Next Hershey Hearts Meeting - March

The next meeting will be held on Saturday, March 15, 2003 from 1:00 - 3:00 p.m. at Fishburn United Methodist Church. Please note that this is a change in location from previous meetings. Everyone is welcome to come out and enjoy an afternoon of food and fellowship. Childcare will be provided. Please plan to attend the March meeting.

Driving directions:
Coming from Hershey Medical Center, drive east on 322 (W. Governor Road) for approximately 1 mile. At the 2nd traffic light, turn right onto 743 (Elizabethtown Road) proceed south for about 1 mile. Fishburn United Methodist Church is on the left after the traffic light at the Giant (Cocoa Avenue).

A Letter from the President
By Paul Sipe

It is the time of year that we are busy finalizing the plans for upcoming Hershey Hearts events. Over the next several months we have a variety of activities planned, including the March Support Group Meeting, Basket Bingo, Heartbeat Auction, and the 7th Annual Picnic.

The March Support Group Meeting and picnic in July are great opportunities to meet and socialize with other Hershey Hearts families in a casual setting, while the basket bingo and Heartbeat Auction will be our two primary fundraisers for this year. I encourage everyone to come out and participate and help make these events a success.

 We are still looking to fill the vacant member-at-large position on the Hershey Hearts Board. This position only requires that you regularly attend board meetings and act as a voice for the general membership. If you are interested in volunteering or have any questions about this position, please feel free to contact me.

Visitation Committee
By Kimberly Yearick

The visitation committee is anxiously awaiting more individuals who are willing to volunteer to visit with pediatric heart patients and their families in the hospital. Your stories and experiences provide hope to others who are in that same difficult situation as we all were facing at one time. Please consider giving your time. Currently volunteers are scheduled to visit approximately three times per year.

Valentine's Day, February 14th is also Congenital Heart Disease Awareness Day. It is important that we share our knowledge of the causes, signs, and prevention of heart disease, to expand awareness to all those we care about.

I would like to thank those who have supported us through Levi's third open-heart surgery in December. Surgeon, Dr. John Myers, is definitely one of our heroes! Dr. Christopher Zachary is another! Also, the care provided in the intensive care unit always goes above and beyond expectations. Thanks to all of you, and to Penny.

Anyone wishing to join the visitation committee, please call me or Sherry Noel.

Basket Bingo
By Terisa Johnson

Hi Everyone! We are in the process of planning our Annual Basket Bingo. This year it is going to be held at the Loyal Moose Lodge, located at 970 Cape Horn Road in York. The event will be held on Sunday, April 27, 2003 at 2:00 p.m. The doors will
open at 12:00 p.m. We are still in need of volunteers and sponsors. If you, or a person or business you know, are interested in being a sponsor, you can either choose to be a half sponsor for $30.00, or a full sponsor for $60.00, then that person or business will be recognized as the sponsor. Please make checks payable to Hershey Hearts, P.O. Box 163, Hershey, PA 17033-0163. Tickets for the event are $12.00 each. If  you are interested in helping that day, or would like to offer sponsorship, please contact Terisa Johnson. Thank you for your support. We look forward to seeing you on April the 27th!

A Beacon of Light in the PICU
by Rachel Hilker

It was quite a chilly evening in December, and I found myself standing beside the Penn State lion that welcomes you to the rotunda at Hershey Medical Center. It stands guard in front of the cafeteria entrance. I'm sure you've seen it before. I was suddenly filled with memories of being in that spot before back in June, and worrying about my son, David, who we had just handed over to the anesthesiologists up at the O.R. That morning was challenging for me, being the biggest test of strength to face in my short 19-month career as a mother. Funny thing through, standing there again did not leave me with any negative feelings because we had such a positive experience while we were there. What I remember most is the feeling of confidence I had in the dedicated staff that handled my child as if he was one of their own. From the anesthesiologists, Dr. Myers, Penny Porter, and Warren Smith, on to the wonderful nurses in the PICU and Intermediate Care Unit, they were all so wonderful, warm, and caring. I really felt that David was in the best hands he could be in to get through his ASD repair.

I was brought back into the present moment by the gentle hello of Myra Popernack, RN, CCRN. I turned to see a bright smile coming my way. Even though I had only spoken to her twice before on the telephone about this interview, when I saw her, I was overwhelmed by the feeling that I had known her forever. Maybe it was because she is a beacon of light and love whose dedication to caring for children and their families emanates from deep within her. Immediately I was at ease, and we proceeded to the dining room where I got to know more about her. If you haven't had the pleasure of meeting Myra before, let me tell you a little about her. Behind the caring smile is a highly skilled nurse who has found her home in the Pediatric Intensive Care Unit. In fact, she is a senior nurse clinician in the unit. Ms. Popernack has been a nurse since 1975. She joined the PICU staff at Hershey in 1977. She was drawn to this career by her love for children and her keen mothering instinct. Having three sons herself, Myra is more than qualified to understand the joys and fears of parenthood. We talked a little about the functions she performs in the PICU. Planning the care of her patients is at the foundation of her work. I was delighted to learn that this process is more in her hands than I had thought. Not being in the health care profession myself, I had a preconceived idea that doctors make the orders and nurses execute them. Learning more from Myra's perspective, I see now that she serves as a partner in determining the needs of her patients by bringing her knowledge and experience to the bedside, intuitively making decisions that best promote the child's recovery. She also provides valuable assistance to the resident doctors as well. Myra is also a teacher. Having the most experience in the PICU, she continuously contributes to the ongoing education of her fellow nurses. In a more direct manner, Ms. Popernack presents special classes to the staff about providing the specialized care required by our little cardiac patients.

