So the jaundice has turned up the heat. For some reason Kali's levels keep on climbing. For about a week, I guess, she was on the right track with her liver. All the blood work showing her liver function was going down (which is good) and her color was getting better. But rather quickly things changed. They started a new medicine which should hopefully control the problem and if it doesn't work they will repeat the test they did a couple weeks ago to see if this time they can get an answer. So like everything else we just wait and see, and pray that this is not a worst case scenario that seems to plague our little girl.
We also received some not so promising news about her brain. The bleeding that had occurred has caused cysts to form where brain tissue once was. The prognosis is "guarded" as they like to say but is basically unknown at this point. Worst case scenario for this- she may never walk or talk and may need a feeding tube for life. Best case scenario- possibly a little developmentally delayed. Either way she'll never be "normal" (which, once again, fits her into our family perfectly!).
All of the different doctors involved with her will be meeting together and then with Mike and I to discuss the "big picture". They want everyone on the same page and then want to see what further steps we want to take in Kali's care. As far as Mike and I are concerned we will continue doing what we had planned originally. Kali is not suffering at all. She isn't in pain, she is growing, she is alert, and she is doing what babies do.
It is hard to explain what goes into making our choices for our child but we shouldn't have to. We feel in our hearts and souls that we are doing what is right. No one can predict what the future holds for our child and we will not rob her of the chance to have a great life surrounded by a family who loves her so much. I refuse to give up hope that this baby will one day come home with us to complete our family. And anyone who tries to take that hope away can leave their opinion at the door because it doesn't matter.
We will never stop fighting for our girl and we won't give up on her.
Tracey - I know it is very hard watching your little girl go through all of this. Just know that as part of this family - we will support you and do whatever we can to make sure Kali is happy and well taken care of. I personally (having gone through this) think you and Mike are very strong and will do whatever it takes to give Kali everything she needs. Please call anytime you want to talk or need someone to listen. We love you very much and continue praying everyday for Kali (and all of you).
ReplyDeleteAunt Michelle
tracey,
ReplyDeleteour family has all of you in our prayers. the strength you and mike need cannot be measured. just continue to make the decisions that you feel are the best for kali, and you should have no regrets. knowing you have a very large support system will hopefully make it easier to make those decisions. not knowing what the outcome may be is tough, but just remember, with all the love and support you guys have, any result that brings her home is all that matters. she is just too strong and beautiful. always in our prayers.
karen d.
Tracey,
ReplyDeleteYou, Mike, Marissa, Darrin, and sweet Kali have been in my prayers daily. Reading your blogs about Kali and all the decisions you and Mike make daily regarding her care is truly inspiring. Words cannot express my awe for you and Mike. You are so strong and such a wonderful loving mother. Keep up the strength and I know in my heart you will continue to make the right choices. I love you!
Katie
You are doing everything right. <3
ReplyDeleteI continue to keep you all in my prayers.