|
|
|
|
|
|
Chapter Spotlight: Dallas/Ft. Worth
|
Chapter Spotlight
|
The It's My Heart
Dallas/Ft. Worth Chapter was originally a small support group called Hearts and
Souls based out of Cook Children's Hospital in Fort Worth, TX. It was put
together by a group of parents who saw the need to get support from other
families whose child also had a heart defect. After a few years the group
seemed to lose support and fizzled out. A couple of years later, another parent
also saw the need for a support group and brought back Hearts and Souls for the
second time. Not even a year after
the group reassembled, we were approached by Corrie Stassen from Its My Heart (National)
to see if we would like to become the Fort Worth chapter of Its My Heart. We finally
put it to a vote amongst all of our members and decided that it would be in our
best interest to become It's My Heart Fort Worth Chapter. We were all pretty
excited to become a part of a national organization with the same goal of
support and awareness for congenital heart defects.
Since then we have been avidly promoting
CHD awareness by providing comfort bags at Cook children's, fundraising,
holding events and monthly support group meetings as well as getting our literature out as much as we can. Most recently
we put on our 1st annual Run/walk for the Dallas/fort worth area. It
was a great turn for our first year. We had a great time raising awareness and
cannot wait for next year. We also just went to a Texas Rangers game as a
group. There were over 100 Its My Heart members in attendance. This was our
second year being invited to the ballpark.
We have a great
team of officers without which our chapter would not be possible. Our officers
are Miranda Tamez: President,
Woody Woodworth: Treasurer, Sherri Blazek-Woodworth: Secretary, Patty Alvarez:
Comfort Bag Officer, Beth Loviscek: Newsletter editor, and last but not least
Carolina Lara: Events coordinator. We have also had a great deal of support
from our hospital coordinator Kathy Grieser who is also on our board of
directors.
Our goal is to continue
to grow, spread awareness, and reach out to as many heart families as possible.
|
|
New Address |
 Our office has moved!
The It's My Heart, Inc National Office has moved to:
1775 St. James Place, Suite 130
Houston, TX 77056
Please update your address book and make sure any reoccurring employer match donations are updated as well.
|
|
IMH in the News
|
The following article was published in the Echo Press Newspaper in Alexandria, Minnesota and spotlights four families from the new IMH chapter in Minnesota. We have printed an excerpt from the article. To view the article in its entirety click here.
Matters of the heart
Published May 14, 2010
It's a dfficult
thing for parents to go through - expecting a healthy baby, only to discover
when the bundle of joy arrives that there are serious, and completely
unexpected, complications. Four area families know only too well the heartache
of having a child born with a congenital heart disease. In some cases, the
families are celebrating successful surgeries and medical treatments, grateful
their babies survived and are healthy.But some parents aren't so lucky - their
children didn't survive. And they struggle every day with the pain and
loneliness of having their little ones' lives taken by matters of the heart.
What is a
congenital heart defect?
A congenital
heart defect (CHD) is a structural problem with the heart that is present at
birth. It results when a mishap occurs during heart development soon after
conception and often before the mother is aware she is pregnant. Defects range
in severity from simple problems, such as "holes" between the chambers of the
heart, to severe malformations, such as complete absence of one or more
chambers or valves. Treatment can include medicine, surgery, other medical
procedures and heart transplants, depending on the severity of the defect.
Unlike most people who have children with heart problems, Jesse and Hannah Ross of Miltona were prewarned. At a routine ultrasound at 20 weeks, doctors discovered that the Ross' unborn child had HLHS. Hazel was flown
to Rochester (the Heidelbergers currently reside in Mankato) where she was
diagnosed with HLHS. She made it through two surgeries, but lost her battle for
life on January 14. "It's a minute to minute thing," Angela said of how they
are coping with their daughter's death. "It's very lonely." That feeling of
having no one to turn to prompted Angela to start a Minnesota chapter of It's
My Heart, an organization dedicated to raising awareness of CHD. The group also
provides a place for those who have experienced the difficulties of having a
child with CHD to meet, share stories, encourage each other, and get
information regarding the disease. It's My Heart of Southern Minnesota became
official with the state on April 26, with Angela Heidelberger serving as
president.
Ways to Help:
· The Ross
family - A spaghetti feed and silent auction are set for Saturday, May 22 at
the Elks Lodge in Alexandria from 3 to 8 p.m.
· The
Duchene family - An account to help defray medical costs has been set up at
Bremer Bank in Alexandria. Make checks payable to Emma Duchene Benefit Fund and
send to Bremer Bank, Emma Duchene Benefit Fund, 2210 Highway 29 South,
Alexandria, MN 56308.
