Mended Little Hearts Open Forum

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Welcome and Introduce Yourself

  • 1.  Welcome and Introduce Yourself

    Posted 03-14-2017 11:45
    Hi!
    We are so excited to be launching our online communities! This space is for all Mended Little Hearts families and patients. Please feel free to introduce yourself and get the conversation started. 

    I am Andrea Baer and I am the Director of Patient Advocacy here at Mended Hearts and Mended Little Hearts. I am also the community manager here at Connections in a Heartbeat as well as the parent to a child who was born with a CHD. Trenton turns 8 on St. Patrick's Day. I founded MLH of Southwestern, PA, served as the National Growth and Development National Chair, and then the Vice President of MLH on the Executive Committee of the Mended Hearts Board of Directors. 

    Looking forward to get to know everyone!

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    Andrea Baer
    Grapeville PA
    (724) 396-7820
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  • 2.  RE: Welcome and Introduce Yourself

    Posted 03-14-2017 16:17
    Hi!  My name is Shannan Pearsall and I am the Group Coordinator for MLH of Long Island!  I am a heart mom to Aidan (8 years old with HLHS). I am also the MLH National Social Media Chair!

    You can reach me at socialmedia@mendedlittlehearts.org or shannanpearsall@gmail.com


    ~Shannan

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    Shannan Pearsall
    Lynbrook NY
    (516) 812-5148
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  • 3.  RE: Welcome and Introduce Yourself

    Posted 03-14-2017 22:02
    Hello! 
    My name is Nicole Sanchez, I am the RD for Mended Little Hearts in the Western region. I am also a coordinator for MLH of the Bay Area (San Francisco). I am an adult with a CHD, born with tricuspid atresia/HRHS. I'm excited for this new way of connecting to fellow CHD families! :) 

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    Nicole Sanchez
    Alamo CA
    (925) 487-8132
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  • 4.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 07:00
    Hello my name is Julie Goss from Indio, CA. My son Kayden had a heart transplant at 8 months old due to dilated cardiomyopathy.

    ❤JuLiE A. GoSs❤





  • 5.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 08:09
    Hi, my name is Elizabeth and my third (of four) sons is a heart baby. I was introduced to Mended Little Hearts shortly before he was discharged after is first OHS in 2013.





  • 6.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 09:17
    Hi all, I am a member in SW Ohio but we actually travel to Columbus, OH for all of my daughter's procedures. She was diagnosed with Hypoplastic Right Heart Syndrome at around 26 weeks, so we were expecting a lot of what was coming after her birth. She had a ballooning at a few weeks old to open her pulmonary valve. We spent the first month in the hospital. She had her first OHS at 7 months, in which they performed the Glenn procedure and gave her an artificial conduit. Since then, she has had 2 sessions in the Cath lab to balloon the artificial conduit back open as it had narrowed. She will need a new conduit in the next couple of years. The outlook is good so far though that she won't have to get the Fontan and can stay and 1.5 chamber kiddo. 

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    Carolyn Stock
    MLH member
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  • 7.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 15:23
    Hi,
    My name Siobhan and I have a 12 year old son with with HLHS.
    He is a remarkable boy and is truly living and thriving despite his CHD. We have been very blessed. He is the oldest of 4 children. I have been involved with MLH for about 6 years and I would love to answer anyone's questions.
    Siobhan

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    Siobhan Pawelczyk
    Grand Island, NY.
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  • 8.  RE: Welcome and Introduce Yourself

    Posted 03-16-2017 17:03
    Hi!  My name is Kim. My son, Seth, is 14 years old and was born with TGA. He had the arterial switch when he was 8 days old. He has done remarkably well ever since. He is my pride and joy!!  I am the coordinator for the Mended Little Hearts of Oklahoma City group. We have been a part of MLH since early 2007 when I founded the OKC group. As well as being the mom to one awesome son and coordinator for the group, I also teach 7th grade Spanish and coach volleyball, basketball and track!!  I am a VERY busy (and often times tired) person!!  I look forward to getting to know a little more about everyone!

    My info is below of you ever need to reach me!!

