Mended Little
Hearts
Mom of
miracle inspired by son overcoming life-threatening defects
By Suzy Yanez
When
our son Tanner was born after a complicated pregnancy, my husband Ej and
I thought our nightmare was over. We were wrong!
When Tanner entered the world December 18, 2000 weighing 5 pounds, 8 ounces, I remember noticing that his breathing was not right, but he quickly went back to normal after the nurse checked him. Tanner was a c-section baby - thank God. If he had been born naturally, I would have taken him home to die. He slept through his third night at the hospital, and I remember thinking he was such a good baby. But the following morning he didn't return from a routine assessment. The neonatologist came to my room, informing us that Tanner was breathing over 120 breaths per minute, and was in the NICU. I was in denial. I thought everyone was being overly careful. So when we were allowed to visit him in the NICU two hours later, I fell apart. Gone was the tiny warm bundle of excitement. I saw a tiny, fragile infant covered in tubes and wires, goggles over his eyes, monitors bleeping and alarms going off.
The NICU is a harsh place. Parents have no rights. Many times Ej and I felt like we were a nuisance. I insisted on pumping my milk for Tanner, and even that annoyed some nurses who didn't feel like defrosting the milk. On Christmas Eve 2000, at 10 p.m., the cardiologist told us Tanners diagnosis. He had two ventricular septal defects (VSDs), patent ductus arteriosus (PDA) and patent foramen ovale (PFO). He also had a clubfoot, which we couldn't have cared less about. The doctor explained that he would require open heart surgery by Dr. Leonard Bailey at Loma Linda University Children's Hospital.
I remember the anguish I felt, the tears I shed. I still wish I could go back in time and comfort myself, if that makes any sense. The first thing I thought was, "What did I do wrong?" I had no idea that at least 8 of every 1,000 infants born a year have a heart defect. The doctor told us we were lucky: his heart could be fixed and he didn't need a transplant. While the doctor went home to a good Christmas dinner, Ej and I, our souls rocked, had just been given news that would forever change us.
We
took Tanner home on New Year's Eve, and I remember when 2001 rolled in
I was crying, wondering if Tanner would be with us for 2002. We went through
months of pure hell. Digoxin. Lasix. Aldactone. Vomiting. Blue spells
and fluid retention. On January 31, Tanner smiled at me for the first
time. He was just over six weeks old, and it would be another three weeks
before I saw another smile.
We had a routine: We visited the pediatrician once a week and the cardiologist each Tuesday and Friday. At 2 ½ months old, Tanner sweated constantly, breathing over 90 breaths per minute (he wasn't less than 76 breaths per minute until his surgery), grunting. Tanner was hospitalized and his cardiologist started the paperwork to get him to Loma Linda. It took almost a month for our insurance company to authorize it.
We were amazed with the kindness of the Loma Linda staff. On April 4, 2001, Tanner had a cardiac cath done. Letting him go broke my heart. They were concerned with his pressures and wanted to do surgery within two weeks. We took Tanner home and he started to go downhill fast. He vomited every cc we got down his throat, yet he gained 7 ounces in 12 hours. On April 6, two days after his cath, I called Loma Linda at 6 a.m., begging for them to see Tanner. He was blue, panting 100 breaths per minute. I told the nurse I was afraid he would die over the weekend. When we brought Tanner to the heart clinic, they immediately called Dr. Bailey, who postponed a surgery and met with us. He scheduled Tanner's surgery for the following Monday, increased his medicines and told us to lock our doors (he didn't want him admitted for fear of infection).
The day of surgery seems surreal now. We waited for 6 1/2 hours before they took him. The hardest thing I have ever done was handing him to his surgeon. I would have ripped my own heart out to help him, but I could do nothing. My arms ached, my heart hurt, and I was too upset to cry. I broke out into hives from head to toe. To anyone going through this anguish, my heart goes out to you. I wouldn't wish the ordeal on any parent. Those moments are burned into me, and have changed me as a person.
After 5 ½ hours or surgery, we got the call: Tanner was alive! We raced to unit 5800 and Dr. Bailey took one look at our faces and said, "The baby is going to be fine. I am concerned about his parents, though." He then told us the VSD in Tanner's heart thought to be 6mm was actually 12mm by 10mm. Tanner also had a PDA and a PFO that needed to be closed. There was one more tiny VSD, but it was simply too hard to find, and should be considered an innocent murmur. When we first saw Tanner, I was fine, but Ej was almost sick. At the time I only saw that he was alive. Six weeks later those images would haunt me, and I would have anxiety attacks that still plague me.
We took Tanner home four days later, and within a week he was re-hospitalized for dehydration. He simply refused to eat anything. They ran every test, concluding it was psychological. Some said it was due to being intubated for 2 1/2 days. Some said it was because his chest hurt. Most shook their heads and walked away. A few days later we took him home on a gavage. The hardest part for me was knowing we had a baby with a sick heart. When they "fixed" his heart, we went home expecting to treat him as a normal baby. I am sure that many of you can understand that the fear, anguish and sleepless nights do not end with surgery. It has been almost a year, and I still count his breathing from time to time. I still believe that I have never witnessed anything more beautiful than to watch my son take a deep satisfying breath in his sleep.
Today, Tanner is healthy and happy - and walking. He is still hard to feed, and hasn't reached 20 pounds. But I force myself to relax. He is the light of our lives, a constant reminder that miracles still happen. Tanner will never remember the first months of his life, but we will never forget. I thank God everyday for the gift he gave me. Tanner is my inspiration. He reminds me that I am a good mother for surviving the ordeal, and he is a strong soul for hanging on as long as he did before surgery. I am proud to say that I am a mother of a CHD baby.
