Cystic Fibrosis

5/12/10 The day was a very exciting day but by 4:30 p.m. everything changed. We were notified that tests confirmed Olivia has cystic fibrosis. This was immediately thought by surgeons due to the blockage in her intestines but wasn't confirmed until now. We really had just put it in the back of our minds thinking this wouldn't be the case. I am somewhat familiar with the disease, I have a younger cousin with Cystic Fibrosis so it was of great help and comfort to me to talk to my Aunt the evening I was given the news. If I hadn't done so I don't believe anything doctors could have told me the next few days would have been absorbed because I would have been far too overwhelmed. The past 2 days I have met with "the team" who will be taking care of Olivia, talking to pulmonologists, dieticians, respiratory therapists, etc. I am confident I can do this and Olivia will be just fine. A friend told me this quote and it got me through my first night after the news, "God only gives the mama's He trusts the most, His most delicate babies."

I think some people are mistaken about what Cystic Fibrosis (CF) is and much of what you find on the internet is not the most accurate and up to date so the best site to reference is www.cff.org to get the best info.

Cystic fibrosis is a life-shortening, inherited disorder that affects the way in which salt and water move into and out of the body's cells. The most important effects of this problem are in the lungs and the digestive system, especially the pancreas, where thick mucus blocks the small tubes and ducts. CF does not affect the brain and nervous system, it does not affect the kidneys, it does not directly affect the heart, the muscles, the blood and except the lungs, it does not interfere with the immune system. CF is inherited by receiving one abnormal CF gene from each parent, parents of a child with CF do not have CF and most often there is no history of it in the family.

We will have to learn to do a lot of things so all of that training we will get a Children's hospital like how to do breathing treatments, give her the enzymes she needs to digest food properly, pumping her chest to break up the mucus, etc. I know she is and will be getting the best treatment here and we are so lucky to be so close in distance to a great hospital like this.

5/13/10
Olivia had more lines taken out and I was able to give her a little sponge bath. She wasn't too certain about the bath but felt better afterward. She now only has her central line and by that evening she was moved to a crib, very exciting and a little less scary looking.

5/14/10
I didn't get to the hospital until about 1:30 p.m. because I decided to spend last night and this morning at home with Addison. It was nice being in my own bed and coloring and playing dolls with Addison this morning. She is very confused right now and told Daddy, "Mommy's not coming home, " so I knew it was time for me to spend time with her. This morning she woke up and came into our room, Scottie asked her why she had her flip flops and she said, "I don't know I woke up and my flip flops were in my hand." I hadn't laughed so hard in a long time. She loves these flip flops and was wearing them when we were reading our night time books and I forgot to get them off her. Oh it was so cute how she said it.

Olivia was started on food today but is having a little trouble so they did put a feeding tube in and she did take 4 feedings so now we just have to wait to see how her bowels are working. The nurses had done 2 feedings prior to me getting there and said they had a lot of trouble but after doing the next 2 with me they said she was certainly doing better with my help. I think she is progressing very fast and very well but we still have a long way to go.