So many times over the past almost three years, I have sat down to type "our story." The beginning of our journey with Spina Bifida. But each time, my fingers stood still. My mind racing with so many words to describe that moment. The moment that my life changed. Forever. This blog is not only to keep friends and family updated on our lives, but it's meant to give hope to families facing similar situations. Many who follow this blog are part of the SB community. Many find this at the beginning of their SB journey, during pregnancy. And for those moms preparing for this amazing, yet heartwrenching experience, I wanted to share our beginning.
For many, receiving the news that your baby will be born with spina bifida comes during the pregnancy. Most of my friends had months to prepare for the one thing that would forever change their lives. But me...well I got hit full force. Head on. I arrived on the day of the big test unprepared. I didn't get the chance to "study up" on spina bifida.
My due date is as clear in my mind as if it were just yesterday. The nursery was ready. The bags were packed. Car seat properly installed. We went to the mall and walked. And walked. And walked. I ate mangos as suggested by a midwife. 5pm my water broke. As we drove to the hospital I remember looking at Jonathan asking if he was ready. Not that there was a choice in the matter. This baby was coming whether we were ready or not.
Two hours after arriving at the hospital, I was in pain. Like cursing like a sailor type pain. It was happening much faster than I anticipated. About six hours and epidural drama later, I was comfortable. The room was quiet. Jonathan and I just sat and waited. An hour later, they told me it was time to push. Finally time to meet this little being inside of me. The one that would forever make me a mom. I only pushed for about 45 minutes, but that was the longest 45 minutes of my life. With each push, Brenden's heart rate would sky rocket. I saw the look of panic on the doctor's face. And right before my final push, I remember seeing her turn to one of the nurses and whisper, "Be ready to rush the baby out."
And then, he was here. Limp. Lifeless. I remember my cousin, Sara, who was a labor and delivery nurse, hold my baby in her hands, run to the door, and yell down the hall, "I NEED HELP!" Within seconds, nurses went flying by my room. And there I was. Asking Jonathan what was happening. Scared. Left in the dark. No one would tell me what was going on. Finally after twenty or so minutes, the pediatrician came in to tell us that he wasn't breathing because his cord was wrapped around his neck, but they were able to get him stabilized. He was ok, but would be taken to a hospital about 25 minutes away to be in the NICU, just for observation.
I remember the moment I first saw him. This helpless little guy laying in a bassinett hooked up to tubes and monitors. But I loved him. More than he will ever know. More than I ever could have imagined. Within a few hours the transport team arrived to take him. About 2am my room was filled with our family, hand in hand, praying that God be with Brenden as he left my side. Weeks before delivery, I told Jonathan that if anything were to happen, I wanted him to be with the baby, so that's what he did. As the transport nurse wheeled Brenden out of my room, she stopped and asked what I was worried about. And then assured me that he was going to be just fine. While her reassurance put my mind slightly at ease, I was still terrified. Tears streamed down my face. My body shook. And I remember thinking saying goodbye to him as they left would be the most difficult moment I would ever face. Little did I know....
My parents tucked me in and said goodbye. Sara, my cousin, crawled into the extra bed in my room. Even after a 16 hour shift, she stayed with me. As hard as I tried to sleep, I couldn't. I laid in my bed longing to hold my son. Yearning to hear his first cry. But I couldn't. He was 20 miles away. I have never felt so empty as I did that night. I remember rubbing my belly where he had thrived just hours before. I felt alone. And just as my eyes started drifting shut, the phone rang.
I was greeted by Dr. Lee, the neonatologist with Brenden. "Mrs. Dugan, I'm sorry to tell you this, but we've just discovered your son was born with Spina Bifida." Ok, I've heard of that. But I couldn't quite reach the part in my brain that knew just what it was. "What does that mean long term?" After a brief pause, he said, "Paralysis." That's all he said. The line was quiet. I didn't think I had any tears left, but they came. I don't know what it feels like to have your heart ripped from your chest, but I'm pretty sure I came close to that feeling that night. He went on to tell me he would be transported again in the morning, to a hospital a few hours away that was equipped to handle Brenden's needs. I later learned that Jonathan asked Dr. Lee to call me that night. He couldn't bear the thought of telling me himself.
I gathered myself as much as possible and called my parents to come back to the hospital. My dad has always been my source of comfort, and that night was no exception. I will never forget him sitting on my hospital bed holding me in his arms. He whispered in my ear, "You will be such a good mom." I responded, "With all this, I'm not so sure." He then said, "You'll do just fine." And he assured me that we were in this as a family. This thing, this diagnosis, didn't change the love anyone would have for this amazing gift from Heaven. Later that morning, the NICU transport team from UVA called to get my consent to transport and treat Brenden. While on the phone, I heard him cry. And again, tears were shed. Just a few hours before, he had ripped the breathing tube out and had been breathing room air. Such a fighter. I remember thinking to myself that was his way of letting me know he would be ok.
Only 8 hours after delivery I left the hospital, came home and threw some of the most random things in a suitcase, and made the 2.5 hour drive to UVA. By this point, I had been awake 26 hours, delivered a baby and all!! I was emotionally drained. Physically exhausted. Upon our arrival, we learned that Brenden would have surgery to close the lesion on his back that same afternoon. They would also place a shunt for the hydrocephalus. The neurosurgeon and his team allowed us to spend just a few minutes with Brenden before they took him to the OR. And again, our family surrounded this beautiful baby to pray. To surrender him into God's hands once again. As they wheeled his bassinett away, I remember saying to myself, "No, now THIS is the hardest thing I have ever done."
This day was the most difficult day of my life but I firmly believe that everything happened in perfect sequence. We were placed at UVA for a reason. With a wonderful neurosurgeon who I hold the utmost respect for. Dr. Jane has been amazing to us. He has held Brenden's life in his hands a few times now and I trust him completely. When he greeted us in the waiting room that day, he had nothing but good news. And he hugged me before he walked away. I can honestly say that I have never hugged another one of Brenden's doctors, nor would I feel comfortable doing so. But that hug meant oh so much. I needed it. After 5 days in the NICU, 22 days in a step down unit for some feeding issues, we got to go home. And oh what a feeling that was!
The NICU was anything but easy. But now, it is only a distant memory. One that will be with me always. As a reminder of just how far Brenden has come. We have come. I grew up that day, March 2nd, 2008. I became a mom. A physical therapist. An occupational therapist. A nurse. This journey is anything but easy. It's stinkin' hard. But it's oh so rewarding. When I see Brenden stand up at the couch, or crawl up in his bed. When I watch him walk into a restaurant to get to our table. I thank God for giving me this child. For giving me strength. For allowing me to be the one. You see, 3 years ago, if you had asked me if I could handle a child with special needs, I would have said, "Heck no!" But here am. I'm doing it. I'm not perfect, nor will I ever be. But I'm doing it. I make him work hard. I have the same expectations for Brenden as i have for Madelynn. I know he will go far in life. I know that his story will touch many lives in many ways. It already has. Brenden was meant for me. To teach me. To give me courage. To make me realize just how precious life is. To keep me in check.
To families facing the unknown, know that it is ok to grieve. We all want our baby to be "perfect." But what is that really? Receiving the news of spina bifida or anything else for that matter, is hard. It's really hard. But you will eventually be able to move beyond that gut wrenching feeling and realize that your child will be special. Your child will have so much to offer you and everyone else. Cry. Cry some more. And then cry some more. And then, when your well is dry, rally. Be a rockstar for your baby. You will be ok.