Thursday, December 30, 2010

Happy New Year!


As I reflect back on 2010, I am in such awe of all the amazing stories I have heard and people I have met through our journey with Avery, and the beginning of the Cross Healed Hearts ministry. More and more, I see how God uses ordinary people to show his extraordinary glory. Some miraculously overcome the odds, surviving and thriving, as my Avery has, and others, well, they are even more incredible to me. The others I mention are those who have lost battles, yet they hold on to their faith, as God uses them to do amazing things while glorifying Him through their struggles. They allow God to heal their broken hearts, and fulfill His purpose in their lives. My prayer for this new year, is that you may do the same. Whether you are in the midst of the battle, or awaiting your next trial, I pray that you live out your purpose, and that you allow God to heal and lead you in ways that you never have before. I hope that many will continue to share their stories with us in 2011, in order to encourage and give hope to those in need. Share your faith and love with someone today. God bless, and Happy New Year to everyone!
In His Love,
Megan Bell

Jeremiah 29:11
"For I know the plans I have for you," says the LORD. "They are plans for good and not for disaster, to give you a future and a hope.

2 Corinthians 5:17
Therefore, if anyone is in Christ, he is a new creation; old things have passed away; behold, all things have become new.

1 Peter 1:3
Praise be to the God and Father of our Lord Jesus Christ! In his great mercy he has given us new birth into a living hope through the resurrection of Jesus Christ from the dead.

Philippians 3:13-14
No, dear brothers and sisters, I am still not all I should be, but I am focusing all my energies on this one thing: Forgetting the past and looking forward to what lies ahead, I strain to reach the end of the race and receive the prize for which God, through Christ Jesus, is calling us up to heaven.

Ecclesiastes 3:11
He has made everything beautiful in its time. He has also set eternity in the hearts of men; yet they cannot fathom what God has done from beginning to end.

Lamentations 3:22-24
The unfailing love of the LORD never ends! By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, "The LORD is my inheritance; therefore, I will hope in him!"

Isaiah 40:31
Yet those who wait for the LORD will gain new strength; they will mount up with wings like eagles, they will run and not get tired, they will walk and not become weary.

Riley, a Mother's Hero

Meet Miss Riley, a very special little girl, who is yet another example of God's extraordinary power and grace. Be sure to check out the Today Show clip of Riley and her family on the sidebar! A special thank you to Riley's mom, Angee, for not only sharing this journey, but for spreading awareness while loving and praying for others. God bless you guys! ♥

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand."
Isaiah 41:10













Riley was born December 30, 2008, with Transposition of the Great Arteries and Aortic Stenosis. We were expecting a perfectly healthy child, but when she came into this world, she was blue and lifeless. They rushed her to NICU without me holding her or kissing her...they just walked by and said something is wrong, but we will be back. About an hour later, 3 doctors came in and said, "You have a very, very sick child. Children's Hospital is coming to get her. There is something wrong with her heart." As they told me, I was in shock. "Her heart?" "What?" "What did I do?" "Is she gonna die?" So many thoughts rushed through my mind, and when I saw her hooked to IV's and a ventilator, as she was so small and beautiful, I lost it. I wished I could have taken her place. I should be holding her and feeding her, not praying for her to survive the Open Heart Surgery that was coming in a few days. They arrived and took her to Batson Children's Hospital.
Riley's first procedure was a cath at 8 hours old to prolong her life, so we could fly to D.C. for Open Heart Surgery. We got to D.C., and her oxygen began to drop and her body began to shut down due to lack of oxygen. They did her surgery at 5 days old. She had the "switch" procedure to basically switch her two main arteries so the blood could flow properly. She struggled during her surgery arresting twice, but came through like a little trooper. We stayed in CICU for a week, and moved to heart and kidney for two weeks because the fluid around her heart wasn't decreasing. The saddest thing, was watching my newborn baby with all these wires, tubes, and blood coming in and out, and I couldn't even hold her. Heck, I had no place to even touch her. I just sat by her bed praying hard as I cried. I could feel that I had no choice but to pray, and pray like never before. My faith was tested. I walked around talking to God, noone else, just God. I wanted so desperately to say, "Let her be ok," but I would just pray, "You know what I want, but please do your will. Please heal my baby." After being in the hospital the first month and half of her life, we were able to come home!!!!
We came home, and she is truly the sunshine in my life. She is a ball of energy, and such a sweet, sweet baby!! We have recently been diagnosed with Aortic Stenosis and a leaky Aortic Valve, so we do have more Open Heart Surgery in the future. We take it day to day, and we go with the flow. Riley is my hero and God's angel on earth.
CHD has taught our family to love more, hug more, and fight against all odds. Nothing can touch the faith that I have in God today. Everytime I see her, I see a miracle.
We pray more and take nothing for granted. We are very grateful for what we have. I have met amazing families, children, and supporters in the CHD community. I have also cried for these families and the babies who've lost their fight. I will remain an educator, advocator, and supporter OF CHD until all steps are taken to help these families and precious babies. The strange thing is, I am a mother of 4, and I had never even heard of CHD until my last child was born with one.

