The Plan

We met with Kali's doctors on Friday to discuss the plan for her care. It sucks that such a beautiful little girl has so much wrong and that she needs so many people to help her.But we are lucky that they are willing to do what they can to get her home where she belongs.
So first step in the plan is taking place tomorrow at some point. She is going to have another operation, this time to take a biopsy of her liver to see if they can find out why it's not functioning properly. They are hopeful that they will find a treatable answer. If it is not treatable they will make a plan to get her home to be with us for as long as she has. If it is treatable then we move on to the next step.
I am pretty sure, but not certain, that no matter what happens with the biopsy results she will be getting a shunt to drain the fluid from the hydrocephalus. That would happen in a few weeks after she has time to recover from the biopsy. Also they will be checking her airway to see why she struggles to breathe without the vent. Her lungs are good but her airway is either floppy from the fistula she had or is swollen and irritated from having the breathing tube down for her whole life.
She may end up with a trach, which is basically a hole in her neck that goes to her trachea and allows her to breathe that way. She may or may not need to come home on a ventilator, although that is unlikely since she is basically breathing on her own currently.
So if all goes well with the above she will be having heart surgery when she hits about 8 1/2 pounds. Then she will recover and come home. They are unsure of how she will function. She may never walk or talk and may never know who we are. The bleed damaged a lot of her brain. But all of that is so unknown and she has so much life and fight in her that we couldn't give up.
We know in our hearts we are doing what is best for our girl. It may not seem like that to others but that's fine. God forbid anyone faces the choices that we are facing. You'll never know how it feels unless you've been in our shoes you can't pass judgement. I would never want anyone or another baby to go through this.
She has an extremely long road ahead of her but she is a fighter and I hope she gets to prove herself! All of this seems so bad but when we sit at her bedside or hold her we just see our baby. She looks and acts so much like our other two did as newborns. I can assure all of you that she is no way suffering. She is content and calm, unless she is hungry or has a messy diaper.
So keep Kali in your prayers. We won't have complete results for a while but they will be able to tell us something soon.