Reagan Driggers

Reagans Story

Born July 7th, 2004

My name is Michelle Driggers. This is the story of my sweet baby daughter, Reagan. My husband, Wayne, and I became pregnant via in-vitro fertilization in November, 2003. We were so ecstatic to get pregnant during our first attempt! They were miracle babies from the start thanks to Dr. Kevin Winslow at the Florida Institute of Reproductive Medicine. Out of 17 embryos, only three survived fertilization. All three were conceived on November 22 nd , and implanted in me on November 25 th . On December 6 th , it was confirmed we were indeed pregnant! Then, on December 23 rd , we had our first ultrasound. Two babies were thriving. While saddened by the loss of the third, we were so happy. TWINS!

We began seeing a high-risk, perinatologist group for our OB care due to my health condition (ulcerative colitis) and because I was carrying twins. We received high-resolution ultrasounds every four weeks. On February 17, 2004 we found out the awesome news – TWO GIRLS! It did not take us long after to decide our babies’ names: Reagan Laine Driggers and Riley Kay Driggers.

Our fairy tale life came crashing down on us on May 11 th . During my 26 th week of pregnancy, at a regularly scheduled OB visit, Reagan was diagnosed with Vein of Galen Malformation. I will never forget my doctor, Gerardo DelValle, held my hand while he told me the news. I remember crying and realizing what it all meant. You see, I am a registered nurse who worked my entire career in the Pediatric Intensive Care Unit of Shands Jacksonville – a Level I trauma center. I was all too familiar with doctors, their demeanor, terminology and the seriousness of the situation. I knew TOO much to protect myself. I knew how hard the road ahead would be. That day, I received the first of two rounds of steroid injections to mature the babies’ lungs. We did not know at the time what the risk would be to Riley or how early the twins might come.

The next week we met with the only pediatric neurosurgeon in Jacksonville and had an MRI of Reagan’s brain done in-utero. I remember the exact moment that I realized we were in the wrong hands. It happened when we were sitting in the neurosurgeon’s office waiting room and he told us our daughter had no chance to live. In fact, he informed us he thought she might die before even being born, jeopardizing the safety of Riley. After falling completely apart in his waiting room, Wayne and I went home and mourned for our baby girl. The next day, the nurse in me kicked in and I started looking for another neurosurgeon. We had already found this WONDERFUL website and began putting it to good use.

We found our neurosurgeon, Dr. David Pincus within days. We traveled to Gainesville (approximately 1 hour away) soon after to meet him. After being shown to an exam room in his very busy clinic, we awaited our meeting anxiously. I remember seeing this tall, handsome man pass by our room in a hurry and glance in at us. No more than two seconds later, he reappeared, and said to me, “That is the face only an anxious mother makes.” As silly as this might sound, I knew I was “home”. I had found the right man for the job. He had extensive experience and a bedside manner I had never seen from a surgeon, not to mention a neurosurgeon, in all my years of nursing. He sent our MRI films down the hall to the Shands Hospital / University of Florida neuroradiologist to be read immediately. Dr. Pincus then told me the thing we needed to hear most, “She has a chance and I will do everything I can.” I honestly felt like kissing the man!

We then transferred all of our care to Gainesville in preparation to deliver there. I was very saddened to leave Dr. DelValle at Regional Obstetrics; but he put us into the very capable hands of Dr. Doug Richards at Shands Hospital/University of Florida . When someone described him to us as an “ultrasound wizard” they were not kidding.

The next six weeks went by for us both at incredible speed yet also at a snail’s pace. We went once a week for ultrasounds and OB checks with Dr. Richards. Riley continued to thrive and do well. However, Reagan’s heart went into failure around week 29. We were so disheartened to see the effect the malformation was having on Reagan’s heart and circulatory system. We continued to pray fervently for the health of both our girls.

On June 28 th , Dr. Richards and Dr. Pincus conferred. It was decided our girls would be born the next week. Reagan’s heart had continued to fail to such a point where intervention was necessary. Fortunately, Riley was then at less risk for complications.

My beautiful girls were born at 34 weeks gestation on Wednesday, July 7, 2004 via cesarean section. We first saw Reagan’s sweet face at 10:52 am weighing 5lb, 5oz and measuring 18in long. Then we met our precious Riley at 10:53 am weighing 4lb, 12oz and measuring 18in long. I finally was able to see these two tiny miracles I had waited so long for! I can not begin to tell you how proud I am to be their Mommy. The staff let Wayne hold Riley while the neonatologist held Reagan up close to us for a family portrait. I am so thankful for that moment.