I hope one day you all can meet MY hero, my daughter, Riley.
God Bless!

Angee Brock

Today, Dec. 30, is also Miss Riley's birthday!! Happy Birthday precious girl!!!




For more on Little Riley please visit:

Facebook: http://www.facebook.com/profile.php?id=709102757

www.caringbridge.org/visit/rileynicolebrock

www.rileysmendedheart.blogspot.com

Angee and her family were on the Today Show, where an amazing song was sung in honor of their strength. It's so very neat! To see the clip, visit...

http://today.msnbc.msn.com/id/29125921/ns/today-kathie_lee_and_hoda/

Monday, December 27, 2010

In Remembrance of Baby Leanna

Rest in peace Baby LeAnna 10/18/10-12/23/10




The world may never notice
If a Snowdrop doesn't bloom,
Or even pause to wonder
If the petals fall too soon.
But every life that ever forms,
Or ever comes to be,
Touches the world in some small way
For all eternity.

The little one we long for
Was swiftly here and gone.
But the love that was then planted
Is a light that still shines on.
And though our arms are empty,
Our hearts know what to do.
Every beating of our hearts
Says that we do love you.

Author Unknown

Psalm 34:18
The Lord is close to the brokenhearted and saves those who are crushed in spirit

Every life has an important and specific purpose and impact on this world, no matter how brief. Thank you to all who prayed for this precious child. Little LeAnna fought very hard to stay with us, but God decided it was time to call her home.
Please continue to lift parents, Anna and Jeremy, up in prayer as they find a way through their grief. Funeral services were held this morning.

Dear Lord,
Please help this family in this time of loss and overwhelming grief. We don't understand why life can be filled with this pain and heartache.We will wait on you and not despair; We will quietly wait for your salvation. Our hearts may be crushed, but we know that you will not abandon us forever. Please show Anna and Jeremy your compassion, Lord. Help them through the pain so that they will hope in you again. We believe this promise in your Word to send us fresh mercy each day. Though they may not be able to see past today, we trust your great love will never fail them.
Amen

Thursday, December 23, 2010

Prayers Please

While so many of us have so very much to be thankful for this Christmas, others, while thankful, are going through (or preparing for) difficult times. Please be in continued prayer for those in need, and remember just how fortunate we are to have a God who loves us and hears us when we call on him.




Baby Leanna: The process has begun to take LeAnna off ECMO. They say it could take up to 4.5 hours to complete. The family is not allowed in during this. She has been fighting sepsis and pneumonia, and they discovered a brain bleed last night.



Little Caroline: Caroline has had two open heart surgeries in her short time here (2 1/2 years) and has one to go. Her family is planning on traveling to Philadelphia, Pennsylvania at the end of February or the first part of March for Caroline's surgery. During this time, Caroline's parents will both will be out of work. They are selling t-shirts in order to raise money to help pay their bills back home, for food, and to pay for their stay at the Ronald McDonald House. The t-shirts are $15. For more information please visit http://thepuckettadventure.blogspot.com/2010/12/caroline-superhero-t-shirts.html
You may also read more about Caroline on this blog.



Sweet Sydney: Sydney (who has William's Syndrome) will be having a OHS through a hybrid procedure done in the OR at Batson as soon as February. They will be placing large stints in her arteries to open them up because the ballooning in the cath lab is no longer working. I will be posting more on Sydney and her story soon.

If you know of anyone who would like to be added to our prayer list or prayer warrior group, please email Megan at megbeau2@yahoo.com. God Bless!

Saturday, December 18, 2010

Baby Leanna


Please be in fervent prayer for baby Leanna right now. She had OHS on Tuesday, and has had many complications since. She has been on and off life support, on kidney dialysis, ECMO, and is now fighting a blood infection. Her life is very delicate right now, and she desperately needs to be lifted up to the ultimate Healer. There is a food drive going on for her family today at the Pearl Brandon Wal-Mart through MS Mended Little Hearts at 3:00 P.M. Her family is staying at the Ronald McDonald House in Jackson, and also has 2 other young children.

Tuesday, November 30, 2010

Update

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.