Another important aspect of providing quality care to our children actually involves us, the parent. Myra conveyed to me the importance of open and honest communication between the parent and nurse. Your child's caregiver will do their best to clarify information for you, listen and understand your concerns, and tell you the truth about your child's condition. However, they can only do this if parents are willing to open up to them and share what fears they have, trust that the nurse is really there with their child's best interest in mind, and know that they care. Parents shouldn't be afraid to ask questions if they are uncertain about what is happening, and also should not feel embarrassed if they are scared. We all want to be strong for our kids, so we may put on our brave faces, but being willing to talk about our fears with a caring nurse is a good way to show that we are strong enough to ask for support when we need it.

I asked Myra what was most challenging about her life in the PICU. I could feel the emotional energy shift as she spoke about the tragedy of preventable situations. It is unfortunate enough to see children endure physical challenges that have been dealt to them naturally, but it is most heart breaking to Myra when a child comes in as a result of abuse, such as shaken baby syndrome, or an accident that could have been prevented if proper safety precautions had been taken, like using adequate child restraints in motor vehicles. Death is even harder to cope with in the PICU if it was brought on by events caused by human actions. I imagined these children in my mind. The emotion I felt was strong, angry, and sorrowful. I admire Myra for having the emotional strength to face these situations on a regular basis, and for wanting to commit herself to helping these families.

We turned to a happier thought at that moment, and I asked her about what she liked most about working in the PICU. She praised her fellow staff members by acknowledging how dedicated they are to helping our children get back into our arms. I really sensed that she has the utmost confidence in their abilities and honest compassion. Reflecting back on our time in the PICU, I agree. The staff there is more than terrific. Ms. Popernack also enjoys the opportunity to interact with the families she meets. She takes her patients on as if they were her own children. Technology is also intriguing to Myra. Having served in the PICU over the years, she has seen many changes in the hospital, the staff, and the advances in equipment and procedures that have come with our rapidly changing technology. It keeps it interesting for her, and challenges her to learn more each day. These things together are what motivate her, and she is happy to be able to make a difference in many lives.

Hoping we could benefit from Myra's experience, I asked her if she had some advice to give to parents in order to facilitate their child's stay in the PICU after heart surgery, and what things could we do to make it easier for the nurses to provide the best care. "Plan ahead," she said. If your child is old enough to understand what is going on, take the time to explain what will be happening and what to expect. One tip she gave was that if your child is fearful that you may leave them in the hospital, and you just want to get out of the room for a little breather, you can reassure them that you are not abandoning them by leaving your car keys in their custody. This gives them the security of knowing that you can't drive off if they have your keys! Parents can also help their children recover by staying healthy themselves. Myra says, "Take care of yourself." Something I didn't know about, that she pointed out, was that there is a fitness center on the grounds that parents can use. Besides the obvious physical benefits, exercise can help you work off some of the stress and help you clear your mind. Parents should also try to get plenty of sleep and eat regular, healthy meals. The most impressive advice though from Myra is to help the nurses out by trusting them, and being honest with them. Good communication is essential for ensuring that your child is getting the best care from each individual that loves them; the family, the physicians, and the caring nurses.

It was truly an enjoyable talk I had with Myra Popernack. Even though she didn't directly care for my son back in June, I felt her love shine through the other dedicated nurses that work with her. I would like to thank her again for sharing her thoughts with us, and I would like to wish her many more years of fulfillment in the PICU.

Treasurer's Report
By Jill Hester

In the last newsletter, it was reported that the total balance in both our savings and checking accounts as of August 31, 2002 was $16,388.13. For the months of September, October, November and December 2002, our receipts totaled $3,256.99. $308.00 was designated for the "For Hearts" Fund from the Creative Memories Fundraiser Crop, $110.00 from the "Special Effects Cut-A-Thon", $250.00 in Survival Kit Sponsors, and $2,512.78 in various cash donations. The savings account earned $76.21 in interest.

Disbursements totaled $4,099.63 from September through December. They included $318.00 to the "For Hearts" Fund, $100.00 for the American Heart Association Heart Walk, $1,234.20 for the 2003 Basket Bingo, $150.00 for the 2003 Picnic, $602.24 for the September newsletter printing and mailing, $388.85 in membership meeting expenses, $69.45 for the Family Meal Program, $588.09 for Survival Kit costs, and $16.80 in miscellaneous expenses. Hershey Hearts also purchased two rocking chairs for the Nyes Road Clinic for $632.00.

The total balance in both our savings and checking accounts as of December 31, 2002 is $15,545.49.

