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Brooke's Story
I found out that I was pregnant with our first child in August, 1994. My husband, Tim, and I were absolutely ecstatic. My entire pregnancy went great. I had one ultrasound when I was 8 weeks gestation - the doctors said everything looked fine. I took my pre-natal vitamins every day, I walked each day, I ate all the right things. As the months passed, I had such a wonderful feeling and expectation of our upcoming event. I would never have had any reason to suspect anything would be different than wonderful! I couldn't wait to be a mother and meet my new "bundle of joy." My due date was April 19th, 1995. But on April 7th, 13 days early, I went into labor. There was nothing particularly noteworthy about my labor. After 12 hours we had a beautiful baby girl, Brooke. She was born with a full head of gorgeous dark hair, dark eyes, pink lips, pink fingers and pink toes. Her apgars were 9 and 10. Her birth weight was 7 pounds, 4 ounces. Tim and I couldn't have been happier with our new healthy, beautiful daughter. That afternoon in my room I attempted to feed her. She didn't really want to eat. The nurse detected a low blood sugar and they hooked her up to an intravenous line to give her some glucose. It seemed all was well other than Brooke's lack of appetite and lack of interest in feeding, and we were discharged April 11th. We made an appointment with a "lactation" nurse for the following week and took Brooke home for the first time. I loved being a mom and Tim was a great dad. But our frustration with Brooke's feeding continued. She just didn't feed well at any time. I became concerned that she would lose too much weight. It seemed like her hands and feet were always cold. I would wrap her up in more and more blankets, but it didn't seem to help much. I couldn't get over the feeling that something just wasn't right. On April 13th, we saw the "lactation" nurse. I explained how we felt worried that Brooke wasn't eating much. The nurse said she had gained 1 1/2 pounds and felt that I was too anxious. She assured me that Brooke was doing okay. I continued voicing my concerns that Brooke always seemed to be cold, finally the nurse checked her oxygen level and said that it was in fact a bit low. She called the doctor in to see us. The doctor looked at Brooke, listened to her heart and told us that she detected a heart murmer. During this evaluation, Brooke remained attached to the oxygen monitor. As we watched, her oxygen kept declining lower and lower. The doctor said that Brooke needed immediate attention at the local hospital. She took Brooke there herself. By the time Tim and I arrived, one block over from the doctor's office, Brooke was attached to a magnitude of I.V lines, monitors and other equipment. Everyone was grim. It was clear to us that they were quite concerned about her condition. Our doctor called the Riley Transport Team. They arrived, stabilized Brooke's condition and prepared to take Brooke back to Riley Hospital for Children, about 2 hours from our home. They explained that it was indeed something to do with her heart and could be serious, but more tests were needed to make a definitive diagnosis. Brooke left for the 70 mile trip to Indianapolis in the ambulance while Tim and I followed behind in our car with other family members. I cannot describe all my feelings during that drive. I kept thinking, "This is a big mistake. I have a healthy daughter. This just can not be happening." I feared all the worst things at that time. We finally arrived at Riley Hospital. After what seemed like an eternity of time, the doctors came out to talk to us. They said that Brooke had a condition called hypoplastic left heart syndrome. Basically, her body was functioning with only one ventricle to her heart. This syndrome, they explained, was not compatible with life. We had three choices for her outcome:
Each decision had so many pros and cons. We talked and talked and cried a lot. I felt that God had given me a sign that Brooke was ours. She belonged to us and we needed to be strong to help her through this. Option three was out. Through talking with the surgeons and other staff, we finally came to the decision that we would put her on the transplant list and then put it in God's hands. We gave her three weeks. If a heart wasn't offered to her within that time, we would consent to begin the first of the three open heart surgical procedures involved in the Norwood. While we waited, we had Brooke baptized. We watched as she was hooked up to all kinds of I.V.'s. She was continually infused with different medications throughout the day. Finally, she was placed on a ventilator. Though she looked pitiful, the staff at Riley kept us hopeful. They made us feel as comfortable as possible. We met other families, some going through the same thing as we were and others going through different experiences but much of the same pain. We watched the doctors and nurses adjust medications as