Wednesday, November 24, 2010

Whatever You're Doing (Something Heavenly) - Sanctus Real

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 Overcomes a Heart Defect

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/

Pierce Allen Helms Memorial

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.

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.

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

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!

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

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:



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

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

Sunday, September 26, 2010

Jeremy Camp Devotional - "Healing Hand of God"

Healing Begins by Tenth Avenue North (with lyrics)

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

Saturday, September 25, 2010

About Jenny

Through a mutual Facebook friend, I recently came in contact with Jenny Wakenell. She is a college graduate student with Turner's Syndrome. As you will read, TS doesn't hold Jenny back, she is an awesome example of what hard work and determination can do. Thank you to Mrs. Wakenell and Jenny for sharing with CHH! Jenny Wakenell is really doing something to make a difference!!






Due to Jenny's very busy schedule in school, her kind mom, Maureen, sent me this part of her story....
Jenny just started graduate school at the University of Michigan. Jenny wants to get a master’s degree in social work, is carrying a full schedule of classes and began an internship this semester. Jenny wasn’t diagnosed with Turner Syndrome until she was almost fourteen years old and just entering high-school. We were sent to a specialist (pediatric endocrinologist) because she was so very short (4’5”) at the time. We just thought it might be a question of more vitamins or something since we did have a number of short relatives. We were shocked to learn it was due to Turner Syndrome, a condition we never heard of. Jenny was immediately put on high doses of human growth hormone and gained seven inches in three years. Since her diagnosis in 2002, my husband, Jenny and I have made it our mission to learn all that we can about TS as well as NLD (Nonverbal Learning Disabilities) which can also be a result of Turner Syndrome. NLD can affect girls with TS in varying degrees. NLD may cause problems with motor skills, visual/spatial/organizational misperceptions and/or social difficulties. Therefore, early identification is extremely important. Fortunately, Jenny has always been an “honor student” both in her Catholic elementary and high schools. In college, she won several scholarships and awards, completed two honors programs and graduated with “high distinction.” Jenny does have some Nonverbal Learning Disabilities though, but through hard work, dedication and determination, she has done extremely well academically. (She’s usually doing homework until the “wee hours” of the morning.) Since 2002, we have attended all the national Turner Syndrome Society annual conferences. This organization (based in Houston) can provide a lot of great information. In fact, Jenny is a volunteer on their e-board to answer inquiries and offer personal insights to people around the country. We have also been to a TS conference in Canada, and Jenny has been to several specialized camps for girls with TS. Jenny has also participated in a number of medical research studies, such as Dr. Allan Reiss’ neurological one at Stanford University, Dr. Carolyn Bondy’s TS biological profile at the National Institute of Health and Dr. Michael Silberbach’s “Healthy Heart Study,” among others. Even though we didn’t know Jenny had TS when she was growing up, we now have a much better understanding of why certain things happened when she was younger (such as her trouble learning to ride a two-wheel bike - a “balance” issue most probably connected with NLD, she eventually was able to master her bicycle, but it did take much longer than her two older brothers). Anyway, Jenny has developed an awareness campaign for TS/NLD. In addition to giving speeches and seminars, she has created a travelling self-teaching exhibit, “The Turner Town Project.” This interactive display is a collection of dollhouses with storyboards in front of each building depicting some of the everyday challenges of a girl with TS/NLD from birth through her later teen-age years. Medical posters, a reference/lending library, comparison growth charts, resource guides, “real-life” photos, etc. also accompany the project. If you would like to read more about “Turner Town,” there are some pictures on http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign.

This section was written by Jenny on her dosomething.org project page...
Just before entering high school, I was shocked to be diagnosed with Turner Syndrome (and Nonverbal Learning Disabilities) by a pediatric endocrinologist. My regular family physician had not previously treated anyone with Turner Syndrome. Since I never heard of these conditions before, I became worried and did not know what health impairments might occur from this disorder. I decided to learn all that I could about TS and NLD. My life suddenly took a new direction as I became immersed in research, awareness, and advocacy. It was important to meet experts, make contacts, reach out to others, and examine my own feelings about disabilities. I’ve attended medical camps and national conferences around the US and Canada and talked with specialists and authors. I have traveled to Stanford University, the National Institute of Health and other places to participate in vital research studies. It is my sincere hope that my involvement in these studies will lead to better recognition, identification and treatment for anyone afflicted with TS or NLD. I am a volunteer with the Turner Syndrome Society for email/phone inquiries and interviews. (Sometimes, students are seeking a first-hand account for school reports, but other callers are looking for advice or reassurance.) I have also helped out with the younger girls at the national conferences – mentoring is especially gratifying to me. Little is known about TS and NLD among the general public, teachers, and even many doctors, so I created a multi-media awareness campaign as an individual initiative for a Girl Scout Gold Award. I did not want others to experience the negative feelings of uncertainty and anguish that I experienced. I designed workshops and seminars and have given speaking presentations to both adult and youth audiences about these medical issues. I constructed a self-teaching traveling exhibit, “Turner Town,” a collection of dollhouses with storyboards about some of the troubles and triumphs of a girl with TS and NLD. In the stories, the community rallies around her and supports her through the obstacles she encounters. With proceeds from private fundraisers and my own personal funds, I established a specialized library of books about TS and NLD. Medical posters, photo collages, a resource guidebook, growth charts, tot lot block set and children’s activities are included to provide more detailed information. Currently, I’m raising money to purchase a trailer to bring the exhibit to the TSSUS Conference in Indianapolis this July.


