The Diagnosis

My daughter Caroline Tucker was born 3 weeks early on December 6th, 2011  at 10:59 pm in Sioux City, Iowa. She was 5lbs and 19 inches. Even though she was small, she appeared to be a healthy baby girl. My husband and I couldn't have asked for more! We took our little angel home 3 days later. I remember it had been lightly snowing a few hours before we were released... I was excited to get our little baby home to complete our family.
The first couple nights home Caroline slept right through the night. Which, at the time, I thought was a blessing! The only time she would cry or fuss would be during bath time, or when she would wake up long enough to eat. I was a little concerned with how much my little angel was sleeping, but my mother assured me that newborns are like that sometimes. At her 1 week check up I voiced my concerns with Caroline's primary care-giver. He didn't think i had anything to worry about. Other than sleeping a lot she seemed perfectly fine. When we weighed her she hadn't gained any weight, which he was concerned about. Since I was breastfeeding he said it was probably because my milk hadn't fully come in yet and not to be too worried.  I brushed off my worries and continued to get the hang of motherhood and enjoy my little girl.

Around Christmas time I realized that I was having to change Caroline a lot; more than I ever had before. She would sometimes have up to 9 dirty diapers and only 2 or 3 wet diapers a day. I didn't think this was bad; just unlucky for me. By this time Caroline was 3 weeks old and still wearing preemie clothes. I read a lot of different articles about breastfeeding and had learned that breastfed babies are sometimes smaller than formula fed babies. I don't know if I was in denial or what, but even though I had a gut feeling that something was wrong I just brushed it off.
About 3 weeks later Caroline had contracted a cough. It was Thursday night when we had first noticed it, and she had a doctor appointment set up for the following Monday already. So I didn't pay too much attention to it. She didn't have a fever. I figured she just caught her sister's or her aunt's cold.

On Monday, January 16th my husband and I took Caroline to her doctor appointment. I remember on the drive there I was telling Mat how excited I was to see how much weight she had gained. When we got there she was weighed. Her weight came in at 4lbs 15oz. She had LOST weight. Not gained it. The nurse took her temperature and asked some questions about her little cough and said the doctor would be in shortly. A couple minutes passed and the doctor knocked on the door and came in. He had a packet of paper in one hand and sat down. He asked how I was and how Caroline was. I explained the cough and my worries of her weight loss. He looked at my husband and I and said he wasn't surprised with her cough, or her weight loss because he had gotten the results from her newborn screening back. My husband asked what he was talking about. The doctor looked at us and told us Caroline had Cystic Fibrosis. I asked what it was and if it was bad. He handed us the packet of paper and said it was from www.cff.org I don't remember much of what he said after that...
My husband and I had never heard of Cystic Fibrosis before that day. We were given a number to contact the pulmonology unit at the Children's Hospital in Omaha, Nebraska. We were lucky enough to get an appointment that Wednesday, the 18th. I remember the car ride home I was holding my husband's hand and reading the packet out loud:

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

• clogs the lungs and leads to life-threatening lung infections; and
• obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.

In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond."

I broke down. That day was the only day I've ever seen my husband cry. We were scared, confused, hurt... Just a couple hours ago we thought we had a healthy little baby girl and now we faced with the fact that our little girl had a life threatening genetic disorder. All we could think about was how long we would be able to keep this little angel in our lives... We couldn't wait for Wednesday to come so we could get more answers from a specialist.

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