This year on March 10th we welcomed our first born daughter Emilia. Emilia was expected to be a healthy and normal baby based on what the doctor could discern. Nonetheless, after delivering her a cardiologist advised us that Emilia “did not look good”. This was a scary thought and a mother’s worst nightmare. 5 Hours later, Emilia was airlifted to Driscoll Children’s Hospital. It was then where she was diagnosed with a Congenital Heart Defect called Tetralogy of Fallot with Pulmonary Atresia. In sum, her heart has four different heart defects. Unfortunately, there is no cure for her heart condition and it is only through a series of surgeries that her heart function can improve.
Our hearts sunk, but Emilia’s life is of utmost importance. At 10 days old, we had to hand Emilia to the Cardiothoracic surgeons for her first open heart surgery. She had a BT shunt place in her heart and we were told it was the only means of survival. A fail was a possibility, but it was a risk we needed to take to ensure Emilia’s survival. After 3 hours in surgery, she came out like a warrior, a heart warrior. It was all going well until 5 days after her surgery. Doctors noticed her artificial artery (shunt) narrow so they decided to place her on blood thinners. Emilia receives a blood thinner shot twice a day in order for her artificial artery to have a good flow and prevent it from getting narrower and clotting. Emilia lasted two months in the NICU of Driscoll until we were discharged on May 8. Discharge meant happiness yet fear - fear of going home and something going wrong and being so far away from doctors and the safety that Driscoll provided. Nonetheless, going home was so emotional. It meant that Emilia was going to finally be able to be in her nursery room, a room that we thought she would never visit. We were overjoyed! We made sure Emilia enjoyed her stay at home as much as she could. Home for her meant no more wires, no more waking her up every three hours, no more IV lines, no more medicines, no more nurses and doctors and no more stethoscopes. Our days of shine soon turned gray. Just two weeks after on May 23rd Emilia’s shunt got even more narrower, which meant that her oxygen levels began dropping even more because her shunt is the only way she gets oxygen to her lungs. The doctors informed us she needed a heart catherization. Once again our hearts sunk, but that was the only option for her. The day came and again, we handed our daughter for the second time to the surgeons and cardiologist. The procedure lasted 50 minutes. 50 minutes that felt like hours to us. Once again, our baby came out through the two most scariest doors and was rolled into her recovery room. Just a few hours later, the plan was to extubate as she was shining over the ventilator. After a failed extubation, they decided to reintubate her. We were welcomed to come in and see her now. As we walked in, we walked into a real life nightmare instead of seeing our joyous baby we saw an angel laying in bed. Emilia had coded and had gone into cardiac arrest. Emilia was white as if her color was drained from her body. Two chairs were rolled in and we got an invitation to sit down to see the scariest things no parent deserves or wishes to see - see their baby’s limp body while doctors tried to resuscitate her. “Hold /Start compressions” is all I heard. Doctors told us that Emilia was practically gone and the only thing left was to attempt to put her on ECMO(Life support), although they thought they were too late to bring her back. Not sure how it happened, possibly a miracle, but our baby pulled through and doctors were able to get her on life support. As scary as it looked, we were happy she had a heart beat. Four days later, Emilia was able to come off ECMO and just when I thought we were in the clear and nothing else could go wrong, doctors informed us that Emilia suffered a major stroke. A stroke that affected the right side of her brain. We are not sure how she will recover or how she will ever be, but for now we are grateful to God to even have her with us. We know this is just the beginning of the numerous heartaches that await us, but if getting our hearts broken means life for her, we will do so.
Never in my entire life did I think of creating something like this, but life changes every minute and you never know what life has for you.
With the donated money we will cover some of the medical expenses. Although we may need another lifetime to pay all the medical expenses, Emilia’s life has no price “Our Million dollar baby”, if you get what I mean.
Our hearts go out to all families that are dealing with CHD. It’s a long and unknown journey for us and Emilia and our future is uncertain but, for now we make the best of it. With that being said, love your children and never take a breath for granted.
With Love, a sincere thank you for all of your kindness, support, thoughts, prayers and donations! God bless you!