Sorry it has been awhile friends. My first child was born on December 22, 2018. She was born with an undetectable heart disease called Super-cardiac Total Anomalous Pulmonary Venous Return (TAPVR). AKA: Her veins all grew to the wrong chambers of her heart. She was emergency transported to Johns Hopkins and once detected and the veins were traced where they needed to go, she went through open heart surgery at just 11 hours old. Just seven days later after her first heart surgery, she under went a Cardiac Catheter procedure that showed her pulmonary veins were stenosing (narrowing). Unfortunately, with this rare disease, she was hit with an even rarer disease afterwards known as Pulmonary Vein Stenosis, which only happens in 1 of 14,000 cases of TAPVR. Johns Hopkins reached out to Boston Children's, Philadelphia Children's. and Children's National in DC who are also among the top Pediatric Cardiology programs and Aubrey is the youngest baby recorded in having stenosis this aggressive. 8 Days after her first open heart surgery, she had to have another open heart surgery. It was a couple of firsts in Johns Hopkins history: They have never done two open heart surgeries so close together on a baby this young, and in medical history this particular surgery was never performed on a baby this young. Aubrey came out of these surgeries doing well and the Hopkins team did an amazing job. About two weeks later Aubrey was hit with Sepsis and was again fighting for her life. She fought through this and recovered fully. She came home on February 7th 2019. Only having her home for 7 days, on February 14th my wife, Paige, noticed she was breathing very hard and rapidly. My wife's mom senses kicked in and we cooked it down to Johns Hopkins ER. There the cardiac team came down and did an echo of her heart and veins. Unfortunately, her pulmonary veins on the side the surgery did not touch, started to narrow. Once again, the surgeons and doctors have not seen such an aggressive disease before. We were readmitted on Valentine's day to Johns Hopkins with a Cardiac Catheter procedure scheduled in the next couple days. The Cardiac Catheter came and they were able to place a stent in one vein, but the other vein narrowed so badly that they could not even get the catheter through. All 3 cardiologists that perform this procedure at Hopkins tried. So after 10 hours in the Cardiac Catheter Lab, they had to stop due to the radiation levels. We were sat down at 11pm when they were done, and told Aubrey would need a third open heart surgery at not even 3 months old. On March 1st, Aubrey had her 3rd open heart surgery, as they mimicked the surgery they did prior, but on the right side this time. Aubrey fought through again and we brought her home on March 18th! She has been doing well cardiac wise. We did have another surgery two Fridays ago, as they placed a G Tube and did a Nissen Procedure, as her reflux and throat issues were really bad since she has had a breathing tube and NG Feeding tube in her throat since day one.
Today I write this, as she is doing well and is such a loving and smiley baby. I feel it's important to post this, as this is how life goes. You have ups and downs and never know how things will transpire. All during my wife's pregnancy we were told the baby was super healthy and I never imagined anything like this taking place. I want you all to know that the days and nights I spent in the hospital, I would jump on this forum to read and take a break from what was taking place. It was a way I could enjoy the hobby I love and decompress, while still being there for my daughter and wife. Thank you all for this forum and for the love of trains, it is more than just a hobby, it is a way to truly unwind from our daily stresses. Here are some pictures of a future train buff! If she can still smile, then anyone can smile!
-Eric
