Pink for Paul!
https://www.facebook.com/pink4paul
From time to time, we here at Sisters by Heart are approached with fundraising ideas, ways to generate awareness about HLHS and support Sisters by Heart at the same time. We are always so touched and honored when heart moms choose to support our efforts. We were recently approached with a new fundraising idea, borne out of one mother's unique way of showing love for her special HLHS son, Paul. We were so touched by her story, and thrilled to participate in this fundraiser, Pink 4 Paul. This is Paul's story, as told by his mother, Colleen. Please be inspired along with us, and read on to hear how you can support Sisters by Heart and go Pink 4 Paul this summer.
No one teaches us how to grieve. There are certain theories, support groups, quotes and passages that are intended to guide us and for some they provide solace and a road map and for others they provide simple words of encouragement. I think society has a need for people to hurry up and get better in the face of all different types of issues. People have a tendency to rush to support folks in immediate crisis- think of all the casseroles the day of a funeral but in aftermath, the days and weeks and months that follow, we tend to expect people to move on with their lives and resume normal functioning. After getting an HLHS diagnosis I was supposed to go through the Norwood (hard) get through the Glenn (easy) and then resume normal functioning until the Fontan. I wish I was one of those people who immediately became better and gained amazing life perspective in the face of life-threatening illness but I was not- I am not. That does not mean that who I am at my core and what I value deeply has changed it just means that in spite of myself I can get really worked up when it comes to HLHS.
For me, things went like this: I was happy, in denial and a little bit information crazy when Paul was first born. A few months in I was mad. His Glenn was supposed to be easy and it wasn’t. I was supposed to feel better about everything and I wasn’t- I was feeling…WORSE. More sad, more anxious, more in the weight of this diagnosis than ever before. I was sort of in a fog with little glimpses of hope during Paul’s first year of life. I checked his oxygen saturations constantly, we went to the doctor all the time, I researched vigorously for a cure, for someone- something to make it better. I got irrationally mad at our doctors and had moments of total denial. Looking back I can see this was all about grief- RAW grief. My little boy has a very different type of heart and there is no denying it. A shift happened in our family that caused my husband to be home with the kids much more. He was running the ship with me and he did it very differently that I had.
My husband is the coolest guy I know and has an amazing calm to him. He has the ability to compartmentalize in a healthy way like no one else I have ever known. That’s a good thing since I have almost every feeling all the time He taught me in the last year to see Paul as a little boy with a special heart, not as a ticking time bomb. He helped me see the forest for the trees so to speak. He helped me get through the fog in a way where the moments of joy started to over shadow the moments of panic. He didn’t sit me down and say “Colleen you should be feeling differently.” He just SHOWED me that parenting Paul was about parenting a little boy mostly and a heart kid sometimes.
Grief…What a word. Grief is an emotion that I will never lose in the face of HLHS but it is an emotion I have learned to manage. Here’s what I know right now- we have a beautiful two and half year old that can count to ten, knows most of his letters, is highly opinionated and really likes buddy fruit. We welcomed a little girl, Georgia Jane, on Valentines Day of 2014 and she is the queen of our little castle. Her heart is not perfect either, by the way. She has bicuspid aortic valve a very minor CHD but common for HLHS siblings (talk about re-visited grief but that’s a whole other blog). She is a sweet little ginger and Paul LOVES her. I fall more in love with my husband every single day. Our marriage is surviving and thriving in the face of this grief. It hasn’t been easy but we are making it, together. I have some amazing life long friendships because of HLHS and get to serve so many families by sitting with them in their pain and their grief when its needed. I am still who I was before HLHS. I have a huge crush on Gavin Degraw, get to work doing research for a lovely and highly patient company, I love to sing and dance, and I get an unhealthy joy from starbucks lattés and am a sucker for Lifetime television.
I wrote this blog about two years ago and I still mean every single word. The HLHS community is a beautiful place to unintentionally bloom. It has been a gift and gorgeous blessing to know these children and families. I love them as my own and follow their journeys with a lot of hope.
One of my best friends in the world is named Diana. Her little boy Jude is the first HLHS child I ever met. When I was pregnant with Paul, Diana and Jude and I met for coffee and conversation. I thought she’d arrive with a baby in a wheelchair on oxygen and IV drip; instead, she arrived with a big cheeked tow head with quite the personality. I fell in love with him and her that day and have been privileged to love them everyday since.
Most of you know that HLHS children appear “blue” pre-Fontan, especially in their fingertips and toenails. Diana shared an idea with me to paint my toenails blue when I was pregnant with Paul. She had done it for Jude, citing that as long as his toes were blue, hers would be too. At that moment, before he was born, I made a promise to Paul that as long as his toes were blue, mine would be blue and I have kept that promise for the last 2 and a half years, painting my toenails with every blue polish there is.
Paul will have his Fontan surgery on July 28, 2014 and hopefully his fingernails and toenails will be more pink. To show support and to raise awareness for congenital heart disease, we are asking folks to go Pink 4 Paul!
Paint your toes and/or nails pink. Post your picture on our facebook page https://www.facebook.com/pink4paul or Instagram #pink4paul and share with a caption of support. We will read all the messages to him during surgery.
You can purchase pink specific nail wraps and polish through our fundraiser with Jamberry Nails Independent Consultant Jenn W, between June 23rd and July 6th at www.jennw.jamberrynails.com. We have also made custom wraps that you can purchase by emailing JennWNails@gmail.com!! All proceeds will go to Sisters by Heart!
This is the best way I know to place my grief. In the face of this upcoming surgery, I am trying to choose acceptance and synthesis as a means to get through this time. During the Fontan, I expect to grieve, freak out, yell, ugly cry, laugh and smile, and maybe I will enter the fog again. As sure as the sun will rise, I will get out of that fog-no matter what happens, no matter how long it takes, I will live and breathe again. I will not be paralyzed by grief forever.
I write often about the space between in life, the power of each other, and the importance of love without condition. Maybe this is my lesson…these are my lessons in this journey. Whatever your process, wherever you are, however you grieve it's ok and it will BE ok. Thanks for fighting for HLHS and for allowing me to be with you on your journey, and you on ours as we sit with grief; we have so much hope. Paul is proof that the quality of life for a child with HLHS can be amazing and I hope he continues to be that proof throughout the rest of his long long long life.
Why There are “No Brothers by Heart”
The following post is brought to you by... two Heart Dads! Perfect timing for Father's Day.
A huge thanks to Travis Lewis and Trent Neely for their candid and honest thoughts and perspectives on being a heart dad and, as the title states, "Why There are no 'Brothers by Heart.'" So, who are Travis and Trent?
Trent, Avery, and Ellery
Trent Neely
Daughter: Avery (HLHS) - almost 3, Ellery (HH) - 5
Fontan: Scheduled for early July
Occupation: Teacher (Anatomy & Physiology, Health & PE)
Favorite kid activity: Being the tickle monster
Favorite ice cream flavor to share: Cookies & Cream
Lives in: Columbus, OH
Hospital: Nationwide Children's
Currently reading: The Tale of the Dueling Neurosurgeons
Favorite kids movie: The Goonies
Coping mechanism: Bad jokes
NFL Team: Bengals
Travis and Cael
Travis Lewis
Son: Cael ( HLHS) - just turned not so terrible two
Fontan: Scheduled for early July
Occupation: Physician Assistant and Athletic Trainer in a pediatric office
Favorite kid activity: playing outside
Favorite ice cream flavor to share: Moose Tracks
Lives in: Butler, PA ( just north of Pittsburgh)
Hospital: Children's Hospital of Pittsburgh
Currently reading: Any Given Monday
Favorite Kids Movie: Charlie Brown Christmas
Coping mechanism: Coffee
NFL Team: Steelers
Why There are No Brothers by Heart
by Travis Lewis and Trent Neely
Calling all dads… Calling all dads… Does anybody else hear crickets? It didn’t take long for us to notice a particular phenomenon in the heart community. Now we dads aren’t the most observant creatures in the world (unless we’re talking about fantasy football or baseball stats), so the observation had to be pretty obvious. Sisters by Heart has hundreds of affiliated moms, there are Heart Mom Facebook groups with 1,000+ female members, parent groups are predominately women, and a recent study about how to present a prenatal diagnosis had a 95% survey completion by the fairer sex. So, where are all the dads? And why is there not a support group like Sisters by Heart for Dads?
