Baby Leanna Update:
LeAnna had the cath today, they weren't satisfied with the results, so the cath has been left in as there will be another in the very near future. She lost a lot of blood so she is getting a transfusion now.
There will definately be a valve replacement in her future.
New...Baby Bryon Added to Prayer List:
Bryon, 2 months old, has a chd called Truncus arteriousis. He has had two Open heart surgeries, the first at 8 days old and the second in just the past few days. This family lives 4 hours away from the BEBCH and is staying at RMH. Mom, Nannette Pounders, who is a nurse, was prenatally diagnosed. Please keep this family in your prayers as well.
Tuesday, November 30, 2010
Wednesday, November 24, 2010
Baby Leanna
Please keep precious newborn, Leanna, in your prayers. She was born 7 weeks early and it has been discovered she has a CHD. She was supposed to be going home, and ended up taking a turn for the worse. Please send prayers up for her, her family, and all involved.
Baby Bowen on ABC News with Diane Sawyer!
Bowen's Heart: Family Rallies Around Baby Boy Fighting Rare Heart Disease
Bowen Hammitt's Small Heart Is a Big Inspiration for his Family
By JAMES HILL
article taken from abcnews.go.com
Bowen Matthew Hammitt came into this world on Sept. 9, at 7 pounds, 7 ounces, with a wisp of light brown hair and a heart condition that threatened his survival.
"When he came out, I thought he would look different," says his mother, Sarah Hammitt, 31. "[But] he looked totally fine. So it was hard to see a baby that looked so beautiful and know that his insides weren't perfect. I kind of felt like, This isn't real. It couldn't be.'"
Bowen was born with Hypoplastic Left Heart Syndrome, a rare congenital defect in which the left side of the heart is dangerously underdeveloped. In babies with HLHS, the left side of the heart cannot pump blood, so the right side must supply both the lungs and the body. Without surgical intervention, the condition is fatal.
"Any parent would say that watching your child go through something like that is much worse than going through it yourself," says Bowen's father, Matt Hammitt, 31. "You want to take their place, but you can't. That's been the most difficult part for me."
'All of Me'
The Hammitts learned of Bowen's condition after an ultrasound about halfway through Sarah's pregnancy. Already the parents of two girls, Emmy, 4, and Claire, 2, Matt and Sarah struggled with their emotions after receiving the news. Bowen would face three risky surgeries early in his life to repair his heart. Even with the advances in surgical treatment, about 30 percent of babies born with HLHS die before the age of five.
"It was hard to know that I had to fall in love with somebody that had those odds," says Sarah.
Matt Hammitt, who is the lead singer of the Grammy-nominated Christian rock band, Sanctus Real, turned to music for solace. "I had all kinds of questions and emotions, and the way for me to deal with that was writing music," he says. This winter, he plans to record an album of songs dedicated to his son and to other families going through difficult times with sick children.
for more see the Hammitt's blog:
http://bowensheart.com/
Bowen Hammitt's Small Heart Is a Big Inspiration for his Family
By JAMES HILL
article taken from abcnews.go.com
Bowen Matthew Hammitt came into this world on Sept. 9, at 7 pounds, 7 ounces, with a wisp of light brown hair and a heart condition that threatened his survival.
"When he came out, I thought he would look different," says his mother, Sarah Hammitt, 31. "[But] he looked totally fine. So it was hard to see a baby that looked so beautiful and know that his insides weren't perfect. I kind of felt like, This isn't real. It couldn't be.'"
Bowen was born with Hypoplastic Left Heart Syndrome, a rare congenital defect in which the left side of the heart is dangerously underdeveloped. In babies with HLHS, the left side of the heart cannot pump blood, so the right side must supply both the lungs and the body. Without surgical intervention, the condition is fatal.
"Any parent would say that watching your child go through something like that is much worse than going through it yourself," says Bowen's father, Matt Hammitt, 31. "You want to take their place, but you can't. That's been the most difficult part for me."
'All of Me'
The Hammitts learned of Bowen's condition after an ultrasound about halfway through Sarah's pregnancy. Already the parents of two girls, Emmy, 4, and Claire, 2, Matt and Sarah struggled with their emotions after receiving the news. Bowen would face three risky surgeries early in his life to repair his heart. Even with the advances in surgical treatment, about 30 percent of babies born with HLHS die before the age of five.
"It was hard to know that I had to fall in love with somebody that had those odds," says Sarah.
