Violet was born with a broken heart in July 2012. We knew beforehand that we would be facing a big battle. Violet was already in heart failure while I was still pregnant and her future was unknown. The staff at Johns Hopkins took such great care of her after she was born and we only spent six days in the NICU! She did remarkably well and required no interventions. Just two weeks after her first discharge, she was admitted following a routine cardiology appointment. She needed some support, both medically and nutritionally. She was sent home on two diuretics and a higher calorie recipe for her breast milk and formula. After another six day stay, we were sent home knowing that her first heart surgery was around the corner. It came just five weeks later, at the age of eight weeks old. Violet has a very unique heart so they were unable to do her full repair like they wanted to and opted for a Pulmonary Artery (PA) band. This would allow her to grow safely and get her in a better spot. She faced a lot of complications following her surgery – narcotic dependency, aspiration, codes, developmental regression. The decision was made that she needed a sustainable means of feeding. This meant she needed to get a G-tube (feeding tube directly into the stomach) and a Nissen Fundolplication to hopefully help prevent aspiration and acid from going into her lung. This surgery ended up being much harder on her than the heart surgery and we were there for another three weeks trying to rehabilitate her.

The next four months were glorious at home. She was finally able to just be a baby and was learning so many new things. Violet was a joy! In the back of our minds, we knew we were facing another surgery very soon. ON 2/14/2013, her cardiologist saw that her PA band was becoming too tight. This meant that they would either loosen the band through a cath procedure or they would be scheduling her repair surgery. Just a week later, they called to tell us that it was time. She has been discussed multiple times at the surgical conference they hold twice a week and her surgeon was confident that she would fair well. On 4/10/2013, she had a cardiac MRI and Transesophageal Echo (TEE) in preparation for her surgery. Her heart and pulmonary system are a bit backwards since her heart is on the right side of her chest and they needed to be prepared for any scenario. On 5/1/2013, Violet went into the OR for the third time. It was a long seven hours, but when we saw her in the PICU, it was the best that she had ever looked! Violet had an amazing recovery with very few bumps. She was discharged just ten days later!

Violet has not had any interventions since May 2013, which we are very thankful for! She has had a lot of testing for different areas and was recently diagnosed with suspected Primary Ciliary Dyskensia (PCD). This is a chronic disorder that affects cilia movement, mostly in the respiratory tract. Because of this, she deals with a lot of respiratory infections including chronic bronchitis and ear infections. Violet doesn’t let that stop her though – she recently graduated kindergarten and is heading into first grade in the fall!

Over these past two years since her last surgery, we have seen birthdays, milestones, growth, love.  Her spirit and love for life have just blossomed and we are so grateful we live in an age where she can receive the best care that she needed. Violet has changed our lives and she will continue to do so. She may need a pacemaker in the future due to her having two left atria (Left Atrial Isomerism; Heterotaxy), but we will get through anything that comes our way.