In order to understand this occurrence, it is important to first understand a few key differences between women and men. In this case, evolution is necessary to provide some insight. Historically, women have been the primary caregivers for children, and raising children is no easy task. As caregivers, socializing and bonding became an important survival technique; just ask any mom experiencing the terrible twos. Sometimes it feels as if a small army is required to attend to a child’s needs, and for help, many women turn to other moms. On the other hand, men are responsible for providing security and a source of nourishment. A group of men discussing their latest cave improvement techniques while hunting only tended to scare off the large animals they were hoping to bring home for dinner that night. As a result, we men tend to internalize more often.
This tendency of women to “tend and befriend” and men to “provide and protect” has resulted in variations in brain development of both men and woman. These variations can be coupled with the fact that women carry and then deliver a baby nine months later, while the male’s “job” could be a mere couple of minutes. In addition, males and females are socialized differently. Women are taught from a young age to be caring and compassionate and males are taught to be tough and emotionless. On the surface, we, the tougher species, appear to be devoid of emotions. However, this is hardly the case. We just deal with our emotions differently. Recent studies have shown that a Congenital Heart Disease diagnosis may hit the mom harder initially, but the stress tends to linger longer with dad. Because of their ability to socialize and bond, moms come to terms with the diagnosis faster and then shift their attention to how to care for a fragile infant. Dads unfortunately, do not typically reach out for help in the same way and often internalize the stress. As a result, the stress generally does not dissipate on it is own and may manifest itself in different forms for heart dads.
Another reason for the invisible nature of dad, is a result of one of the greatest powers in the universe. We all are exposed to it from birth, but we cannot fully appreciate it until we have children of our own. This super power is “maternal instinct” and it turns a regular, ordinary woman into SUPERMOM. We knew it as a child from our own mothers, but it isn’t until our wives or girlfriends step out of their hospital shaped phone booths with a baby that we truly begin appreciate this power. Seemingly regular women are rapidly transformed into an unstoppable force that has supersonic hearing, can soothe a crying infant, and change diapers with a single hand; all while sleep deprived. Regrettably, this metamorphosis can turn a new dad into a bubbling idiot only capable of putting baby formula into the coffee maker. This dynamic shift is rapid and extreme, frequently leaving dad in the back seat of the car that he is accustomed to driving.
As fathers of children with a complex heart defect, who still may not have appropriately dealt with the stress of the diagnosis, we are still scared and insecure about how to react. We too are thrust into this new situation and we want to do everything we can to help. However, it appears to come more naturally to mom. This is threatening to our masculinity, so we often do not exercise our ability to reach out for help. The last thing we want to do is make a mistake, because in this game, mistakes can be tragic. So we retreat to what we know - providing and protecting. When considering the idea of one parent choosing to stay home to care for a child, it is often mom. Dad continues to work in an attempt to make a larger financial contribution to the family. We feel this is our way to provide a sense of security for our family and to make up for all the shortcomings we perceive when compared to SUPERMOM.
So we ask again, where are all the dads? Well, in three of the social media groups that exist specific to dads, there are a grand total of less than 100 of us involved. This would make it appear that we all ran for the hills. Some do, but most go about winning their father-of-the-year award quietly. We take the kids to the doctor “because our wives told us to,” hoping to retain and deliver the correct information so we don’t have to tuck our tails. We go day to day holding onto similar stress and anxiety that moms do, but we don’t have the same social bonding ability to help cope with those feelings. The good news though is that the brain can change. Many dads are becoming more involved in the day-to-day care of their children. Although moms still hold onto a larger percentage of the primary care giver role, dads are beginning to do their share. Dads can also respond positively to bonding through social groups. Moms can help by encouraging their middle aged, balding child to reach out to other dads through social groups. This will help to reassure us that we aren’t the helpless creatures we feel like, knowing that we aren’t alone. Dads, join in the conversations, express emotions and ask questions. It may not be easy, but it will help. Maybe it will improve family dynamics or it might even get us out of the doghouse. Who knows, perhaps we’ll develop some of our own super powers…But we won’t know until we try.
What If…
Several weeks ago, Sisters by Heart reached out to our HLHS community asking families to submit photos of their heart kids with their care team members to be used in a special project. We are so excited to finally be able to share this special video project that debuted at the Spring National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) Learning Session!
The video features the song “What If” by Five For Fighting; to say the lyrics are powerful would be an understatement.
What If
It is safe to say we expected the crowd to react positively to the video, but what happened next came as a complete shock and truly moved the entire room (parents, cardiologists, nurses, dieticians, quality improvement experts, etc.) to tears. Dr. Gail Wright, upon watching the “What If” video, wrote down her raw, emotional thoughts to parents, then courageously read them to a room filled with nearly 200 participants:
What If….?
What if…
I told you we are not in control?
What if…
I told you that there are not answers?
What if…
I told you that I wish there was really a Journeyboard, rather than wide open space?
What if…
I told you I don’t know?
What if…
I told you I don’t understand why this happens either?
What if…
I told you I can’t make that part better?
What if…
I told you a bunch of knuckleheads won’t cough up the money to educate the nurses who are taking care of your baby tonight and that fighting for that is sucking the very marrow out of me?
What if…
I told you your life has changed forever today, but somehow you will keep walking forward?
What if…
I asked you how we can go forth together not knowing what’s going to happen?
What if…
I told you take a picture now in the CVICU so we can laugh together at his high school graduation?
What if…
I looked you in the eye and told you that your son is a miracle and is why I really do believe in miracles ?
What if…
I told you there are literally 300 people today who will be holding your baby in their hands with their focused attention and deepest intentions?
What if…
I tell someone that taking care of babies with half a heart has taught me how to live whole-heartedly?
Gail E Wright, MD
April 26, 2014
Upon viewing the “What if?” video by Sisters By Heart NPCQIC Learning Session
Cincinnati, Ohio
This - yes this - is a prime example of openness and transparency amongst parents and clinicians. These types of interactions and candid discussions will help reshape the way pediatric medicine is practiced. Parents and clinicians, coming together as partners, to move mountains. What better place to start than with pediatric cardiology? What better time to start than now?
Please feel free to share this post with your cardiac center leaders; let them know you're committed to working as a partner to transform the practice of pediatric cardiology on a broad scale.
Many thanks to Gail Wright - for taking a giant leap forward and improving upon our work together, as partners, to move mountains for HLHS children - and beyond.
HLHS Collaborative: March's Action Period Call
The National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC) is preparing for its spring Learning Session - where parents and practitioners come together to discuss a range of topics and collaborate on how to transform care and identify best practices for HLHS infants.
If you've ever wondered what goes on backstage with NPCQIC, March's Action Period Calls focused on some of the "behind the scenes" work within the collaborative. The call began with details about the monthly NPCQIC e-newsletter received by participating cardiac centers and parents. There is some concern regarding the rate at which the newsletters are opened/read, however, each month, 80-90% of centers have at least one member utilizing the newsletter. Centers and participants discussed with NPC leaders how the information shared via e-newsletters might be more effective.
Conversation quickly shifted to planning and preparations for the Learning Session taking place April 25th and 26th in Cincinnati. Centers will be busy doing their homework to prepare and sharing tools that others can learn from.
Both practitioners and parents are excited for the upcoming Learning Session, as parent participation has nearly doubled in the last six months and the parent voice will be paramount to driving discussion. If you're an HLHS parent and interested in joining NPC-QIC Learning Sessions, please contact your cardiac center for details. A list of participating cardiac centers can be found HERE. If your center is not currently participating in the collaborative and you'd like to see their name on the list of "Participating Sites," please email stacey@sistersbyheart.org with your name and care center.
For parents attending the spring Learning Session, an orientation call will be held next week to help newly attending parents feel comfortable in NPCQIC's process and in working with dedicated groups of medical professionals.
For those who have attended a Learning Session in the past, please share your experience and for first timers, what questions do you have about what to expect? Not able to attend? Don’t worry, updates will be provided via Twitter, #NPCQICLS.
March's calls ended with an “unveiling” of the reorganized Collaborative SharePoint site. This site manages and stores NPCQIC's important information - tools that centers share and data for each participating cardiac center. The site is not available to parents - except for those on the Parent Leadership Team, but keeping with the theme of parent engagement, NPC involved a parent in the reorganization process. The site looks much cleaner and is easier to navigate.
While we don't always see "behind the scenes," there is much work going on within NPCQIC, all of which assists centers to collaborate and engage in improved care for our children.
We're very much looking forward to seeing many of you in Cincinnati in a few short weeks! Until then.... virtual heart hugs.
HLHS Collaborative: February's Action Period Call
February's Action Period Call updates are brought to you by Trent Neely and Rivkah Reichmann:
Action packed summarizes this month’s call! Each of the two calls began with a presentation of recent research derived from NPC-QIC's multi-institutional data set.
