It is hard to believe that my little Evelyn Rose is already one month old! She turned one month old in the hospital, not exactly the place I would have chosen to spend it :). Because of everything she has been going through they had been checking her every week. We went in for a weight check at the pediatricians office. During the visit they became very concerned because she wasn't breathing well and her weight was barely up an ounce in two weeks. They called the Cardiologist who wanted to see us immediately. We went over and after a quick check were told that she needed to be admitted to the hospital. Her heart failure was increasing, even with the medicine, and she was considered failing to thrive. She was started on new meds and they increased the ones she was on and put in a feeding tube. We stayed from Thursday to Sunday and were finally allowed to leave. It was miserable to see her put through all that, but I know it was needed. She had to come home with the feeding tube and has already pulled it out twice! Luckily, or unluckily depending on how you look at it, they made me learn how to put it in so I could put it back in should she pull it out. I have now successfully put it in 3 times! I NEVER though I could do something like that to my own child! While in the hospital we met with the surgeon. He told us that her hole is so large, it takes up almost the entirety of the wall between the ventricles. It also goes to one side, the side that contains the electrical components of her heart and in order to fix it there is a 5x greater chance that she will need a pace maker for the rest of her life. Then he told us that in his life he had never seen this type of defect in a child that was not downs syndrome. That was a lot for me to take in. She didn't look different to me. It isn't that I would love her any different, but I just don't want anything else to be wrong. So they set up an appointment with a geneticist. Luckily I met with her and she said she is 99.9% sure that she is not downs or mosaic downs of any sort. But she did say that there is a big chance that she has some other problems either neurologically or in her kidneys or somewhere else. So they have ordered several more tests, but they will take place when she goes in for surgery to hopefully help with all the co pays that we are having to pay. They will do chromosomal tests and they will also take a skin biopsy at surgery. It will take weeks to get all the results back, but until then I will just focus on her trying to get big enough for open heart surgery and then recovering from it. The surgery will be at the end of April. I will get a specific date soon. It is crazy to think of all the things this poor little girl has had to endure during her first month of life. I can't imagine struggling for every breath I took and starving but being unable to eat because of how tiring it was. But Evelyn is a fighter and she will be OK. She brings me so much joy, she is such a loving baby and she is worth anything and everything we have to go through to get her healthy!
She is so alert already! And look, her hair has a reddish tint to it!!