As always, if anyone would like to make a donation or contact us for any reason, our mailing address is:

Hershey Hearts
P.O. Box 163
Hershey, PA 17033-0163

Family Portraits
By Kelly Martin

Where do I begin? Fifteen months ago seems like an eternity. That's how long ago Christian came into our lives. Our first son, Cody, was only 14 months when we found out I was already three months along with our second son. What a shock and a surprise all at once!

My pregnancy was a normal and healthy one with no problems until close to my due date. Christian just didn't want to
come out! Finally on July 25, I went to Women and Babies for induction. Still after all day, Christian finally came into this world on July 26 at 4:50 a.m. He was a healthy, happy, crying baby boy. How relieved we all were that he was finally here. 

The next three to four months I don't know how I survived, or how anyone else in this situation does either. When Christian was two days old, we found out everything that was wrong with him. He has a VSD, ASD, left transposition the Great Vessels, and mild Ebstein's anomaly. He spent day three and four of his life in the NICU at Hershey. We met with Dr. Mart of the Children's Heart Group, and he explained our situation regarding Christian. I believe from the first phone call from our pediatrician, to the fourth month of Christian's life, I lived in a state of shock. I don't know how I carried with everyday things.

When Christian was two months old, he had pulmonary banding done by Dr. Myers. How relieved we felt that someone could help our "little miracle" get better. Since then, Christian has been a different child. He has grown and developed into a little simple boy. He turned one this past July, and is starting to walk. We just found out from Dr. Mart that we don't need to have surgery again until spring of 2003. Hopefully that will be our last surgery, but you never know!

How do we thank people like Dr. Mart, Dr. Myers, and all the other "miracle" workers who save our children's lives? Words just don't seem to be enough, but we know that God above will repay them all when the day comes. Thank you all, and God bless.

Wish List
by Jill Hester

The Survival Kits that Hershey Hearts is providing to our families when their child is receiving treatment at Hershey Medical Center is an on-going project and continues to be well received and appreciated by the families. The canvas tote bags printed with the "heart in hand" design are filled with many items to help the families during which can be a very stressful, both emotionally and financially, time. They are an important way for Hershey Hearts to support and help families of children with heart disease. On average, Warren Smith, our pediatric cardiac social worker, distributes about 12 survival kits a month.

If you would like to donate any items (perhaps in honor of a birthday, special occasion, etc.), or can obtain donations for the Survival Kits, the following is our "Wish List":

* phone cards
* Individually wrapped snacks
* Mints or hard candy
* Toothbrushes and toothpaste
* Purse size packs of tissues
* Travel or personal size toiletries

If you can donate any of these items call the Hershey Hearts number at 1-800-864-2349 mailbox #3388.

What's On Your Mind?
by Rachel Hilker

To those of you who don't know me yet, let me introduce myself real quick. My name is Rachel Hilker, and I am looking forward to being your new newsletter editor. My goal is to continue the standard of quality and information that you have grown to enjoy in this publication. Beyond proofreading, I would also like to pull together information for you by means of articles that look at different people's perspective and experiences with congenital heart disease. Being just one person though, my perspective is limited, so I am reaching out to you for input and suggestions.

At the December Board meeting it was suggested that we explore the issue of school-age children and the challenges they face with medication at school, peer questions, and special needs. My children being very young still, I would like to hear from those parents who would like to share their experiences or tips they may have for handling some of these issues. I'd like to bring this article to you in the next publication.

Please feel free to share your ideas with me for articles you may want to see, issues you would like to have explored, and subjects that you may want to know more about. Thank you for being willing to share your thoughts. I am looking forward to hearing what's on your mind! You can reach me by direct letters to Hershey Hearts, P.O. Box 163, Hershey, Pennsylvania 17033-0163.

We Need Your Help!

Please consider volunteering for the following positions in Hershey Hearts:
. Member-at-Large
. Picnic Chairperson
. Fundraising Committee
. Visitation
If you have any interest in volunteering for any of these positions, or would like to be on one of the committees please let me know. I can be reached by leaving a message on the "Hershey Hearts" phone system at 1-800-864-2349 ext.3388

Coming Events and Reminders
Mark your calendars for the following events in 2003:

.  Hershey Hearts Support Group Meeting Saturday, March 15, 2003, from 1:00 - 3:00 PM at Fishburn United Methodist Church.
.  4th Annual Basket Bingo Sunday, April 27, 2003 at Loyal Moose Lodge, 970 Capehorn Road, York, PA.
.  Heart Beat Auction Monday, June 9, to Friday, June 13, 2003 in the CMN room at Hershey Medical Center.
.  Hershey Hearts Picnic Saturday, July 19, 2003 at Hoffer Park in Middletown with entertainment by Steven Courtney.
.  Board Meetings are held the third Monday of every month.
.  If you have any questions, suggestions, or entries for the newsletter please send them to Hershey
   Hearts, P.O. Box 163, Hershey, PA 17033-0163.
.  If you know of a family that would like to receive this newsletter or would like to be removed from the
   mailing list, please call 1-800-864-2349, mailbox #3388.
.  If you are moving or have an address change, please call Hershey Hearts at 1-800-864-2349, mailbox
   #3388 to give the correct address.