On Thursday's call, Dr. David Brown from Boston began with discussing a recent study regarding the association between Prenatal Diagnosis (PD) and Morbidity. Previous studies yielded variable results, indicating some benefits, as well as some downfalls. The recent data is now indicating more benefits to PD, such as decreased valve regurgitation, ventricular dysfunction, and shorter ventilator time post-surgery. One area that was not included in the study was parent stress. Parents were able to jump in and provide their experiences with PD and the ability to prepare for hospitalization and the interstage period.
On Monday's call, Dr. Matt Oster from Atlanta discussed a study regarding home monitoring. There was a discussion of some data on home monitoring. While the data reviewed didn't seem to correlate daily/weekly home monitoring with decrease in mortality or readmission rates, it did seem to impact weight gain. Those with daily home monitoring had better weight gain than those without home monitoring. The nurses and doctors on the call really wanted to hear from the parents -- they were interested in knowing whether home monitoring added to parents' anxiety and stress levels, or helped alleviate anxiety and stress. A good discussion was had of some of the benefits of home monitoring, and some of the challenges. The study, in particular, did carry it's own limitations, including omitting hybrid patients, excluding those with no echo data, and not having access center specifics.
Following discussion on these NPC studies, teams were updated on efforts made by the Research and Publications Committee. The Parent Leadership Team requested a summary of findings from a recent study on the relationship between Prenatal Diagnosis, birth location, and mortality. This is a valuable tool to help parents understand research studies. The first "Research Explained" can be found on the SBH blog and NPC-QIC's research page. Based on the response from this first review, NPC will continue "research explained." If you have come across a study or abstract relevant to HLHS and NPC's work, please feel free to email a link to info@sistersbyheart.org and we'll pass it along to the Committee. Additionally, NPC's Research & Publications Committee is adding two parent representatives to assist in reviewing manuscripts/abstracts and research explained projects.
Each call finished with review of survey results obtained from centers aimed at exploring various interstage practices. Some of the discussion surrounded center practices regarding red flags, interstage care, and frequency of follow up care. The discussion flowed into a discussion of reasoning behind frequency of visits and proximity to center. Some discussion was had regarding becoming more transparent in sharing data and protocols and the fortunate timing of NPC's new Transparency Workgroup.
According to parents on the call, February's AP Call was probably the most engaging call of the past year.
Please keep the discussion going by providing your thoughts and experiences on the following research topics:
Prenatal Diagnosis: Were you prenatally diagnosed? Was this beneficial to help you prepare or was it too much stress? How did either experience help you with care?
Interstage Monitoring: Did your center offer daily or weekly home monitoring? Did you find it helpful? More stressful? Less stressful? If you didn't have home monitoring, did you wish you did, or did you feel calmer without the stress of worrying about home monitoring?
Thank you for your continued engagement and your participation. Each comment shared improves the experience and outcome for future HLHS families. We look forward to meeting many of you at April's NPC-QIC Learning Session in Cincinnati!
Shopping for a Cause
Heart Week is coming to a close today but if you are still looking for a way you can give back during Heart Month check out one of these fundraisers we have going on right now.
You can help out Sisters by Heart and get yourself a great gift at the same time. One of our board members, Kathy Baker, is hosting a Virtual Younique makeup party. A portion of the proceeds from every purchase will be donated to Sisters by Heart.
Younique is known for their mineral pigments and their AMAZING 3D fiberlash mascara. If you have ever used Bare minerals, Younique has similar products. The mineral based makeup is free of chemicals and not only looks great but feels great too. What is even better is you can stay in and shop from your couch in the comfort of your own home. If you are having a hard time deciding what to get, check out the "Browse Looks" section of the site for many user uploaded photos. Find more ideas on Pinterest by searching Younique makeup. The mineral pigments can be used wet or dry or a combination of both. Play around and see what look you like best.
If you purchase a collection, you not only save 25% but you will also receive a FREE lipgloss or Mineral Shade. This is a special offer Kathy is running so it won't appear at checkout. If you order a collection, email Kathy at info@sistersbyheart.org and let her know your name, address and what shade of gloss or pigment you would like.
The virtual party ends on February 17th.
Click the link below to start shopping!
https://www.youniqueproducts.com/ChevaIsing/party/61019/view
A Heartfelt Donation: eBay Foundation
Sisters by Heart is thrilled to announce that we've been the recipient of an eBay Foundation grant!
One of our Sisters by Heart board members, Stacie Jackley, has been working for GSI Commerce, a subsidiary of eBay, inc., for the past 11 years. A few months ago, she received an email from the eBay, inc. GIVE Team offering a unique opportunity for employees to apply for a grant up to $5,000 to support their favorite non-profit organization.
Stacie immediately thought of Sisters by Heart and, along with fellow board members, completed the application. The application was submitted with fingers crossed.
We found out in late December that Sisters by Heart was one of the organizations to be awarded a grant of an astonishing $5,000! Needless to say, we are ecstatic and so appreciative of the generosity of the eBay inc Foundation! Sisters by Heart has grown tremendously since established in December 2010 and we're thrilled at how this grant will help us further our mission of supporting families facing a new HLHS diagnosis!
Kellen Jackley (2 years old, HLHS) presenting the grant check to Sisters by Heart
The GIVE Team aims to engage employees through volunteerism and by making charitable grant recommendations. Employees have the opportunity to recommend a Non-Profit Organization they are passionate about and would like to help fund their cause. The GIVE Team committee then works together to review the recommendations to determine which organizations receive funds based on a number of factors including financials, potential impact, and need.
Each year, eBay Foundation provides grants of more than $2 million USD to support organizations that promote economic and social well-being, making more than $23 million USD in grants since its first year. But while the Foundation provides generous monetary support, eBay Inc. GIVE Teams, made up of employee-volunteers, further the Foundation’s mission and bring the company’s values to life.
eBay Foundation GIVE Team grants are awarded by the eBay Foundation Corporate Advised Fund at Silicon Valley Community Foundation.
Thank you a million times over GIVE Team and eBay inc Foundation for awarding us this grant - and Stacie Jackley for nominating us! Your generous contribution will help support our mission to provide HOPE to hundreds of families who are facing the devastating heart defect, Hypoplastic Left Heart Syndrome (HLHS), and a lifetime of care for their child.
Research Opportunity: Prenatally Diagnosed Moms Need Apply!
As you can imagine, we welcome and receive constant feedback from HLHS families across the country. Recently, Miami Children's Hospital referred one of their families to Sisters by Heart. We're so very glad they did, as there is a unique opportunity for single ventricle families to participate in a research study.
Dawn Silverman, a heart mom with a passion for psychology, took her education to a very different level than she thought possible, after her unborn son, Caden was diagnosed with HLHS. Dawn decided to use her psychological training and her experience as a heart mom, to advance patient centered research in the Congenital Heart Community.
Significant focus on patient centered and driven research makes Dawn's study unique - she is literally the patient and the researcher! What better way to encourage patient driven research than helping Dawn reach hundreds of single ventricle families.
Psychology Doctoral Study - Dawn Silverman, LMHC, MEd/Eds
The Lived Experience of Pregnancy with a Neonatal Diagnosis of Single Ventricle Heart Defect: A Heuristic Study.
The purpose of Dawn's study is to investigate the prenatal experience following the diagnosis of a single ventricle fetus.
The following is a layout of some of the study criteria, procedures and requirements for HLHS families to participate. Sisters by Heart believes that nearly all prenatally diagnosed families we serve will meet the study criteria. The committment to participate is small, but may carry significant benefits to future HLHS moms.
Participant Criteria: Mothers who were informed during their pregnancy that their baby had a single ventricle defect, and whose baby/child with the heart defect is still alive. During that pregnancy, you had to be pregnant with just one baby and received the congenital heart defect diagnosis while you were pregnant (not after the baby was born). All participants will be between at least 18 years of age.
Study Procedures
Participants will meet with the researcher for 1 to 3 hours to be interviewed about their pregnancy experiences.
Interviews will be recorded.
All recordings and information will be kept confidential with no use of participants’ identifying information.
The recordings will be transcribed and analyzed by the researcher.
Participants will be provided with a summary of their interview (via phone or email) to verify that it is an accurate description of their lived experience.
A report regarding the findings from the analysis will be generated.
