http://www.icingsmiles.org/Site/Welcome.html
Icing Smiles is a non profit organization that provides custom celebration cakes and other treats to families impacted by critical illness of a child. We understand that the simple things, like a birthday cake, are luxuries to a family battling illness. Our goal is to create a custom cake for the ill child or their sibling that will provide a temporary escape from worry and create a positive memory during a difficult time.
Saturday, November 13, 2010
prayerchild.org
http://www.goldcanyon.com/Shop/Candles-for-a-Cause/pl/211
The proceeds from our Candles for Kids line of candles are donated to our charity of choice, the Prayer Child Foundation, which helps to create a brighter tomorrow for children facing physical and emotional challenges. For more information about the Prayer Child Foundation, please visit http://prayerchild.org.
http://www.prayerchild.org/index.html
The proceeds from our Candles for Kids line of candles are donated to our charity of choice, the Prayer Child Foundation, which helps to create a brighter tomorrow for children facing physical and emotional challenges. For more information about the Prayer Child Foundation, please visit http://prayerchild.org.
http://www.prayerchild.org/index.html
Heart Hero Capes
http://www.supportheartheroes.com/request-a-cape-auto-response.html
Check out this site, and get your little heart hero a super hero cape! Such a neat idea! I will post more once I get Avery's!
Check out this site, and get your little heart hero a super hero cape! Such a neat idea! I will post more once I get Avery's!
Cross Healed Hearts Shirts
Please contact Megan Bell at megbeau2@yahoo.com if you are interested in purchasing a CHH shirt to support our pillow and blanket ministry. Thanks!
Saturday, November 6, 2010
Remember...
Remember that God loves you today. Remember that He hurts when you hurt. Remember that no matter what, He will see you through. He will hold you in His hands, and lead you. He will never let go. His love is the only thing that will NEVER fail. May you be at peace in whatever circumstance or storm you are in at this moment. Praise Him, and know that He is the one who gave his ONLY son just for you.
The Batson Project
I am so excited about our Cross Healed Hearts Pillow and Blanket Project for Blair E. Batson Children's Hospital! These are the items we will be making for pediatric patients undergoing heart surgery! Thanks to the proceeds from our T-shirt fundraiser, we have begun ordering the needed materials. God bless everyone who is and has supported us in this endeavor!! A special thanks to Mrs. Leslie Gordon for the pillow pattern design, and seamstress, Mrs. Judy Simmons for your fabulous work on the heart pillow! Also, one of my awesome 5th graders has volunteered to make baby blankets- the picture is her handy-work- thank you soo much Victoria!
Heart Shaped "Cough" Pillows
Fleece Tie-Knot Baby Blankets
Heart Shaped "Cough" Pillows
Fleece Tie-Knot Baby Blankets
Friday, October 8, 2010
Christopher's Story of Hope and Faith
What can one say after reading something like this? If you don't read another story on this blog, I pray you read this one. This is the kind of faith that we should all be praying to attain. Praise God in whatever storm you are in, and He will see you through. Thank you Kristi for strengthening my faith, as well as the faith of others through your story.
I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and my husband and I were told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk.
Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like (non-compacted). When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopathy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff. The only option given to us was a heart transplant, and we went to Arkansas Children's Hospital for a heart transplant work up. Lots of things happened there for the decision to be made to opt out, but I can guarantee you this was the hardest decision my husband and I could ever make. But in the end, the saying "It's not the number of breaths in your life that matter, it's the number of moments in your life that take your breath away." prevailed. Also, we knew that the prognosis wasn't good either way, and whatever God's will was, would be with or without a new heart.
There were a lot of folks, including family, who questioned our decision. I remember the moment I truly placed my son at God's feet and asked Him to do whatever was His will, I felt the biggest weight lifted off of me. We were ready to take our son home and let him live his life out comfortably, no matter how short it may be. He and his older brother, Justin, were finally given the opportunity to know one another finally. The closeness and special bond between them made our decision worth it alone.
We took him home at 45 days of age with the EF around 19% and he was admitted into hospice the next day.
The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win -win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. And I could not let the fear of "what if" rob the joy of "what is"!
I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay.
Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.
{Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus Philippians 4:6-7}
I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.
We got another life shaking phone call when Christopher was 21 months old, this time from this geneticist. He told us the reason Christopher was born with his heart condition is because he has
Barth Syndrome(http://www.hopkinsmedicine.org/cmsl/Barth_Summary.html), a very rare genetic debilitating disorder affecting only boys, that causes heart failure, neutropenia, low muscle tone, fatigue, eating issues and pain along with other problems. It is not just his heart that is affected, but every single cell in his body.
There is a big possibility that we will face a decision of heart transplant again, as BTHS causes the heart function to be a rollercoaster. He is not supposed to be around other children because of the neutropenia, he has poor immunity. A fever can be fatal.
Christopher was the very first Barth syndrome child in our state, followed by his first cousin, Jacob. Barth syndrome affects less than 1 in every 400,000 males world wide and there are only approximately 150 known cases worldwide, though it is believed that BTHS is severly underdiagnosed. It is a very scary feeling to hear every doctor who examines your child say they have never heard of Barth syndrome and that I know more than they do about the disease. Barth syndrome did not get a name until the early 90’s and it had a 100% mortality rate for boys under the age of three as late as the 80’s.
