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    Jenessa's Journey: Then and Now
    Jenessa's Journey: Then and Now
    Jenessa's Journey: Then and Now
    Ebook139 pages1 hour

    Jenessa's Journey: Then and Now

    By Debbie Sherman

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    THEN Follow along with the author as she learns, at only four months pregnant, that the baby she is carrying has severe heart defects and Down syndrome. Step with her into the delivery room, the hospital rooms, the operating rooms, and into her heart; into her life. Watch as her child touches the lives of everyone around her. Read along with Douglas King, MD, a prominent childrens cardiologist, as he discusses the intricacies of Jenessas heart defects and surgeries. Enter into the neonatal world of care with Georgia Ditzenberger, a dedicated neonatal nurse practitioner, as she articulates Jenessas earliest days. Journey with the mother through the first three years of Jenessas miraculous life.

    NOW The original Jenessas Journey has been edited and added to, bringing you forward into Jenessas family life eleven years (and four new siblings) later. Meet her sister and two brothers, who also have Down syndrome, and her sister from West Africa. Hear from her older brother. Listen as her father shares his biggest pet peeve. Learn about homeschooling children with special needs. Watch as God weaves together a family full of love, joy, and abounding strength. Jenessas Journey, Then and Now, is a valuable tool not only for parents, friends, and families of children with disabilities, but for doctors, nurses, and students as well.

    LanguageEnglish
    PublisherWestBow Press
    Release dateMar 4, 2014
    ISBN9781490826523
    Jenessa's Journey: Then and Now
    Author

    Debbie Sherman

    Debbie is the mother of eight children, ranging in age from eight to twenty-eight. Four of them have Down syndrome, and five of the eight are adopted. Debbie is a stay-at-home mom, wife, freelance writer, speaker, homeschooler, and president and co-founder of the North Coast Down Syndrome Network.

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      Book preview

      Jenessa's Journey - Debbie Sherman

      26161.png

      Jenessa’s Journey

      Then and Now

      Debbie Sherman

      26178.png

      Copyright © 2014 Debbie Sherman.

      All rights reserved. No part of this book may be used or reproduced by any means, graphic, electronic, or mechanical, including photocopying, recording, taping or by any information storage retrieval system without the written permission of the publisher except in the case of brief quotations embodied in critical articles and reviews.

      WestBow Press books may be ordered through booksellers or by contacting:

      WestBow Press

      A Division of Thomas Nelson & Zondervan

      1663 Liberty Drive

      Bloomington, IN 47403

      www.westbowpress.com

      1 (866) 928-1240

      Because of the dynamic nature of the Internet, any web addresses or links contained in this book may have changed since publication and may no longer be valid. The views expressed in this work are solely those of the author and do not necessarily reflect the views of the publisher, and the publisher hereby disclaims any responsibility for them.

      Any people depicted in stock imagery provided by Thinkstock are models, and such images are being used for illustrative purposes only.

      Certain stock imagery © Thinkstock.

      ISBN: 978-1-4908-2651-6 (sc)

      ISBN: 978-1-4908-2652-3 (e)

      Library of Congress Control Number: 2014902820

      WestBow Press rev. date: 2/28/2014

      Contents

      All

      Acknowledgements:

      Then

      One

      Two

      Three

      Four

      Five

      Six

      Seven

      Eight

      Nine

      Ten

      Eleven

      Twelve

      Thirteen

      Fourteen

      Fifteen

      Seventeen

      Now

      Eighteen

      Nineteen

      Twenty

      Twenty - One

      Twenty - Two

      Twenty - Three

      Twenty - Four

      I’ve heard it said, that if our lives

      look like everyone else’s.

      then we aren’t doing things God’s way.

      Our life doesn’t fit the cookie cutter mold of

      What most of the world considers normal.

      Or practical.

      Or sensible.

      Or even smart.

      Hopefully, that means we’re getting it right.

      ALL

      God says we are all created in His image.

      Not some of us.

      All.

      He doesn’t say "Some of you will look like me,

      the rest will be created differently and won’t have any worth."

      We all have worth.

      Not some of us.

      All.

      We all have imperfections.

      Not some of us.

      All.

      We are all sent to earth for His purposes.

      With reason. With hope. With planning.

      With a love we will never comprehend while here on earth.

      Not some of us.

      All.

      None of us are accidents.

      God doesn’t make mistakes.

      We are all sent here in the body He sculpted.

      In the packaging He desired.

      With the likeness He chose.

      We are all beautiful.

      We are all loved.

      We are all what He wanted us to be.

      Created in His image.

      Not some of us.

      All.

      This book is lovingly dedicated

      to all my J’s:

      Justin

      Jackie

      Jessi

      Jenessa

      Jaden

      Jayla

      Jamey

      and

      Jaxson

      I love you all to pieces

      Acknowledgements:

      A very special thank you to

      Douglas King, MD, from the

      Pediatric Cardiology Center of Oregon

      and

      Georgia Ditzenberger, NP

      now at the Neonatal Clinic of

      UW Health Hospital in Wisconsin

      for sharing about Jenessa’s early days, for their

      time in contributing to this book, and for

      taking such impeccable care of my daughter.

      It’s quite possible she might not be here

      today if not for the two of you.

      I am forever in your debt.

