin, I am sure there are more doctors I am forgetting and the nursing staffs of all the offices. I also thank Clarissa and Jackie for checking in on us during our hospital stays...you were amazing and the support was tremendous. You all have been amazing!!! Thank you.
8) I am NOT SURE HOW I FORGOT DR. WRIGHT so this will be 8 people!!! I guess I just have her so much in my thoughts that I forgot to talk about her! She is the amazing cardiologist who started to care for Micah at his 1 year mark...she has been nothing but FANTASTIC and wonderful to us. She has taken better care of Micah than most doctors would dream of doing. She has held my hand, called me, come to visit Micah when she did not have to and just been a dream come true to our family. She has checked out Noah and Leah and told me that they both have perfect hearts and she has listened to my every concern and worry and not minimized any of it. She trusts me and I trust her...she told me once that 50% of Micah belongs to her, and while I jokingly told her that she never had to carry him around and deliver him...I have to agree and maybe even disagree that she holds a great deal of stake in him. She is part of our family and we love and adore her!!!!
If you have a chance, please go to our heart support groups website: Heart-N-Hands at heartnhands.org and learn more about congenital heart defects/disease. There is so much that needs to be learned about it and yet there is so little being done.
Heart Hugs!
Samantha
Noah's 6th Birthday Montage
VERY LATE!!! Sorry about that...they are not in any special order, so you get to see him over his lifetime...such a precious boy!
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