    ------------------------------
    Kim Baratz
    Coordinator
    Mended Little Hearts of Oklahoma City
    Edmond, OK
    405-326-1528
    berly15@hotmail.com
    ------------------------------



  • 9.  RE: Welcome and Introduce Yourself

    Posted 03-17-2017 18:32
    Hi. My son was diagnosed at my 20-week ultrasound with a CHD, which turned out to be Truncus Arteriosus.  He had surgery at 1 week old, and was home two weeks later.  He's now 2.5 years old and his next surgery is off sometime in the future. He's doing great. Our family lives in Oakland, CA and I have met a few of the other local heart families through the MLH chapter. I'm pretty freaked out and mad about what might happen to health care. I remember thinking how grateful I was that the ACA was in effect when he was born and I wasn't going to have to "worry" about things like insurance coverage for him...Happy to be connected to you all.

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    Aspen Baker
    Oakland CA
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  • 10.  RE: Welcome and Introduce Yourself

    Posted 03-15-2017 14:39
    Hi!  I'm Erin.  My daughter Raygen, who will be 6 on the 23rd!!!, was born with HLHS.  She has had all 3 stage surgeries and is doing awesome heart wise.  She is non verbal and only eats from a g-tube, but she is very social and so smart.  

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    Erin Due
    Onalaska, WA

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  • 11.  RE: Welcome and Introduce Yourself

    Posted 03-22-2017 08:54
    My name is erika, i am a heart mom to Ben. He was diagnosed with HLHS and TGA at his 4 month checkup. He is now 7, almost 8, and has a pacemaker. He hasnt had the Fontan and likely wont, as there is really no benefit to him at this point. I live just south of Austin, so staying active with MLH of San Antonio has been a challenge, and it is hard to find other heart families in the area, as evwrything in central and south Texas is so spread out and the Kyle/Buda area isnt as large as the metropolitan areas. I would love to get to know other heart moms, whether you are in the area or not, it has been a long journey and we are thankful for every day!

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    erika moss
    Kyle TX
    erikamoss13@gmail.com
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  • 12.  RE: Welcome and Introduce Yourself

    Posted 03-28-2017 12:39
    My name is Stacy and I have 2 heart babies. My first born is now 14 almost 15 and going on 30, he was born with coarctation of the aorta, pulmonary fistula and mitral valve stenosis. He was diagnosed at 12 hours old and had his first surgery at 3 days old. His 2nd surgery was 2 days before his first birthday. He currently has an enlarged ascending aorta and we are in the waiting phase to see if it reaches surgery size. He is 4mm from where it needs to be to have surgery. 
    My youngest is my other heart baby. He is 2.5 almost 3 and was born with severe AVSD. He had his surgery at 6 months old and is doing wonderful. So far, knock on wood, nothing else has come up. 
    I do have a 3rd son who is 9 almost 10, he is my heart healthy one but is high functioning autistic. I homeschool and it has been an amazing journey with these 3 little boys. The older 2 have been diagnosed ADD as well and my little one is already showing signs of it. This is a typical day in our house.


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    Stacy Deitz
    Orlando, Fl
    (336) 880-1737
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  • 13.  RE: Welcome and Introduce Yourself

    Posted 04-12-2017 21:45
    Hello everyone,

    I am currently 29 weeks pregnant with our first child and she was diagnosed today with tricuspid atresia/HRHS.  It breaks my heart that she will have to have surgeries at such an early stage of life but I am thankful for them and trying to be hopeful that everything will be ok.

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    Dianna
    MI
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  • 14.  RE: Welcome and Introduce Yourself

    Posted 08-01-2017 21:28
    Hi, everyone! My fiance and I were over the moon when our little girl joined our family in 2008. She was tiny, only 5.5 lbs at birth, and exhibited EVERY warning sign of CHD. Of course, we had no idea at the time that CHD was causing all of her issues. At 12 months, her ped heard a murmur. Thank God he did. Her cardio said that her condition, PAPVR, is generally not even found until children are about 7 years old. Jeanaveve had her surgery on 9/15/11, and went home six days later. Today, she is very, VERY 9, and sees her cardio annually for check-ups. She attends a four day, three night camp for CHD Warriors every summer, and is looking forward to fourth grade. :)

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    Aimee Gildner
    Wellsville NY
    (585) 596-1055
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  • 15.  RE: Welcome and Introduce Yourself

    Posted 08-04-2017 01:37
    Hi!
    Angela Eilers from Orange County, CA. My heart kiddo is almost 8. She has pulmonary stenosis, 2OHS.

