At a week old Blake slept a lot more then a normal new born. One late night after a Daddy, son hang out session it was noticed that he was really pale. I was up all night with Blake due to him being fussy so we went down stairs so Daddy could sleep. By morning I called the pediatrician and they said to come right in. We signed in and got taken right back to a room, as soon as the nurse saw his coloring she left the room and came back with and oxygen mask and tank, my heart sank. She told both of us we need to follow her to the ER and the doctor will meet us there. I will never forget that walk down the hall, it seemed like it was never going to end. The nurse laid him on the er bed and nurses n doctors just started flowing in. Blake got hooked up to so many machines, my eyes never cried so much. I called everyone I could think of. My heart sank even further when I had to call the sitter and have her watch my oldest son for a bit longer. The ER team placed a call to Rochester Strong for a transport. When it was time to transport Dean or myself could not ride in the ambulance because of space so we drove ourselves. After arriving and checking into a room, a team of doctors came to explain what was happening in the ER room. Blake was hooked up to so many machines once again, at a week old his body looked so lost. He was sadated for the whole week we were there. In the week we were there it was discovered Blake had acidosis and it was building up around his heart and they had to release that with medicine. That build up was covering up the real issue. My other son was staying with a neighbor and I was lost without both of my kids together in my arms. One of Blakes heart team doctors came in our room and explained he would need a heart transplant if his own heart would not start pumping on its own without one of the medicines that was making it pump, well he couldn’t make it start one it’s own. We were told the next morning it was tried and Blakes heart was not working. He had Non-Compation Cardiomyopathy, which means his left side of the heart was not working. Over the week we were in the hospital Blake turned 2wks and was being tube fed. We had family come by because he was so weak everyday was a blessing. We were asked and told of different hospitals we can choose from to go and wait for the transplant to happen, we choose Mt. Sinai in NYC. My heart was torn into so many pieces when I had to tell my oldest son I was leaving, we spent the night with his friends bowling. By morning one of the hardest days in my life was happening, I had to leave my 10yr old for I didn’t even know how long. Blake and us along with a transport team bored a med plane and flew to NYC. Once there we met with the team that was in care of Blake. Couple days into the stay he was taken off sadation. He had a couple suguries to fix his pyloric muscle in his stomach because he wasn’t able to keep anything down. He was slowly taken off the ventilator and did well breathing on his own. We were there for 3 months and friends come to visit. Blake’s weight at birth was 9.5, he went down to 7pds while waiting for a heart. It was touch and go while there but he is a fighter so everyday I got to see his beautiful smile. All the nurses fell in love with him, his nick name was justin beiber because how his hair was growing in. 3 long months we waited and one afternoon the wait was over. He is strong fighter at 3 yrs old and I wouldn’t have changed any of the hard times.
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