Entering a blog post today was not part of the plan. However, most of today was not part of the plan. It's Monday.....which means school, work and one of my busiest days of the week at work. I took my shower, woke the kids up, picked out Madi's clothes all the usual things.
I went downstairs to start the kids breakfast turned on the dining room light and my whole day changed. Madi's white of her eye was almost red and her eyelashes were all crusty....PINK EYE...YUCK!! Lucky for us our doctor is open 7-7 Monday-Friday. I called them and they could see us right at 8:00 am....LUCKY BREAK....Nope.....all part of God's plan for us today.
So I dropped the older two off at school and headed to the appointment. We checked in and waited to be called. Then the thing I dread the most weight check. Since her Open-Heart Surgery (OHS) in 2008 Madi has struggled with eating and weight gain. She was almost labeled "Failure to Thrive". Sometimes one of the worst side effects to your child having OHS is eating and weight gain. For a while Madi didn't even register on the growth chart because she was so under weight.
She has to sit at the front of the bus in a special seat because she weighs less than 40 lbs. Back in November I took her for a weight check to see if she could ride in a booster seat to Florida. NOPE!! she still weighed less than 40 lbs.
Then today happened. We walk in she hands me her coat and shoes and jumps on the scale. 40.2 lbs!!! I was speechless. I was waiting for someone to tell me it was wrong. But it wasn't. When it finally hit me we had reached a huge milestone I had Madi get back on the scale so I could take a picture and text it to Daddy.
Although I am excited we reached a part of our journey I have been longing for just like her CHD nothing is guaranteed. I have lived the heart break of two steps forward and five steps back. When they moved Madi out of a critical care room and into a regular CVICU room her lung collapsed. We went to see the lung doctor and I thought she was doing great and he needed to give her an immediate treatment because she had an infection in her lungs. She started to get regular UTI's they thought her urine was travelling back to her kidneys. More tests, more unknowns, more stress.
I have begged Madi to eat, bartered with her, yelled at her, told her if she didn't eat the dinner provided she could not have anything else. NONE OF THIS WORKS!! Today was a big day and I was thrilled to tears she finally made 40.2 lbs. But what you don't know what you can't possibly imagine is that she ate 3/4 of a large banana, ONE rigatoni noodle, a granola bar and a yogurt today, not for lack of trying.
All this means is we wipe the slate clean, she will probably be starving in the morning and she will probably eat scrabbled eggs, a piece of peanut butter toast and some milk for breakfast. Everyday I have to let go of the failure of yesterday and try something new and inviting the next day. The good thing is she likes the healthy stuff. I just have to pick the healthiest things I know she will eat with the right kind of calories in it.
Because of this up and down journey I can not put Madi in a booster seat yet. I have to wait a few weeks take her back to the doctor, just for a weight check, if she is over 40 lbs again then I can buy her a booster seat. Nothing with a CHD journey is ever guaranteed. Madi's corrected heart surgery is doing beautifully but what about the residual effects that stem from it. When Madi celebrates her 7th birthday I will be lucky if she weighs 41 lbs. Her average weight gain is 3 lbs a year. At this rate when she is 14 she will be lucky to weigh 62 lbs. According to NC law I will have a teenager who legally still has to be in a booster seat.
CHD's happen to real people every day. Just because the heart is repaired doesn't mean the fight is over. There is so much that is still unknown about CHD's. Spreading awareness, raising funds so the research can be done, figuring out a way that CHD babies live past their first birthday, why do so many CHD babies have difficulty with eating and gaining weight. These are real issues that I and so many other families face everyday. We need real answers.
Madelynn is 1 in 100.
TTFN~
Monday, February 2, 2015
Sunday, February 1, 2015
I will not apologize......
Today starts Congenital Heart Defect Awareness Month. If you have ever met me or know anything about my family, this is something I am very passionate about.
I will not apologize if your facebook news feed, twitter, or instagram accounts are flooded with facts, statistics or heart wrenching photos about heart warriors and their fight to live. They did not ask to be born this way, nor did their parents do anything wrong to make them this way. It is the gift God gave them. These child are born with special challenges and the parents entrusted to make sure the warriors have every chance possible are amazing.
Did you know????
-Congenital heart defects (CHD's) are the #1 birth defect in the US and every other country
-Nearly 1 in every 100 babies are born with a CHD
-Congenital heart defects are the #1 cause of birth defect related deaths
-Congenital heart defects are the leading cause of all infant deaths in the United States
-Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood
-Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood
-More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
-There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
-In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD
This last statistic is the most shocking to me. It makes me shake my head every time I read it. When I think of our journey and how far we have come, kids like Madelynn are worth the funding so that other families never have to make this journey. Below is a video I made to celebrate Madelynn's 3rd Heart Anniversary.