Much of the day’s following events are a blur for me. You see, upon entering the OR, I had reached my breaking point. All of the stress over the past eight weeks became too much. Once I laid eyes upon my babies, I became a hysterical mess. I remember craning my neck backwards to watch Reagan in her isolette. I then saw one of the ten or so physicians in the room. He was holding an intubation blade (used to insert a breathing tube). What I wanted to ask them was, “What is going on with Reagan? Is she okay?”. However, it came out in a shriek as “WHAT ARE THEY DOING TO MY BABY?!”. Repetitively. The medical staff asked Wayne to accompany Riley to the nursery. So, the very sweet anesthesiologist rubbed my shoulder, told me I was a good mommy and gave me a whopping dose of Fentanyl to calm me down. Oh, I calmed down alright. It was nighty-night, Michelle!

I have fleeting memories of waking periodically in the recovery room. I was intensely worried about Reagan and what was going on. However, no one seemed to have any answers for me. I awoke once to see Wayne at my side introducing me to Riley. She was very tiny with light colored hair, long graceful fingers and a kitten’s cry. I held and cuddled her until the drugs mercifully pulled me back under the blanket of peaceful sleep. Before I knew it, five hours had passed and I was in “my room” with Riley and Wayne. We were surrounded by family and friends. More than twenty of them had come and prayed while our daughters’ were born. Riley was doing great, but not eating well. I asked to see Reagan but was told they had already taken her for a CT scan of her brain.

A little while later, Dr. Pincus and the neonatologist, Dr. Saxonhouse came to the room. Dr. Pincus asked to speak to Wayne and me alone. And as I held one daughter, I was told devastating news about the other daughter. Reagan’s brain had suffered irrevocably. She probably would not survive surgery. If she did, she would have no quality of life. Our conversation with Dr. Pincus was long and thorough. We asked a lot of “what if” questions. He tenderly told us that there were no “what ifs” with Reagan. He had read the CT results and then conferred with neurosurgery colleagues to make sure. They all agreed about her prognosis. We asked Dr. Pincus to remove Reagan from Thursday’s OR schedule. We had decisions to make. Decisions we had prayed would not have to be faced. They left our room and at our request, went and spoke to our family in the waiting room. We could not have repeated the news if we wanted to. I remember crying and holding Riley. The next thing I remember is meeting my miracle-child face to face.

I was in the NICU at Reagan’s side. She was breathing with the help of a ventilator. She was so beautiful! She had black hair, creamy skin and an angel’s face. She looked like me. I sang “Happy Birthday” to her. I could not stop touching and stroking her. She was peaceful and comfortable. I saw her several times that evening and into the early hours of the morning. Meanwhile, Riley was evaluated for her poor feeding. Early Thursday morning Riley was transferred to the NICU. Her temperature had gotten too low and she now required closer observation.

We spent all day Thursday in the NICU with Reagan and Riley. I spent most of my time at Reagan’s side. I felt bad about this for Riley, but some kind of internal mother’s instinct had taken over. That morning, I finally got to hold Reagan for the first time! I rocked my baby and tears just poured. By midday I had made a promise to Reagan. I promised her I would no longer boo-hoo all over her every time I got in her presence. I promised to only convey lovingly sweet and happy feelings through me to her. So I talked to her, sang to her and told her stories. I gave her massages and decorated her and her sister’s “cribs” with their blankets, stuffed animals and pictures of their mommy, daddy and twin sister. Our friends and family respected my promise to Reagan and did their best to be happy in her presence, too. We played them soft bible songs and classical music with a crib CD player. We tried to give Reagan every luxury of home and every sweet nursery comfort a baby can have.

Finally, Thursday night came and Wayne and I knew we had to decide something. Dr. Saxonhouse came to our room at our request (at 2 am!) to talk. We learned that many babies with cardiac conditions could live for months at home with hospice care. He told us that Reagan did not have a medical need to be intubated. She could come off the ventilator in the morning. After our long conversation, Wayne and I went and saw our girls. We spent a lot of time with Reagan, just enjoying her. When we returned to our room, we sat down and talked. We loved Reagan. We wanted the best for her. But mostly, we wanted her to live without pain and discomfort. We also did not want to risk her passing away alone, among strangers during a surgical procedure that ultimately would not help her. The decision had been made. We would spend all of the time God allowed us with our sweet baby and savor every minute of it. We hoped to get her home and to live out her days surrounded by those who loved her.