Matt Hammitt, who is the lead singer of the Grammy-nominated Christian rock band, Sanctus Real, turned to music for solace. "I had all kinds of questions and emotions, and the way for me to deal with that was writing music," he says. This winter, he plans to record an album of songs dedicated to his son and to other families going through difficult times with sick children.
for more see the Hammitt's blog:
http://bowensheart.com/
Memorial Soccer Tournament to be held in honor of Baby Pierce
This is a post from Leah Helms's blog that I wanted to share. You can also read about Leah's story in the Jackson Free Press article I posted some time ago, as well as see the memorial video I posted prior to this one. I watched Matt Hammitt and his family with son Bowen on the news tonight, and it made me think of Leah. Matt said "turn your pain into purpose," (which I think will be my new favorite quote) and that is just what Leah is doing. If you'd like to follow Leah on her journey, please check out her blog. You can find the link on the side bar. God Bless! Megan
Baby Pierce
Well, I know many of you are wondering how Pierce has anything in common with soccer. I laugh and think back to the weekend before he was born. My oldest had a soccer tournament that weekend. I was so determined to walk myself into labor on those fields in my brown and pink water boots. We were there until 10 p.m. that Sunday night. Our soccer team won 1st place and we were waiting for our medals. I never dreamed the next morning that I would be preparing myself for a c-section or the condition of Pierce's heart at the time of his birth. My other four children were normal fast deliveries and they were all healthy and well. I learned through that day to not take it for granted, my other children's health.
We live in the soccer fields and I often imagined what it would be like after Pierce was born, caring him in a back pack, as I walked up and down the sidelines yelling at the girls.
We have since returned to the soccer fields after coming home. I have been working with Brandon Soccer League to host a Memorial Soccer Tournament. The thought makes me smile and feel proud, but the other side of me cries. I never though that we would be hosting a "Memorial" tournament. I think back before Pierce was born and how I worried and wondered how I was going to get all three boys to the soccer fields and just yet alone feed them. Three boys,...that's A LOT of food!!
God blessed me in more ways then I can even try to share with you. Pierce was here for a reason. I have connected with so many new friends and People through him. God has continued to bless me and guide me through Pierce's Legacy. Brandon Soccer League is hosting a Soccer Tournament for my little Pierce. This year, all proceeds will go to the Mississippi Mended Little Hearts. This group of moms reached out to me in the very first week while we were in Washington D.C. They continued to reach out to me while we were in Little Rock and then upon coming home. They held a food drive for my family once we made it back and have continued to bless me with hope, encouragement and friendship. I want to give back what they have giving me during and after my journey with Pierce.
So, how does Pierce and Soccer go together? Through Pierce and our love for soccer, and the Brandon Soccer League.This event will be a great way for people to learn more about CHD and the Mississippi Mended Hearts. Children will be playing for a cause to help other children and families with CHD. With God's help and Him guiding each of us, this will be a wonderful event that will touch peoples heart and make them aware of Congenital Heart Defects.
Please share this event with your friends and families.
Baby Pierce
Well, I know many of you are wondering how Pierce has anything in common with soccer. I laugh and think back to the weekend before he was born. My oldest had a soccer tournament that weekend. I was so determined to walk myself into labor on those fields in my brown and pink water boots. We were there until 10 p.m. that Sunday night. Our soccer team won 1st place and we were waiting for our medals. I never dreamed the next morning that I would be preparing myself for a c-section or the condition of Pierce's heart at the time of his birth. My other four children were normal fast deliveries and they were all healthy and well. I learned through that day to not take it for granted, my other children's health.
We live in the soccer fields and I often imagined what it would be like after Pierce was born, caring him in a back pack, as I walked up and down the sidelines yelling at the girls.
We have since returned to the soccer fields after coming home. I have been working with Brandon Soccer League to host a Memorial Soccer Tournament. The thought makes me smile and feel proud, but the other side of me cries. I never though that we would be hosting a "Memorial" tournament. I think back before Pierce was born and how I worried and wondered how I was going to get all three boys to the soccer fields and just yet alone feed them. Three boys,...that's A LOT of food!!
God blessed me in more ways then I can even try to share with you. Pierce was here for a reason. I have connected with so many new friends and People through him. God has continued to bless me and guide me through Pierce's Legacy. Brandon Soccer League is hosting a Soccer Tournament for my little Pierce. This year, all proceeds will go to the Mississippi Mended Little Hearts. This group of moms reached out to me in the very first week while we were in Washington D.C. They continued to reach out to me while we were in Little Rock and then upon coming home. They held a food drive for my family once we made it back and have continued to bless me with hope, encouragement and friendship. I want to give back what they have giving me during and after my journey with Pierce.
So, how does Pierce and Soccer go together? Through Pierce and our love for soccer, and the Brandon Soccer League.This event will be a great way for people to learn more about CHD and the Mississippi Mended Hearts. Children will be playing for a cause to help other children and families with CHD. With God's help and Him guiding each of us, this will be a wonderful event that will touch peoples heart and make them aware of Congenital Heart Defects.
Please share this event with your friends and families.
Thursday, November 18, 2010
What a Story!
Dr. Catherine Ward (center) , a geneticist at Akron Children's Hospital in Akron, Ohio, laughs with Joleen Viront (left) and Jennifer Stein, both genetic counselors on Nov. 1, 2007. The 4-foot, 8-inch geneticist has Turner syndrome, a genetic disorder that causes short stature. (Lew Stamp/Akron Beacon Journal)
Doctor's size is a big benefit
Geneticist tells parents not to limit daughters
By Cheryl Powell
Beacon Journal medical writer
Dr. Catherine Ward might be small in stature, but she's definitely not short on ambition and dedication to helping patients.
After all, the 4-foot, 8-inch geneticist at Akron Children's Hospital knows firsthand the struggles that can go along with having a genetic disorder.
