I had a normal pregnancy and delivery and our room was filled with family and friends shortly after his birth. After the Ooh's and Ahh's were finished and our family went home, Rusty headed with Braden to the nursery for his bath and newborn shots. I had just gotten settled in my post partum room and my lunch had just arrived, when Rusty walked in the room with look of panic on his face. He finally said, "They think there is something wrong with his heart."
It took about nine hours for the pediatric cardiologist consult to arrive. As soon as the echo was repeated and x-rays finished we had our entire family with as as the doctor explained the basics of Braden's defect. He drew us a picture showing us where all the anomalies were and the entire time I remembered thinking to myself, that I had no clue what a normal heart looked like! At 12 hours old Braden was Life Flighted to nearby Phoenix Children' Hospital and admitted to the NICU. As more defects were discovered we felt helpless. And ultimately his entire diagnosis was Double Outlet Right Ventricle with Transposition of the Great Vessels; a VSD, an ASD and a prolapsed Mitral Valve. After 8 days, numerous Echo's, EKG's and blood work we finally were able to get him to gain some weight and were allowed home.
Quickly our routine of feedings, giving meds, cleaning up everything that didn't stay down from the feedings, diapers and doctors appointments consumed our lives. He was stable and gaining ounces every week. When he was two months old a routine cardio visit ended in a diagnosis of Failure to Thrive and a trip to Phoenix Children's to place an NG tube. What should have been a 24 hour stay turned into nearly three weeks in the PICU as we discovered he was in heart failure. On Christmas Eve 2002, Braden had his first heart procedure- a cardiac cath. We knew the risk of enlarging his VSD was high , so they had the OR prepped for him in case they needed to do surgery right away. Luckily, he did well and spent his very first Christmas recovering in the PICU.
At the time Braden was born there was only one Pediatric CardioVascular Surgeon in Arizona, and he had just been in a serious car accident. The 'replacement' PCV surgeon felt a single ventircle repair was a good option. As a family, we felt that he could have a full repair done and sent his records to several surgeons across the U.S. Eventually, we decided to take Braden to Dr. Frank Hanley at Lucille Packard Children's Hospital at Stanford. Then, for the next two months we focused on getting him to gain weight. He was on 28 calorie formula round the clock.
The day he turned 4 months old we boarded a plane for Palo Alto, California with my husbands parents and high expectations. On February 7, 2003 Braden had his first open heart surgery. I think I aged about 20 years in the ten hours we waited while he was in the O.R. Nearly 15 hours after we hugged our baby goodbye in the hall, we were taken back to see him briefly.
I was not prepared to see him post op. The emotions of feeling so grateful they made it through, and yet so sorry for the pain they are in --all at the same time, it was overwhelming. I am sure every Heart Mom knows just what I mean.
It took a week to wean him off the ventilator and I got to hold him for the first time on Valentine' Day. He faced heart block, pace maker issues, became addicted to the pain meds, and had to go through withdrawal all in the two and a half weeks of his stay in the CVICU. But there were high points as well. He laughed his first ever laugh on his Daddy's birthday and learned to put his paci back in. A few days before we were discharged our surgeon told us he had thought Braden had about a 15% chance of making it out of the surgery. And I think that was the first time we really realized just how severe and rare of a defect he had. His progress amazed everyone. His case was even studied at an international convention for PCV Surgeons. We went back to the hotel in California, pulled his NG tube for the final time, and booked a ticket home.
He excelled, gaining weight, weaning off his Lasix and was doing great...for about two months. Then, he went into heart failure, again. The sutures in his repaired Mitral Valve hadn't held and he would require another surgery. In August of 2003, at ten months old, we again packed our family up and headed back to LPCH.
I think the most amazing part of his journey has been my ability to talk with other families going through this process. In several cases good friends have been diagnosed in utero and I was able to hold their hand as they cried and later help them pack for hospital stays. Just this month my new little niece was born and she too has a heart defect and it has been so comforting to my brother and sister in law to have us guide them through this difficult journey. I welcome any Heart Mom's who need to vent, cry or have questions to contact me or another Heart Mom- because it helps so much to know you are not out there doing it alone.