Several other propositions to reach and benefit "heart families" are currently being pursued. They include: providing a survival kit to families in the hospital (to include phone cards, meal tickets, tokens for the washer/dryer, gift certificates, etc.), a Hershey Hearts Memorial Fund, supplying items (games, toys, art, etc) for the new clinic site on Nyes Rd., and to create a Cardiac Corner in the Library on the 7th floor of HMC. The above list is not all inclusive and if you have any suggestions or would like to help investigate any of the above ideas please call and leave a message on the Hershey Hearts phone system at 1-800-864-2349 ext. 3388 or call or e-mail any Board member.

What is it? Temper tantrums are episodes of uncontrolled crying and screaming. Commonly during the tantrum, the child will throw himself/herself on the floor and thrash about.

How long does it last? Temper tantrums occur most between the ages of 1 and 3 years. As the child learns the inappropriateness of his/her behavior, the tantrums will begin to stop.

How common is it? Temper tantrums are quite common, particularly for toddlers or young children. This is the age when your child is asserting his/her individuality. The frequency of this behavior normally peaks between 24 and 30 months.

How is it acquired? Temper tantrums usually begin as an expression of your child's frustration. Usually this behavior becomes rewarded by your giving increased attention. Then tantrums continue to occur, not only as a reaction to frustration but as a method of obtaining attention.

What can you do? It is often not possible and not advisable to avoid these situations which trigger your child's tantrums. When the tantrum occurs, remain composed. Do not reward this behavior with attention. This includes attention in all forms, giving in to his/her demands or using counter force such as hitting. Ignore the tantrums. Turn around or look away. If able, place the child in a safe place (room, playpen, crib) and let them alone until they can get themselves under control.

Changing your behavior towards your child's tantrums may cause these to occur less frequently. Occasionally the tantrums will get worse and occur more frequently before improvement is noticed. This worsening is because your child was used to receiving attention for the tantrum. It may take him/her awhile to realize that now the tantrums are being ignored and the family is not giving in.

The next two days seemed to drag on forever. Wanda found it hard to spend time with Ellen. I think a lot of it had to do with the fact that she couldn't do anything for her. I seemed to spend hours with Ellen. Watching the monitors, rubbing her arms and legs, and singing to her. I would sing songs from my childhood, songs like Twinkle Twinkle Little Star, Jesus Loves Me, and He's Got the Whole World In His Hands, among others. I couldn't remember all of the words to all of the songs I would be singing, but it didn't matter. I just wanted to be there.

Monday finally came and it was one of those days where you wait and wait. There were two other minor surgeries planned that morning so Ellen's surgery didn't start until about eleven in the morning. Once they finally took her into surgery time seemed to slow down. We waited for what seemed like much longer than Doctor Myers originally said, but I guess it really wasn't. About half way through the surgery one of the nurses came out to update us on the progress. She said all was going well and that they were getting ready to put Ellen on the bypass machine. The next time the nurse came out she told us that Ellen was off the bypass machine and everything went fine. She told us that it would be another hour or so while they finished up and moved Ellen to the SICU. Finally, it must have been about six in the evening that Doctor Myers came out to give us an update. He was very positive about how the procedure went and he said that we should be able to go back and see her shortly.

We finally got in to see Ellen at about seven. I wasn't prepared for what came next. There was Ellen, lying in a bed. At least that's who they said was lying in the bed. It was difficult to see her through all of the wires and tubes. She was still on the ventilator, two chest drainage tubes, all of the IV's and electrodes.

Over the next few days things started changing. Different medications were stopped. They started working on getting her off of the ventilator. I guess it was Wednesday or Thursday they had the ventilator off and into an oxygen tent. This was the first big milestone. I'm not sure how long it was before we could finally get to hold her, but that was the next huge milestone. I remember giving her, her first bath. That was an experience. She seemed so fragile.

