1st Bath

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.

Progress

On 5/10/10 we arrived at the hospital to find that they had changed how Olivia was positioned. X-rays were better so she is able to lay on her opposite side and her back now. They began weaning her off the pain med and we were told if the weaning went well the ventilator would come out. I was able to change her diaper and take her temp 2x and was so excited to do so although a little tough with all the wires. Later in the day they did up the pain meds and were unable to take the vent out. She was very alert so we were able to see each other a lot that day. It's just tough knowing she's in pain and trying to cry but you can't hear cries because of all the tubes.

5/11/10-They continued to lower the pain med dosage but she is still breathing too rapidly due to the pain in her stomach so they would rather wait another day to take the vent out. They like to see her breaths per minute between 40 and 60 and she is currently upper 80's.

5/12/10-I came in to the hospital just as they had taken the ventilator off and drainage tube at 8:30 a.m. They did put oxygen back on but took that off after noon. At about 9:15 a.m. they shut off her pain med and will just give as needed now. By 9:20 a.m. I was able to hear her cry, the first time since being here. At 1:00 p.m. I was able to hold her and did for nearly 2 hours! It was wonderful. She's already liking the pacifier, but her fingers best and her lungs are working well as she had a few good cries. Last night was the first night I spent alone at the Rainbow House and today the first full day but it was so exciting that it hasn't bothered me much. I'm really not sure how Scottie did this alone, while I was in the hospital. I just keep thinking we are very lucky. I look around at other babies and their families, so small, multiple surgeries, and those babies that are just alone, no one to touch or talk to them. It's very sad. I just can't even imagine.

Writing on the blog will be a great help to me and kind of a way to journal. Many are wondering how I can be doing this after all that has happened but in all reality it just helps to write it out somewhere and it's a great way to keep people informed without being flooded by phone calls since we can't take them in the NICU. More updates and pics soon!

Holding Olivia!

Olivia's 1st Days

On Mother's Day I was released from the hospital and made it to Children's that afternoon to see Miss Olivia and touch her for the first time!

Addison is very happy to be "big sister". I was told that she was telling the nurses at Bryan to "move, that's my sister," while she was able to get a quick glance before Olivia was transported to Omaha, very protective already.

I wasn't even certain how to hold Olivia and this is what they showed me as best. She especially likes it when I hold her arms to her chest. She certainly knows my voice and touch and Daddy's too!

Olivia Renae's Birth

As many of you know, Olivia Renae was born 5/7/10 at 2:26 p.m. 5#9oz. I went in to see the doctor yesterday morning after having some pains, thinking just Braxton Hicks, throughout the week. Once the ultrasound was done they were concerned with the amount of fluids they were seeing and distended bowels so a specialist was called in and I was sent to labor and delivery, by 1:00 p.m. they determined an immediate c-section needed to be done to get the baby out right away. By 2:26 Olivia was born, however, her belly was very enlarged due an obstruction in her bowels and was transported by the life support van to Children's Hospital in Omaha for immediate surgery to correct this. While mid-way through the operation there was concern that too much of the intestine would have to be removed and she would have to have a colostomy bag for some time and additional surgeries this had proven not to be the case once the surgery was finished. There was enough good intestine and damage was repaired in other areas that she is stable and doing well. There is some concern she may have cistic fibrosis but tests to confirm this won't be back for one week. This is all the info we have for now. Olivia is a fighter and we've been told this by many so we're certain she will recover quickly. It is expected she will be at Children's more than a month. We certainly appreciate all your prayers and well wishes. Thank you greatly.

Horse Racin'