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    Angela Eilers
    Yorba Linda CA
    (714) 660-6005
    Angela
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  • 16.  RE: Welcome and Introduce Yourself

    Posted 08-24-2017 15:49

    Hi fellow CHD families.  I'm Yvonne and our CHD warrior, Bryce was born with complex single ventricle, hole between upper two chambers, hole between bottom two chambers, issues with the four heart valves, transposition of the great arteries.  He was diagnosed at 18 weeks gestation and was born at 35 weeks 5 days.  He has had three heart surgeries to reroute blood flow, the BTR Shunt, The Glenn (7-12-2015) and The Fontan (7-6-2009).

    I joined this online community in 2017 and life got busy.

    Our son's first time going to Camp del Corazon was 2014 when he was in 4th grade and he came back knowing that is not the only heart kid out there.  This year will be his 4th attending Camp del Corazon for the summer of 2017!

    He knows his heart is different, my husband and I told him that his heart is different and he needs to listen to his body and rest when he feels the need. Now that he's older (turned 12 in 2016), he understands more how his complex single ventricle heart and other heart defects work.  His school has "his heart defect papers"--describes his heart, things to watch for especially dehyration, a letter from his cardiologist and info about Camp del Corazon( since he misses a few days of school to attend).

    We are blessed to be his parents and I look forward to "meeting" other CHD families here.


    **heart hugs**
    ~Yvonne 



    ------------------------------
    Yvonne, heart mom to Bryce (complex single ventricle and other CHD's, Fontan 7-6-2009)
    CA
    tiki89@sbcglobal.net
    ------------------------------



  • 17.  RE: Welcome and Introduce Yourself

    Posted 04-10-2019 13:37
    Hello Everyone,
    My name is Elizabeth Howell and am so happy to find a group of moms with which to share this journey.  My daughter, Taylor Elizabeth, is 4 years old now and my family is preparing for her open heart surgery this July.  Taylor was born with a CHD - VSD that we hoped would close, but instead has created additional complications that also need to be removed.  We have kind of braced for this moment since she was born, but now that this is a reality, I'm very afraid.  We have not been strangers to the OR or the ER or the cardiologist's office.  Taylor has had two other surgeries in her life, so you'd think I'd be a little more prepared for this.  NOT!!! Open heart surgery is very different.  The warrior in me is obviously ready and my Taylor is a fighter just like her mommy.  The problem is the "unknown".

    Taylor is a very vibrant, STRONG-WILLED, little girl with so much love for life.  She is an "old soul" and most everyone who meets her says "this little girl has been here before".  As an infant, Taylor's observant eyes seemed to look right into your soul.  Throughout her life she has been so active and never wanted to miss out on anything from soccer to ballet to gymnastics.  She's curious about everything and is EXTREMELY protective of our 3 yr old son, Ethan, who she calls "her baby".  I also have a bonus daughter, Tyla who is 11.

    My husband and I are looking to this community to share insights and support as we walk this journey together.  We have a very large family and support group, but no one in our circle has walked through this the way you all have.  Any insights on what to expect before, during, after the VSD surgery as well as how you handled support for siblings.  We need help explaining this to both Taylor and our 3 yr old Ethan in a way they can understand.  Do we keep Ethan away after the surgery to reduce infection?  How do we support Taylor in this experience without stifling the natural "warrior" in her?  I'm happy to share our journey thus far as well.

    Sending virtual hugs and strong arms to my new "heart mom" community!
    Elizabeth

    ------------------------------
    Elizabeth Howell
    Atlanta, GA
    770-842-2433
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    thumbnail image





  • 18.  RE: Welcome and Introduce Yourself

    Posted 04-11-2017 02:55
    Hello! First time posting so I'm not sure if I'm doing it right :) My name is Sarah. I am a single mom to 2 boys, 7 & 2, my oldest is heart healthy and my youngest was diagnosed at birth with Tricuspid Atresia. He had his BT shunt at 6 days and his Glenn at 3 months. We are currently at BCH recovering from his Fontan yesterday. He's doing great and very feisty. I'm hoping they pull the intracardiac line tomorrow so I can hold him, for everyone's sake! Lol My oldest is doing a great job dealing with being away from us and my sister is planning on taking him up for a visit soon. As soon as this phase is past us I want to get into doing more either with MLH and or going back to school for social work/ child life/ nursing. Thanks!!