During her childhood, her own doctor became suspicious about what Ward now jokingly refers to as her ''lack of growth curve'' and recommended testing to find out the reason for her failure to grow.
Consequently, Ward was diagnosed at age 7 with Turner syndrome, a chromosomal condition that affects about one in every 2,000 to 2,500 girls and women.
Females with Turner syndrome are missing all or part of their second sex chromosome. Those with the syndrome usually are short, experience ovarian failure and infertility and can suffer from other health problems.
But Ward hasn't let her medical condition stop her from becoming a doctor, as well as a respected national leader for the thousands of girls and women who share her diagnosis.
Starting in January, Ward will take over as president of the Turner Syndrome Society of the United States. The national nonprofit group is dedicated to creating awareness, promoting research and providing support for patients and families.
''This has just been part of my life,'' Ward said of her genetic condition. ''I think I have pretty much tried to make it part of my life but not an overwhelming issue.
''We're women who do everything
we want to do, for the most part.''
In her national role as a spokeswoman and advocate for Turner syndrome, Ward wants to get more medical experts involved in the organization and its efforts.
''One of the things I'd love to do — and I feel I'm in a unique position to do — is expand the professional participation,'' she said.
Syndrome symptoms
Turner syndrome first was recognized by Dr. Henry Turner, who published a report in 1938 about seven girls who shared a number of features.
Though every patient differs, the majority of girls and women with Turner syndrome are less than 5 feet tall and unable to conceive a baby without special medical treatment.
Other features can include arms that turn out slightly at the elbow, webbing of the neck, low hairline in the back, a narrow and high-arched palate, broad chest, and narrow fingernails and toenails that point upward.
Affected girls and women also are at increased risk for heart defects, high blood pressure, kidney problems, osteoporosis, hypothyroidism, immune system problems, ear infections and hearing loss.
The syndrome does not affect intelligence, though some females can have specific learning disabilities in nonverbal areas.
Some patients are diagnosed before or shortly after birth, while others aren't diagnosed until they fail to grow as children, Ward said. Others don't discover they have the disorder until they fail to begin menstruating during adolescence or they abruptly stop having periods at an early age because of ovarian failure.
Hormone treatment
When Ward was diagnosed with the chromosomal disorder in the early 1980s, growth hormone therapy was considered experimental and rarely used, she said.
Today, most girls are treated with growth hormone to help them grow faster and potentially reach a normal adult height of more than 5 feet.
''Growth hormone is now a standard of care for Turner syndrome,'' she said.
Many Turner syndrome patients also require estrogen therapy to start puberty.
Ward, 34, joined the genetics department at Children's about two years ago after completing her genetics fellowship at the University of Texas Health Science Center in Houston.
In her role at Children's, Ward works with people who are being tested and treated for a variety of genetic disorders.
She also serves on the multi-disciplinary team for the hospital's skeletal dysplasia clinic, where, she said with a grin, she works regularly with patients ''who are smaller than me.''
Patients often look at her and say with excitement, ''Hey, you're little, too!''
If people ask, she said, she'll talk about her condition, especially with families who are discovering their daughter has Turner syndrome.
''I really feel like that's helpful,'' she said.
Her own experiences have prompted her to encourage parents not to limit young patients who are diagnosed with genetic disorders.
Helping parents
Ward's parents (both educators) held her to the same high standards that they set for her siblings and expected her to excel, she said.
''I think that was something that's been very important to me and I talk about a lot with Turner syndrome parents,'' she said.
Lori Jones and her husband, Ken, are taking that approach with their 12-year-old daughter, Whitney, who was diagnosed with Turner syndrome about two years ago.
''We tell her, don't let the frustration bother her,'' Lori Jones said. ''She can do whatever she wants.''
The Cuyahoga Falls couple and their daughter attended an inaugural Turner syndrome regional conference that Ward helped organize at Children's in January. Another conference is planned for next January.
Gaining acceptance
''Having her here is helpful,'' Lori Jones said of Ward, ''because she's going to bring awareness.''
Whitney said she enjoyed meeting Ward and others with Turner syndrome.
''I felt it was good to talk with her, to know that I'm not the only person who has it,'' Whitney said.
The seventh-grader at Immaculate Heart of Mary said it used to bother her when other children made fun of her because she's short.
Whitney is about 50 inches tall. The average height for a girl her age is at least 60 inches, or about 5 feet tall.
''As I got older, I learned to accept myself more,'' Whitney said. ''Everyone is special in their own way. We just need to accept ourselves for who we are and don't care what other people think.''
--------------------------------------------------------------------------------
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com.
Wednesday, November 17, 2010
Cameron with his CHH Pillow!
Cameron is now home, recovered from his open heart surgery, and doing great!
Baby LeAnna
Please be in prayer for Baby LeAnna and her mother Anna. She is 7 weeks premature born with CHD. She is currently in the hospital.
Lauren C. with her CHH Pillow!
Miss Lauren with her CHH pillow in California! Lauren is an adult CHDer, yuo can read her story on this blog!
Saturday, November 13, 2010
Icing Smiles
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.
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.
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
Subscribe to:
Posts (Atom)