Macy Kate McBane has been through more medical procedures in her five short years of life than most people experience in their lifetime. At our 20-week ultrasound, we found out her heart had not formed properly and she would be born with Hypoplastic Left Heart Syndrome, which meant her first few years would be a life full of open heart surgeries and hospitalizations.
After a harrowing c-section birth—breech with the cord wrapped around her neck a full three times—she had 7 short days in Colorado Springs before being life-flighted to Denver. At nine days old, she underwent her first open heart surgery. She came home for the very first time on Father's Day, when she was 32 days old. Life was hard but good those first few months—we kept busy with doctors’ appointments, constantly monitoring her oxygen sats and a daily struggle with vomiting and g tube feedings as we tried to get her to gain weight. We were exhausted but thankful for home life.
We didn't know how thankful we should be for those days at home until we began our two-month hospital stay after her first heart cath. After her cath, she developed a large blood clot in her leg, silently began aspirating, went into cardiac arrest four times as we rushed her back to the CICU, and was soon to develop pneumonia. After several weeks in-patient, she was stable enough to move forward with the Norwood. Her post-op recovery was slow, complicated by constant respiratory struggles and compounded by sepsis. Finally, after spending Thanksgiving, Christmas, and New Year’s in the hospital, she came home.
We continued to battle stubbornly high pulmonary pressures, hoping against hope that time, medication, and 24/7 oxygen support would eventually get her to the much-needed Glenn. At 14 months old, almost a full year past the “ideal” time to have her next surgery, her pulmonary pressures were within an acceptable range. After an amazingly short, 8 day hospital stay, we came home to live life for two more years before we were ready for the Fontan.
The year 2019 brought us Macy’s 4th birthday, her Fontan surgery, and nearly three weeks of hospital recovery as we battled another round of confusingly low oxygen sats and a struggling little girl. Thanks to the amazing team at Children’s, we continued to work through these issues and eventually came home.
Macy thrived for the rest of 2019 and for the first time in her life, we started a new year (2020) without an open heart surgery on the horizon. Little did we know that at the end of January, we would be once again in the CICU with a very sick little girl. This time, we heard words like “stroke,” “brain abscess” and “emergency brain surgery.” We were in shock but once again grateful for a phenomenal team—not only did Macy’s “regulars” in the CICU and CPCU care for her with love and excellence, she also acquired a whole new set of friends in neurosurgery, neurology, and infectious disease. Twelve days after her emergency craniotomy, Macy left the hospital to continue her recovery at home.
By God’s amazing grace, Macy turned five years old in May. She runs, jumps, talks non-stop, and plays with her big sister like a normal kid. And there are no words to describe the deep gratitude we have for the amazing team at Children’s. We wouldn’t be here with our Macy girl if they hadn’t been there for us every step of the way.