One face in 30,000 with CF

One face in 30,000 with CF
One of the many faces of Cystic Fibrosis

Monday, May 23, 2011

Long Break

 I know I am not blogging a whole lot, I have been busy ending my school year. It has also been busy with Zoey. Her blood oxygen went from 96 to 90 so we have been watching her close. Here are some pictures on the day of the CF walk hanging with my mom. And pictures of her new swing set that she just loves and would live in our back yard if she could. I hope everyone is doing well.

Tuesday, May 3, 2011

31 days of Cystic Fibrosis: Day 3:FIRST BOUT OF ILLNESS/FIRST ADMISSION/ADMISSIONS TUNE UPS/Admissions What happens Life in Quarantine!

Zoey had 3 hospital stays in 2010.

The first one was in January. She had been really sick with the flu and she got so dehydrated she had to go in for fluids. This hospital stay was not at the Children's hospital, it was in the hospital in our small town. I will NEVER do that again. This hospital staff did not know how to deal with her CF #1. They poked her 7 times to get an IV in her. It was horrible. This was just an over night stay.

Her first official clean out was in the end of February beginning of March. Zoey was in daycare and she was sick all of the time. She was getting cold after cold after cold. Finally one day she just started coughing stuff up and the doctor said ok it is time for a clean out bring her in. At this point she also had C Diff so we were stuck in the room. It was hard and but this visit did not seem to phase Zoey, she had fun playing with her toys that the child life specialist brought for her. The visit was harder on me I think. No one wants to see their baby with a picc line. Zoey also had her feeding tube put in. I had to lay her on the operating table and look at the fear in her eyes until she fell asleep. That was by far the hardest thing I have had to do to date. I just wanted to scoop her up and comfort her and "break out" of the hospital.

The third visit was in December right before Christmas. That was a little bit harder. I do not even remember why they brought her in for a clean out this time around. This time Zoey knew what was going on a little bit more. She did not want to be there, I think we watched Tinkerbell about 400 times. This time around Zoey had a simple cold and so again we were quarantined in that room. I know she does not understand the concept of Christmas but I knew. I missed our Christmas tree and making cookies with Zoey for the neighbors. One day in the room Zoey put her coat on and said go. I wanted to go too! There were no surgeries or anything. And....Zoey did so good they let us go a couple of days early so we were home for Christmas.

Hospital over Christmas

 First Hospital Stay
 First clean out second hospital stay

Monday, May 2, 2011

31 Days of Cystic Fibrosis: Day 2: The first year

The first year was a hard one.

Zoey was hospitalized twice. The first time was just for one night so she could get fluids. She got sick and and would not eat or drink anything. She was 10 months old. The second time was when she was 11 months old and we went in for two weeks for a clean out and to have a feeding tube put in.

The first year was really hard on all of us. We did not know what to call the clinic about and what was normal and not normal. On top of learning the feeding tube and the breathing treatments and all of the meds, I was also dealing with my MS that was out of control.

We got through it and we were hoping year two would be better. It is in the sense we are dealing with everything better. However Zoey was put in the hospital again and my MS is still an issue but we get through it. And I will say it again, Zoey is my miracle and I will do whatever I can to keep her healthy.

31 Days of Cystic Fibrosis: Day 1: Diagnosis

So May is officially CF awareness month. I will be posting something every day or at least something for all 31 days of the month on CF issues.

Zoey's diagnosis was a huge shock to me and my husband. I was a first time mom, getting married, had my dream job, everything was coming together for me and all of my dreams were coming true. My biggest dream in life was to be a mom. 

Zoey was due to be born on April 24th 2009, however she had other plans, my water broke on March 24th and early that morning my baby girl was born. I got to hold her for what seemed like a second then they took her away from me to put her on oxygen she was having a hard time breathing. I guess that should have been a clue that something was very wrong with our munchkin but the doctor was not worried. We live at a really high altitude and he said a lot of babies have a hard time breathing at first. And... she was little but for being five weeks early not really that small. She was 5 pounds 12 ounces and 18 1/2 inches long. 

Zoey lost a lot of weight in the hospital, more than a normal newborn. By the time we were sent home she weighed 5 pounds 3 ounces, I was having breastfeeding issues though. When I started pumping and supplementing with formula the weight came back slowly but surely.

The next thing we noticed was that everything went straight through her and she threw up all of the time. I knew once we fed her to expect a very wet poopy diaper. Me being a new mom I did not think anything of it though. The other thing was really bad gas. My poor baby had the worst belly aches and grown up farts to accompany it. The doctor switched her formula twice, once to lactose free, then to soy. The soy milk seemed to help a little bit and we were excited thinking she was getting better.

At Zoey's 2 week appointment Dr. N asked me if CF ran in my family. I said no and not in my husbands family either. He said ok, the newborn screening came back positive for CF but she needed to have her blood drawn again that day and re done witch is normal. He said sometimes it is positive at first but then turns out negative two weeks later. I did not worry about it because I had never heard of anything like that in my family before. this point I was battling pretty severe post partum depression and so I was worrying about me and not Zoey so much, I trusted what our doctor said and it would come back negative the second time around.

Life went on, Zoey was gaining weight, slowly but she was gaining. My depression got much better and I got a handle on the whole mothering thing. Zoey still vomited a lot and had bad stinky gas and diapers but it did not seem as bad as before. 

On April 24th, exactly one month after she was born, my actual due date I got a call that would change my life forever. I got a call that morning from the doctors office. They wanted me to bring Zoey in at 11 so they could weigh her and check her oxygen level. At that point I knew but I told myself he was calling us to the office to tell us the test was negative. But.....I made my husband leave work to go with me.

 We went to the doctor. Dr. N walked in and said the CF test came back positive again. He got the results back again and it was positive for Cystic Fibrosis. He said he got the results back the week before but wanted to be 100% sure before telling me. The thing is....Dr. N diagnosed my MS, he did not want to give me more bad news. He had them check to see if my husband and I were both carriers of the CF gene, we were. At this point I said wait a minute, so is it a possibility she has CF and she needs more testing or does she have CF. He said Zoey has CF. At that point I felt like I was drowning. I sobbed, I could not stop crying and I could not concentrate on what he was saying to us. The only thing I did hear was that if Zoey picked her parents she for sure picked me because of my experience with MS I could help her through this diagnosis and I would do all the research I could to help her, like I did for myself. This was a Friday, we went to the CF clinic on Monday.

Zoey is now two years old. I still feel like I am under water but we are dealing with everything as it comes. Zoey is my miracle and I am thankful for her everyday.

Zoey was smaller than her doll when she was born.