Alexis, Luciana & An Extra Strong Heart

By Alexis Pecheks

“She’s in the NICU, Her oxygen is low, she has a heart condition, and down syndrome”

That sentence will always haunt me, not because of what was told to me, but because of how it was told to me. This was supposed to be a joyous occasion of just having delivered our daughter into the world turned into a day that I had never felt more alone. That feeling never goes away.

Being pregnant for the third time came as a surprise. We had already made the decision to be done with having more kids, and the universe said not today. My pregnancy was a hard one both mentally and physically. It was isolating being pregnant during a pandemic and every pregnancy symptom in the book was thrown at me this time around. Besides that, my pregnancy was pretty much uneventful until I was about 34 weeks pregnant. I had some round ligament pain that sent me to the emergency room because they felt like contractions. Thank goodness they weren’t but while there, they checked on Luciana and noticed that there was more amniotic fluid than normal which is called Polyhydramnios. It was something that they were going to just keep an eye on to make sure it didn’t become more of an issue. Well at 36 weeks that changed, the amniotic fluid increased more and put us both at risk. So it was time for an induction at 38 weeks.

Our little Luciana Marie came out flying, literally just in 3 pushes and just like her siblings, she didn’t cry which of course made us all nervous. We were so happy that she was finally here, and we were ready to start life as a family of five. That all came to a halt at 6am when a Nurse practitioner came in and started talking to me. I was in and out of it as I had just given birth 8 hours before. The last thing I heard her say was “your baby is in the NICU, she needs oxygen, has a heart condition and down syndrome” and proceeded to walk out. I was panicked, I was alone as my husband michael had just left to go home really quicky. I felt like my world was spinning, how, how was this possible, how was it not caught during all my ultrasounds. And the biggest one, why? Why us? We didn’t understand it then, but we knew there was a purpose. Luciana came home after 6 days in the NICU.

The down syndrome didn’t scare us, at the end of the day that wasn’t going to stop us from loving her or supporting in whatever way she needed us. The heart condition is what scared us, not know how severe it was, knowing that our little baby most likely needed surgery, not knowing what the future held for her and her heart. We had countless of cardiology appointments with our amazing cardiologist. She walked us through every appointment and made sure that we were taken care of by the top-notch surgeon. Surgery was going to be scheduled anywhere from four months of age to 6 months of age, it was just all dependent on how her heart was doing. We got the call the last week of May for Luciana’s Surgery date. We felt numb knowing that there was an actual day but also a sense of relief that her heart would get the repair it would need. We tried to keep our minds off of it that summer and spending as much time as a family, because we didn’t know what the future could hold.

July 27 at 5 months of age, Luciana went in for surgery. We had only met her Surgeon the day before and we were nervous. When he walked in the room, he carried himself so good and had a sense of calmness to him that made us feel calm as well even though in just a short 24 hours we would hand over our little baby girl for open heart surgery. He answered every question with poise and was very thorough with his answers. We left a little bit more confident than when we entered which felt like a bit of relief. They told us to prepare for 2-4 weeks of a stay and we were not looking forward to that.

Surgery day came and went, it felt like an out of body experience, where you were there but it also felt like a blur. It felt like it was the longest day of our lives, which it was. They took back Luciana at 10 am but didn’t start surgery until about 1pm. We were updated every hour by the surgical nurse on how it was going, we tried to keep ourselves entertained and not think about it but let’s be real, it is all we thought about. Surgery was a success she was out around 6pm and went straight to the CICU. In true Luciana form, she flew through the hospital and was out in 6 days again.

With surgery behind us now, we are focusing on living life as a family of five, in between all the appointment necessary to help her gain strength, thrive and live life to the fullest. Luciana works hard to meet all her goals and achieves everything that is thrown at her with grace. This journey may not have been what we had planned for, but let me tell you, we wouldn’t have it any other way. This community of “The Lucky Few” welcomed us with open arms and open hearts. Having others share their stories and being able to relate to other families brought us so much relief that we weren’t alone. We may have started out a bit bumpy with the fear and unknowns, but this journey has also brought more joy than we ever thought was possible. I hope that the world can see how beautiful different can be and we hope that we can show them that through Luciana.

You can follow Alexis, Luciana and all the Pecheks on Instagram @raising.pecheks. Stay tuned for a joint fundraiser next month for World Down Syndrome Day!