take one step forward and 10 back

Gather the troops its time for some serious praying...

Brody may be getting sick. They have taken some cultures from his vent tube and will know something within 48 hours. His x ray did not look good today so no vent changes were made. There is a new doctor on the case and she had no clue what I was talking about when I asked what the group decided as far a pressure support yesterday. Disappointed and aggravated would be putting it lightly. My response to all of this was the ventilator is doing more harm than good. I fell 100% about that. The tube has been down so long that germs form and colonize. He is on such little support, I just wish we had a doctor that would take a chance and challenge him. This doctor now wants to go all the way to 0 on pressure support then wean the peep. Pressure support wouldn't be gone until next week if we are lucky. I just don't understand how they can think that having a 4 month old baby on the vent is okay. I think a lot of careless judgements have been made and too many careless errors to count. I stressed the importance of seeing an end to the vent and the end coming sooner rather than later. I'm so over it. I just want to transfer him out of there so bad. This is a prime example of how rotating doctors screws everything up.
On a better note, ECI came out to enroll Gracie in their program. The therapist will be out in two weeks to start working with her.

Krista

"Call to Me, and I will answer you, and show you great and mighty things" Jeremiah 33:3

Its already Wednesday! I thought I just updated everyone yesterday... anyway, great news on Brody's eyes. His eyes are doing so great that he will not need another eye exam for 3 MONTHS! That is HUGE! The doctor said he did not need glasses right now. I wish I could explain to everyone how scared I was about his eyes. I've begged God for a lot these past almost 17 weeks. I've begged God to please not take Brody from us just days old, again several times with his lungs, I've begged God to let me give birth to Gracie alive, let me raise her, get her past deadly intestinal infection and Brody to be able to see. God has blessed me so much by allowing all of these request. It is so amazing y'all. Ask and you shall receive has never been more true.
I'm currently very hopeful that Gracie's vocal cords will heal and she will be vocal. She was once vocal but they damaged it the last time she was intubaited. It is hard for her to cry and me not be able to hear the different types of cries to see what is wrong. Is she crying because she is hungry, tummy hurts, just mad, etc. I'm still adjusting to caring for her and learning how to give her the best care. I'm looking forward to finding out more about the cords.
Madilynn is doing good. Her belly button is sticking out really far. Remember, she has the hernia from birth. The Pedi said it will get worse before it is better. The good news is it does not hurt her. I just worry about it because it really sticks way out. Her reflux has good days and bad. You never know what your going to get. She has recently discovered her tongue. She likes to stick it out and make different shapes with her mouth. She has a lot of head control and it seems to get better daily. She still sleeps all day. I think I'm going to call it hibernating :o)
I'm having a baby shower next Sunday. I'm really excited about it. I've started trying to fill out their baby books but their entrance into this world does not "fit" the book. I just do the best I can but this blog will be their book. I think it is more detailed than any book could ever be.
Christmas is 6 weeks away. I'm not counting down because I'm ready to decorate but because I'm ready to have my boy home. Then life will be a different type of crazy.
Everyone sleep an extra 30 minutes for me.

Krista