With this diagnosis is affirmation to never lose sight of the trust we must have in our Father in heaven. We still depend on miracles every day. Back to the faith thing. God is in control, and He doesn't do half miracles and our trust in Him has never failed us.
The lemonade from the lemons of this discovery is that Barth syndrome Foundation (http://www.barthsyndrome.org/english/view.asp?x=1) has been a huge abundance of information and support for us. It is kind of like inheriting a whole new family of people who care about you. We experienced at the BSF 2010 International Scientific, Medical & Family Conference doesn't end with the affected families, even the scientists and doctors truly care. We met other families from all over the world, and some of the “boys” are now grown men, (our heroes!!) and it gives us a lot of hope. At this very gathering I realized this was the first time in Christopher's life that his story was actually ordinary! See, every one of these boys are a true miracle and each have an amazing story.
He is now 2 and a half years old! His last echo revealed that his heart function is up to 79% - with his own heart! He still has obstacles, but man when I look back at how far we have come, I am still awestruck by the power of God's healing.
His 3rd birthday is rapidly approaching and I am basking in every minute with him. Each milestone we reach, we remember how special it is, we were never supposed to see them. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book.
I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD and Barth syndrome awareness. Christopher's story has made a number of headlines and he has become a regular little celebrity.I work closely with Mississippi Mended Little Hearts in hope of supporting others who find themselves in the situation we did. We also love to do anything for the Blair E batson hospital for children, after having so many doctors appointments, etc., that the staff have all become like family. The most important message for my family to convey is that God is still in the miracle buisness!
(If you have faith the size of a mustard seed, you will say to this mountain, "move from here to there," and it will move; and nothing will be impossible for you. Matthew 17:20)
I would like to invite you to follow Christopher's story and updates at his caringbridge website, http://www.caringbridge.org/visit/cj08 . If you would like to know the entire story, you can set the journal entries from oldest to newest.
I will "walk by faith, not by sight"
Matthew 6:34
"KEEP SMILING & PRAISE THE LORD ANYHOW"
http://www.caringbridge.org/visit/cj08
Kristiana
Supported Organizations:
I am not sure where to start, but I guess letting you know how I learned about CHD. It was when my youngest son was born and my husband and I were told , quote, “your son has a lousy heart.” Those words were followed by, “there is nothing we can do, take him home and enjoy him.” Okay, I am thinking, “it’s 2008, what do you MEAN, you can’t fix his heart!?” People in general perceive CHD’s to be something like a minor hole in the heart, something that can be grown into, or “fixed”. The reality is that these children, SOME of them have the option of surgery, but not without lots of risk.
Christopher is one of the ones that surgery isn’t an option for. His condition of dialated left ventricular non compacted cardiomyopathy means that that when a fetus is in utero, their heart is sponge-like (non-compacted). When they are ready to be born the heart will compact and become more solidified like a muscle. CJ’s heart did not do that - resulting in the cardiomyopathy (weakness of the heart). It affects his right and left ventricles where it is very hard for his heart to pump and function correctly. Nothing is missing, out of place, or backwards. It’s the whole heart, all big, stretched out, and stiff. The only option given to us was a heart transplant, and we went to Arkansas Children's Hospital for a heart transplant work up. Lots of things happened there for the decision to be made to opt out, but I can guarantee you this was the hardest decision my husband and I could ever make. But in the end, the saying "It's not the number of breaths in your life that matter, it's the number of moments in your life that take your breath away." prevailed. Also, we knew that the prognosis wasn't good either way, and whatever God's will was, would be with or without a new heart.
There were a lot of folks, including family, who questioned our decision. I remember the moment I truly placed my son at God's feet and asked Him to do whatever was His will, I felt the biggest weight lifted off of me. We were ready to take our son home and let him live his life out comfortably, no matter how short it may be. He and his older brother, Justin, were finally given the opportunity to know one another finally. The closeness and special bond between them made our decision worth it alone.
We took him home at 45 days of age with the EF around 19% and he was admitted into hospice the next day.
The doctors told us that his prognosis was six months or less. We had to learn to accept that each day may be his last. It is a very hard thing looking into your beautiful child’s huge eyes and knowing he is just on loan for a short while. God is the only reason I made it through that period of time, and I never let go of my faith that God would make my baby whole and it was a win -win situation for him no matter what. The footprints prayer, well that was me, God literally carried me through. And I could not let the fear of "what if" rob the joy of "what is"!
I remember people saying "they don’t know how I could sleep at night". Well, in the beginning it wasn’t easy and the pulse ox was a huge comfort as I could listen to it beep and know his heart was still beating. But somewhere along the way, I grew more confident, and eventually the pulse ox got dusty and I felt peace in knowing that Christopher was going to be okay.
Some people called it denial, some people called it an amazing act of faith - I tend to agree with the latter.
{Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus Philippians 4:6-7}
I trusted God and with that trust came the biggest peace that is very hard to describe. We celebrated Christopher’s birthday weekly and monthly, cake and all. Eventually, his expiration date came and went, he still remained a hospice patient, and we were still taking it one day at a time. His first birthday arrived and I cannot express to you the joy I felt that whole MONTH. The day we were promised NEVER to see was here!!! We had a huge celebration, and continued to give all honor and praise to the Lord. Christopher continued to get older and when he was 15 months old his hospice nurse decided it was time to take a look at his heart (we weren’t allowed any more ECHO's) with Christopher being a hospice patient and they “didn’t want to keep getting our hopes up”. The doctor told us that his heart had slightly improved but that he was still hospice status. Two days later we received a call from him that our visit left him feeling like it wasn’t finished and he took annother look at his ECHO. He also had all of his colleagues review it and Christopher’s heart had improved so much that in his good conscience, he could not recertify him for hospice! Okay after trying to put into words how I felt on his birthday, this is even more difficult to describe. Our language does not have a strong enough word. I can tell you that God does reward trust and faith and Christopher is a living breathing example.
We got another life shaking phone call when Christopher was 21 months old, this time from this geneticist. He told us the reason Christopher was born with his heart condition is because he has
Barth Syndrome(http://www.hopkinsmedicine.org/cmsl/Barth_Summary.html), a very rare genetic debilitating disorder affecting only boys, that causes heart failure, neutropenia, low muscle tone, fatigue, eating issues and pain along with other problems. It is not just his heart that is affected, but every single cell in his body.
There is a big possibility that we will face a decision of heart transplant again, as BTHS causes the heart function to be a rollercoaster. He is not supposed to be around other children because of the neutropenia, he has poor immunity. A fever can be fatal.
Christopher was the very first Barth syndrome child in our state, followed by his first cousin, Jacob. Barth syndrome affects less than 1 in every 400,000 males world wide and there are only approximately 150 known cases worldwide, though it is believed that BTHS is severly underdiagnosed. It is a very scary feeling to hear every doctor who examines your child say they have never heard of Barth syndrome and that I know more than they do about the disease. Barth syndrome did not get a name until the early 90’s and it had a 100% mortality rate for boys under the age of three as late as the 80’s.
With this diagnosis is affirmation to never lose sight of the trust we must have in our Father in heaven. We still depend on miracles every day. Back to the faith thing. God is in control, and He doesn't do half miracles and our trust in Him has never failed us.
The lemonade from the lemons of this discovery is that Barth syndrome Foundation (http://www.barthsyndrome.org/english/view.asp?x=1) has been a huge abundance of information and support for us. It is kind of like inheriting a whole new family of people who care about you. We experienced at the BSF 2010 International Scientific, Medical & Family Conference doesn't end with the affected families, even the scientists and doctors truly care. We met other families from all over the world, and some of the “boys” are now grown men, (our heroes!!) and it gives us a lot of hope. At this very gathering I realized this was the first time in Christopher's life that his story was actually ordinary! See, every one of these boys are a true miracle and each have an amazing story.
He is now 2 and a half years old! His last echo revealed that his heart function is up to 79% - with his own heart! He still has obstacles, but man when I look back at how far we have come, I am still awestruck by the power of God's healing.
His 3rd birthday is rapidly approaching and I am basking in every minute with him. Each milestone we reach, we remember how special it is, we were never supposed to see them. I still know better than to take for granted my time with him as we don’t know when god will call us home. It is a true miracle that my Christopher is alive today. Also, doctors have to tell you what they have learned in the text books, but that doesn’t mean God or the child in question is reading that same book.
I don’t know God’s plan, but I know that the least I can do is to continue to honor and praise Him, while also helping to spread CHD and Barth syndrome awareness. Christopher's story has made a number of headlines and he has become a regular little celebrity.I work closely with Mississippi Mended Little Hearts in hope of supporting others who find themselves in the situation we did. We also love to do anything for the Blair E batson hospital for children, after having so many doctors appointments, etc., that the staff have all become like family. The most important message for my family to convey is that God is still in the miracle buisness!
(If you have faith the size of a mustard seed, you will say to this mountain, "move from here to there," and it will move; and nothing will be impossible for you. Matthew 17:20)
I would like to invite you to follow Christopher's story and updates at his caringbridge website, http://www.caringbridge.org/visit/cj08 . If you would like to know the entire story, you can set the journal entries from oldest to newest.
I will "walk by faith, not by sight"
Matthew 6:34
"KEEP SMILING & PRAISE THE LORD ANYHOW"
http://www.caringbridge.org/visit/cj08
Kristiana
Supported Organizations:
Friday, October 1, 2010
CHH Informational Brochure
The following is information placed on a brochure I created to spread the word about Cross Healed Hearts.
Don't worry about anything; instead, pray about everything tell God your needs, and don't forget to thank Him about His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ.
Phil. 4:6-7
Web site:
www.crosshealedhearts.blogspot.com
What?
Cross Healed Hearts is a non-profit, Christ centered ministry that provides prayer, love, and support for Pediatric heart patients and their families. Our purpose is to reveal the amazing, healing power of the cross, one heart at a time. We strive to bring the hope that lies within our Lord, Jesus Christ, to those enduring the pain and fear of congenital heart defects and associated heart issues in children. While our focus seems to be on CHD, we also hope to connect with and support families living with Turner’s Syndrome (with and without associated heart defects) as well as promote awareness about this little known syndrome. At the same time, we plan to reach out to anyone we come across in need of continuous prayer, due to loss, illness, high-risk pregnancy or hardship. We all need our hearts healed at times.
The CHH T-Shirt Fundraiser
How?