needed, based on our daughter's condition. I learned what drugs like Dopamine, Dobutamine, Lasix and Prostaglandin were and why they were needed. I knew that it was those drugs that kept her alive. Riley's staff used their expertise and every possible mechanism to give her the best possible chance. That was obvious. And though we tried to stay hopeful, I couldn't help but feel an overwhelming sadness. I would hold Brooke and rock her. I would wish that I could take all the pain away. I would have gladly switched places with her. I rocked her every day and every day I thanked God to have her. We set a surgery date for May 8th. There had been no acceptable heart offers for a transplant and Brooke was certainly not getting any better. Because of the many numbers of hospitals that do newborn transplants, and the few numbers of donors, it was as expected - no heart for Brooke. But I knew that we were lucky to be in such a great facility and I felt that Brooke was in the best hands that she could be in. Dr. Brown and Dr. Turrentine are by far the finest surgeons. We had heard that their technical reputation was excellent and their compassion matched their technical expertise. Brooke was taken to surgery for a stage I Norwood on May 8th, 1995. Sitting in the surgical waiting area, we prayed, cried, talked. Then we prayed, cried and talked some more. The O.R. nurse liaison came around every hour to give us updates on the progress. The procedure lasted 7 hours. Brooke was taken to the Pediatric Intensive Care Unit. If I thought she had been attached to many lines before surgery, I was mistaken. That was nothing in comparison to post operatively. Her tiny, little body had multiple I.V.s, chest tubes, heart monitor lines, arterial monitoring lines, a foley catheter, the ventilator, etc. But every day as she progressed, more lines were taken out. The puffiness receded and she started to return to normal. Within four days, she was transferred out of the ICU. Every day was a milestone. She recovered fairly quickly; far faster than we would have ever imagined. Three weeks later, we got to take our sweet little girl home. We we elated but terrified at the same time. She seemed so fragile! She did pretty well at home, but we still had difficulty getting her to eat. She wasn't gaining weight for quite a long time after surgery, but we worked with her until we could finally say we believed she was doing better. All of our family members helped. We are fortunate to have a good extended family and Brooke was a special baby to everyone. My family initiated a local fund drive to help with expenses. Our newspaper ran an article about her. The community was very generous and giving. We appreciated it more than we could ever relay to all those involved. Brooke was seen about every 3 months in the Pediatric Cardiology Clinic. She was doing great and passing every test with flying colors. She had a cardiac catheterization at age 7 months and Dr. Darragh, our Cardiologist, determined that it was time to schedule the second part of the Norwood, Stage II or a Hemi-Fontan. The date was set for March 1996 when Brooke would then be 11 months old. Still remembering the first surgery, I was scared for Brooke, but following surgery she--once again--surprised us all. At three days post-op, she was sitting up in bed and eating like a champ. She came home 6 days later. Brooke's final surgery, Stage III or Completion Fontan, was in June 1997 when she was just a little over two years old. Another short stay - 6 days. Another success. Brooke has done excellent, primarily due to God's plan and the wonderful care at Riley Hospital - the surgeons, doctors, nurses, family members and other families. It hasn't been easy. Brooke has gotten sick many times. I believe that we worry 10 times more than normal parents over small things - but we've earned that. We have had some bad days, but so many many good ones too. I would do everything the same way all over again. I hope our story may help someone. The initial diagnostic and explanation is so incredibly overwhelming. The technical aspect mighty. But it can be done. There are so many people who are willing to help get you through the whole experience. Brooke is now 3 years old and she plays and giggles just like all the other children. I know I couldn't possibly remember everyone, but I would like to thank Dr. Brown, Dr. Turrentine, Dr. Darragh, Dr. Ensing, ALL the nursing staff, Becky Clark, Susan Gilchrist, Theresa Flaspohler, Maureen Shea and EVERYONE at Riley. And I would like to thank everyone who prayed with us and those who helped us with the costs. And my husband, Tim and our family, most especially our parents and siblings. And thanks to God as He looked down on us and gave us a gift of life, Brooke, our greatest joy. Oh, and thanks to Brooke herself for staying so strong and being just as cute as she can possibly be!! Rhonda and Tim [Keywords: Cardiovascular surgery, heart] |
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