My pregnancy was relatively uneventful. When we left our home late the night before my induction was to begin, I remember thinking that we’d be home in a couple of days and our lives would be forever changed. No more sleeping all night, no more doing whatever we wanted to do whenever we wanted, lots of changes were going to happen. Little did we know when we pulled out of our garage that night that the healthy baby on the sonogram had a serious problem that no one could possibly have known about.
The induction went quickly and smoothly until the baby got stuck and delivery got rough at that point. Our sweet girl had a pretty rough start with a shoulder Dystocia, the umbilical cord around her neck, and near death in the birth canal. She was not breathing as she was pulled out and had to be resuscitated. The NICU team was there waiting and ready to get to work on her. After she began breathing, they brought her to me to hold. I held her for such a short time and then they took her off with Jim to the nursery. Jim never got to hold her.
I began to call family and announce the exciting news that Vivien Rose had entered the world. After the staff attending to me left the room, I was alone resting for what seemed like forever when our family doctor came in the room. I was confused to see him, but then I knew we had chosen our family practice to act as pediatricians. The first thing he said to me was, “Do you have any family here or can I call a chaplain?” I was stunned and confused. Why would he say that? I had no clue what he was talking about. Before I could process it, Jim walked in with tears streaming down his face. I was panicking. What was going on? Where was my baby? Soon a trail of doctors and nurses entered the room to explain to me that our lives were going to change a lot more than we ever imagined. I was having a tough time processing what they were saying to me. Surely, this wasn’t real. My baby had been healthy in all of those sonograms.
Apparently, as the NICU nurse was taking Vivien to the nursery with Jim she mentioned that she was not comfortable with how blue Vivien was. The NICU doctor told her that Vivien was just stunned from the rough entry, but the nurse insisted that they draw some blood. Vivien’s blood was dark, which meant that there wasn’t enough oxygen in her blood. So something was either wrong with her lungs or heart. Her lungs checked out okay, so they called in the cardiologist, Dr. Tracey Laird to do an echocardiogram. This was all going on while I was alone in my room and I had no clue it was happening. Vivien was immediately moved to the NICU and was being prepared to be transported to Medical City.
After they dropped the bombshell on me, we waited for Dr. Laird to come in and explain what was going on. She came in and thoroughly explained that Vivien had Total Anomalous Pulmonary Venous Return (TAPVR). Simply put, her lung (pulmonary) veins were not connected to her left atrium, but rather they connected to a confluence. She was not getting oxygen between her heart and lungs. The confluence needed to be widened for her to survive. In addition, she had an Atrial Septal Defect, or hole in her heart that had kept her alive, but would need to be closed in surgery. Congenital Heart Defects in general exist in 1 in 100 live births. Vivien’s defect was 1 in 15,000. We had no way of knowing because TAPVR isn’t visible in a normal sonogram. She would not have shown signs of distress in the womb because she was “breathing” through the umbilical cord. We.were.stunned. All of these medical terms were being thrown at us and things that we had never heard of in our lives were now our reality. We were at the mercy of the doctors to know the best course of action for our brand new child. We were completely unprepared.
Dr. Laird said that transport was on their way to get Vivien. They expected for her to go into surgery the next morning at around 7 AM. Because I still had an epidural due to the nature of my delivery situation and my refusal to take narcotics, I was bedridden. They kindly wheeled my bed into the NICU and let me see my baby. She was covered in wires and sedated and I was just devastated. Jim and his family (my family was still in Florida) were preparing to go to the other hospital. I was so scared and so sad. My God, I prayed so hard that it would not be the last time I would see her alive as I watched the Care Flight ambulance crew prepare her for transport (via ambulance). I was wheeled off alone to go recover while my baby and my husband were going away. That is one of the most painful things I have ever experienced in my life.
My sister-in-law drove over from Ft. Worth to spend the night with me. The doctor wanted to give me a sedative, but she told me that I would have to pump and dump. I refused. If I could do nothing else for my child, at least I could store up a milk supply for her. It was a long night, and in the morning I got a call that the surgery had been rescheduled for 1 PM. I thought it was because she got bumped for a more urgent case, but I was wrong.
They were concerned about the slow movement of blood through her aorta so they decided to send her for a heart catheterization before surgery to make sure she didn’t have a coarctation in her aorta. Thank God, she did not have it and surgery was to begin as scheduled. If she had a coarctation, it would’ve been a double procedure which is extremely dangerous. I thought I had the hard part sitting by the phone in a different hospital, but Jim definitely had the hardest part. He had to watch our baby girl, not even 24 hours old, lifeless from the paralytics wheeled off to surgery. I can’t imagine that image.