We have many high hopes for this ministry, but for now, we are doing the following:
1. CHH appliqué pillows are sent to people (all over the U.S., but especially in our area) in need of love, support, and encouragement, due to loss such as miscarriage, illness, CHD, TS, etc., as a token of our thoughts and prayers for them. The pillows are sent along with information about our blog, and recipients are placed on the CHH prayer list where “prayer warriors” pray for them daily.
2. Hand-sewn, red, heart shaped pillows are donated to Blair Batson hospital for children in the Pediatric Intensive Care Unit recovering from surgery. We call these pillows “cough pillows” because patients hold these to their abdomen when coughing in recovery to make it less painful. Along with the pillows, patients are given Sharpie markers (also donated by CHH), so doctors, nurses, and visitors may sign their pillows as a keepsake of their survival.
3. Tie-knot fleece blankets are also donated to Blair Batson Hospital for infants in the PICU as well as pregnant mothers carrying CHD babies in the hospital. This is just a soft token of our affection to keep them warm while in the cold hospital environment.
Why?
Meet Avery...
Photo Compliments of Mauri Hart Photography
Avery is my one year old daughter who was diagnosed with fetal cystic hygroma at 18 weeks gestation. We were told she would not live past 22 weeks in-utero, but instead of circumstances worsening, Avery progressively got better. Many prayers were answered on her behalf, and we believe she was and is still being healed by the hand of God primarily due to prayer. Although Avery had only around 1% survival according to statistics, she overcame the odds, and was born into this world in June of 2009. Avery has Turner’s Syndrome, along with associated heart and kidney defects. She has been through various procedures since birth, as well as 2 heart surgeries (one at one week old and one at 7 months old), but she is hitting all of her milestones and thriving. While she will have surgeries and other procedures throughout her life, she is expected to live a normal, healthy life. I want others to feel the comfort in Christ that I was able to feel as a mom in these circumstances by giving support, love and prayer to those that are suffering. Not only that, but through the blog, people are able to be connected by circumstance, find out valuable information and resources, as well as read stories of others who have overcome life’s difficulties. CHH portrays a positive message and can give hope to those facing dire circumstances.
CHH Supporters
Linda Turner
Judy Simmons
Laura Beauman
Willingham’s Gift Shop
1305 Washington St.
Vicksburg, Mississippi
(601) 631-0081
Fabs & More
1106 Washington Street
Vicksburg, MS, 39180
601-636-0510
http://www.fabsandmore.com
Avery Photo by Mauri Hart Photography
www.maurihart.smugmug.com
To learn more about our story, CHH, CHD, TS, and the like, or to contact us, please visit crosshealedhearts.blogspot.com or “like” us on Facebook!
God Bless you for your support of this ministry!
Megan Beauman Bell
Don't worry about anything; instead, pray about everything tell God your needs, and don't forget to thank Him about His answers. If you do this, you will experience God's peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ.
Phil. 4:6-7
Web site:
www.crosshealedhearts.blogspot.com
What?
Cross Healed Hearts is a non-profit, Christ centered ministry that provides prayer, love, and support for Pediatric heart patients and their families. Our purpose is to reveal the amazing, healing power of the cross, one heart at a time. We strive to bring the hope that lies within our Lord, Jesus Christ, to those enduring the pain and fear of congenital heart defects and associated heart issues in children. While our focus seems to be on CHD, we also hope to connect with and support families living with Turner’s Syndrome (with and without associated heart defects) as well as promote awareness about this little known syndrome. At the same time, we plan to reach out to anyone we come across in need of continuous prayer, due to loss, illness, high-risk pregnancy or hardship. We all need our hearts healed at times.
The CHH T-Shirt Fundraiser
How?
We have many high hopes for this ministry, but for now, we are doing the following:
1. CHH appliqué pillows are sent to people (all over the U.S., but especially in our area) in need of love, support, and encouragement, due to loss such as miscarriage, illness, CHD, TS, etc., as a token of our thoughts and prayers for them. The pillows are sent along with information about our blog, and recipients are placed on the CHH prayer list where “prayer warriors” pray for them daily.
2. Hand-sewn, red, heart shaped pillows are donated to Blair Batson hospital for children in the Pediatric Intensive Care Unit recovering from surgery. We call these pillows “cough pillows” because patients hold these to their abdomen when coughing in recovery to make it less painful. Along with the pillows, patients are given Sharpie markers (also donated by CHH), so doctors, nurses, and visitors may sign their pillows as a keepsake of their survival.
3. Tie-knot fleece blankets are also donated to Blair Batson Hospital for infants in the PICU as well as pregnant mothers carrying CHD babies in the hospital. This is just a soft token of our affection to keep them warm while in the cold hospital environment.
Why?
Meet Avery...