We knew Ellen was going to need additional surgeries, one or two. That came at 10 months, a little sooner than expected. But we survived that too. Ellen has to go back for checkups once a year. And she is still taking medication, that will probably continue for the rest of her life. But one thing is for sure. There is never a day that I look back and say I wish that never had happened. There are many people, who say to me, "How were you able to cope? How were you able to make the decisions you did?" I just answer, "I did what I had to do". Which was about nothing, I just "Let Go and Let God". Ellen went away to Heart Camp this year for two weeks. I can't believe how much she has grown.

I thought this little summary might be helpful to those of you just beginning this experience and those of you who have had the pleasure !! of the experience.

Too many times families apologize for this behavior and are deeply upset by their child's actions. To know this is normal doesn't always make it better, but do know that we as health professional are very accustomed to this activity (most of us have been through it too!!) and almost expect it given the circumstances of the health visit. So "CHIN UP" - things do get better!!

It's time to get started planning the year 2001 Hershey Hearts Basket Bingo. We are in need of a PA system, ideas and also volunteers for the day of the bingo. Next year the Basket Bingo is going to be held April 29th 2001 at the Red Lion Senior High School cafeteria. If anyone knows of someone or wants to be a sponsor of a basket please let Terisa Johnson know by the first of the year. You can reach Terisa at (717) 244-2317 or Terisa'sbaskets@blazenet.net.

The 4th annual Hershey Hearts picnic was held on Saturday July 15th at Hoffer Park in Middletown.

It was a fun day filled with clowns, face painters, a ventriloquist that was entertaining for all ages, and not to mention great food that was provided by all of you.

A big thank-you to all that helped with the picnic.

Our second Heart Beat Auction/Raffle that was held the week of July 10th-14th at Hershey Medical Center was another great success, raising $7,622.00 for Hershey Hearts. We had wonderful prizes this year thanks to almost seventy businesses and individuals who donated prizes. Congratulations to Sandi Bair, a Hershey Medical Center employee, who won the California Vacation!

I'd like to take this opportunity to thank everyone who helped make the event the success that it was. Thank you to the following committee members: Wanda Reinsburrow, Joyce Teeter, Terisa Johnson, Judy Byrne, Kelly Andre and Olga Blouch, and to everyone that helped solicit prizes. Thank you to the Teeter's, Garvin's, Reinsburrow's and my husband, Jim for their help in setting up the auction items at the Medical Center. I'd also like to thank Beth Dundorf, Joelle Scholl, Kelley Houtz, Laura Rainieri, Shari Keyser-Groff and the committee members who helped sell tickets the week of the auction, especially Joyce and Danielle Teeter. We had a great photo collage of our Hershey Hearts kids displayed at the auction that was made by Ellen and Wanda Reinsburrow. Those pictures of our beautiful kids certainly sold a few tickets!

It definitely was a group effort to run the auction, but I want to offer my appreciation to all of the Hershey Hearts members that supported the auction by buying tickets and/or selling tickets to family, friends, co-workers, etc. We had a great response with tickets being sold by mail-ins. I was thrilled with the amount of money we were able to raise, even without selling tickets at the picnic. With just a little effort from all of us, we can make the next Hershey Hearts Heart Beat Auction/Raffle as successful as we want it to be!

As always, our program is accepting new volunteers either willing to visit families during their child's hospitalization at Hershey Medical Center or accept phone calls from families of children receiving cardiac care. If you would like to join our family of volunteers please contact April Weaver at (717) 627-1229 or e-mail at Nontradmom2001@netscape.net or Kelley Houtz (717) 657-7098 at Bhoutz@paonline.com.

For those of you that have not been scheduled to visit since July, you will find new coloring books in the portfolio. The coloring books are for the volunteers to give to patients during visits in an effort to brighten their day. We have a lot of coloring books, so please hand them out!

As a reminder to those who are scheduled for visitation, please contact Warren at (800) 864-2349, mailbox #8343 or directly at (717) 531-8343 to inform him of the hours you intend to be at the hospital for visitation. It is assumed that if you do not call Warren, then you are not coming for your visit and the black portfolio will NOT be in the lobby for you. If you call and receive a message that Warren is on vacation, please contact Mary Lou Box at (717) 531-8521 and ask the operator to page her for you. Mary Lou oversees the Visitation Program when Warren is not available.