· It's My
Heart, Inc. - Southern Minnesota Chapter is organizing a "Walk for CHD" to be
held Saturday, September 11 at the track at Jefferson High School in
Alexandria. Details will be published when they become available. To donate or
support the event, contact Angela Heidelberger at (507) 779-2489 or by e-mail
at angela.heidelberger@itsmyheart.org.
A Facebook
page has also been set up; visit the website www.facebook.com and do a search
for "It's My Heart of Southern Minnesota."
|
IMH National Conference
|
 |
|
 |
|
Quote of the Month |
A single sunbeam is enough to drive away many shadows.
St. Francis of Assisi
|
National Officers
& Official Volunteers
|
Corrie Stassen
Executive Director
Katy Wolff
Vice President
Lauren Simpson
Secretary
Alexis Durham
Treasurer
Anissa Speight
Medical Advisory Board Coordinator
Laurie Hutchings
Family Matching Director
Ann Martin
Literature Distribution
Ashley Auzenne
Project Development
Gail Brasser
Project Seamstress
Pamela Floyd
Conference Chair
Allison Johnston
Newsletter Co-Editor
Amy McCathran
Newsletter Co-Editor
Heather Vinson
Financial Director
Kate Shamszad
Child Life Specialist
Jill Vantine
Transition Coordinator
Cailey Fitzgerald
We Got Heart Chair
Tiffany Galligan
Marketing
Ty McCathran
Legislative Liaison
Robyn Steinberg
Web Administrator
Tim Hutchings
Web Admin Assistant &
Graphics
Kim Shadek
Chapter Liaison
Pamela Camit
Chapter Liaison
|
Follow Us on the Web
|
|
Support It's My Heart
|
 | |
|
| Heart Journey |
This is the heart journey of Caleb
Joseph Harris as told by his mother Kim Harris
The day I found out I was pregnant
was one of the most exciting days of my life. I always wanted to be a mom and
my dream was finally coming true! Every night before I went to sleep, I prayed
for a healthy baby, I didn't care what gender, just as long as they were
healthy. Every doctor appointment I went to, they listened to his heart,
measured me, and said that everything sounded wonderful. Even when I had
ultrasounds, I was told "the heart looks great!" I just knew
everything was going the way it should. I gave birth to Caleb Joseph Harris on
December 22nd 2009. It is now April 2010 and we still haven't been home yet.
He was born at 10:06 a.m. and I listened
very carefully for that cry that every mom longs to hear that tells her
"the baby's okay". I heard that cry and felt like I breathed a sigh
of relief. They brought him to me and I saw 10 fingers and 10 toes. Everything
was perfect! I was going to bring my little boy home in 2 days and we would
finally have our little family. It didn't get to happen that way.
That night,
we were settling into our room and I was so happy to have Caleb with us that I
didn't want to give him up. Danny was falling asleep in the chair beside me and
I took Caleb out of his bed and put him with me. I just held him, smelled him, kissed
him and loved every minute with him. I started to get sleepy at around 11pm and
despite wanting him, decided it was best to send him to the nursery so I could
get some kind of sleep. I woke up at 2am to a doctor saying to me "we
believe Caleb has a heart problem". Those words made my heart sink. That's
such a general statement and my mind raced. She said they were waiting on the
transport team and he was going to be rushed to Shands Hospital to their NICU
unit. Two hours later, they let us see our baby before he was transported. He
was in an incubator. He was hooked up to monitors, he had an IV. Danny and I
were beyond terrified. They took him away, we went back to our room and cried.
We were discharged the next day and Danny and I immediately drove the hour and a half to Shands Hospital. We saw Caleb again
in the incubator. He was hooked up to even more equipment. I asked what was wrong. The
nurses echoed the same sentence, "He has a heart problem." I wanted
more! We went to a hotel and slept, or tried to sleep. We found out the next
day that he had a congenital heart defect known as Hypoplastic Right Heart
Syndrome. The cardiologist walked in and the first thing he said was "This
is fixable, your boy will be okay". Wow, what a relief that was to hear.
So we dealt with the NICU stay and just held on to the idea that in a few weeks
he would have his first surgery and come home.
On January 7th, the doctors did a heart
catheterization to find out a little bit more about his heart. They called us into
a meeting the next day. There were more problems; not only did he have HRHS, he
also had Pulmonary Atresia, severe Tricuspid Stenosis, ASD and PDA. WOW. That
was a laundry list of words we didn't understand. They told us in that meeting
that they wouldn't be able to do his first surgery, he would need a heart
transplant. We broke down again. This is not what we expected to hear EVER. He
had been on a medication called PGE since he was born to keep a duct open that
was allowing blood and oxygen to flow to the lungs. Without that, he wouldn't be
alive. Caleb was listed on January 15th, 2010.