Benefits: For this study, you may benefit from potentially gaining greater insight into your pregnancy experience. Participants may also gain a level of satisfaction and sense of “paying it forward” by knowing that their participation will also offer a greater benefit to the scientific community. The data participants impart can yield information that can potentially help decrease the suffering of other women who are actually living this experience as well as serve to assist healthcare workers to better meet the emotional needs of the pregnant women they treat.
Time Commitment: Participation requires about 1- 3 hours. The interview will be conducted at a mutually decided upon secure location. Participants will also be provided with a summary of their interview to verify that it is an accurate description of their lived experience over the telephone or via e-mail. This will require less than an hour of the participant’s time.
Enrollment: To enroll, interested participants should contact the researcher via email (dsilverman@capellauniversity.edu). The researcher will email additional information about the study and eligibility requirements. Women meeting participation requirements will then be emailed information about how to consent to participate in the study. Once your questions are answered, enrollment requires a signature consenting to participate.
Contact: If you are interested in participating or for additional information, please contact Dawn Silverman at (561) 329-3871 or dsilverman@capellauniversity.edu.
Additional information regarding Dawn's study can be found on her research site: https://sites.google.com/site/chdstudy/home
Thank you Dawn, for your passion and empathy for heart moms and in dedicating your doctorate work to improving the prenatal experience post single ventricle diagnosis. We look forward to reading a summary of your study results once your dissertation is complete!
HLHS Collaborative: December's Action Call
As mentioned last month, Sisters by Heart will be providing a summary of the dialogue (involving both clinicians and parents) during the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC) Monthly Action Period Calls.
For December, the action call began with an update on a newly formed Collaborative work group - a Transparency workgroup. With great interest in Transparency, invitations were sent to approximately 15 cardiologists, nurses, and parents. Most encouraging, this group will likely be comprised of a 50/50 split between health care professionals and parents. The first objective of the Transparency group will be to discuss short and long term goals, legal matters, and then develop an update for the Spring Learning Sessions in Cincinatti. The initial goal for centers involved in the collaborative will be to share data amongst themselves in order to drive quality improvement at a more rapid pace. Co-leaders for the transparency work group are: John Kuglar (cardiologist) and Stacey Lihn (parent).
The call also focused on a review of requirements for centers to maintain certification in the NPC-QIC and how data collection forms were modified to help streamline collected data. The data collected is the vital for the work that the collaborative does and a great deal of work goes into collecting the most appropriate information.
The main topic for December's call was Growth during the Interstage period. Growth of babies during this period is one of the vital pieces of data centers are using to help determine health and success of their patients. Centers implementing interventions, such as using scales at home, conducting a feeding evaluation, and providing red flags to parents, experienced improved growth of infants that they cared for. Centers used to think that HLHS babies just didn’t grow during the interstage. Through the work of the collaborative, centers don’t accept this notion anymore. December's call ended with a highlight of some of the work centers are doing to improve interstage growth.
Thanks again, Trent Neely and all parents who participate on the monthly Action Period Calls for providing input, taking notes and preparing summaries for the HLHS community.
Growing Up with HLHS
During the National Pediatric Cardiology Quality Improvement Collaborative's 2013 Winter Learning Session in Cincinnati, Sisters by Heart Board Members had the opportunity to meet Diane Pickles, mom to Jake, a 19 year old living with HLHS. Diane offers great insight as a veteran HLHS mom, and even greater, Jake's personal insights on growing up with HLHS.
Diane and Jake have graciously granted us permission to share their journey over the past 19 years. And Jake, well, he's allowed us to share with our families, his college essay:
Jake and Diane Pickles
To look at me, you would never guess anything was wrong. The truth is, however, that I have quite a story. I look like an everyday high school student, but I’m really not.
I was prenatally diagnosed with Hypoplastic Left Heart Syndrome. This means that while my mother was pregnant it was determined that I had only one of the heart’s two ventricles. In layman’s terms, I have half a heart. My parents were told that my odds of survival were quite low and if I did survive, I would have poor quality of life. One doctor even told them to terminate the pregnancy. My parents thankfully decided to have their second son. They knew I would face obstacles in life, but they prayed I would be able to overcome them. My supportive family welcomed me into the world on September 2, 1994.
I have had three open heart surgeries – the first at three days, the second at six months, and the third at two years. While I don’t remember my operations, I have been told they required a lot of strength and courage to survive. In addition to my surgeries, I have had four cardiac catheterizations, many tests and procedures, and more doctor visits than I could count.
Throughout my life, I have coped with frequent infections and chronic asthma. I have had several hospitalizations and many trips to emergency rooms as a result. Once while in the hospital, we did the math and determined that I have spent more than one hundred nights at Boston Children’s Hospital. I get sick much more frequently than my peers. I have been sick with obscurities such as swine flu (which required a week in the hospital and missing my 8th grade graduation), c-difficile, and erythema multi formae. Most recently, I was hospitalized for a week with pneumonia.
Due to these chronic illnesses, I have faced significant challenges academically. I have missed large amounts of school, and I have also spent many days in school feeling quite ill. When I return to school, I am lessons behind my classmates and struggle to catch up. Early on, I missed a lot of the “basics” and important foundations which has caused challenges in subjects like math and English. Though I don’t dwell on them, I face non-academic day-to-day challenges as well. My friends are very athletic where I am not which has made it difficult to keep up with them in sports and activities. Many of them play organized sports like football and hockey which I am not able to play. I get tired more easily than most teenagers which is a challenge at work and at school.
My personality has helped me overcome these obstacles, particularly my sense of humor and positive outlook. I remind myself often that my challenges could be much worse. I have seen what other cardiac kids experience, and I am thankful that my problems aren’t as severe.
I may have half a heart, but my life is full.
Sisters by Heart asked Jake's mom, Diane, an incredibly thoughtful and genuine individual, to share the HLHS journey from a parent perspective, from birth through teenage years. She's given so many pearls of wisdom in this post and we're so thankful to Diane for sharing.
By Diane Pickles
There is so very much that I could share about the last 19 years of raising a child with HLHS. Although Jake is not the oldest survivor, he is certainly on the oldest end of the survival spectrum. I know that a great deal has changed in 19 years, though the most important aspect hasn’t, unfortunately, changed at all – it is still heartbreaking, exhausting, and frightening to have a child with HLHS. But there’s one more incredibly important thing that also hasn’t changed – the love of a parent combined with the determination of these amazing kids can overcome all kinds of obstacles.
The first 2 years of Jake’s life are a total blur. Somehow, we moved through the chaos and stress and got to the other side. And what I found on the other side, particularly as Jake reached school age, was a challenging transition -- from medical management of HLHS to emotional, social and developmental management – on top of the medical issues. It has been the part of our journey that has challenged me the most. I’m not saying that getting through Jake’s surgeries was easy – because God knows as do each and every one of you that it was incredibly difficult. Nor has it been easy to deal with frequent infections, severe asthma, emergency room visits, ambulance rides, and admissions from the age of 2 onward. But the non-medical “stuff” that has gone along with Jake’s disease was, in many ways, much more difficult. It was certainly not easy to watch our child in physical pain – but most of the time, there was medication that could be administered to ease that kind of pain. Other types of pain were much, much harder.
Jake desperately wanted to play baseball, but the coach wouldn’t play him because he was slow around the bases and not as strong as his peers. He struggled mightily to keep up in school given learning issues, compounded by frequent illnesses, and had more than one teacher call him lazy. Doctors constantly told our one time failure to thrive child that he needed to lose weight. Jake missed many special events, parties, and graduations. Each of these things made him sad, frustrated and angry. I worried about his self-esteem, his report cards, his morale, and his social life. Sometimes I still do.
There are no prescribed treatments for these situations. And they are difficult. Challenging. Sad. You struggle to prop your child up while feeling heartbroken yourself. What I think is essential, and what I tried to do through each of these struggles, was to acknowledging Jake’s frustrations without allowing him to wallow in self-pity. I’ve tried to strike a balance between acknowledging that things may be harder than others for him while pushing him to do his best. Sometimes that was much easier than others. We have tried to raise Jake with courage, grace, dignity, and optimism. When you live with a life-threatening disease like HLHS, there are likely to be non-physical challenges that go along with the disease. For some, they are academic; for others they are emotional; for others they are developmental; and for still others they are social. Sure, lots of kids without HLHS face these kinds of struggles as well. But I think that for a child living with a disease like HLHS the childhood, adolescent, and teenage struggles are frequently filled with these kinds of struggles. And when you’re dealing with that in addition to a serious medical condition, it’s a lot on the plate.
