Before I start, Gracie is fine, in fact other than the infection she is doing quite well. They did try to wean her high flow down to 2 1/2 liters, but she couldn't maintain her sats and eventually went back up to 6 liters of high flow. Grace also had more growth on her blood cultures drawn two days ago, its a different infection than what grew out the other day, but because of the craziness of the PICU I was unable to find out if this infection is treated with the antibiotics she is currently on or if she needs a different one.
As for the roughness of the day---around 4pm it was announced to our nurse that she would be getting a new admit, a newborn baby with HLHS. Supposedly this baby was going to be there at 4pm but didn't arrive until 5pm because of complications. Now it isn't my place to share what was going on and it wasn't like I was trying to ease drop on what was going on, but really there was no way of not knowing. Basically this baby was coding and we were left in our little corner with no where to go and frankly I didn't feel like I could because Grace would have been left alone and I don't know if she wouldn't have gotten lost in the commotion.
Anyways all I could do was sit there and feel like crying for what this poor baby and her family were going through. I watched Gracie sleep and was so grateful for her and where she is but still couldn't help but feel frustrated. I really feel so lost right now, I yearn for faith and the ability to trust Heavenly Father, but it is so hard. I feel if I don't have enough faith, trust, and hope I'm not giving Grace what is needed to receive all the power and strength that comes from our Father in Heaven and His Son. But at the same time, how can I not feel lost and betrayed to see so many babies and children suffer more in their little lives than the majority of adults will ever experience and even lose their fight.
I have always had an awful fear and anxiety about death and dying, I literally have anxiety attacks regularly because of it. But to see these little ones lose their fight even before they know what is going on depresses me so. Now I know that life doesn't end with death, that these little ones are pure and perfect, that loved ones will see them again, but how does one stop from losing their faith and from becoming cynical when they are surrounded by so much sorrow and heartache?
Basically we need to get Gracie home so I can focus on her and not her illness or the illness of so many other precious little ones.