Wanda and I were sitting in Wanda's room talking about various things, things that I'm sure were trivial compared to the news we were about to receive. We had been waiting for about forty-five minutes, starting to wonder and worry about what was taking them so long with Ellen. Just as I was about to go looking for someone Ellen's pediatrician came into the room. Even before he opened his mouth we knew something had happened. He was out of breath, as if he had been running, and he had a frightened look on his face. I think that it was at that moment that I had my first feeling of helplessness from being a father.

Ellen's pediatrician began with "There is something wrong with Ellen." He went on to explain that while the nurses were giving Ellen her bath she began to turn blue. The nurses gave Ellen oxygen, but that didn't seem to provide any relief to the situation. Whether it was luck or a blessing Ellen had been born in a hospital that had a pediatric cardiologist on staff, and he was in the hospital at that time. He was called to take a look at Ellen and immediately gave Ellen prostaglandin, a medication that causes the ductus arteriosis to stay open. The ductus arteriosis is a vessel that is used by infants inside the womb to circulate blood through the body. During pregnancy the lungs do not function therefore blood does not get oxygenated through the lungs. The blood passes back through the body from the right ventricle by way of the ductus arteriosis. Usually, within a week after birth this duct naturally closes.

The pediatric cardiologist explained that he could not completely diagnose Ellen's defect, but he did explain it as being a very critical condition. He explained that there was nothing that he or the hospital could do to treat the situation. However, he did go on to tell us that Hershey Medical Center had one of the areas most capable pediatric cardiology department and that if Ellen were going to have any chance for survival that she needed to go there immediately. Again, whether it was luck or a blessing where Ellen was born is only fifteen miles from Hershey Medical Center. The hospital contacted Hershey and arranged for an ambulance to come and pick up Ellen.

About fifteen minutes went by when the ambulance arrived and we needed to leave the room so the doctors could evaluate Ellen's condition and prepare her for transportation to Hershey. It was about another thirty minutes before the transport doctor came out and explained the procedures for the transportation. Wanda and I had to drive to Hershey because there wasn't room in the ambulance. I think that was a good thing because it gave us time to be alone together. I think that it was at that point that everything started coming together. I remembered a sermon that my pastor Rev. Bruce Gerhart gave the Sunday before Ellen was born. He talked about the first sermon he had to give in seminary and how he had worked all the previous week about what he was going to say, but just couldn't come up with the right words. So when he got up in front of the congregation he looked like a deer in the car headlights. Now in the front row of the church was one of his instructors and she held up a sign, just so Bruce could see it and no one else. The sign read "Let Go. Let God".

At that point, during our drive to Hershey, these four words were racing through my head, Wanda and I came to the conclusion that we no longer, and probably never did, have control of Ellen's life or destiny. We decided that if Ellen were to survive or not, it was out of our control. I certainly am not saying that I was at peace, but I truly believe that I was ready for whatever was to come.

I don't recall how much time passed but we finally got to Hershey and met with several people. Finally we met with one of the pediatric cardiologists who explained what was wrong with Ellen. Through the use of an Echocardiogram they were able to diagnose Ellen with Hypoplastic Left Heart Syndrome (HLHS). This is the condition where the left side of the heart, which pumps blood to the body, did not develop correctly. A little while later we met with a pediatric cardiothoracic surgeon and John Myers. He explained what happened, how rare the condition is, and how serious the situation. He explained that there were three options, a heart transplant, surgery, or let Ellen die. Well, as I said before it was either luck or a blessing, at this point I will stop mentioning luck because this entire event has been filled only with blessings, that we were in one of the best Hospitals in the world with one of the best surgeons in the world for this type of surgery. We knew that if Ellen were going to die it wasn't going to be because we didn't try. We also knew that a transplant was risky even if a heart became available. So it was onward to surgery, except there was one delay. It was late Friday afternoon and they weren't going to do the surgery until Monday. Ellen was starting to hyperventilate so it was decided to sedate and paralyze her to control her breathing.