Like each of you, I grieved when Jake was diagnosed and through each of his surgeries. I had to grieve the loss of a normal, healthy infancy and childhood for our second son. And each time I have seen Jake feel limited, frustrated, or down about himself because of his heart disease, I have grieved all over again. For me, one of my greatest challenges as the mother of a child with HLHS has been to avoid letting my own grief about Jake’s struggles color his interpretation of his world. Sometimes I have succeeded at that, and sometimes I’ve missed the mark. Parenting is an art, not a science – right?
Perhaps the greatest words of wisdom I can offer from 19 years of HLHS are these: You are stronger than you think and so is your child.
We have been incredibly, wonderfully blessed with an amazing kid. Jake is outgoing, personable, funny, well-liked, and happy. He is currently a freshman living away at college, loving the experience and working hard in the classroom and at his job. He gives himself weekly immunoglobulin infusions in the common room of his dorm and doesn’t care who sees his scars. He matter-of-factly told his boss that he might need to take a rest if they’re doing something really physical but that he’d more than carry his weight. His friends know he has half a heart but don’t seem to give it any thought at all. He has tons of friends, tons of confidence, and an amazing outlook on life. His struggles aren’t over, and there are still times (as recently as last week, in fact) when I grieve all over again in the face of his difficulties. But as we recently told Jake, when it comes to some of the biggest challenges of all, he has hit it out of the park. He is a survivor.
You will continue to be utterly amazed by your HLHS child’s courage and capacity for love, empathy, and joy. I won’t lie to you: It will be hard. Some days, just like the early days of HLHS, will be really hard because you will see your child’s social, emotional or developmental life impacted by their heart disease. You will be sad, you will be frustrated, and you will be angry that your child has half a heart. But you know what? You’ve got what you need to handle it and so does that amazing, courageous, miraculous HLHS child of yours.
Trust yourself and your capacity to raise a survivor. You’ve got this.
A huge thank you to Diane and Jake for sharing your journey, wisdom and insights into Life with HLHS.
Take Action: Be Part of the Solution
Over the last year, Sisters by Heart has played an active role in the National Pediatric Cardiology Quality Improvement Collaborative (NPCQIC). NPCQIC's goal is to improve the quality of care and outcomes for HLHS infants, particularly during the interstage period. Learn more about NPCQIC's goals and visit the "Parents" tab here: https://jcchdqi.org/.
Twice a year, NPCQIC holds Learning Sessions for the 50+ cardiac centers across the country to attend and share their practices, successes, procedures, and ideas. Over the last 12 months, with Sisters by Heart's help, parents played a much more active role in the NPCQIC learning network. The network is made up of cardiologists, nurses, dietitians, quality improvement researchers and parents of HLHS children. We all come together to have candid conversations about feeding, mortality and the struggles we face as parents and clinicians.
One major boundary both clinicians and parents noticed in the pediatric congenital heart community is a communication gap. This large gap (acknowledged by almost everyone involved in the collaborative) exists between two of the most important players on the team - the parents and the cardiac clinicians. As you know, there's little room for miscommunication in the HLHS world.
By invitation from collaborative leaders, Sisters by Heart is actively participating in NPCQIC to bridge this communication gap - so that parents and cardiac teams are working as one. Sisters by Heart board members attend the Learning Sessions each fall and spring and participate in monthly telephone conferences with cardiac centers. As HLHS parents, we're working to empower all parents to play an active and vital role in our child's care; you know your child the best and your cardiac team lacks something every parent is blessed with - parental intuition.
Aside from the Learning Sessions held in Cincinnati each spring and fall, NPCQIC holds Monthly Action Period Calls. Parents engaged in the collaborative participate in these calls - sometimes to listen, sometimes to teach. There is limited space for these Action Period Calls, however, Sisters by Heart wants to make certain that all HLHS families are provided information on what is being discussed and who they can contact to get involved in the broader discussions.
The November Action Period calls included the following information/discussions. A special thanks to HLHS dad, Trent Neely, for providing this update:
Three new cardiac centers were added to the collaborative: Baston Children's, Children’s Hospital of Alabama, and Rainbow Babies & Children’s Hospital. The Collaborative is now made up of 54 centers across the country, meaning that over 90% of the centers performing HLHS palliation are involved with NPCQIC. It is very encouraging how open these centers are, working together to improve care for HLHS infants. With the new centers joining the call, an overview of how data is gathered, charted and discussed was given. Each center can view their own reported data and their relationship to how the other centers in the collaborative are performing.
The main topic of conversation during the November Call revolved around data transparency amongst centers. At the Learning Session in September, after reviewing successful transparency models from other national pediatric collaboratives, there was overwhelming agreement that NPCQIC centers should move towards transparency within the collaborative - so that other centers can see outcomes being attained amongst their peers. All parents on the calls and at the Learning Sessions supported a move to transparency; it is our belief it's the fastest way to "move the needle" on quality and improved outcomes.
There is definite momentum growing in the transparency movement and it appears as though NPCQIC is ahead of the curve on the topic. The next step in transparency is the formation of a "Transparency Workgroup" which will include parents, clinicians and possibly cardiac surgeons. Rob Beekman, M.D. also shared a TED Talk about transparency which embraces the "What Doctors Can Learn from Each Other" discussion.
If you'd like to learn more about the National Pediatric Cardiology Quality Improvement Collaborative, please email Kay Fricke, NPC's Parent Liaison at Kay.Fricke@cchmc.org. The collaborative's next Learning Session will take place April 25-26th in Cincinnati - so mark your calendars! We'd love to see more and more SBH families (moms and dads) involved in transforming the lives of HLHS infants and children.
"If everyone is moving forward together, then success takes care of itself." ~ Henry Ford (the second paragraph in this link is of particular poignancy - the Life of Henry Ford).
“Unity is vision; it must have been part of the process of learning to see.” ~ Henry Adams, The Education of Henry Adams
Remember, our voices are meaningful, our voices are needed.
A Mother's Perspective: The Other Sibling
If you follow our Facebook page, you may have seen last week that one of our Board members, Amy, had an incredible experience with her HLHSer, Bodie. Last weekend, Bodie had the opportunity to be the honorary captain of the Cal Poly Mustangs football team in San Luis Obispo, CA. If you haven't read his story, you can find more about it in this touching article here.
In addition to honoring Bodie, the Mustangs also honored Amy's older, heart healthy daughter, Sierra. We asked Amy to share a little of what led up to the decision to include Sierra in the evening.
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Last week, I chaperoned a fieldtrip with my daughter's 1st and 2nd grade class. As I listened to the peels of laughter coming from the middle row in my minivan, I tried to put my finger on what made those girls different than my sweet Sierra, sitting in the back row with one of her best friends, quietly talking and coloring. After much thought, I realized what it was. The girls in the middle row had a complete self-absorbed love of life so inherent in most 6 and 7 year olds.
Sierra, at 6 1/2 is, for the most part, happy. She is well adjusted. She loves school and has friends. She's joyful. But it's different than her peers. She doesn't have that wild-eyed innocence of youth, where the world is at your doorstep, and all opportunities abound. The innocence that allows one to forget all else and scream and shout in pure joy over the newest song or toy.
She has an empathy not usually seen in children her age. But there is also a heaviness about her. Her teacher has noticed it. My brother-in-law commented on it when he was visiting. I suppose that innocence was lost somewhere between being a precious 3-year old with a younger brother born with 1/2 a heart and confined to the hospital for 5 months...and being a first grader whose recently post-Fontan brother's course was so complicated that she never knows at the end of the day whether mommy will really be the one to pick her up...or whether mommy and brother will be at the hospital again and someone else will be picking her up. The uncertainty of this journey is hard for me...and I've had 37 years of life lessons to help me weather this storm. She's had 6 1/2. I can't even fathom how hard this is for her.
Parenting an HLHS child is hard. Parenting an HLHS child alongside a heart-healthy siblings is even harder. And when that HLHS child has complications, it borders on impossible. There is always such a tenuous balance to maintain, between focusing on your medically fragile child and other siblings.
The ebb and flow of caring for an HLHS child in particular adds to the complexity, I think. There are parts in this journey where you are in nothing but survival mode. Times where it is all you can do to focus on your HLHS child and getting through the day. Those are seasons where you have no choice but to rely on family and friends to share the burden in caring for your healthy children.
And then, for most HLHSers, there are seasons of rest. Seasons where life shifts back into a normal rhythm and your focus can be more evenly distributed. For our family, the first year was the roughest. And then we shifted into more or less normal rhythms. But the last few months have been exceptionally rough again, as we found ourselves unexpectedly thrown back into survival mode, when my son encountered complication after complication from his Fontan, including an additional open-chest surgery, low oxygen saturations, arrhythmias, a staph infection at his pacemaker site, and ultimately an interventional catheterization.
