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3/15/2017 Latest post:
My baby Beau was diagnosed with a Congenital Heart Defect in Utero when I was 24 weeks pregnant, along with (possibly) only one kidney, which we now know is just smaller than a normal sized Kidney. We weren't sure how baby Beau was going to do after birth, but luckily his oxygen saturation was in the high 90's to 100 most of the time while he was in the NICU(Neonatal Intensive Care Unit), so he didn't have to have surgery right after birth(yay!). After birth he was diagnosed with a few additional complications: Double Outlet Right Ventricle(Heart Defect), Thumb Hypoplasia, Mild Scoliosis, and his left ear didn't fully form, so possible hearing loss. My poor little guy was off to a rough start... He was in the NICU for 6 days, and then we finally got to take our boo boo home :) We followed up with our Cardiologist every few weeks to see how baby Beau's heart was doing and how well he was gaining weight. With Beau's heart condition, he had a large hole (VSD) in the septum dividing the bottom two chambers of his heart, which allowed too much of the blood to the lungs. His Aorta also was over riding onto the right side of his heart. Babies born with this heart condition don't have a long life expectancy without having Open Heart Surgery to repair it. Luckily Beau is a trooper and we were able to put off the surgery until now, so it has given him time to gain weight and to allow a much smoother recovery. He had his Open Heart Surgery this morning (03/13/17) at 7:30 in the morning. The surgery took about 6 hours from start to finish. One of the surgeons told us that everything went very well and that Beau was now transferred to Recovery in the PICU(Pediatric Intensive Care Unit). He is still heavily sedated and will probably wake up within the next couple of days. His total hospital recovery time totally depends on how he is handling the recovery, but is estimated between 5 to 10 days. His total recovery time will be about 2 months. As for Beau's hearing, he definitely responds to us and can hear out of his right ear, but his left ear is underdeveloped and the ear canal did not form. We're still unsure if he has an ear drum and all the working parts inside his left ear and if they could possibly just open up the canal, or if he doesn't have much use from that ear at all. Cosmetically they will form a new ear to repair the outside since it did not develop fully. His thumb on his left side is a Hypoplastic thumb and is only attached by the skin, so as far as we know he will have his thumb amputated and they will rotate his index finger to replace his thumb. We will keep updates on all of that as soon as we know more. Thank you to everyone who is sending love and prayers, it's been a rough ride. He's my brave little man :) If you would like to help us out more and are able to donate please check out our Gofundme page under ways to help for baby Beau. Anything helps :)