The surgical team headed by Dr. Eric Mendeloff did a phenomenal job. The doctor stayed in contact with me via phone and begged me to not leave the hospital too soon for the sake of my daughter. He told me that she would need me to be as recovered as possible so that I could properly care for her. He warned us that they may not be able to close her chest after the surgery because of swelling, and that it wasn’t a pleasant thing to see but could be necessary. He gave us the realistic survival rate, which was surprisingly good. He said that although her defect is rare, it is one that can be fixed more permanently than many other defects. He was optimistic.
That was a very long day from my hospital room. The phone was ringing off the hook from people checking in, but each time it rang I thought I was going to jump out of my skin. I was afraid that someone would be calling me with bad news. I was so nauseous and they were buffing the floors outside of my room which was an obnoxiously loud noise.
The surgery lasted several hours, and was extremely successful. They were able to close Vivien’s chest. There was a parade of friends and family there to see her that night after her surgery. Apparently, she looked awful and I remember Jim saying that he thought his mom was going to pass out when she saw her. They told me that I would have to prepare myself for what I was going to see.
I was released the next morning and we rushed to Medical City so that I could see Vivien. I could not believe the tangle of wires and machines all around this teeny little baby. It was overwhelming. She had a huge incision in the middle of her chest and 3 large drainage tubes protruding from her chest. I just wanted to pick her up and tell her that her mama was there. I spent the next several days bedside in the PICU pumping away storing up that milk for her. They didn’t have a place for the families to stay at that time (now you can room-in at the new PICU). We could sleep on a couch in a teeny waiting room shared with other families, or we could go home. The PICU staff always encouraged parents to go home.
By day 7, she was released to the pediatric floor. We were finally able to hold her. For Jim, it was the very first time for him to hold his baby girl. It was really rough. She was withdrawing from the Morphine and I was really overwhelmed as a new mom. We were so tired and intimidated by the feeding pump that would be coming home with us. Somehow we got through it, and on Christmas Day, Vivien was released. She was released with no medications to take, and only an NG tube (feeding pump). We fed her my milk by bottle first and then what she couldn’t drink would go down the feeding pump. I’d be up all night between pumping, feeding, washing pump parts and starting over again. After several days of the feeding pump, she pulled the tube out of her nose. The cardiologist said it was no big deal because she was really gaining weight fast. Yay for mama’s milk!!! By about 5 weeks, she was completely breastfeeding.
Things were going great for a few weeks, but on our 6 week post-op check up, we were delivered another blow. She did, in fact, have a Coarctation of the Aorta. This is a narrowing in the aorta caused by a lack of blood flow through it. The TAPVR has cause the blood flow to slow down, and thus the aorta began to close off. Dr. Laird said she would need surgery again. Jim and I sat in front of her and cried. We had been through so much and didn’t think we had the strength for anything else.
We went immediately down to Dr. Mendeloff’s office and he laid out the game plan. He said this surgery was a piece of cake compared to her TAPVR repair. He was very optimistic, and we scheduled the surgery for 3 weeks later. After that, we took our baby home and took as many pictures and videos as humanly possible over the next 3 weeks.
My mom came to help us out during the time of the surgery and I was so grateful to have her there to lean on. Surgery prep was emotionally draining and difficult. One of the most vivid images I have in my mind to this date was when the surgical nurse came to get Vivien from us. We were in a small waiting area with just children and their parents. Vivien was the only infant in the room and everyone was watching us. She was the first to get taken back. I will never, ever, ever forget watching that nurse carry her off in her two-toned pink fleece sleeper. Ever. That was next to impossible to watch. I immediately fell apart. Luckily, we had a lot of support in the waiting room to keep me occupied throughout the surgery.
It was a much shorter surgery, but I really wanted them to get her in the PICU room because I had to pump her milk in the public restroom. In the middle of flu season. Gross! The surgery was again a great success thanks to Dr. Mendeloff and his staff. Vivien spent one night in the PICU and was released to the pediatric floor the next day. We had prepared for a long stay this time in the pediatric floor, but luckily only spent one night there.
When Dr. Mendeloff came in to release us, he called Vivien a show off because she recovered so well. And she continues to do well to this day, over 3 years later. The first three flu seasons, Vivien had to get monthly Synagis injections to ward off RSV. She is also recommended to get the flu shot every year. She has to get antibiotics for any invasive procedure including dental work and ear piercing. She sees Dr. Laird annually for check-ups. And although her pediatricians fuss over every illness with her, she is mainly a normal little girl. You certainly would not know what she has been through by meeting her. The only way we are even positive that she’s the same girl as that sick little baby is the scars on her chest and under her shoulder blade. She’s not completely out of the woods, but we are optimistic that she will need no further surgical intervention.
So as I look back to leaving our house the night before and thinking about how much our lives would change, man was I ever naïve. Not only did our lives change, but we changed. For the better. Because of a strong-willed little fighter named Vivien Rose. What a true blessing and lesson in humility.