If I have learned anything it is to celebrate EVERY small victory. Happy Heart Month!! #1in100
I will not apologize if your facebook news feed, twitter, or instagram accounts are flooded with facts, statistics or heart wrenching photos about heart warriors and their fight to live. They did not ask to be born this way, nor did their parents do anything wrong to make them this way. It is the gift God gave them. These child are born with special challenges and the parents entrusted to make sure the warriors have every chance possible are amazing.
Did you know????
-Congenital heart defects (CHD's) are the #1 birth defect in the US and every other country
-Nearly 1 in every 100 babies are born with a CHD
-Congenital heart defects are the #1 cause of birth defect related deaths
-Congenital heart defects are the leading cause of all infant deaths in the United States
-Each year approximately 40,000 babies are born in the United States with a congenital heart defect. Thousands of them will not reach their first birthday and thousands more die before they reach adulthood
-Each year over 1,000,000 babies are born worldwide with a congenital heart defect. 100,000 of them will not live to see their first birthday and thousands more die before they reach adulthood
-More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime.
-There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
-In the United States, twice as many children die from congenital heart defects each year than from all forms of childhood cancer combined, yet funding for pediatric cancer research is five times higher than funding for CHD
This last statistic is the most shocking to me. It makes me shake my head every time I read it. When I think of our journey and how far we have come, kids like Madelynn are worth the funding so that other families never have to make this journey. Below is a video I made to celebrate Madelynn's 3rd Heart Anniversary.
If I have learned anything it is to celebrate EVERY small victory. Happy Heart Month!! #1in100
Saturday, January 31, 2015
Happy Birthday Justine!!
Happy Birthday Justine!! |
| I love that I can come see you for vacation. |
 |
| Even more I love that as we were born a week apart, our daughters were born less than a month apart and can't wait to see each other. I wonder where they get that from?? |
Love ya!
Chelsea
Sunday, January 4, 2015
Finally....Things I have learned in 2014......
I have been trying to post this for a few days now. I keep doing other things and remembering I wanted to get this post done while I am drive down the road or the middle of the grocery store. Recently, I decided to finish the master closest. I have been scraping popcorn ceiling, sanding mudding, more sanding. I even got hooked on a stupid (not really) FB game, Trivia Crack (Thanks Ted). I have been painting the ceiling with several coats of paint to get it done. While I was waiting for the paint to dry, I finally remembered to finish this post.
In 2014 I learned many things........
Best Friends are Forever - I knew this already but the friends that mean the most to me reminded me how much they truly care about and love me.
Some people were never my friend - One of my biggest faults is that I always want to see the good in people and they use it to betray me.
Love is Forever - On the days I want to kill my children for not listening, breaking something or hurting my feelings; I still love them. Even in my angriest moment, I can still look them in the face and say, "I love you every second of every minute of every day."
For me.....Marriage is Forever - Some days I do not like Phil because we do not agree or we make each other angry. But I always without a doubt I LOVE him. I promised him forever.
Family is what you make it - I am lucky to have both of my parents still with me. I never want to take that for granted. But some people aren't so lucky. Whether it be those with deceased parents, fathers who have no relationship with their children, sharing your children with childless couples, or piece mealing a family together with those that work at it or want it.....it is ALL family.
Sometimes you have to draw a line in the sand.....and choose not to cross it - Standing your ground, if it is what you truly believe, regardless if someone else thinks it is wrong, you should not waiver. This has been a very hard choice to make. Because I always want to see the best in people, I have been burned by it and will no longer cross the line.
Soccer Moms are the coolest.....We turn into blithering idiots because we want our children to have amazing success. As the moms we see the ability in our players. Victory or defeat our child shares this as a team. One exceptional athlete does not make the team. But I also know if I called these Moms in a crisis they would be their in a minute or the first to congratulate at a success of any kind.
Do Everything Joyfully - On the days you don't want to go to work, run that errand you promised, help the friend in need on your busiest day, whatever life throws at you do it ALL JOYFULLY!! Other people see you and you are a witness 24/7/365. I once was standing in line at the post office to mail a package. The person in front of me just needed a stamp and it was a very long line. I pulled a stamp out of my purse and gave it to her. She tried to pay me for it. I told her to pay it forward to someone else. She told me I made her day. I wonder how she paid it forward to someone else??
