Josalyn's Journey - A Whole Lotta Heart

I (Wendy Miller) gave birth to Josalyn, a beautiful baby girl on 8/15/23. Labor was induced because in late June during an unplanned hospitalisation, a heart defect was discovered, AVSD. An atrioventricular septal defect (AVSD) is a heart defect in which there are holes between the chambers of the right and left sides of the heart, and the valves that control the flow of blood between these chambers may not be formed correctly. Additionally, Joss has significant mitral valve regurgitation (blood is going the wrong way from the heart).

At a routine cardiologist appointment on Monday 9/25/23, we were admitted to the hospital for "High Output Heart Failure". She was 6 weeks old. Her breathing was so labored because of how hard her lungs were working, she was burning more calories than she was taking in. She had started vomiting a lot (not normal spit up) was lethargic and underweight. A feeding tube was placed upon our arrival in order to immediately get the nutrients she needed without the exercise of trying to breathe, suck and swallow. The main goal while hospitalized was to have her gain weight and improve her breathing so that she would survive the necessary surgery to repair her heart. Originally, they estimated her surgery between a year and two years old. At the time all of this occurred the Team's goal was to get her to six months old.

On 10/5/23 she had a swallow study which revealed she has Laryngomalacia. Laryngomalacia literally means “Soft Larynx”. It is caused by floppiness of the laryngeal tissues above the vocal cords. With breathing in the tissues above the vocal cords fall in towards the airway and cause partial obstruction. This creates noisy breathing due to obstruction at the level of the voice box. Typically the folds of tissue between the front and back of the voice box are shortened. This causes the epiglottis to curl inward (become “omega-shaped”) and causes the tissue over the cartilage in the back of the voice box to suck into the airway. This causes symptoms like acid reflux from the stomach (GERD), as this condition may worsen the symptoms of laryngomalacia. Severe symptoms such as hers result in poor feeding/poor weight gain, pauses in the breathing (apnea) or turning blue which thankfully was the only symptom she didn't have. Surgery for this condition is called Supraglottoplasty. Josalyn underwent this procedure on 10/9/23.

On 10/11/23 her vitals tanked and we were moved to the ICU, her heart was failing even more. After a variety of testing and a lot of tribulation, she underwent Open Heart Surgery on 10/19/23. She was just 8 weeks old.

After that, things got exponentially hard for all of us, and on 11/23/23 she ended up having yet another surgery, this time for a G-tube.

We were ultimately discharged on 11/25/23, to start living our new normal. Feel free read some of the updates for the gory details.

Our plight remains the same: Ridiculously costly ($1045 per month) Insurance only covers so much. The system is broken, but, you probably know that.