Caleb did relatively well with PGE
until the end of February/beginning of March. That medication has some "not so good" side effects.
The areas around all of his bones were inflammed. He was in pain. You could see
it on his face. I was scared to pick him up anymore. He would cringe when you
would touch him. He was swollen, he had a fever, and at times was inconsolable.
This was not the Caleb I knew. He was always so happy and content. All the
nurses and doctors loved him, and he never gave them any problems.
We found out in March
that they were able to do a surgery called the Bidirectional Glenn which is
where they take his superior vena cava artery and attach it to the pulmonary
artery so that they can re-direct the blood flow to the lungs. This was part of
the initial 3 part surgery we had heard about when he was first born. The first
surgery was the BT shunt which Caleb never had because they feared he would have a heart attack and die if they
attempted that first surgery. We never thought they would be able to do any surgery
besides the heart transplant.
This news came as a welcome surprise.
Our boy was stronger than the doctors had hoped. We KNEW that but it was nice
to have the doctors see what we knew all along. His surgery was done on March
16th, 2010. It only took 3 hours. They got him settled in the PICU and we went
to see our baby. Luckily, I had met some heart moms before this that warned me
what my baby would look like but it still didn't completely prepare me for what
I was about to see.
We came up and he was hooked up to
more things than we could imagine. There was not one part of his body that wasn't poked or
covered with wires. He was puffy, he had a tube in his throat, his face was
gone. It was replaced by monitors and tubes. Everything beeped, these were
different beeps than what we grew used to in the NICU. I didn't know what these
meant and that scared me. They told us the first 24-48 hours were the most
critical. It hit me, my baby was in critical condition.
The first day, we
couldn't touch Caleb because they didn't want him stimulated. They wanted him to remain
as pain free as possible. I think that was one of the hardest days of my life
so far. Being so close but feeling so far away from my son. The next day, he
was even more swollen, which no one had warned me about, so that made me break
down. I cried so hard and just wanted my baby back. The days that followed were
honestly a blur but he did get better every day, little by little. The next
hurdle we had to jump was feeding.
We have always been told that heart babies will always
have a feeding issue. Their heart works more and they
tire out. They lose weight and they struggle to keep the weight on. Caleb's doctors
were hopeful though. He took 2 bottles right after the breathing tube came out. Not many babies do that! The next day though, he stopped
eating all together. We worked with occupational therapy and occasionally he
would take less than half an ounce but for the most part, he would not eat.
That was the most frustrating part of it all. We were so close to the door out
but at the same time, so far away. It was like I could see the exit but I
couldn't reach it. After much deliberation by doctors and us included, it was
decided that the feeding tube in his stomach (gtube) was the best option. He
would get nourishment and he would finally be able to come home.
On April 13th,
he had the surgery to insert the feeding tube, (yes another surgery!) along with a Niss en which would
keep him from vomiting due to a reflux issue. That surgery
took almost 4 hours. I was a nervous wreck waiting for him. I was told it would
only take 2 hours so my mind was wondering. I prayed that everything was going
well. I was scared, though. I was by myself with this one so I had no
distractions. I had a clock that reminded me what little time had gone by and I
had my brain that wouldn't stop. He came up intubated (breathing tube in) which
made me sad because he coughs and coughs and it gives him such pain. I saw the
gtube, which frightened me. I know it will become like second nature but right
now it just looks like a foreign object in his body that I don't want there. He
was extubated the next day.
Caleb is gradually getting better and we are hoping to
go home for the very first time on April 19th, 2010, 118 days after being in the
hospital! I am elated, happy, overwhelmed, scared, sad, and nervous. Every
emotion a person can possibly have, I am experiencing right now. I CANNOT wait
to start our life and have normalcy. This child has shown me what a fighter
really is and the true meaning of strength. He is my hero and I look up to him
EVERY SINGLE DAY!
|
Share your story!
|
 Language of the Heart
Poetry & Short Story BookWe want to hear from you! It's My Heart is putting together a collection of poetry and short stories written by or about people affected by heart defects. We are looking for special moments, heartwarming and inspirational pieces. Poems and short stories should provide insight into the emotions, trials, and at times humorous events you have experienced living with CHD, either personally or through a family member. Please check out www.itsmyheart.org to submit and for more information, or contact book@itsmyheart.org.Join us in putting feelings into words to share and inspire! Deadline for submissions is AUGUST 1ST! |
| CHD Birthdays |
   Luz Yaneli Ruiz Syrus Ortiz Breanna Marie Bickers June 1, 2006 June 13, 1998 June 14, 2006
   Joshua Weisman Hana Kanter Jacob Smiley June 14, 2009 June 18, 2003 June 22, 2001   Sammy Baugh Emma Womack June 22, 2008-June 14, 2009 June 27, 2007
Is your child born in July? Please send us your child's birthday and picture so we can all celebrate your child's birth with you!