Please check out Jenny's efforts and learn more about TS at : http://www.dosomething.org/project/turning-wheels-turner-syndrome-and-nonverbal-learning-disabilities-awareness-campaign

Great news!

http://www.businesswire.com/news/home/20100921007164/en/Newborn-Coalition-Applauds-Federal-Advisory-Committee-Recommendation

See this link for exciting news on screening for Critical Cyanotic Congenital Heart Disease to the core panel for universal screening of all newborns in the United States.

CHH T-Shirt Fundaiser Payment

I will begin posting who I've received money from for t-shirt orders, so no one worried that it didn't make it through the mail! I know I will never remember to contact each individual person as I receive checks, so this will hopefully be an easier way. Thanks so much to everyone who is helping with this project! God Bless! M

Leigh Ann P., Erin H., Tish M., Faye B., Cindy B., Andrea W., Misty N., Carol P., Leah H., Krista R., Jenny K., Lisa S., Renee W., Krystal W., Shirley, Laura C., Megan F., Laura B., Melinda P., Ann E.,


I'll continue to update this list as I receive payment. Thanks Again!!

Tuesday, September 21, 2010

For when I am weak, then I am strong.

Three times I pleaded with the Lord to take it (my affliction) away from me. But He said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. That is why, for Christ’s sake, I delight in weaknesses, in insults, in hardships, in persecutions, in difficulties. For when I am weak, then I am strong.
2 Corinthians 12:8-10

Caroline's Story

The following story was given to me by Katie Ard Puckett who lives here in the Jackson area. I actually met Katie's mother, Mrs. Ard, when I returned to work after my Avery was born and had heart surgery. She shared pictures of Caroline with me, and basically told me that through all the hardship, there is much joy and happiness. I appreciated that so much, and hope others can see that through this story as well. I was so glad Katie agreed to share their story with us, and pray that God will continue to bless and heal sweet little Caroline. Thanks Katie and Family!


Caroline, 5 Days Old, after her 1st Open Heart Surgery

Caroline, today


Emily Caroline Puckett was born on Thursday, July 10, 2008. She was born with a serious heart defect called Hypoplastic Left Heart Syndrome (HLHS). This basically means that the left side of her heart is severely underdeveloped or nonexistent. To correct this, she must undergo a 3-stage surgical process. She had her first surgery (Norwood) on July 15, 2008, at Children's Hospital of Philadelphia (CHOP). After being in Philadelphia for a month, they let us come home. Caroline had many obstacles in those few months at home. After Caroline’s first round of immunizations she had seizures and had to be hospitalized at Blair E. Batson Children’s Hospital in Jackson for one week. In October 2008, Caroline went for a routine cardiology appointment and her oxygen readings were very low. Her cardiologist, Dr. Jennifer Shores, decided to keep Caroline overnight and schedule a heart catherization for the next day. The next morning, Caroline went in for a heart cath and they found that the shunt in her heart was clotted almost completely. The Dr. did not feel comfortable fixing the problem here, and therefore wanted us to go back to CHOP for the procedure.