Photo Compliments of Mauri Hart Photography
Avery is my one year old daughter who was diagnosed with fetal cystic hygroma at 18 weeks gestation. We were told she would not live past 22 weeks in-utero, but instead of circumstances worsening, Avery progressively got better. Many prayers were answered on her behalf, and we believe she was and is still being healed by the hand of God primarily due to prayer. Although Avery had only around 1% survival according to statistics, she overcame the odds, and was born into this world in June of 2009. Avery has Turner’s Syndrome, along with associated heart and kidney defects. She has been through various procedures since birth, as well as 2 heart surgeries (one at one week old and one at 7 months old), but she is hitting all of her milestones and thriving. While she will have surgeries and other procedures throughout her life, she is expected to live a normal, healthy life. I want others to feel the comfort in Christ that I was able to feel as a mom in these circumstances by giving support, love and prayer to those that are suffering. Not only that, but through the blog, people are able to be connected by circumstance, find out valuable information and resources, as well as read stories of others who have overcome life’s difficulties. CHH portrays a positive message and can give hope to those facing dire circumstances.
CHH Supporters
Linda Turner
Judy Simmons
Laura Beauman
Willingham’s Gift Shop
1305 Washington St.
Vicksburg, Mississippi
(601) 631-0081
Fabs & More
1106 Washington Street
Vicksburg, MS, 39180
601-636-0510
http://www.fabsandmore.com
Avery Photo by Mauri Hart Photography
www.maurihart.smugmug.com
To learn more about our story, CHH, CHD, TS, and the like, or to contact us, please visit crosshealedhearts.blogspot.com or “like” us on Facebook!
God Bless you for your support of this ministry!
Megan Beauman Bell
Wednesday, September 29, 2010
Baby Pierce Article, Jackson Free Press
The following article was posted this week in the Jackson Free Press about the Helms family and their CHD angel, Pierce. Pierce's father, BJ, said, "I know he's in heaven. He's whole again, not hurting. That's how I get peace with it. Every day I miss him, and I'll always miss him."
The kind of peace we crave through times like these, only God can give. Sometimes prayers aren't answered the way we hoped they would be. Thankfully, we have a God who clings to us, when we aren't strong enough to hold on to him. God's plan is so far above our human comprehension, we could never understand, even if he tried to explain it to us. Through this pain, the Helms' family is touching lives and spreading awareness which will in turn save lives. During my pregnancy, I read the following quote from Rick Warren: "Your greatest ministry, will likely come out of your greatest hurt." I believe that to be very true. Through our painful experiences, we are able to relate to others and also comfort them in similar situations. I counted on the following verses to lift me up lots of times during my pregnancy, expecially, when I thought Avery would was going to Heaven rather than staying here with me.
2 Cor. 1:3-7
All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too.
When we suffer for Jesus, it works out for your healing and salvation. If we are treated well, given a helping hand and encouraging word, that also works to your benefit, spurring you on, face forward, unflinching. Your hard times are also our hard times. When we see that you're just as willing to endure the hard times as to enjoy the good times, we know you're going to make it, no doubt about it.
2 Cor. 4:8-18
We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.
Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies. So we live in the face of death, but this has resulted in eternal life for you.
But we continue to preach because we have the same kind of faith the psalmist had when he said, “I believed in God, so I spoke.”We know that God, who raised the Lord Jesus, will also raise us with Jesus and present us to himself together with you. All of this is for your benefit. And as God’s grace reaches more and more people, there will be great thanksgiving, and God will receive more and more glory.
That is why we never give up. Though our bodies are dying, our spirits are being renewed every day.For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
Regardless, of what happens, God will lead us through it, and if we let Him, He will create a purpose within us that we never would have pictured for our lives. Steven Curtis Chapman's wife made a great point (which I heard on KLove) when she said that when we can praise God through the most terrible times in our lives, as well as the wonderful times, we know our love for Him is pure. Praise Him in whatever storm you are in, and know that He loves you and He has an ultimate plan that is much bigger than we are.
Please join us all in the heart walk to raise awareness and walk in honor of all of the CHD "babies" out there.
Walking for Pierce
by ShaWanda Jacome
September 29, 2010
Pierce lay motionless in her arms, with his little Mohawk hair, dark brown and full. "I got to see his face," says Leah Helms, 33, about what she remembers most vividly in the final moments of her son's life. "I'm glad that we got to have that moment. ... (My husband, BJ, and I) were both just speechless ... how pretty to see his nose and mouth and face."
Pierce Allen Helms, or Baby Pierce as he had become known, had been running on fumes those last couple of days.
"He never gave up, he fought to the end. He never quit," BJ, 35, said.
Pierce's lungs, damaged and full of holes from the ventilator, couldn't be repaired through surgery. And because of sepsis, a whole-body infection, he didn't qualify for a double transplant.
Baby Pierce was born with congenital aortic stenosis, an abnormal narrowing of his aortic valve. Infant (younger than 1 year) death rates are 36.5 per 100,000 white infants and 52.5 per 100,000 black infants, the American Heart Association reports.
Although a large part of the AHA efforts concentrates on adults, it also funds research to find ways to detect congenital heart defects sooner and give children a longer and better quality of life, Elaina Jackson of the AHA of Jackson said.
Dr. Jorge Salazar, chief of congenital heart surgery at the University of Mississippi Health Care, performed the state's first arterial switch on an infant in August.
Since joining UMMC in April, Salazar, 42, has performed 55 successful heart surgeries on children. "I'm really excited for the other kids in Mississippi because they don't have to leave their state anymore. They get the same high-quality care at home," Salazar told the JFP in September.
Prior to Pierce's birth on Oct. 26, 2009, the Helms family had no indication of what lay ahead. Leah had a smooth pregnancy and four prior births of healthy babies.