He is much more stable now, thankfully, and our delicate balance is slowly shifting back again. We are working on healing the hurts caused to his heart-healthy sister during that time. The survival mode was necessary, but the damage it leaves cannot be ignored.
So, when Bodie was invited to be an honorary captain of the Cal Poly football team, we were honored and humbled. But, my next question was whether Sierra could also be involved somehow. It was an awkward request, but in my mind, a necessary one. Sure, she hasn't gone through the physical aspects of this journey, but her world has been every bit as rocked. Her scars may not mark her chest, but they're just as deep.
And so we don't celebrate Bodie unless we can also celebrate Sierra's part in this journey. And sometimes that means saying no to amazing opportunities. This time, because of the generosity of some absolutely incredible people, it meant saying yes to an even better opportunity. While Bodie got to be the honorary captain, Sierra got to be an honorary cheerleader.
She got to lead the cheerleaders down the hill before the game. She got to stunt with the cheerleaders. She got to hold their signs. She was so proud. SHE was the shining star.
It was the perfect step on our path toward healing. And one we will cherish for years to come.
As difficult as it may be to ground yourself in this journey with HLHS, the majority of us recognize the impact on our heart healthy children, the siblings to our HLHSers. Our advice? Keep them at the forefront of conversations, the forefront of planning. Make them a part of the HLHS journey. Allow them to control situations when possible, give them choices - for they've likely not been given much allowance in that regard while you're in survival mode. Be mindful of their own unique HLHS sibling journey. And, when possible, make today and tomorrow about them. Focus on their strengths and find moments for them to shine - because they will shine and they'll knock your socks off.
A Unique Opportunity with What to Expect
As part of SBH’s ongoing mission to create awareness for all CHDs, we jumped at the opportunity to guest blog for What to Expect (WTE) to help educate and empower thousands of expecting readers!
As a first-time mom pregnant with my daughter, I never considered the possibility that my baby wouldn't be born 100 percent healthy. I was never nervous going in to an ultrasound or concerned when additional ultrasounds were scheduled. I assumed everything would be routine. When I was 31 weeks pregnant I learned that "routine" was not my reality. My daughter was diagnosed, in utero, with a critical congenital heart defect called Hypoplastic Left Heart Syndrome (HLHS), which essentially meant she would be born with half a functioning heart. That day (and every day since) my eyes have been opened to a whole new world that I didn't know existed..
Congenital heart defects (CHD) are found in approximately 1 in every 100 live births in the United States. CHDs range in severity — some requiring immediate surgical intervention after birth and some may only need monitoring as the child grows into adulthood. Regardless of severity, the key to increasing survival rates and decreasing complications in children born with CHDs is early detection and diagnosis.
The first opportunity for diagnosis is through pre-natal ultrasound. Detection is not always possible during anatomy scans however here are a few questions you can ask your sonographer for a more in-depth look at your baby's heart (provided by Boston Children’s Hospital)
1. Do you see 4 chambers in the baby’s heart?
2. Are there two upper chambers (left and right atria), each with a valve controlling blood flow out of them?
3. Are there two lower chambers (left and right ventricles), each with a valve controlling blood flow out of them?
4. Do the two vessels leaving the heart (aorta and pulmonary artery) cross each other as they exit?
5. Is the wall between the two lower chambers intact, without any holes?
6. Is everything else in the heart normal?
If the sonographer is uncertain or replies no to any of the above questions, ask your OB to refer you to a fetal cardiologist as soon as possible.
If the sonographer is uncertain or replies no to any of the above questions, ask your OB to refer you to a fetal cardiologist as soon as possible.
The second opportunity for diagnosis is at birth. Many babies with CHD are born with no signs or symptoms of a heart defect. My daughter scored a 9/9 on her APGAR. Had we not known about her fatal heart defect before birth she could have fooled us all into thinking she was a healthy newborn.
For this reason, many states (37 as of today) mandate a newborn screening test called Pulse Oximetry to detect critical congenital heart defects. Pulse Oximetry is a completely painless, noninvasive test performed typically within 24 hours of baby's birth. This test provides a reading of oxygen levels in the newborns blood. If the oxygen levels come out lower than normal range that could indicate a problem and the baby would be referred to a cardiologist for follow up. This very simple test is literally saving the lives of babies born with congenital heart disease across the country! Here is one baby whose life was saved by pulse Oximetry testing. Here’s another one. And here. And here.
While many hospitals across the country are already performing this test, not everyone is. When your baby is born ask your nurse for a Pulse Oximetry test to be done. Hopefully, they are already offering the screening, if not you can educate them on the importance of screening for heart defects and share the success stories linked in this post.
Time to Vote!
We were overwhelmed by the response we got from this year's Halloween Costume Contest. Thank you to everyone who participated. All of the children in these photos were born with Hypoplastic Left Heart Syndrome. We received over 80 entries. Now it is time to vote for your favorite!
Click here to visit the album on our facebook page:
HALLOWEEN COSTUME CONTESTLook through the photos and click the Like Button under your favorite picture. You may vote on as many pictures as you want.
Simple as that! The winner of the photo contest will receive a Sisters by Heart tote bag.
Voting will end on November 10th. The winner will be announced on our facebook page on November 11th by 5pm. Feel free to share this album with your friends. Happy Voting!
2nd Annual Sisters by Heart Avon Fundraiser
The month of November is all about Giving Thanks. What a better way to give thanks than supporting a charity and getting yourself something great at the same time? We're excited to announce that, once again, Allison Haug is hosting an Avon Fundraiser in honor of her niece, Catherine Jane. Because Sisters by Heart provided so much support to Allison’s sister in the wake of her diagnosis, Allison wanted to give back and host an Avon event, with 40% of the proceeds to go to Sisters by Heart! We are so honored and grateful for Allison’s generosity.
“Catherine Jane has a smile that lights up the entire room. In her short life she's gone through more than any child should have to, and her Auntie Allison would do anything for her. However, I had no idea what to do when we first found out she had HLHS. I knew I needed to be there for my sister, Kim and my brother-in-law, Jeff. But what could I say to them? I looked for support on the internet and thank goodness Sisters by Heart answered me. They sent a care package to Kim and Jeff and linked them up with people that could truly understand what they were going through, and to give them hope that things would be ok. I know SBH helped prepare all of us for what to expect once Catherine was born and gave us all (including me!) emotional support. I don't know what we would've done without SBH!”
To learn more about Catherine Jane and her journey with HLHS visit her blog:
www.newestbender.blogspot.com
Avon has such a GREAT product selection, with everything from jewelry, to makeup, to skincare, to kids’ items and a whole lot of stuff in between - not to mention all kinds of special deals going on. So, for those of you who haven’t checked out Avon in awhile, we wanted to give you a couple of product recommendations and suggest you head on over to Allison’s site!
STACEY'S PICKS
Tiny TilliaShopping Cart Cover
A perfect way to protect your little one from germs, especially during cold/flu season!
NATURALSKIDS Bath Time Body Paint
Stacey’s girls, Emmy and Zoe, LOVE these fun bath soaps. They’re roll on in fun colors; kiddos think they’re having fun, while parents know they’re actually getting clean in the process! And the scents are yummy! And did we mention they’re only 99 cents?!? They have fun Holiday scents as well, making great stocking stuffers!
MOISTURETHERAPY Daily Skin Defense Vitamin Mini Hand Cream
Our hands take a beating with all of the hand sanitizer we use during the flu/cold season. Help sooth dry hands with this perfect "throw-in-your-purse" sized moisturizer.
JENNY'S PICKS
SKIN SO SOFT Aroma + Therapy 3-PieceCalming Collection
Escape the stress of the Holiday’s with the soothing scent of lavender that stays with you all day.
Tiny TilliaSnowman PJ
Your little one will look adorable in this Snowman PJ set by Tiny Tillia.
KATHY'S PICKS
Tiny Tillia HoodedBath Towel
Dry off your little one in style with these adorable hooded bath towels.
Sterling Silver CZHeart on Silvertone Bracelet
Perfect bracelet for any heart mom!
These are just a few of the great deals going on at Avon right now. There’s never been a better time to pamper yourself, your kids, or someone you love than now – purchase some awesome Avon products and make a donation to Sisters by Heart while you’re at it!