When Caroline came back from her heart cath they brought her to me and put her in my arms while telling me that we were going to have to go immediately back to CHOP to have this fixed. Everything after that moment was a blur for me, but the nurses came in and took her from me to put her in the ICU setting to keep a better watch on her while we were going home and gathering our things. Within minutes of them taking Caroline from my arms she crashed and they told me to kiss her and tell her I loved her and walk away so that they could do all they could to help my baby. I can’t begin to tell you what that felt like. I was so powerless and my baby was slipping away from me as I watched. Caroline was emergently intubated and kept comfortable until they could arrange for an air jet to come pick us up. We arrived in Philadelphia in the middle of the night and they worked on her for hours to stabilize her for another cath the next morning. She was able to have the catherization and her shunt was stinted so that blood could move freely. The surgeon came to me that day and told me that 10% of these babies die suddenly at home between the first and second stage surgeries because of this very reason. If we had not had a Dr. appointment and been in the hospital when this happened, we would not have our little girl today. Caroline’s vocal cords were damaged during the emergency intubation and because of this, we had to thicken her formula to a nectar consistency to prevent aspiration. Shortly after we returned home from Philadelphia Caroline stopped eating by mouth because of the strain it was putting on her heart. We spent another 10 days at Blair Batson trying to work out feeding issues and learning how to deal with an NG tube for feeding that ran up her nose and down her throat. Caroline’s 2nd stage surgery was scheduled for December 5, 2008 and she had a scheduled pre-surgery heart cath planned for December 1st. We were very fortunate to have Sanderson Farms provide us with a flight to PA for our 2nd surgery. They told us that they would arrange for us to be taken if we could leave Nov. 25th. We spent Thanksgiving holidays at the Ronald McDonald House in Philadelphia and took Caroline to the hospital that Friday to be weened off of blood thinners. The heart cath that Caroline had on Dec. 1st showed that her aorta had narrowed and needed to be ballooned and reopened for optimal blood flow. Because of the procedure done during the heart cath, Caroline’s surgery would have to be postponed at least 4 weeks. The doctors did not want us flying back and forth between Philadelphia and Mississippi and decided that it would be best to keep Caroline in the hospital until surgery. Caroline had her 2nd stage (Glenn) surgery on December 22, 2008. After surgery Caroline did really well and was extubated very quickly and taken off a lot of the post-surgery meds. On December 23rd, in the middle of the night, I received a phone call saying that she coded and had to be re-intubated. That day was a very hard day for us because they kept her almost in a paralytic state the entire day and night. Christmas eve was a much better day and she started to slowly come around. By Christmas morning, they extubated Caroline and she was awake and aware enough to “open” her presents that had been provided by the hospital and to take a picture with Santa Claus. The next 2 weeks were spent being taken off medicines and working with physical and occupational therapy to start getting geared towards going home. Caroline never picked back up eating and the doctors at CHOP thought that it would be in her best interest to have a surgical procedure to insert a G-tube into her stomach for feeding. Finally, on January 22, 2009 they let us go home. After spending Thanksgiving, Christmas and New Years in Philadelphia, news of going home was music to our ears.
Caroline has been doing very good since January and has been living a VERY happy life. She goes to the cardiologist , now, only once every 3 months. She had to have a heart cath in May 2009 to balloon her aorta again and everything went really well. Caroline has one planned surgery left to go, and will be traveling back to Philadelphia in the spring. We could not have made it this far without the outpouring of love and support that we have received along the way. It has been a very long and hard journey that is not anywhere close to being over, but we are so very fortunate to have her. We hope to bring more awareness to the growing number of children born with congenital heart defects.
Sincerely,

Adam, Katie and Caroline Puckett

“1 in 100 babies is born with a congenital heart defect. WHAT IF THAT ONE WAS YOURS?”

Saturday, September 18, 2010

Working on Blog!

If you happen to check out the blog while I am working on it, I apologize....I am trying to change things up a bit this weekend. Thanks for your patience!

In the words of Matt Hammitt

This insert was taken from the blog Bowen's Heart by Matt Hammitt of the band Sanctus Real. As I read this, I couldn't help but remember how surreal it was for me to see my child's heart beating through her open chest. The things heart families see and experience are undescribable.
For more on his story, visit http://bowensheart.com/
God has already used them so much through their music, I can only imagine what greatness will come out of this experience. God is always at work in our lives, take note! Please continue to pray for this family.



The Following is From My Journal

9.17.10

This morning is the last time I’ll get to peer through the window to Bowen’s beating heart. I can’t believe, that in such a short amount of time, it’s become normal for me to look down at my son with his little chest wide open. A friend told me that I’ve seen too much, but I’m realizing that I might not see enough. Everything I’ve watched happen in this hospital, all the pain I’ve felt, is deepening my faith, strengthening my marriage, and molding my character. As I lovingly stared into Bowen’s eyes just before midnight, my face only inches from his chest, I thought, “this love is an awesome mess.” I know I’m not the first person to think or to say something like that. Many great works of art have titles that are reminiscent of those words. I believe it’s because tension is the place where the worst of life and the best of true hope meet to unveil our eyes to God’s artistic work of redemption. What a mighty and creatively loving God we serve. He allows us to know great pain, so that we can know the greater pleasure of trading it in for purpose.