Friday, September 17, 2010

Good/Bad Post

When I went and saw my beautiful baby girl tonight she drank her whole bottle in the allotted time of 30 minutes and was an absolutely beautiful sight! I talked with her neonatologist who upped her bottle feedings to 2 times a day *yay* I asked him about her abilities... he said that she functions very well for a baby- however, she may have to go home on a feeding or g tube if she doesn't do very well as we up her bottle feeds. He also told me that until all the fluid leaves her head we will not know how much of her brain didn't form. The neuro radiologist who saw her first mri's said that part of her brain did not form. We have known this for quite a while.. but to have it said again is something else. We do not care what her ability(ies) or disability(ies) is/are she is our daughter and we love her. If any of our family or any of our friends say anything negative about my daughter- I will cut them from my life FOR GOOD. I will not even attend their funeral. If I hear someone use the words retard, retarded, water head, big head or any other derogatory remark they will be cut. They will cease to exist in my world. I always wanted to have a child with down syndrome. I know a LOT about down syndrome- I have had to learn about hydrocephalus. So, now I am getting to know this thing that caused my daughter's brain not to form all the way. I HATE it!!!! I hate that her brain did not form!!! I LOVE my daughter but I am angry about her brain not forming because of the stupid fluid.


  1. I'm praying for you Christy and also for Cami. She is the most precious little girl I have ever seen! I don't have to tell you that you've been so blessed by her, you already know what a gift you have been given.:) You are a wonderful mother and you have a beautiful heart!
    Sending love to you,

  2. (((Christy)))) I wish I were closer so I could hang out with you and Cami for the day :) So happy to hear they are increasing her feedings. What are her "goals" that she has to meet in order to go home (how many bottles, weight..)? I'll be praying it is soon, so she can be home and get snuggled by that big brother of hers and sleep by her mom & dad:)
    She is just so precious!!!

  3. Christy,
    Cami is a very lucky girl to have a mom & dad that loves her so much. Hydrocephalus is scarey but all will be ok. Cami is a beautiful little girl and you are going to enjoy her and Cody and watch them grow and play and become each others best buddy.Once you can get her home things will seem better just for the mear fact that you are all 4 together at last.. The Drs dont know everything dont let them get you
    down. Hang in there.Cami looks great in her new pictures. So glad she is taking 2 bottle now. Cant believe that she is already 1 month old.Wish I was closer to give u a hug and see that precious baby.
    Take care of yourself and that lovely family of yours.
    Carol N