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    Sarah DelSesto
    Warwick RI
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  • 19.  RE: Welcome and Introduce Yourself

    Posted 04-14-2019 18:10
      |   view attached
    Hi all. My name is Ashley. My son Christian was born on 3/13/19 and diagnosed with Tetralogy of Fallot with VSD 2 weeks ago on 4/1/19. He has his next appointment tomorrow morning. As of 4/1 we were looking at him having open heart surgery in June to correct the defects.

    My husband and I have been married since May 2018 and live in Evans GA near Augusta. I have 2 children from a previous marriage. I am a stay At home mom and my husband is an Electrician.

    ------------------------------
    Ashley Bailey
    Mom to Christian (born 3/13/19 with Tetralogy of Fallot)
    Evans, GA
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  • 20.  RE: Welcome and Introduce Yourself

    Posted 05-15-2019 08:33
    Hi!  My name is Jennifer Matthies and am located in New Jersey.  My son Matthew was born with aortic stenosis and pulmonary stenosis.  He had open heart surgery at 11 weeks old and 8 caths since.  His last cath was in 2012, but he will be going for one this summer at CHOP.   He is now 14 and doing well.  He sees his cardiologist here in our hometown every 8 months.    Hope to connect with other CHD parents.


    ------------------------------
    Jennifer Matthies
    Child Study Team Secretary
    Freehold Township School District
    Middletown NJ
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  • 21.  RE: Welcome and Introduce Yourself

    Posted 05-15-2019 16:36
    Hi! My name is Gretchen Foltz and I had a mitral valve replacement in 1982 at the age of 9. I am excited to be part of the Mended Little Hearts community and am looking forward to the opportunity to volunteer and help in any way that I can for the newly formed Mended Little Hearts of Connecticut group.

    Thank you all for sharing your stories!


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    Gretchen Foltz
    Middletown CT
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  • 22.  RE: Welcome and Introduce Yourself

    Posted 06-24-2019 18:02
    Hello,

    My name is Monica Oliver and I work at the University of North Carolina Hospital in Chapel Hill, NC. I am a new heart mom to a baby boy named Legend who is 3 months old diagnosed with AVSD, TAPVR, and Dextrocardia. Apparently it's super rare to have all three conditions together. I have to agree with a lot of parents on this page that it's hard to find information on congenital heart diseases, let alone a super rare combination. I can say we went home after a week in the NICU after birth and our baby and has hit all the milestones according to books and the internet. He just had his first of the three surgeries - the pulmonary artery band placement and is finally home after 3 weeks in the hospital. He is currently feeding bottle and NG tube until he can tolerate his full feed by mouth. Our docs are putting him through a Single Ventricle route with the next surgery is estimated to happen in 3-6 months called the Glenn plus* (since they have to do the Glenn and replumbing of additional veins). I look forward to joining this community and meeting parents of these amazing children. I could always use some encouraging words or I love hearing about success stories! I pray that our little one continues to fight and overcome this obstacle.

    Monica Oliver
    Durham, NC
    919-455-5015

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    Monica Oliver
    Durham NC
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  • 23.  RE: Welcome and Introduce Yourself

    Posted 06-27-2019 18:54
    Hi I'm Richard, I had a ventricular septal defect repaired in Denver, Colorado in1960. I belonged to mended hearts and attended a party and attended making crafts. I'm now 67 years old and had a radio frequency heart ablation last September. I think I need to join the Denver, Colorado chapter for adults. I've had trouble doing that as I'm using my phone. I believe my chapter is 047 at Porters Hospital in Denver where I was born. Any help with this I would appreciate. Respectively---- Richard

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    Richard Danks
    Evergreen
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  • 24.  RE: Welcome and Introduce Yourself

    Posted 07-16-2019 17:37
    Hi! I'm Sheri. I am helping to raise my four month old granddaughter Isabella, she has a VSD, ASD and pulmonary stenosis as well as a few other health issues and her 1 1/2 yr old brother. I am looking forward to connecting with people and learning more as we begin this health journey with Isabella.

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    Sheri Shumaker
    Edenton NC
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  • 25.  RE: Welcome and Introduce Yourself

    Posted 07-23-2019 08:06
    I don't know if I did this right, but My name is Sara Whitaker, I live in Bogata, Tx. I am 38 weeks Pregnant with a little boy who was diagnosed with HLHS 15 weeks ago.
    My C-Section is scheduled for this coming Thursday (7-25-2019) My baby will have his surgery at Children's Medical Center in Dallas, Tx.

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    Sara Whitaker
    Homemaker
    TX
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