Saving Little Hearts

Vivien Rose

After a mainly uneventful pregnancy, I was induced on the morning of Wednesday, December 15, 2004. Jim and my dear friend, Mandy were there. Labor went pretty quickly, even though I had some minor trouble with the epidural. The wonderful nurse, Cathy, made things very pleasant for me.

By the time Dr. DaVolio came in to deliver, we had been pushing for a couple of hours. We thought we were close, but even the vacuum wasn't working. Next thing I knew, things got very chaotic and the room filled with nurses.

While screaming for me to push, the nurses jumped up on the bed and pushed my stomach as Dr. DaVolio vacuumed the baby out. She had gotten stuck and had Shoulder Dystocia.

Vivien Rose entered the world at 4:20 PM weighing 8 lbs. 10.5 oz. and was 21.5 inches long. She did not cry and was taken to the warming tray immediately as the team of nurses and the NICU doctor tried to get her breathing. After what seemed like an eternity, they brought her over for me to hold. She scored so poorly on her APGAR that I don't even remember what it was (and it would become the least of my worries).

After they cleaned Vivien up, they took her to the nursery with Jim. The family watched through the window without a clue that they were witnessing the super nurse, Laura, tell Jim that Vivien's color was not coming in.

Meanwhile, I was alone in the delivery room making phone calls to relatives to share the wonderful news. I was completely unaware that my new baby was getting her blood drawn to determine why she was so blue.

Her blood was dark, which indicated that there was something wrong with either her lungs or her heart. Her lungs checked out okay, so they did an echocardiogram and called in Dr. Tracy Laird, cardiologist.

Oblivious to what was going on, I was startled when Dr. Kaplan (one of our family doctors) came to my room to ask if I had family to talk to or a chaplain. I was stunned because I had no idea what he was talking about. Then Jim came in the room with a couple of doctors and nurses. He had been obviously crying. A million thoughts raced through my mind as they proceeded to tell me that my baby girl was very sick and would need open heart surgery. We all waited in silence for Dr. Laird to come and tell us her diagnosis.

TAPVR was the diagnosis. Total Anomalous Pulmonary Venous Return. A rare congenital heart defect that hits 1 in every 15,000 live births. Dr. Laird explained that it was supracardiac, which was the best kind of TAPVR to have. She told us that Vivien would need surgery right away and that transport was on their way to take her to a neighboring children's hospital.

We were beside ourselves. I knew that I had to stay at our delivering hospital to recover from the violent birth and that Jim would have to go to the other hospital to be with Vivien.

The wonderful staff at the delivering hospital was nice enough to wheel my bed into the NICU so that I could touch my baby one last time before they took her. That was such a surreal time for us. I was so grateful to have had that minute in the delivery room to hold her because all I could do in the NICU was touch her hand. She was already hooked up to a bunch of monitors. I was heartbroken when they took my baby and my husband had to leave me.

Surgery was initially scheduled for 7 AM on 12/16, but there was concern that Vivien had Coarctation of the Aorta. Instead, she was sent for catheterization and scheduled for a 1:30 PM surgery.

We were blessed with a wonderful surgical team headed by Dr. Eric Mendeloff, who is truly our hero. He was concerned about the coarctation in addition to the TAPVR repair, because as he says, "double headers are for baseball", meaning that it would be much riskier to have to do two procedures in one operation. Praise God, our daughter did not have the coarctation.

Surgery began as planned. I sat by the phone in one hospital, while Jim paced the waiting room with the family in the other hospital. He had to watch our helpless little baby be wheeled into surgery so heavily sedated that she was paralyzed to keep her from moving during surgery. She was in surgery until about 6:30 PM or so that night.

She only had to be on the ECMO (heart/lung bypass) during surgery, and they were immediately able to close her chest. They warned us that due to swelling, they may not be able to. We were glad they were!

Once she was stabilized in the PICU, Jim was allowed to see her. The next morning, I was released from the hospital and was able to see our little princess.

I tried to prepare myself for what I was about to see, but that was next to impossible. She was so delicate and beautiful covered by tubes and wires and machines. The great staff explained what every machine did and how well Vivien was doing.

Everyday that went by, she was taken off of more machines until 6 days after her surgery when she was released to the pediatric floor. That was the first day we were able to hold her. It was actually the first time that Jim had ever been able to hold her.

We were on our own! It was quite a rude awakening for us to have everyone caring for her and all of the sudden it was just us (and the occasional check in from the nurses for meds and feedings). It was a very tiring and emotional time.

We were also trying to teach Vivien how to feed from a bottle (breast milk that I had been pumping religiously) so that she could get off of the feeding tube.

On Christmas Day, 10 days after her birth, she was released from the hospital. She was not on any medication, and the only equipment was her feeding pump.

The next week, she pulled the feeding tube out of her nose. Since she was gaining weight, the doctor told us that she didn't need it anymore! By 5 weeks old, she was completely breastfeeding!!!

Thanks to all of the prayers and thoughts, our little girl pulled through like a champ. We are forever grateful to those who prayed for us and those who helped us with meals and parking passes and good old moral support. It renewed our faith in people.

Just as we thought things were smooth sailing, another bombshell was dropped on us on January 31, 2005. The Coarctation of the Aorta possibility had become a reality. It had not been there 30 days earlier, but due to the watchful eye of Dr. Laird, we caught it early.

We were once again devastated. Dr. Laird sent us down to visit with Dr. Mendeloff and discuss the next necessary surgery.

He explained that it was a much simpler surgery with a lower mortality rate and quicker recovery time. It would be done through a long incision under the shoulder blade.

We scheduled the surgery for February 24th. We spent the next 3 weeks preparing by taking as many pictures and videos as possible. It seemed much harder this time around, because we knew Vivien so much better. I, as a mother, had bonded with her so much more.

Surgery was scheduled for first thing in the morning. We had to bathe her in betasept before she went to bed and before we left in the morning for the hospital. I was able to nurse her up until 3 AM, and I did.

Jim and I sat in a holding area with her until they were ready. The surgical nurse came and carried her back still in her pajamas. I will never get that image out of my mind, because I permanently put it there in case it was the last time I saw her. Praise God, once again, she came through like a champ.

She was out of surgery in 3 hours and recovering in no time. The next day, we were released to the pediatric floor. Dr. Mendeloff called her a show-off for doing so great.

We were released from the hospital on February 26th, just two days after surgery! She was suffering some pain, but seemed much more comfortable in mama's arms than attached to a bunch of monitors in a hospital crib.

At this point, we remain cautiously optimistic that this will be the end of Vivien's special needs. She has been a trooper and teaches us a lesson everyday about how blessed we are.