A Mother's Story — Raising An Infant With A Heart Defect: Part 1 Of 6

October 10, 2011


Our introduction into the amazing world of parenthood... and then our abrupt reality check in the form of a life-threatening heart defect and the successful interventions taken at Texas Children's Hospital which taught us to never take a day for granted. This is our story.

Zeyd in bed first day home 2 days oldDay 1: Other than the constant heartburn and some minor swelling, I had a really great pregnancy overall. At my OB/GYN visit when I was 38+6 weeks along, I had a blood pressure reading of 142/90 and trace protein in my urine, so my doctor decided to send me to the hospital for an induction since I was far enough along. Wow, I was ready to be done with pregnancy, but still shocked knowing that if I progress at a decent rate, I should be a mom by tomorrow! Luggage packed, off to the hospital.

Day 2: Zeyd was born at 12:56 p.m. It was so wonderful...amazing...surreal...beautiful...so everything. My gorgeous baby has arrived.

Day 3: I got a phone call from my pediatrician, Dr. William Black, telling me that Zeyd had to stay in the hospital and go under the bili-light instead of going home with us. I was beyond sad. I was convinced that Zeyd would be perfectly and completely healthy and I never thought that I would not be able to take him home with me at my discharge. In hindsight, I just laugh about the situation and how devastated I felt and how common it is for babies to need phototherapy, and especially how relatively minor his case of jaundice was compared to what we would later face.

Day 4: We got to take Zeyd home from the hospital, so happy! He is so precious. I am immediately obsessed with this new love of my life.

Zeyd getting tests doneDay 6: We went to Dr. Black from Texas Children's Pediatric Associates - Sugar Land, who saw Zeyd initially in the hospital, for a follow-up visit and to check his bilirubin level. He heard a suspicious heart murmur and sent us to Texas Children's Hospital for an echocardiogram. I knew immediately that there was a problem. I am somewhat familiar with heart murmurs from nursing school, so fear immediately set in. I prayed it was a very benign murmur that would resolve quickly on its own as his heart grew. The echo was taking much longer than I thought and

the cardiology fellow doing it was completely silent. Time went very slowly during that initial echo. Please, please be a dream. I tried to be so healthy during pregnancy and I never missed my prenatal vitamins, what could possibly be so wrong? We finally received the diagnosis and found out Zeyd has Complete AV Canal Defect, a heart defect of which I was not very familiar. Shortly after hearing that news, since Zeyd was stable, we were sent home with instructions to follow up with a cardiologist. This was the start to the scare we felt every single day from this day forward regarding Zeyd's heart condition. I went home and researched the defect. I forced myself to only read the information about the defect and anything about positive prognosis in other cases. I felt like I was in denial, like I knew he would eventually need surgery, but I thought maybe if I prayed enough, God would heal his heart and I could forget this unfortunate diagnosis that my new baby boy had. I had always believed in miracles.

Day 15: Dr. Black listened to Zeyd's heart again and immediately sent us to cardiologist Dr. Shannon Rivenes, also from TCPA - Sugarland. When she took a peek at Zeyd's heart on the echocardiogram, she saw that the left side was very, very small and because Zeyd was constantly tachypneic with frequent retractions and grunting, she suggested we go to the Emergency Room — where he would likely be admitted for heart surgery. We went to the ER at Texas Children's Hospital and were admitted immediately. This was serious because this time we skipped the time in the ER waiting room. The only time where you wished you were the last one called because it meant your child was the least critical. Not this time though, front of the line and Zeyd was admitted to Cardiovascular ICU for one night. Dr. Heather Dickerson was the first smiling cardiologist I remember in the CVICU. She explained a little about our situation and Zeyd's heart condition. My husband and I stayed the night in the Ronald McDonald House at Texas Children's. We knew sleep would be important to us functioning better and being there for Zeyd. Thank God for the Ronald McDonald House, how amazing. Despite all of the bad news and fear, we had a nice bed and personal restroom and helpful people everywhere... and we were walking distance to Zeyd most importantly.
16 days old in hospital

Day 16: Today we were discharged down to the 15th floor where they could monitor Zeyd, seeing as he may need the surgery soon. We stayed there for the next two weeks. During these two weeks our goal was to put on as much weight as possible, in case of surgery. The surgical pathway for his particular defect was not clear cut and about three different options were discussed as surgical interventions and treatment plans for Zeyd. Cardiologist Dr. Henri Justino and his team were the docs following Zeyd on the 15th floor and helped Zeyd to get his surgery with Dr. Jeffrey Heinle, an amazing and talented cardiothoracic surgeon specializing in congenital heart defects.

Zeyd had his first real smile just after two weeks old when his grandma came to visit him. A baby's smile makes you forget any and all fear and anxiety, it may be just for a few seconds, but it is worth it, and so much more, especially when it's your baby, and most especially — when it's your sick baby.

To be continued...

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