February 2012 – Featured Blogs for CHD Awareness
FEBRUARY 9-13:
Kendall – written by heart mom, Kimberly South
Charlotte - written by heart mom, Kristie Cooper
FEBRUARY 14:
JAXSON – written by heart mom, Heide McManus
Jaxson was born on December 23, 2010 at 5:25pm in Charleston, South Carolina. He was almost 2 months early, weighing in at 3 pounds, 12 ounces and measuring 16 ½ inches long! How we came to deliver him in Charleston-3 hours away from our home-is how our story begins.
- We counted down the days to our 20-week ultrasound to determine if we were having a BOY or a GIRL. We were delighted when the technician told us it was a little BOY…only to be devastated to hear our baby had a serious heart defect. We were then referred to a high risk Obstetrician. After a long, scary ultrasound, the doctor recommended we terminate the pregnancy. We rejected that recommendation and made the steadfast decision to carry our baby to term. Soon after, we met with Dr. David Malpass with Pediatric Cardiology and learned more about Jaxson’s heart condition. I will never forget what he said to us the day of our ultrasound. He said,”This may come as a surprise to us today, but this is no surprise to God!” Those words resonated with us and helped carry us through our journey.Once Jaxson was born, his heart would have to go through a series of ‘interventions’ to save his life. Without surgery, he had no chance of survival. The statistics were in our favor, although surrounded by risks.At 29 weeks I was hospitalized for preeclampsia. My blood pressure was dangerously high and the only ‘cure’ was to deliver the baby. However, Jaxson only weighed approximately 3 ½ pounds and delivery before 5 pounds would prove fatal. The doctors told us that his heart surgery could not be done until he was at least 5 pounds. Hospitalized bed rest was the safest option to attempt to carry Jaxson as long as possible. I was soon transferred from our home in Greenville, SC to Charleston, SC at MUSC where the nation’s greatest pediatric heart surgeon, Dr. Scott Bradle
y was located.Jaxson was delivered at 32 weeks via emergency cesarean section at the strong recommendation of the doctors. After delivery, we briefly saw our sweet boy before he was whisked away to the Neonatal Intensive Care Unit. He would stay there for 8 days, in the efforts to grow and gain weight before moving to the Pediatric Cardiology Intensive Care Unit to prepare for surgery. Jaxson was born with L-Transposition of the Great Arteries, Artial Septal Defect, Coarctation of the Aorta, Singe Ventricle, and Tricuspid Atresia. The anatomy of his heart was complex and unique. Amazingly, after performing an ultrasound on his heart, the doctors determined even at his weight they could perform a hybrid Norwood surgery on his heart. On January, 4, 2011 Jaxson underwent his first of three heart surgeries. He came through the procedure well and in stable condition. Over the course of the next 7 weeks, he continued to heal at a surprising speed, according to the doctors. He had problems coming off the ventilator, and after 3 failed attempts to remove his breathing tube, Jaxson self-extubated. Within the next week, contrary to medical science, Jaxson pulled out ‘lines’ that kept him from being held! He was tel
ling the doctors he was ready to go home! With his great improvement, the lines were not necessary to be replaced.After living in the Ronald McDonald house for 7 weeks, sitting at his bedside holding his hand and singing lullabies, I was able to hold my sweet boy! We were soon transferred out of PCICU to the recovery floor. Our new challenge was for Jaxson to ‘learn’ to feed by mouth; the doctors told me to be prepared for a long and frustrating time. ‘Heart babies’, especially preemies, have extended issues with learning to swallow and drink a bottle. However, our God who had carried Jaxson through so much already wasn’t done surprising the doctors. After a near perfect swallow study, Jaxson began feeding by the bottle at amazing speed! Just 9 days after being released from PCICU, Jaxson was cleared for discharge. Not only did he surprise the doctors by quickly learning to eat, but he decided to do this on his original due date – Valentine’s Day, February 14, 2011!
After what seemed to be a short 8 months
, we traveled back to Charleston for Jaxson’s 2nd heart surgery. Dr. Bradley performed the ‘GlennWood’ surgery on October 6, 2011. We were blessed and thrilled to he
ar the surgery went well and Jaxson was stable. After only 3 days in PCICU, we were transferred to the recovery floor, 8D; a far too familiar place after spending so much time during his first surgery and 2 subsequent Cath procedures. Jaxson’s recovery was quick and although we expected to spend close to a month at MUSC, we were released 3 days later. In all, Jaxson had open-heart surgery and was on his way back to Greenville in less than 1 week!The Lord has abundantly blessed us with skilled and caring doctors throughout our journey with Jaxson. We were also blessed by an outpouring of support through Palmetto Hearts, who gave us meal vouchers during our stays in Charleston.
Our journey is not over, but everyday with our precious little boy is one more day to count our blessings and pay it forward. Jaxson is thriving and doing amazingly well! We celebrated his first birthday in December and his first ‘heart birthday’ in January. We look forward to many, many more!
SARA WALLACE, Palmetto Hearts Founder & President
January 29, 2012
Palmetto Hearts began as a ministry and it was with our first loss of a precious heart baby that I realized, God is truly in control and sustaining each of us through His plan. We could not and would not be where we are today if it was not for His leading and His strength. Palmetto Hearts would not exist without our Father. Over the course of the last year, I felt God leading me to find someone to step in as director and move my role to growing Palmetto Hearts instead of handling the daily operations and scheduling. It was then that God led Kimberly into my path and at just the right time (His time) it was an easy and smooth decision. Although I will no longer hold the position of “Executive Director”, I am no less involved in working for and supporting our families. I will be focusing on expanding our Voucher Programs as well as securing funding through grant writing. I am thrilled to see what God has in the coming years for our families! We have already been blessed beyond measure this year.
On a more personal note, Palmetto Hearts has been a focal point of my life for the last four years. The emotions that come with every call and every email are at times overwhelming. I am honored to be a part of His plan for our special hearts and families. I am honored to know, pray for, and talk with you. I have come to love and be blessed by you. Thank you for allowing me to be such an intimate part of your lives. I am looking forward to continuing this journey with you.
God bless each of you as He has me.
In Him,
Sara