"We never knew anything was wrong. ... I was thinking everything was fine," Leah said.
Things changed, though, after she delivered. "The nurse said ... 'We think he has a murmur. When he's breathing there's just this little growling sound,'" Leah said.
Pierce was transferred from River Oaks to UMC for surgery, but went into congestive heart failure and respiratory failure. He was then airlifted to the Children's National Medical Center in Washington, D.C., for additional surgery on his heart.
"We were just in shock. You hear about this kind of stuff, you read about it, but you just don't think it's going to happen to you," BJ said.
Over the next two months, Pierce's condition worsened, and it became evident that he would need a new heart. Pierce was transferred again to Arkansas Children's Hospital in Little Rock, arriving New Years Day.
"Just the agony of waiting and wondering and not knowing--it's a miserable, miserable feeling," BJ said.
"It was a long journey," he continued. "... I've been to combat ... I mean I wasn't just over in a country typing papers. I was (on the) front line, kicking in doors. And that doesn't compare to the stress of having a child on a transplant list, being that critical."
Baby Pierce had been through so much--pulmonary hypertension, premature ventricular contraction (misfiring of the heart), infections, ventilators, blood clots, transfusions and heavy sedation--his body just couldn't handle the constant strain. On Jan. 15, Leah broke the news on her online journal.
"My little Pierce got his angel wings today around 3."
Through teary eyes, BJ said, "I know he's in heaven. He's whole again, not hurting. That's how I get peace with it. Every day I miss him, and I'll always miss him."
BJ and Leah live in Brandon with their children Katie, 13; Peyton, 6; and Patrick 2. They lost their son Jonathan, who would have been 9 this year, in a 2003 car accident.
The Helmses don't want other Mississippians to go through what they did; they want to bring awareness. And although they wonder if the outcome would have been different if a pediatric cardio unit had been in Mississippi for Pierce, they are glad it's here now.
"I think there was more of a lesson than just to have Pierce and lose him. ... God does everything for a reason. We might not understand it at the time, but you have to listen to him and keep on going." Leah said.
This year, the JFP will walk in memory of Baby Pierce. Last year, more than 3,000 people raised more than $300,000 to fund heart research and educational programs.
The American Heart Association's 2010 Metro Jackson Start! Heart Walk is Sunday, Oct. 10, at 2 p.m. with registration at 1 p.m. The free event features a kid's zone, music, health information, a one-mile route for heart disease and stroke survivors, and a free, heart-healthy lunch by Subway. Pets on leashes are welcome.
http://www.jacksonfreepress.com/index.php/site/comments/walking_for_pierce_092810/
Sign up at metrojacksonheartwalk. kintera.org/teamjfp to join team JFP. For more information, contact ShaWanda Jacome at shawanda@jacksonfreepress.com, or call 601-362-6121 ext. 16
The kind of peace we crave through times like these, only God can give. Sometimes prayers aren't answered the way we hoped they would be. Thankfully, we have a God who clings to us, when we aren't strong enough to hold on to him. God's plan is so far above our human comprehension, we could never understand, even if he tried to explain it to us. Through this pain, the Helms' family is touching lives and spreading awareness which will in turn save lives. During my pregnancy, I read the following quote from Rick Warren: "Your greatest ministry, will likely come out of your greatest hurt." I believe that to be very true. Through our painful experiences, we are able to relate to others and also comfort them in similar situations. I counted on the following verses to lift me up lots of times during my pregnancy, expecially, when I thought Avery would was going to Heaven rather than staying here with me.
2 Cor. 1:3-7
All praise to the God and Father of our Master, Jesus the Messiah! Father of all mercy! God of all healing counsel! He comes alongside us when we go through hard times, and before you know it, he brings us alongside someone else who is going through hard times so that we can be there for that person just as God was there for us. We have plenty of hard times that come from following the Messiah, but no more so than the good times of his healing comfort—we get a full measure of that, too.
When we suffer for Jesus, it works out for your healing and salvation. If we are treated well, given a helping hand and encouraging word, that also works to your benefit, spurring you on, face forward, unflinching. Your hard times are also our hard times. When we see that you're just as willing to endure the hard times as to enjoy the good times, we know you're going to make it, no doubt about it.
2 Cor. 4:8-18
We are pressed on every side by troubles, but we are not crushed. We are perplexed, but not driven to despair. We are hunted down, but never abandoned by God. We get knocked down, but we are not destroyed. Through suffering, our bodies continue to share in the death of Jesus so that the life of Jesus may also be seen in our bodies.
Yes, we live under constant danger of death because we serve Jesus, so that the life of Jesus will be evident in our dying bodies. So we live in the face of death, but this has resulted in eternal life for you.
But we continue to preach because we have the same kind of faith the psalmist had when he said, “I believed in God, so I spoke.”We know that God, who raised the Lord Jesus, will also raise us with Jesus and present us to himself together with you. All of this is for your benefit. And as God’s grace reaches more and more people, there will be great thanksgiving, and God will receive more and more glory.
That is why we never give up. Though our bodies are dying, our spirits are being renewed every day.For our present troubles are small and won’t last very long. Yet they produce for us a glory that vastly outweighs them and will last forever! So we don’t look at the troubles we can see now; rather, we fix our gaze on things that cannot be seen. For the things we see now will soon be gone, but the things we cannot see will last forever.