Social Media isn't all it is cracked up to be - I have a very good friend who I talk to almost everyday. She texts me in the morning to see how the family is. She sends me stupid jokes that make me laugh out loud in my office alone. However, we share not a single social media account together. We are not FB friends, she is not on my instagram or my twitter or pintrest. According to social media, we do not know each other, but I truly treasure her friendship and would walk through fire to keep it.
God is in control - No matter what I try to control or think this is the plan full steam ahead. God always has His plan and I need to remember to be obedient and follow it.
Good Luck in 2015..... Back to the next coat of paint and then a little Trivia Crack LOL!!
TTFN~
In 2014 I learned many things........
Best Friends are Forever - I knew this already but the friends that mean the most to me reminded me how much they truly care about and love me.
Some people were never my friend - One of my biggest faults is that I always want to see the good in people and they use it to betray me.
Love is Forever - On the days I want to kill my children for not listening, breaking something or hurting my feelings; I still love them. Even in my angriest moment, I can still look them in the face and say, "I love you every second of every minute of every day."
For me.....Marriage is Forever - Some days I do not like Phil because we do not agree or we make each other angry. But I always without a doubt I LOVE him. I promised him forever.
Family is what you make it - I am lucky to have both of my parents still with me. I never want to take that for granted. But some people aren't so lucky. Whether it be those with deceased parents, fathers who have no relationship with their children, sharing your children with childless couples, or piece mealing a family together with those that work at it or want it.....it is ALL family.
Sometimes you have to draw a line in the sand.....and choose not to cross it - Standing your ground, if it is what you truly believe, regardless if someone else thinks it is wrong, you should not waiver. This has been a very hard choice to make. Because I always want to see the best in people, I have been burned by it and will no longer cross the line.
Soccer Moms are the coolest.....We turn into blithering idiots because we want our children to have amazing success. As the moms we see the ability in our players. Victory or defeat our child shares this as a team. One exceptional athlete does not make the team. But I also know if I called these Moms in a crisis they would be their in a minute or the first to congratulate at a success of any kind.
Do Everything Joyfully - On the days you don't want to go to work, run that errand you promised, help the friend in need on your busiest day, whatever life throws at you do it ALL JOYFULLY!! Other people see you and you are a witness 24/7/365. I once was standing in line at the post office to mail a package. The person in front of me just needed a stamp and it was a very long line. I pulled a stamp out of my purse and gave it to her. She tried to pay me for it. I told her to pay it forward to someone else. She told me I made her day. I wonder how she paid it forward to someone else??
Social Media isn't all it is cracked up to be - I have a very good friend who I talk to almost everyday. She texts me in the morning to see how the family is. She sends me stupid jokes that make me laugh out loud in my office alone. However, we share not a single social media account together. We are not FB friends, she is not on my instagram or my twitter or pintrest. According to social media, we do not know each other, but I truly treasure her friendship and would walk through fire to keep it.
God is in control - No matter what I try to control or think this is the plan full steam ahead. God always has His plan and I need to remember to be obedient and follow it.
Good Luck in 2015..... Back to the next coat of paint and then a little Trivia Crack LOL!!
TTFN~
Tuesday, December 30, 2014
Flawless.....
For Christmas Madelynn received a new CD, MercyMe-Welcome to the New. I was listening to it in my car and came across this......
Thinking there is worth in what you do,
Then like a HERO who takes the stage when
We're on the edge of our seats saying it is too late
Well let me introduce you to Amazing Grace
No matter the bumps
No matter the bruises
No matter the SCARS
Still the truth is
The cross has made
The cross has made you FLAWLESS
All I could think of was My Heart Hero's scars make her Flawless. God chose me to be her parent. I was His perfect choice for her so he gave me a perfect child in His eyes.
To look at her she is too small and too skinny. She fights me at every meal and hates to eat. She will be 7 at her next Birthday but still has to ride in a 5 point harness on the school bus; she doesn't weigh enough. With all the battles we have fought and the scars she has to show for it SHE IS BEAUTIFUL and FLAWLESS.
Parents remember the long nights in the hospital, the bad news after more bad news as your child fights to live. Your memories are more powerful than anything your child remembers. But the fact of the matter is your warrior is perfect and beautiful. Whether it be the smile that melts the bad day away, the hug that releases the stress, the "I Love you" that reminds you every inch is worth fighting for, or the pure love parents have for their warrior it is ALL Flawless.
