*BornWithABrokenHeart

Declan Joseph was born on 12/25/20, the best Christmas gift ever. He’s always so smiley and happy, and everyone even strangers, always saying how perfect and beautiful he is. We decided to go visit Gigi in New York the first week in February, while there on 02/03, baby boy woke us up crying, we figured he was hungry. We noticed he was breathing really abnormal while eating, we decided to give him a minute to calm down since he was just mad cuz he was hungry, but after he ate and fell asleep it didn’t stop. It was like he was struggling to breathe and was working hard to do it. Belly breathing with retractions by his ribs. I stayed up the rest of the night and we took him to the ER in the morning. He was there six hours, only to be told he has a heart murmur and we needed to take him to ALBANY to get an ekg. So we did, when we go there, he was immediately put on high flow oxygen, an iv put in, an ekg done and bloodwork. Ekg came back normal, but his bnp was high, this had to do with the heart. They informed us he was being admitted to the PICU for his breathing as his chest X-rays were perfect, as well as all the other bloodwork, no infections, etc. The next day they did an echocardiogram, which showed he may have a blockage in his heart. The cardiologist said he needed to ask his board of cardiologists what they thought cuz the test was inconclusive. He said also he has signs of a congenital heart defect the abnormal breathing, bp difference in his arms and legs, blue skin (in his feet sometimes) and the constant spitting up. He said he’s either completely normal or he’ll need heart surgery, I know that’s the most vague diagnosis ever and I’m sorry. The next day the sent him for a CT scan because the meeting he had with the others, they weren’t sure either. His CT scan came back fast and it confirmed what we weren’t wanting to hear - coarctation of the aorta. He has a narrow part in his aorta the restricts blood flow thru his heart and to the body, and cause a blockage. Ultimately they have to do surgery to repair it, by cutting out the narrow area and reconnecting the pieces. This weekend has been horrible with them taking him off oxygen and his abnormal breathing coming back, then I’ve been fighting with the doctors to put him back on cuz it took that breathing away and he was doing it normal. With it being the weekend, at this point it is just a waiting game of what we need/want to do, and that will come Monday when we talk with his cardiologist again.  We are still in NY and have to return home so we can return to work so we can support our little family. While we're here, we need help in doing so. Anything is welcome and appreciated. Please say a prayer for my little man if you can't help monetarily. Thank you!