Welcome to Baby Hearts Press!

Baby Hearts Press is an independent publishing company that has been providing books and resources for the congenital heart defect (CHD) community since 1997. Owner and founder, Anna Jaworski, is the mother of a young adult with the complex congenital heart defect known as hypoplastic left heart syndrome (HLHS). She is the author of two books, editor of two books, a contributor to a number of books as well as a public speaker and internet talk radio show host of Heart to Heart with Anna.




The Heart of a Father

The Heart of a Mother

Edited by Anna Marie Jaworski and Bob Daigneault

Foreword by Ray Fedderly, M.D.



Baby Hearts Press, 2009

ISBN: 0-9652508-3-0



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Table of Contents



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Foreword by Ray Fedderly, M.D. i
Preface by Anna Marie Jaworski v
Introduction by Bryan Rothlein vii


Determination
Chapter One: Dads in the Hospital
St. Michael's Triumph by David Hills 3
Just Being There by Rob Springham 9
Learning with Grace by Dan Scheller 11
Dad in the Hospital by Steve Morgan 14


Chapter Two: CHD Care Options
Samantha's Fight by Steve McCain 15
Mitchell, Our Gift from God by Doug Kinz 20
The Norwood Procedure: Looking Back by Ryan Farmer 22
The Gift of Life by Gary Tucker 28
Always Believe! by Greg Myers 31
A Short Life by Doug Gibson 33
Life Lessons by Ian Truscott 35


Chapter Three: Becoming a Daddy
Faith, Our Miracle Baby by Charlie Triller 41
Daddy's Little Miracle Man by Andrew James Wuertzer 43
Becoming a Daddy by James Peterson 52
Supportive Dad by Steve Morgan 55
Healing the Heart by Ken Burns 64
I am Not Diabled; I am a Dad by Anthony Pugliese 66


Chapter Four: Catch 22
Stay-At-Home Dad by Michael Madson 69
Should I Stay or Should I Go? by Alan Nimmerfroh 73
Determination Is The Key by Leonyd Zolyar 77


Inspiration
Chapter Five: Marriage
Battling the Dragon by Andrew Ward 85
My Hero by Dan Etheridge 89
Before It's Too Late by Ian C. Berry, M.Ed. 91
CHD 101 by Todd Hosea 97


Chapter Six: Special Issues
Jacob's Bright Smile by Tim Bretthauer 101
One of God's Special Children by Stephen Slobodnik 107
A Miracle for Austin by Ian C. Berry, M.Ed. 112
Logan's Story by Rick Valle 122
Selected Letters to Katie by David Nowell 126


Chapter Seven: Faith
St. Michael, Pray for Us by David Hills 139
Let Go and Let God by Rich Reinsburrow 142
Jeni's Story by Paul Sorenson 144
The Heart of God, Our Father by Kevin Kilkeary, Jr. 149
Assurance through Faith, Insurance for Life by Chris Ragner 152


Chapter Eight: Short Journeys
Julie: A Gift to Humanity by Les Kerr 161
Journey with Karen by Theodore Klein 164
A Very Special Man by Linda Miller 170


Dignity
Chapter Nine: Dads Around the World
The Hedgehog and Moon River by David Simpson -- United Kingdom 177
Giving a Life Line by Adrian Walker -- United Kingdom 184
A Fontan Journey by Ray Tinetti -- Australia 186


Chapter Ten: Shooting Stars
To Alex, My Best Teacher by Diego Gaston 197
Seventy-Eight Days Still on My Mind James Eggleton 200
Sydney's Legacy by Jay Taylor 203
Moving On by Diego Gaston 207


Chapter Eleven: Grandfathers
The Gift of Sam by Rick Johnson 211
Grandpa Quilter by Jess McCain 219
My Grandson Austin by Charles R. Berry, Ph.D. 220
Colena's Heart by Michael Dakovitz 222
A Calling in Disguise by Bob Daigneault 225


Chapter Twelve: Adults with Congenital Heart Defects
Who Are We? by Steve Catoe 231
Broken Hearts Club by Max S. Gerber 232
Music Man by Kevin Kienlein 235
Julie, the Apple of My Eye by Les Kerr 241
Pioneer Man by Jim Larson 243


Appendix: Native Language Essay and Poem
255
Glossary 263
Bibliography 273
Index 277





DISCLAIMER:

This book is not intended to be medical advice. Medical information described in this book is solely for illustrative purposes.

This book is not intended to be a text for medical treatment of children with congenital heart defects (CHDs). Parents should consult with medical personnel whenever they feel compelled, regardless of what is written in this book.

The area of congenital heart defects is constantly changing. This book has reported some fathers’ and adults’ past experiences. For a more in-depth analysis of treatment of CHDs, the reader is encouraged to visit the library or conduct an online search in relevant medical journals. Except for Dr. Fedderly, these fathers are not human medical doctors.

Every effort has been made to insure this book is as accurate as possible; however, there may be mistakes, both typographical and in content. Consequently, this book should not be used to define medical treatment for any child. Many of these stories are written from fathers’ memories of what has happened with their children many years after diagnosis. These fathers may have been in shock when given certain medical information, thus there may be inaccuracies. These fathers have taken great pains to write with as much accuracy as possible.

The purpose of this book is to inspire others. The authors and Baby Hearts Press shall have neither liability nor responsibility to any person or entity with respect to any loss or damage caused, or alleged to be caused, directly or indirectly by the information contained in this book.




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should not be substituted for professional care or attention by a qualified practitioner. Always check with a medical professional if you have any questions or concerns about a specific condition and always check with your doctor before making any changes in care based on what you might read at this site or elsewhere. You can contact

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