When I had Tanner, my husband and I thought that the nightmare was over, were we wrong! After a very complicated pregnancy Tanner was born a small 5 lb. 8 oz. little boy. I remember noticing that his breathing was not right, but as soon as a nurse checked him, he was back to normal. Tanner was a c-section baby thank God, because if he had been born natural, I would have taken him home to die. On the 3rd night in the hospital he slept through the night and I remember thinking he was such a good baby. The following morning he was taken for a routine assessment, and he never returned. The neonatologist came to my room and explained that Tanner was breathing over 120 breaths per minute, and was in the NICU. I guess I was in denial, I just thought everyone was being overly careful, and when we were allowed to visit him in the NICU 2 hours later I fell apart. Gone was the tiny warm bundle and all of the excitement. I saw a tiny fragile infant covered in tubes and wires, goggles over his eyes, monitors were bleeping and alarms were going off.

The NICU is a harsh place, parents have no rights, and many times Ej and I were made to feel like we were a nuisance. I insisted on pumping my milk for Tanner to be gavaged, and even that annoyed some nurses who didn't feel like defrosting the milk. On Christmas Eve 2000, at 10:00 pm the cardiologist approached us and told us Tanners diagnosis. He had a large muscular VSD, PDA, and PFO. He also had a clubfoot which we couldn't have cared less about. The doctor explained that he would require open heart surgery, and Dr. Leonard Bailey at Loma Linda University Children's Hospital had already been informed. 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 heart defects occur in 1 out of every 100 babies. the last thing the doctor told us as he left was that we were lucky, his heart could be fixed, he didn't need a transplant. And while the doctor went home to a good Christmas dinner, Ej and I had just been given news that would forever change us, and rocked our souls.

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, fluid retention. On January 31st, Tanner smiled at me for the first time. He was just over 6 weeks old, and it would be another 3 weeks before I saw another smile. We had a routine. Once a week the pediatrician, Tuesday and Friday the cardiologist. Finally at 2-1/2 months old, Tanner was sweating constantly, breathing over 90 breaths per minute (Tanner never breathed less than 76 breaths per minute until his surgery) and was grunting when he breathed. Tanner was hospitalized and Dr. Marilou, his cardiologist, started the paperwork to get him to Loma Linda. It took almost a month before our insurance would authorize it.

You would never believe that Tanner  once looked this way.

When we went to Loma Linda we were amazed with their kindness. On Wednesday April 4th 2001, Tanner had a cardiac cath done. Letting him go broke my heart. The results were that he had a 6 mm VSD, and a PDA. However they were concerned with his pressures and wanted to do surgery within 2 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 oz. in 12 hours. On Friday April 6th, 2 days after his cath I called Loma Linda at 6am begging for them to see Tanner. He was blue, breathing over 100 breaths per minute, and I flat told the nurse I was afraid he would die over the weekend. We got Tanner to the Heart Clinic and they immediately called Dr. Bailey who postponed a surgery and met with us. He scheduled Tanners surgery for the following Monday, upped his meds, 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, and I can honestly say that the hardest thing I have ever done was handing him to his surgeon. I would have ripped my own heart out to help him, and there was nothing I could do. My arms ached, my heart literally hurt, and I was too upset to even cry. However I did break out in hives from head to toe. To this day I say that the worst day of my life saved my sons life. To anyone going through this anguish, my heart goes out to you, I know how it feels and I wouldn't wish that on any parent. Those moments are burned into me, and have changed me as a person. 5-1/2 hours later we heard 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 described that the VSD in Tanner's heart that was believed 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 to 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, and ruled it 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, and it took weeks to wean him off of the gavage. The hardest part for me was that we had such a heart sick baby, and then they "fixed" his heart, and we were sent home expected 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 a healthy happy 14 month old who is walking. He is still hard to feed, and hasn't hit 20 lbs, but I force myself to relax. He is the light of our lives, and 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.

October 6, 2003 Update

Tanner is almost 3 now, and is the greatest blessing I have ever had. Tanner has taught me more about love, compassion, and life than anything else in my 31 years! When we learned about Tanner's heart I remember all the anguish and fear. But if I had to go back in time, I would not change anything, he has made me a better person, and I truly feel privileged to be Tanner's mom. "Tanner Laughs! There was a time I would not allow myself that wish!"

When Tanner turned 2, we took him for his yearly echocardiogram, and learned the most wonderful news! The residual VSD had in fact closed! Tanners heart is a "complete repair." He will continue with yearly echocardiogram, but the words "complete repair" were the sweetest-sounding words I think I have ever heard!