Regardless, of what happens, God will lead us through it, and if we let Him, He will create a purpose within us that we never would have pictured for our lives. Steven Curtis Chapman's wife made a great point (which I heard on KLove) when she said that when we can praise God through the most terrible times in our lives, as well as the wonderful times, we know our love for Him is pure. Praise Him in whatever storm you are in, and know that He loves you and He has an ultimate plan that is much bigger than we are.
Please join us all in the heart walk to raise awareness and walk in honor of all of the CHD "babies" out there.
Walking for Pierce
by ShaWanda Jacome
September 29, 2010
Pierce lay motionless in her arms, with his little Mohawk hair, dark brown and full. "I got to see his face," says Leah Helms, 33, about what she remembers most vividly in the final moments of her son's life. "I'm glad that we got to have that moment. ... (My husband, BJ, and I) were both just speechless ... how pretty to see his nose and mouth and face."
Pierce Allen Helms, or Baby Pierce as he had become known, had been running on fumes those last couple of days.
"He never gave up, he fought to the end. He never quit," BJ, 35, said.
Pierce's lungs, damaged and full of holes from the ventilator, couldn't be repaired through surgery. And because of sepsis, a whole-body infection, he didn't qualify for a double transplant.
Baby Pierce was born with congenital aortic stenosis, an abnormal narrowing of his aortic valve. Infant (younger than 1 year) death rates are 36.5 per 100,000 white infants and 52.5 per 100,000 black infants, the American Heart Association reports.
Although a large part of the AHA efforts concentrates on adults, it also funds research to find ways to detect congenital heart defects sooner and give children a longer and better quality of life, Elaina Jackson of the AHA of Jackson said.
Dr. Jorge Salazar, chief of congenital heart surgery at the University of Mississippi Health Care, performed the state's first arterial switch on an infant in August.
Since joining UMMC in April, Salazar, 42, has performed 55 successful heart surgeries on children. "I'm really excited for the other kids in Mississippi because they don't have to leave their state anymore. They get the same high-quality care at home," Salazar told the JFP in September.
Prior to Pierce's birth on Oct. 26, 2009, the Helms family had no indication of what lay ahead. Leah had a smooth pregnancy and four prior births of healthy babies.
"We never knew anything was wrong. ... I was thinking everything was fine," Leah said.
Things changed, though, after she delivered. "The nurse said ... 'We think he has a murmur. When he's breathing there's just this little growling sound,'" Leah said.
Pierce was transferred from River Oaks to UMC for surgery, but went into congestive heart failure and respiratory failure. He was then airlifted to the Children's National Medical Center in Washington, D.C., for additional surgery on his heart.
"We were just in shock. You hear about this kind of stuff, you read about it, but you just don't think it's going to happen to you," BJ said.
Over the next two months, Pierce's condition worsened, and it became evident that he would need a new heart. Pierce was transferred again to Arkansas Children's Hospital in Little Rock, arriving New Years Day.
"Just the agony of waiting and wondering and not knowing--it's a miserable, miserable feeling," BJ said.
"It was a long journey," he continued. "... I've been to combat ... I mean I wasn't just over in a country typing papers. I was (on the) front line, kicking in doors. And that doesn't compare to the stress of having a child on a transplant list, being that critical."
Baby Pierce had been through so much--pulmonary hypertension, premature ventricular contraction (misfiring of the heart), infections, ventilators, blood clots, transfusions and heavy sedation--his body just couldn't handle the constant strain. On Jan. 15, Leah broke the news on her online journal.
"My little Pierce got his angel wings today around 3."
Through teary eyes, BJ said, "I know he's in heaven. He's whole again, not hurting. That's how I get peace with it. Every day I miss him, and I'll always miss him."
BJ and Leah live in Brandon with their children Katie, 13; Peyton, 6; and Patrick 2. They lost their son Jonathan, who would have been 9 this year, in a 2003 car accident.
The Helmses don't want other Mississippians to go through what they did; they want to bring awareness. And although they wonder if the outcome would have been different if a pediatric cardio unit had been in Mississippi for Pierce, they are glad it's here now.
"I think there was more of a lesson than just to have Pierce and lose him. ... God does everything for a reason. We might not understand it at the time, but you have to listen to him and keep on going." Leah said.
This year, the JFP will walk in memory of Baby Pierce. Last year, more than 3,000 people raised more than $300,000 to fund heart research and educational programs.
The American Heart Association's 2010 Metro Jackson Start! Heart Walk is Sunday, Oct. 10, at 2 p.m. with registration at 1 p.m. The free event features a kid's zone, music, health information, a one-mile route for heart disease and stroke survivors, and a free, heart-healthy lunch by Subway. Pets on leashes are welcome.
http://www.jacksonfreepress.com/index.php/site/comments/walking_for_pierce_092810/
Sign up at metrojacksonheartwalk. kintera.org/teamjfp to join team JFP. For more information, contact ShaWanda Jacome at shawanda@jacksonfreepress.com, or call 601-362-6121 ext. 16
Sunday, September 26, 2010
Barth Syndrome
The following information was taken from http://www.ninds.nih.gov/disorders/barth/barth.htm
What is Barth Syndrome?