FOLLOW THIS LINK TO START SHOPPING!
http://ahaug.avonrepresentative.com/online_events/AFCATHERINE
Make sure you use the link posted above so that the proceeds will go to Sisters by Heart. You should see “Welcome to my Sisters By Heart online event” written in red on the top right hand of the screen. If you have any problems let us know by emailing us at info@sistersbyheart.org.
Thank you again Allison for your generous support of Sisters by Heart!
A Heartfelt Donation: Avon
I’ll be honest. I grew up with Avon. Some of my earliest memories of my mom were of her thumbing through her latest Avon catalog (dropped off by our local sweet little old Avon lady), wearing Avon’s signature Odyssey perfume. But I hadn’t thought of Avon in years…that is, until a few weeks ago, when we were contacted by Avon representative Allison Haug. Allison let us know that her niece (due any day now!) was diagnosed with HLHS this past summer. Because Sisters by Heart provided so much support to Allison’s sister in the wake of her diagnosis, Allison wanted to give back and told us she wanted to hold an Avon event, with 50% of the proceeds to go to Sisters by Heart! We were so honored and grateful for Allison’s generosity.
I was excited to check out Allison’s website, with images of my mom’s Avon in my mind. Boy was I in for a surprise when I checked out the site! Although they still had all of the classic products, they have so much more now!!! Avon has such a GREAT product selection, with everything from jewelry, to makeup, to skincare, to kids’ items and a whole lot of stuff in between, not to mention all kinds of special deals going on. So, for those of you who haven’t checked out Avon in awhile, we wanted to give you a couple of product recommendations and suggest you head on over to Allison’s site!
Avon Reversalist Renewal Cream
Amy’s pick. WOW wow wow is all I have to say. I have pretty oily skin, so finding a nighttime cream that moisturizes without breaking me out is a tall order (yes, at 36 I manage to have both acne and wrinkles all at the same time which somehow doesn’t seem fair!). But this cream absolutely does! It manages to moisturize really well, yet do so lightly. I discovered this cream thanks to Allison’s event, and I’m so grateful – it will be my go to night cream from now on!
Nathaniel the Story Time Bear
A pick for our heart babies. How cute is this little bear?!? And he recites “Twas the Night Before Christmas”? Seriously, what better Christmas present for our sweet little heart babies?
NATURALS KIDS Bath Time Body Paint
Stacey’s pick. Stacey’s girls, Emmy and Zoe, LOVE these fun bath soaps. They’re roll on in fun colors, so kiddos just think they’re having fun, while parents know they’re actually getting clean in the process! And the scents are so yummy!!! And did we mention they’re only 99cents?!? And they have fun Holiday scents as well?
These are just a few of the great deals going on at Avon right now. There’s never been a better time to pamper yourself, your kids, or someone you love than now – purchase some awesome Avon products and make a donation to Sisters by Heart while you’re at it! Just use this link and make sure that BABYBENDER shows up as the coupon code!
Thank you again Allison for your generous support of Sisters by Heart!
Possibilities: Cord Blood Banking
With the recent flurry of stem cell research associated with HLHS infants, Sisters by Heart wanted to make certain our expecting families were aware of an important opportunity through Cord Blood Registry® (CBR®).
CBR offers the Newborn Possibilities Program which provides families, with an identified medical need, free cord blood processing and storage for five years. Because of the potential of newborn stem cells as a treatment for HLHS, CBR is accepting applications from families expecting a baby with a prenatal diagnosis of HLHS for inclusion in their program. Applications are reviewed and accepted on a case-by-case basis. CBR encourages all expecting HLHS families to apply. The ultimate benefit, if successful, would be treatment for HLHS… if your application is accepted: FREE banking and storage for five years.
"I had always thought about saving my baby’s stem cells but never had the funds to do so, that's why I am so excited about this program. The application is extremely simple, consisting of some personal information, a doctor's signature, and medical file to confirm the HLHS diagnosis."
~ Kristina Marsh, Expecting HLHS Momma.
We've asked another of our expecting moms to share her experience in applying for the Newborn Possibilities Program.
“Thank God for Sisters By Heart. At 19 weeks we were diagnosed with HLHS for our little "Peanut." I immediately turned to the internet and looked for others out there that had lived that horrifying day when I felt the world crumble. There they were, my Sisters that I have never had. One particular “sister” got stuck with me because of where we live, and THANK YOU GOD FOR HER. Natasha Saywer heard my cry for help and responded to me immediately. She put herself out there and came to meet me with her little heart baby, Evan. It was one of the greatest days of my life. My hope for help became a reality for me.
As I sat with Natasha over breakfast, drilling her with questions, I fell in love with her HLHSer, Evan. He's my hero. We discussed so many things, including cord blood banking. Natasha mentioned the potential for free banking through CBR. I looked onto the idea and ran with the information she'd provided me.
Three days after meeting Natasha for breakfast, I called CBR and inquired about such a program. A CBR representative informed me about the Newborn Possibilities Program. She described it as an easy, free process. I provided my email address and she emailed me everything that I needed. I filled out a short application and sent one page to my OBGYN for completion. Within a few days, I faxed the forms back to CBR.
A week after applying for the program, I received a phone call from my CBR representative. She told me that CBR's Medical Board approved my application for free banking and five years of storage, free of charge! I was ecstatic! After the first five years, we will need to begin paying $130 annual storage fee if we want to keep our baby’s cord blood stored for future use. But, the initial banking and first five years free is an INCREDIBLE savings.
Easy and Painless.... Thank you so much again Sisters By Heart and Natasha Sawyer for guiding me. Thank you so much Cord Blood Registry for accepting our application! I know Sisters By Heart does a lot behind the scenes and myself, my boyfriend and "peanut' are so thankful for everything you do not only for us but for everyone. We love you all’.
Leigh-Anne Dowdle
If you want to learn more about CBR’s Newborn Possibilities Program, please email us at info@sistersbyheart.org or visit cordblood.com.
Fontan Series: Lily's Story
The Fontan: Our Story
Hi my name is Julia. Our daughter Lily is 7 years old and has Hypoplastic Left Heart Syndrome (HLHS) and a pacemaker. She has completed the three-staged surgical repair and is growing and doing very well! We are a CHOP family, and you may have seen Lily’s face on billboards and print material in the Philadelphia area.
I was asked by Sisters by Heart to share our Fontan story with the group. I am always happy to give support and guidance to families who are in the midst of that extremely long wait inter-stage. I remember feeling like we were in a “holding pattern” for quite some time!
When I was approached to share our experience, I made SBH aware that it would not be one of a lot of sleepless nights or feelings of being totally overwhelmed. I don’t want to minimize the impact of having a child with complex CHD on one’s physical and emotional health, but to me the Fontan was just the next step that had to take place for our daughter to move on with her life. You see, I refuse to let the terms CHD or HLHS define who Lily is as a child, or who she will become as an adult. Granted, we never asked to be given a sick baby, but that was the card we were dealt. Some people say that “everything happens for a reason.” I’m still not so sure how I feel about that statement, but I do know that sometimes things happen differently then we planned.
Sometime between the initial diagnosis, and Lily being born I made the decision that I was going to do everything in my power to give Lily a life that was as “normal” as possible, no matter what it took. We all have different ways of seeing what is best for our child, and I in no means try to push my feelings onto others. I completely understand the anxiety and feelings of depression that come along with having a sick baby. I feel blessed that we had a cardiologist who wasn’t overly conservative and always told us to let Lily live life and have new experiences even with an HLHS diagnosis.
In 2009 at 3.5 years of age Lily was admitted to CHOP for her Fontan. My husband and I decided not to tell her that we were going to the hospital until a few days before the surgery as to not worry her. In Lily’s case, she tends to be a worrier, and we felt that telling her too soon would cause much undue anxiety and stress. We were first case that day, and Dr. Spray performed the Fontan surgery which only took about one hour total to complete. Lily was taken to the CICU immediately after surgery, and we were able to meet with Dr. Spray who said the surgery went very smoothly with no unexpected complications. (Thank god!) Lily had an extracardiac Fontan with a fenestration.
After our meeting with Dr. Spray, we were able to return to the CICU to see Lily. Her chest tube was removed later that evening, and by the next morning the nurses had her sitting up and taking her first steps around the room. Lily was fortunate in that she did not develop the pleural effusions that can sometimes be associated with the Fontan repair. Lily had her surgery on Friday July 9th, and was discharged home on Monday morning July 12th after a 3 day stay. Here is a picture that was taken the day of her Fontan.