      Then

      One

      The Sky is Falling

      I remember the sound of the telephone the day my doctor called with the results from my Alpha feto-protein (AFP) test. She said the results were off, and that she probably had just made a mistake on my due date. She explained that if your due date is calculated incorrectly, and you take an AFP test too early, then the results can come out wrong. She was certain that explained the funny results.

      Well, maybe.

      Or maybe I should take another AFP test in another week.

      Without getting too nervous, I agreed to the additional test. You know, just to be sure. After all, I wanted to rule out the possibility that my baby might have Down syndrome, so I could relax and enjoy the rest of my pregnancy.

      So on May 26, my birthday, I took the blood test. Again.

      The alpha feto- protein test is also known as the "triple

      screen" test. Blood is drawn from the expectant

      mother between 16-18 weeks of pregnancy. A laboratory

      then measures the levels of three substances:

      1. Alpha feto-protein: a protein produced by the liver of the fetus.

      2. Estriol: a pregnancy hormone.

      3. Human Chorionic Gonadotropin: another pregnancy hormone

      Elated levels of alpha-fetoprotein can indicate the presence of

      a neural tube defect such as spina bifida or anencephaly. (Failure

      of the brain to develop.) Low levels of alpha feto-protein and

      estriol, combined with elevated levels of HCG, can indicate

      Down syndrome. However, abnormal levels in this triple screen

      test are not by themselves diagnostic. They merely indicate

      a risk and that further tests, such as ultrasound or

      amniocentesis, should be considered.

      When I heard from my OBGYN, she was concerned and confused. The results hadn’t changed; the count was still off. She still felt everything was probably OK, as these tests were sometimes inconclusive. After all, the baby had a good, strong heartbeat, and her growth rate was in line with her gestational age. But she suggested that I see a specialist, called a perinatalogist. (At the time I didn’t even know what that was, let alone how to spell it.) There I could be given one of those new high-tech ultrasounds, where you get a clearer view of the baby. They could do special measurements, and give me an amniocentesis if they thought it was necessary. That way, we could rule out for sure any chromosomal disorders.

      Before we even had a chance to digest what all of this might mean, my husband Bill and I were sitting in the perinatalogists office. Only a few days had passed since the results from the first tests; those days had been spent wandering around in a fog. Now we were listening as the doctor explained the ultrasound procedure to us, which seemed simple enough. They would look, they would measure, they would calculate. Depending on the findings, they would decide whether or not to proceed with the amniocentesis. Because their equipment was so high-tech, the amnio could be done with the smallest of risks.

      The ultrasound was amazing! I could see my baby’s tiny face. The fingers, the feet….wow. In past ultrasounds I could barely make out the baby (I always thought the baby looked more like an alien than an actual child.) This time I could see the eyes, the nose, the tiny little arms and legs…and when the baby rolled over with legs apart, my husband and the doctors assured me we were expecting a girl.

      The technicians measured her femur lengths, which are usually shorter in babies with Down syndrome. Hers were normal. Her features looked normal. Her brain measurements were normal. All of her internal organs measured normal. Next they measured her neck, which is usually a big, tell-tale sign. Short, thick necks are commonplace in kids with Down syndrome. Hers was normal. The technicians were all starting to smile, and the tension in the room was easing with each bit of good news. Only one more hurdle: her heart. If this appeared normal too, the doctors felt the amnio wouldn’t even be necessary.

      But, in the next five minutes, everything changed.

      Her heart had a hole between three of its four chambers. One of her arteries was too small, and not enough blood was flowing where it was supposed to flow. Before long, Dr. Douglas King, MD, a specialist in Pediatric Cardiology, was brought into the room. He began circling the defects on the screen. He explained to us what was wrong with our baby’s heart. He used a pointer on the screen to show us the specific defects, and explained to us the inner workings of the heart. His first diagnosis was twofold; our baby had Tetralogy of Fallot and a complete Atrioventricular Canal Defect. (Complete medical explanations can be found by visiting the American Heart Association at www.heart.org.) I had no idea what this man was talking about; I didn’t want to understand. I couldn’t even make out the heart on the screen, let alone the vessels and chambers. I couldn’t listen anymore.

      So Bill listened, and Bill understood. I remember thinking OK, OK, she has a heart defect. That doesn’t mean she has Down syndrome. But the doctors felt that because of her AFP results and this, we should go ahead with the amnio. We agreed. Results from an amnio generally take about 2 weeks to get back, but the doctors were aware of a lab using a new process that could provide answers within 48 hours. They agreed to have my blood sent to this particular laboratory, so we wouldn’t have to spend the next two weeks worrying.

      The amnio itself was mostly uneventful and just a bit uncomfortable, but nothing I couldn’t handle. Bill held my hand throughout the procedure, and then, that was it. We were excused and could go home. Just like that. Get dressed and go home, and pretend that this entire appointment hadn’t taken place.

      Oh, wait. The doctor wanted to discuss our options with us.

      If the test did in fact come back positive, meaning that the baby would have Down syndrome, of course, we could choose to keep the baby (how nice to be given that option.) But we needed to be prepared for the many challenges that a child with Down syndrome would bring. He said life as we knew it would no longer exist, and we would need to come to grips with that. (I already had three children; life had never been the same after any of them!) He went on and on, and explained that in Oregon we had until the 24th week to legally terminate a pregnancy. He suggested we give this some serious thought.

      Did he really need to say that? Did he think we were just going to go home and not think about it??

      Next, Dr. King came back into the room.

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