Barth syndrome (BTHS) is a rare, genetic disorder of lipid metabolism that primarily affects males. It is caused by a mutation in the tafazzin gene (TAZ, also called G4.5) which leads to decreased production of an enzyme required to produce cardiolipin. Cardiolipin is an essential lipid that is important in energy metabolism. BTHS, which affects multiple body systems, is considered serious. Its main characteristics often include combinations in varying degrees of cardiomyopathy (a disorder of the heart muscle leading to a poorly functioning heart), neutropenia (a reduction in the number of white blood cells which may lead to an increased risk for bacterial infections), hypotonia (reduced muscle tone), muscle weakness, undeveloped skeletal muscles, delayed growth, lack of stamina, varying degrees of physical disability, and methylglutaconic aciduria (an increase in an organic acid that results in abnormal mitochondria function). Although some with BTHS may have all of these characteristics, others may have only one or two, and, thus, are often misdiagnosed. BTHS is an X-linked genetic condition passed from mother to son through the X chromosome. A mother who is a carrier of BTHS shows no signs or symptoms of the disorder herself. On average, 50 percent of children born to a carrier mother will inherit the defective gene, but only boys will develop symptoms. All daughters born to an affected male will be carriers.
Is there any treatment?
There is no specific treatment for Barth syndrome. Bacterial infections caused by neutropenia can be effectively treated with antibiotics. The drug granulocyte colony stimulating factor, or GCSF, can stimulate white cell production by the bone marrow and help combat infection. Medicines may be prescribed to control heart problems. The dietary supplement carnitine has aided some children with Barth syndrome but in others it has caused increasing muscle weakness and even precipitated heart failure. Only careful dietary monitoring directed by a physician or nutritionist familiar with the disorder can ensure proper caloric and nutritional intake.
What is the prognosis?
Early and accurate diagnosis is key to prolonged survival for boys born with Barth syndrome. Severe infections and cardiac failure are common causes of death in affected children.
What research is being done?
The NINDS supports research on genetic disorders such as Barth syndrome, including basic research on mitochondrial dysfunction and investigations of other inborn errors of metabolism. The 1996 discovery of the Barth gene is helping scientists and physicians better understand the metabolic and biochemical abnormalities seen in the disease and learn how genes cause heart disease, muscle weakness, and other problems in the body. The ultimate goal of this research is to find ways to prevent, treat, and cure these disorders.
To support Barth Syndrome awareness by purchasing this beautiful necklace, please visit the following link on etsy.com
http://www.etsy.com/listing/54285614/barth-syndrome-necklace
To donate or find out more information, please visit...
http://www.barthsyndrome.org/english/view.asp?x=1
What is Barth Syndrome?
Barth syndrome (BTHS) is a rare, genetic disorder of lipid metabolism that primarily affects males. It is caused by a mutation in the tafazzin gene (TAZ, also called G4.5) which leads to decreased production of an enzyme required to produce cardiolipin. Cardiolipin is an essential lipid that is important in energy metabolism. BTHS, which affects multiple body systems, is considered serious. Its main characteristics often include combinations in varying degrees of cardiomyopathy (a disorder of the heart muscle leading to a poorly functioning heart), neutropenia (a reduction in the number of white blood cells which may lead to an increased risk for bacterial infections), hypotonia (reduced muscle tone), muscle weakness, undeveloped skeletal muscles, delayed growth, lack of stamina, varying degrees of physical disability, and methylglutaconic aciduria (an increase in an organic acid that results in abnormal mitochondria function). Although some with BTHS may have all of these characteristics, others may have only one or two, and, thus, are often misdiagnosed. BTHS is an X-linked genetic condition passed from mother to son through the X chromosome. A mother who is a carrier of BTHS shows no signs or symptoms of the disorder herself. On average, 50 percent of children born to a carrier mother will inherit the defective gene, but only boys will develop symptoms. All daughters born to an affected male will be carriers.
Is there any treatment?
There is no specific treatment for Barth syndrome. Bacterial infections caused by neutropenia can be effectively treated with antibiotics. The drug granulocyte colony stimulating factor, or GCSF, can stimulate white cell production by the bone marrow and help combat infection. Medicines may be prescribed to control heart problems. The dietary supplement carnitine has aided some children with Barth syndrome but in others it has caused increasing muscle weakness and even precipitated heart failure. Only careful dietary monitoring directed by a physician or nutritionist familiar with the disorder can ensure proper caloric and nutritional intake.
What is the prognosis?
Early and accurate diagnosis is key to prolonged survival for boys born with Barth syndrome. Severe infections and cardiac failure are common causes of death in affected children.
What research is being done?
The NINDS supports research on genetic disorders such as Barth syndrome, including basic research on mitochondrial dysfunction and investigations of other inborn errors of metabolism. The 1996 discovery of the Barth gene is helping scientists and physicians better understand the metabolic and biochemical abnormalities seen in the disease and learn how genes cause heart disease, muscle weakness, and other problems in the body. The ultimate goal of this research is to find ways to prevent, treat, and cure these disorders.
To support Barth Syndrome awareness by purchasing this beautiful necklace, please visit the following link on etsy.com
http://www.etsy.com/listing/54285614/barth-syndrome-necklace
To donate or find out more information, please visit...
http://www.barthsyndrome.org/english/view.asp?x=1
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