Chloe's journey

Its been a while It's been a while since I have posted. The truth is, nothing has really changed. As you know, surgery was cancelled and we don't have a date anymore. Our hospital is just way over packed. As upset as we are, the positive thing is at least Chloe is stable enough to wait and she will only be bigger and stronger when surgery does happen. Since I have nothing else to say, here's Chloe being cute!

What is Chloe's heart condition?  What exactly is wrong with Chloe's heart? 4 things actually. Her heart condition is called Tetrology of Fallot with Pulmonary Atresia.     We had no idea about her having a heart problem until she was born. The pregnancy was very healthy but when she was born, she was very very blue. Instead of getting immediate skin to skin like the hospital promised, my baby was taken away to the little bed in the same room. More and more nurses and doctors rushed in to try to help her. I kept asking if she was ok and nobody answered me. Finally a nurse said, "were just trying to pink her up a bit." Later, my mom told me that she was looking at Chloe's oxygen saturations and they were so low and not picking up at all. Chloe was then rushed to the NICU and I was left with no answers. I wasn't even sure if she was going to survive. Hours later Kody and I were finally able to see her. I couldn't even see her really though, there were so

Surgery Cancelled Well, bad news. Today Chloe and I got to Post Op and we received some news. Her surgery has been cancelled. The worst part is we were told this after she got labs and testing done. Her surgery was cancelled because of a big emergency case. I am trying to be positive because at least Chloe is stable enough that its ok and I am grateful that she wasn't the big emergency case. Still, this is upsetting because this is the 4th time her surgery has been cancelled. Kody already called of work and we got everything all prepared. I should be getting a call tomorrow with a new date. I am also worried that she will get sick again as it is cold and flu season, and that will delay her surgery even further. I appreciate all the prayers and please keep praying because she should be having her surgery soon still. Her surgeon told me today that she is a priority and that he wants her to have her surgery sooner rather than later so that is good. Im praying that she can be repaire

Feeding Chloe  As you know, Chloe is primarily tube-fed. We do feed her by mouth after her hours off the tube, so twice a day for now . Chloe's goal set by her feeding therapist is currently for her to eat 15 MLs of baby food and 5 MLs of milk per feeding session. She enjoys baby food more than the milk. Actually she does not understand that she has to suck the bottle, instead she bites it or just plays with it. The way things are, I am not totally confident that she will ever take a bottle enough to get off the tube feeds any time soon. As long as she is at least progressing further with the baby food we are happy because by the time she is able to eat enough by mouth to sustain herself and not need the tube, she will probably be too old for a bottle anyways. Today, Chloe really surprised us! Not only did she meet her goal for the baby food, she ate way more than she ever ate. She actually ate an entire jar of baby food!! Yay Chloe!! I think the reason she ate so much this ti