It has been almost 4 years since that date, and Lily has been doing so well. She is in the first grade at our local public school, and is very smart. She requires no special accommodations in the classroom or during school activities such as physical education class. We do have a Medical Plan set-up with her school that the nurse and all teachers are aware of and follow, and I keep in regular communication with the school administration and faculty. Lily is also very active and participates in many sports including softball, gymnastics, and dance. She loves arts and crafts, swimming, and riding the roller coaster at Sesame Place during the summer.
So I guess what you can all see is that Lily is a pretty cool kid! Do I always have in the back of my mind that she is a heart kid? “YES!” Do I wonder on a regular basis whether she will someday need a transplant? “YES!” Do I worry what her life will be like when she is 30 and whether she will be able to have her own children? “YES!” But will I let these fears and uncertainties hold us or Lily back?? The answer is “NO.” And the answer is no for one reason, and that is because I choose not to. We are only given one life, and I want my daughter to have a life that is filled with wonderful, positive memories. I want her to not define herself as a “heart kid”, but as a kid with amazing heart!!
Julia Rowbotham, Lily’s Mom
Thank you Julia, for sharing Lily's story and allowing us to share in her inspiring journey!
Fontan Series: Aly's Story
When I started thinking about writing a post about the Fontan, there was one thing that really made me smile. I really had to sit down and think pretty hard to remember back to our daughter's Fontan and it was only two years ago. Over the last two years since our daughter, Aly, had her Fontan surgery, life has really taken a turn - a big huge turn towards NORMAL. We are living a life now that we dreamed of and honestly, weren't sure was attainable when we found out about her special heart. But now looking back, here is my reflection on the Fontan.
In hindsight, the anticipation for the Fontan was worse than the actual Fontan. I was a mess during the last few months leading up to the Fontan - worried about everything under the sun. Could we do this again? Could she handle this? How would it be with an almost two year old? What do we need to bring? Will she forgive us? Will she remember? What kind of clothes should we bring? What about shoes? What about sippy cups and her favorite snacks? I could go on and on and on... Here are the answers to these questions that I learned.
On the way to the hospital for our daughter's Fontan, I had a little breakdown where I begged my husband to turn around and go home. I was looking at my sweet girl who hadn't been in the hospital since she was discharged from her Hemi-Fontan at four months old. She had been living a typical baby life for 18 months and now we were forcing her down this road again. My husband reminded me that this was a decision we made long ago - to fight for our girl - and there was no turning back. All of this I, of course, knew but I needed to be reminded. So we kept on our way with our car packed to the ceiling with what I anticipated to be our every need for the next 7-10 days. (That was the average hospital stay for the Fontan that they had provided us with for planning reasons. Over the last few years I have noticed that this is pretty typical- of course, there are longer stays and there are shorter but on average I think 7-10 days is pretty accurate. You know, from my completely non-medically trained heart mom opinion :)
In pre-op on the day of her Fontan
Our daughter's Fontan went very smooth from "go". We were first case for the day so we got to the hospital early. Aly had a hefty dose of Versed and she was off to the O.R. 4 hours later, we were by her side in the PCTU. She was so PINK! She was extubated within an hour of settling in to her room and, as her Cardiologist put it, sailed through her Fontan.
A few hours post-op, on only a "whiff" of blow-by oxygen.
By day 4, we were told that clinically she would be ready to be discharged but she was having some excessive draining in her two pigtail tubes. So we spent the next four days just waiting for the drainage to subside. Aly really did amazing.
Day 6 post op, sitting in our hotel room (in the hospital) having a snack. You can see her drain tubes coming out from under her shirt.
She did have anxiety issues whenever doctors, nurses, volunteers, etc, came around but the hospital was really great working with us. They would do rounds outside of her door instead of around her bed and come in to see her one at a time. The nurses let us do her vital checks while they waited on the other side of the curtain. By day 6, we were off all monitors and had free reign of the hospital. We had to check in once for every 8 hour shift for vitals checks but that was it. Finally, on day 7, Aly had the last of her drainage tubes removed; we stayed one more night to be sure there would be no fluid accumulation after the tubes were removed and we were OUTTA THERE! Literally, simple as that.
Day 8 - DISCHARGE DAY! On our way home. :)
Emotionally, Aly did so well. She recovered well and doesn't seem to have too many memories of her Fontan. She remembers sleeping in the hospital and us being with her. She remembers watching movies and eating cheeseburgers in bed.
The biggest stressor in the Fontan planning process for me... "How was I going to keep a toddler entertained while in the hospital?" I had bags and bags and boxes of toys. My hope was to have a grab bag of sorts so that anytime she was having a hard time, I would have a new toy for her to play with. She was OBSESSED with singing cards at the time so I had gotten her a new one to open everyday. I bought all new sippy cups and every snack I could think of. In hindsight, I went a little overboard. :) I hadn't really taken into consideration that she wasn't going to be feeling 100%. The way she felt during recovery I would compare to how she acts when she has the flu at home. She just wanted to snuggle, cuddle and watch movies. We should have brought more snuggly blankets, pillows and movies and a few less toys. I am glad we brought the sippy cups and the snacks. Getting her to eat and drink after surgery was a little challenging but it was made a little easier that we had her familiar cups that she was used to and snacks that she loved. And it didn't hurt that she could eat cheeseburgers and tator tots for every meal if she wanted since those were her favorite. Nobody cared what she ate, as long as she was eating.
Another part of planning that I would have done differently is to bring more nightgowns and dresses (simple over the head outfits). It seems with most Fontan patients, if their stay is prolonged it is because of the darn drainage so you will be battling tubes when attempting clothes so things that slip on and off easily over the head were best for us. Aly spent most of her time sporting t-shirts and leg warmers. :)
Every hospital is different with their post-op guidelines. Some require post-Fontaners to get up walking ASAP and some aren't as adamant. Some insist on a fat-free diet and fluid intake restrictions and others don't. As with every other step of this journey, there is no standard that all hospitals follow. My advice would be to discuss this beforehand so you will all be on the same page as for what to expect post-op.
I know the Fontan is a scary thing to prepare for but we pictured it as a finish line. We know that there will be more ahead for our girl down the road but nothing we can anticipate or plan for as we had been anticipating the three staged surgeries. Looking back, for Aly it was the easiest recovery of all of the surgeries. There was no "Hemi- head" headaches to deal with or any of the struggles of Norwood recovery.
This is one of my favorite pictures of Aly. This was her 10 days after her Fontan. Playing outside like nothing every happened.
A Heartfelt Donation: Medical Masks in Anya's Memory
Many of our families appreciate most, our care packages which are specially designed for newly diagnosed HLHS families. We're always humbled when families contribute to our care packages in honor and memory of their children.
Today, we wanted to share a mom and daughter whom we hold close to our hearts. What better way to honor her motherly instinct than helping other moms do the same.
Karen and Anya Wockenfuss
I'm Karen Wockenfuss, and I consider myself blessed to be a heart mom. I found out at 19 weeks pregnant that my precious baby girl Anya had Hypoplastic Left Heart Syndrome. A parent never forgets those words "your baby has a congenital heart defect." She was born at 3:24 AM on August 27, 2012 weighing 6lbs 2oz. She had her Norwood procedure at two days old, and although the surgery went well she had a few complications afterwards (chylothorax and blood clots requiring lovenox injections). She also needed a feeding tube and had g-tube surgery at 6 weeks old. She finally came home on October 16, 2012, at 7 weeks old. Having her home was the best 15 days of my life, and I loved my new normal. I am a heart mom.
Karen's precious daughter, Anya
Anya suddenly passed away on November 3, 2012, for reasons unknown. I miss her so much. In becoming a heart mom I have met so many amazing, strong people, in those heart warriors still fighting and their parents. I am passionate about staying involved in the CHD community and keeping Anya's memory alive.
I make re-usable, machine washable face masks for adults and kids in cute prints. In Anya's memory, I am donating 50 of my adult face masks to Sisters By Heart to be included in their care packages. These will be especially useful for moms right after their baby has had the Norwood procedure. In addition to the initial 50, for every face mask I sell, I am also donating an additional one to Sisters By Heart.
To order your own face mask for $8 (or 2 for $15), please visit 'Crafting & Crochet by Karen' on Facebook: http://www.facebook.com/pages/Crafting-Crochet-By-Karen/172687209455948
To read the rest of Anya's story, please visit: http://emoreeandme.blogspot.com
Thank you, Karen, for thinking of our families in your time of grief. We know our families will truly appreciate this gift from your heart. Karen has been busy and has already shipped 100 masks to Sisters by Heart for inclusion in our care packages!
They're such a perfect addition to our packages, as we always love to promote health and happiness during the interstage period!
Karen's generous donation in memory of Anya