We also want to celebrate all your angel's birthdays too! So, please send us their information so we can include them as well! E-mail to newsletter@itsmyheart.org. |
| Someone loves IMH! | From the bottom of our hearts, Thank You. For what you do, for being there. It's greatly appreciated.
God Bless,
Maria & Family from New Jersey
(from the IMH facebook page)
Do you know someone who loves IMH? Send a story of how someone you know reached out to the CHD community! Email newsletter@itsmyheart.org. |
IMH Seattle Chapter Zoo Day
|
 Enjoy a day at the Zoo with the Seattle chapter of IT'S MY HEART!
June 5th 2010
Woodland Park Zoo
750 N. 50th Street
Seattle, WA 98103
Free tickets for children with CHD and their families.
Schedule: 10:00am-10:30am: Ticket pickup at South Gate Entrance.
Bring a picnic Lunch or there are also two restaurants.
Visit the zoo website for directions, parking and current exhibit info! www.zoo.org.
RSVP by June 4th to Carla Baysinger - Chapter President (253) 269-2240. |
IMH Portland Chapter
|
 I t's My Heart Portland is proud to support
CHD Awareness and Research.
Sunday, June 5th from
5:30 p.m. - 8:30 p.m.We would like to invite everyone to help support the Children's Heart Foundation at this year's Lion Heart at the Children's Museum. Download the official Lion Heart Flyer here or go to www.chforegon.org for more information. |
Featured Product
|
 fly BABY is the proud designer and manufacturer of The Healing Suit, a patented medical garment for hospitalized babies and children. The Healing Suit is available in infant sizes ranging from up to 2.5 kilos (5 lbs 6 oz) to 11 kilos (24 lbs 4 oz), as well as a Toddler and Children's Pajama in sizes 2 on up. Our everyday clothing range includes fun and easy to care for, mix and match styles in sizes 000 up to size 3. All fly BABY garments are designed and made in Australia, and feature our own line of Australian made printed textiles. Visit the flyBaby website today at: www.flybaby.com.au |
| Family Matching |
How do I cope with all of the procedures and hospital stays my child endures?
Are there any other children out there with the same diagnosis as my child? How are they doing following their surgery?
Who can I talk to that has had a similar experience?
If you have these questions and more, our Family Matching Program may be able to help you. We can "match" you with another family with the same CHD .We have more adults signing up for family matching each month .If you are an adult with congenital heart disease please consider signing up for Family Matching. You are a true inspiration for families.
| | Donations |
Recurring monthly donations from:
*Beth Jacobson
One time donations from:
Katherin Jackson in memory of Steven Douglas Abbott
Ron Rue in loving memory of Kaia Belle Urban
Dana Kervin in honor of Katy and Ed Wolff and their twins
Donations from the Its My Heart Facebook page:
Erin Marshall Ayscue
Donations "In Honor Of", "Memory Of", in recognition of a birthday, anniversary or "Just Because" can be made to It's My Heart. Not only will your donation go towards helping those affected by CHD, but also let someone special know you are thinking of them in a very special way. All donations are tax deductible. Your donation will further the work of spreading awareness of CHDs, fund programs such as the Comfort Bags and Care Packages to the hospitals, etc.
|
|
It's My Heart Chapters | |
The mission of It's My Heart provides strength and support for those affected by Heart Defects. It's My Heart exists to provide support to and advocating for those affected by Acquired and Congenital Heart Defects. Through awareness, resources and education, It's My Heart creates alliances and networks among families, groups, hospitals, and the community.
The objective of chapter development advances our opportunity to increase awareness, support and thereby advocate for those affected by CHD.
If you are interested in organizing a chapter or walk in your area, please contact the It's My Heart National Office at (713) 334.4244 or (888) HEART.07 or e-mail chapters@itsmyheart.org.
Click here to find the IMH Chapter nearest you:
Fresno, CaliforniaSouth Florida Northern New Jersey
Cleveland, Ohio
Columbus, Ohio
Portland, Oregon
|
|
|
|
|
|