My hope for 2015 is to help remind parents even with all the physical brokenness our children are born with they are all still flawless and beautiful.
TTFN~
Thinking there is worth in what you do,
Then like a HERO who takes the stage when
We're on the edge of our seats saying it is too late
Well let me introduce you to Amazing Grace
No matter the bumps
No matter the bruises
No matter the SCARS
Still the truth is
The cross has made
The cross has made you FLAWLESS
All I could think of was My Heart Hero's scars make her Flawless. God chose me to be her parent. I was His perfect choice for her so he gave me a perfect child in His eyes.
To look at her she is too small and too skinny. She fights me at every meal and hates to eat. She will be 7 at her next Birthday but still has to ride in a 5 point harness on the school bus; she doesn't weigh enough. With all the battles we have fought and the scars she has to show for it SHE IS BEAUTIFUL and FLAWLESS.
Parents remember the long nights in the hospital, the bad news after more bad news as your child fights to live. Your memories are more powerful than anything your child remembers. But the fact of the matter is your warrior is perfect and beautiful. Whether it be the smile that melts the bad day away, the hug that releases the stress, the "I Love you" that reminds you every inch is worth fighting for, or the pure love parents have for their warrior it is ALL Flawless.
My hope for 2015 is to help remind parents even with all the physical brokenness our children are born with they are all still flawless and beautiful.
TTFN~
Thursday, December 4, 2014
Happy Birthday Kaitlynn!!
Happy 11th Birthday Kaitlynn!!!
To my oldest child.......
Because of you, I wanted to have more children
Because of you, I laugh more
Because of you, I want to be a better mom
Because of you, I love to watch soccer
Because of you, my life is simply better
Thank you for always making my life better.
Happy Birthday Sweet Girl!!
Love, Mama
Thursday, November 27, 2014
Remembering to Thank a nurse.....Happy Thanksgiving.....
Today I will be sitting around a large table with more food than we know what to do with. We know we are truly blessed and lucky. Because of our our experience at the children's hospital with Madelynn we are reminded daily how lucky we are. We also learned about the nursing staff. Nurses.....They are amazing people.
If is wasn't for the stellar nursing staff at Levine Children's Hospital I would have never learned to be empowered to care for my children. Every day they would ask me if I understood what the doctor said. When I didn't they would re-explain it. They encouraged me to care for my child in the hospital. They understood the idea of Family Centered Care. Making sure the whole family was included in the care of the patient.
Nurses have a tough job. They are required to work without emotion. They experience the miracle of life and sometimes the devastating end all in a days work. When Madelynn was in the hospital one of the heart warriors died. I walked out into the hall to see the nurse crying because it was her patient that passed. She was being consoled by her co-workers. The next day that nurse came to work and had to care for Madelynn.
How do you come to work, fight for someone to live, they die even after all your efforts, you go home and come back to work the next day to help the next patient. The emotional highs and lows are almost unfathomable. Witnessing just a peak into this world while we were in the hospital is almost unimaginable to me. All of their efforts are more than appreciated
Today I am very thankful for so many things. But I know that we would not be where we are today without some outstanding nurses. As they show up to work like it is any other day they won't be around a table stuffing their face. Please pray for all the hospital staff working today, the patients and their families in the hospital.
Happy Thanksgiving!
TTFN~
If is wasn't for the stellar nursing staff at Levine Children's Hospital I would have never learned to be empowered to care for my children. Every day they would ask me if I understood what the doctor said. When I didn't they would re-explain it. They encouraged me to care for my child in the hospital. They understood the idea of Family Centered Care. Making sure the whole family was included in the care of the patient.
Nurses have a tough job. They are required to work without emotion. They experience the miracle of life and sometimes the devastating end all in a days work. When Madelynn was in the hospital one of the heart warriors died. I walked out into the hall to see the nurse crying because it was her patient that passed. She was being consoled by her co-workers. The next day that nurse came to work and had to care for Madelynn.
How do you come to work, fight for someone to live, they die even after all your efforts, you go home and come back to work the next day to help the next patient. The emotional highs and lows are almost unfathomable. Witnessing just a peak into this world while we were in the hospital is almost unimaginable to me. All of their efforts are more than appreciated
Today I am very thankful for so many things. But I know that we would not be where we are today without some outstanding nurses. As they show up to work like it is any other day they won't be around a table stuffing their face. Please pray for all the hospital staff working today, the patients and their families in the hospital.
Happy Thanksgiving!
TTFN~
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