The next morning, we told Dr. Pincus of our decision. He wished us well and reassured us we were doing right by Reagan. Plans were made to transfer the twins back to Jacksonville . They could continue their NICU stay at Wolfson Children’s Hospital. Friday was again spent at Reagan’s bedside. Since she would not be going to surgery, she did not need the ventilator. Her breathing tube was removed by noon. I did cry all over her then. But I told her they were happy tears – I had no idea how much more beautiful she would be without the tube and tape. That afternoon, the NICU staff provided us with an incredible act of love. They shifted bed assignments around so that Reagan and Riley could be side-by-side. I could literally stretch my arms wide and touch them both at the same time. Then, Reagan gave me yet another precious gift. She opened her eyes and looked at her Mommy. It would be the only time we saw each other eye-to-eye. The moment was fleeting, but is now ingrained upon my heart forever. My heart soared! July 9 th was one of the sweetest days of my life.

Saturday morning I arrived at Reagan’s bedside. She was declining and I knew it. Her appearance had changed overnight. Her heart had taken a rapid, unexpected turn for the worse. The weekend neonatologist, Dr. Sola lovingly guided us through the day and night. We were at her bedside non-stop. The staff allowed us to stay – visiting hours no longer applied to our family. We loved on her and prayed. We could not pull ourselves away. By Saturday night, we had the breathing tube reinserted for Reagan’s comfort. We feared Reagan would not be well enough for the helicopter flight home in the morning. In the wee hours of Sunday morning, her two aunts, Grandmother, Grandma and I stamped her hand and foot prints into her baby book. We tried to fit a lifetime of experiences into the short time we had.

Sunday morning, Reagan gave us her final gift. Her condition had improved enough for the flight. We were going home. I called my close friend, Shannon who works as a nurse in the Wolfson NICU. She would meet us at the hospital and work to ensure Reagan would be comfortable and that our wishes for her care would be met. Wayne and I kissed the girls goodbye. His dad drove us to Jacksonville – straight to the hospital. My parents, his mom and the rest of our family were already there waiting.

Reagan and Riley spent the flight together sharing the same isolette. They arrived and we met them by the NICU doors. They let us greet the girls for a moment before taking them in to get settled. It seemed a lifetime before they let Wayne and me in to see Reagan. She had a private room – with a door, not a curtain. Inside was a couch, some chairs and lamps and a sweet baby bassinette. Reagan’s crib was decorated with her pictures and some pretty name tags and “Happy Birthday” cupcake cut-outs. Shannon had really come through for us.

I am unaware of the time frame from this moment on. I only know that a little while later Reagan suffered a set-back on the ventilator. Her tiny body could not fight any longer. She was leaving us and it was up to her Mommy and Daddy to comfort her through her heavenly journey. The lights were dimmed. They gave me a rocking chair and I cradled Reagan in my arms. Our entire family was ushered into Reagan’s room to say goodbye. They walked by one-by-one and kissed my little girl on the head. They whispered their sweet goodbyes to this precious child who had touched our lives forever. Then, Riley was with us. Shannon had brought our two girls back together. They placed Riley in my arms right next to her sister. Riley reached down and took hold of Reagan’s hand. I was absolutely undone. This would be the one and only time I would hold my twin daughters together. Shannon took a few family pictures for us. Riley was then returned to her isolette. The time had come to say goodbye.

Reagan was given some medicine to ensure her comfort. Then, her breathing tube was taken out. She was again handed to me. But this time, she was just a baby. No tubes, no wires, no monitors, and no beeping machines. I rocked my baby – I do not know for how long. Then Wayne took her into his arms. I crawled up in his lap and we just loved on her. Shannon took one more picture – just the three of us. And then we were alone, Reagan with her Mommy and Daddy. We whispered sweet things to her and told her how much we loved her. When the final moments came, I asked Wayne if I could have her back. As I cradled her in my arms for the last time, I told her she was a good girl, it was okay for her to go on and that she did not have to fight any more. A short time later, Reagan slipped the bonds of this earth and went home to be with her Father in heaven.

Reagan is perfect now. We miss her every day. Our miracle baby. Sometimes, I get so sad watching Riley grow and change while thinking of all the moments we are missing with Reagan. But deep in my heart, I know those moments will come for us. I know we will see her again. I know I will get to be her Mommy again when I join her in heaven. I know this because my faith still stands in a loving God that created her for me. The same God that gave up his own Son for me.

Wayne, Riley and I are so blessed. We are forever grateful to our doctors and nurses who gave exceptional care and compassion to our entire family. We cherish the four precious days we got to spend with Reagan. We treasure each of those moments and hold them close to our hearts. We are so thankful for Riley and for the boundless love and endless support of our family and friends. We could not be surviving this without all of you.

Reagan Laine Driggers – Forever Young

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About vogadmin

Vein of Galen UK is a website dedicated to families and sufferers of Vein of Galen malformation all over the world. We provide information and support for families affected by this condition.
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