Chloe's journey

Chloe's recovery journey Chloe is making me so proud with how well she is recovering from this monster surgery. I bet shes doing better than I would ha ha. I just want to document her progress so one day when shes older and about to go through another surgery, I can show her this blog and she will know that even from the start, she was a strong little lady! I will never have the words to explain all of the emotions we are going through as a family on this heart journey.  Its scary, amazing, strong, emotional, and more.   Day 1: Chloe was able to be exubated right after surgery. She was awake but drifting off a lot. Very sedated from narcotics and the anesthesia still in her system. She was not fed at all today as eating too soon can cause problems. She would probably try to throw up which can be dangerous with her being on the vent and so sedated. I don't think she knows who we are or whats going on at all. The important thing is she successfully made it through open heart

Before an after Tetrology of Fallot repair ****warning graphic images!!*** Just a warning, I am posting graphic images in this post because I want to share what the truth of what this looks like. Also, I am saving this just in case I lose these images-at least it will be saved here too! I will be posting Chloe's actual heart before and after as well as pictures of her. Chloe before and after: Before her repair, she had a BT shunt and stents so her normal oxygen saturation's were 75-85. If she was crying her sats would drop to the 50s. This is why she wasn't allowed to cry! She was always dusky but turned very very blue when her sats were in the 50s. Now her normal oxygen saturation's are 95-100. That's the same as you and I! Her sats when shes been crying hard for over 10 minutes barely even reach 88. That would happen to you and I if we cried very hard for an extended period of time too. Its amazing isn't it? Now she will have much more energy, be happ

Open Heart Surgery   Chloe finally had her open heart surgery to repair tetrology of fallot. She did amazing and probably will not need another heart surgery for many many years! She will still need yearly cardiology checkups with echos and will need valve replacements through her life but the main, big monster surgery is finally out of the way. She is the strongest little baby I know- stronger than me in many ways. I hope she is proud of her scars because it shows the battles she fought and won all before she even turned one.    For some reason I actually was not nervous about her going through this. I had a sense of calm the entire time. It might have been God because she had and still has so many people praying for her. I just feel like there is a reason shes here. Shes going to make an impact on this world.   After surgery, her surgeon, Dr.Langley, talked to us. Chloe's grandma Loretta and great-grandma Tammy were with me. Dr.Langley explained how surgery went and the futur

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