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Dusty Rose’s Story
I was just 19 weeks pregnant when during a routine ultrasound the technician unexpectedly excused herself mid-procedure. She was gone for what felt like an unusually long period of time and when she returned, she was accompanied by one of the doctors. I knew at that moment something wasn’t right. Little did I know this would be the start of a roller-coaster journey that would change my life forever.
I was immediately referred to a new OBGYN who was associated with a pediatric cardiologist, who then confirmed my daughter would be born with a congenital heart defect. A heart defect? How could this be happening and what did this mean? This condition, Tetralogy of Fallot, affects four different areas of the heart, including the pulmonary valve and a small hole between the 2 lower heart chambers. In the 4 months that followed, it was constant monitoring and planning for when this little girl would arrive. There wasn’t much that could be done at that time except wait and see… and worry.
My sweet Dusty Rose was born on February 6, 2019 and appeared to be as perfect as perfect could be, except that she wasn’t breathing. Before I could figure out what was happening or process any of this, the nurses had to resuscitate her and rush her to the NICU after letting me see her for just a brief moment. She was monitored for 4 days, making sure her oxygen levels remained consistent and that she would be able to thrive on her own at home. Then it was time to take her home and try to navigate this whole thing on my own.
We began weekly monitoring appointments with her pediatric cardiologist and on March 14, 2019 following one of these appointments, Dusty Rose’s doctor admitted her to CHOC hospital due to what he referred to as, the significant closing of her pulmonary valve. She spent 9 days at CHOC Hospital in Orange and went through her first heart catheter procedure at that time. This procedure involved threading a small catheter through her femoral artery in her leg up to her heart and balloon dilation of the pulmonary valve. This procedure was intended to extend the amount of time prior to necessary open-heart surgery, as her cardiologist wanted her at no less than 11 lbs. in order to move forward with the surgery. In the recovery room, shortly after the heart catheter, Dusty Rose had a serious reaction to the procedure and her oxygen levels and heart rate dropped to emergency levels. Doctors and nurses rushed in and it all became a blur. Once they were able to stabilize her and treat the resulting Bradycardia issues, she recovered well and was sent home.
We resumed weekly follow up appointments to check on her leaky pulmonary valve, where I was disheartened to learn the valve was almost completely closed again. This meant it was time for surgery and it was way before we ever expected. Thankfully, Dusty Rose reached the 11 lbs the doctor had hoped for before she was admitted for surgery.
On April 16, 2019 Dusty Rose went in for her full repair open-heart surgery. To say this was terrifying would be an understatement. She came out with flying colors and was healing so well they decided to remove all of her drain tubes and pacemaker wires on Day 2! Unfortunately, she suffered with fluid around her heart (infusion) and had a very difficult week thereafter. Several different medications were used to counter the effects of the surgery during healing, which meant she also had to suffer withdrawals from the medications. My sweet girl spent a total of 11 days in the 6th Floor CVICU at CHOC and we were finally able to take her home.
Dusty Rose has been home for 4 weeks. Her tiny chest scar has healed well but serves as a constant reminder and evidence of all her tiny body has endured in these first months of life. It is looking like she will need another heart catheter procedure in the coming months, and potentially an additional open-heart surgery, so our journey is not over. In fact, it is just beginning.
We hope Dusty Rose’s story has touched your heart as much as she has touched us. While her story is unique to us, there are so many others like it. CHOC Hospital has touched so many lives and we ask that you will join us in raising funds for this important cause!