Most of you have heard this before, and Lord knows I've told so many people that the words just tumble out like a rehearsed scene. But because we are trying to raise money for the CF Foundation and are trying to educate people on this disease, I thought I would first start by sharing when CF became a major part of our lives.
Emberlynn was born beautiful and healthy, weighing in at 7 lbs, 2 ounces and measuring 18 1/2 inches long. She was perfect in mine and Matt's eyes. She was our first baby, our precious little girl, and she instantly brought joy to our lives.
At her two-week check-up, she was still a mere 6 1/2 lbs. All babies lose weight when they are born but are expected to regain the weight and reach their birth weight again by 2 weeks. Emberlynn was breastfed, and the pediatrician explained that sometimes breastfed babies took longer than others to regain the weight. The following week when we revisited the pediatrician for a weight check, Emberlynn did not fare much better.
Every week for several weeks, we had to have weight checks at the doctor's office. Emberlynn's weight slowly crept up, but merely a couple of ounces at a time. The pediatrician suggested it was possible my breast milk did not have enough calories, so we began supplementing. Emberlynn put on weight somewhat faster, but it was still a very slow process. She finally reached her birth weight by 9 weeks. She was tiny and had 'chicken legs.'
Over the next couple of months, her weight still just barely increased. At one point, I had mentioned to the pediatrician that I had a cousin who had Cystic Fibrosis, and I knew that poor weight gain (failure to thrive), was a sympton. Since Emberlynn did not appear to have any other symptoms (i.e. respiratory problems), she said it was unlikely that CF was the cause.
In late June, the pediatrician finally decided to send Emberlynn to be tested for CF at Vanderbilt. The appointment was made for late July, and I was somewhat nervous but told myself it would be fine. The pediatrician was optimistic, so I felt like I should be, too.
On July 24th, Emberlynn had a 'sweat test,' which measures the level of salt in the sweat. High levels of salt indicate CF (people with CF lose more salt through their sweat glands than the average person). The results were back that day, and they were worrisome. They tested her again the following day, July 25th (they do a second if the first is abnormal), and the results were the same. When the pulmonary doctor at Vanderbilt walked in the exam room with a solemn look, I broke down. I knew a lot about CF because my cousin had it (she passed away from it a few years ago), and I was devastated to hear my own child had this life-threatening disease. I remember the doctor saying, 'Yes, she has CF. Yes, it is distressing. But all the hopes and dreams you have for her will still happen.' I carry his words with me and try to think about them when I am hit with the reality of my children's conditions.
Fast-forward just over two years later, and Emberlynn is a happy, well-adjusted, loving, and thriving two-and-a-half-year-old little girl. A lot has happened since she was diagnosed, some good, some ugly, but she is doing well despite the disease, and it is all we can ask for.
I will continue to post more about our struggles and our triumphs with this disease with both children. I will post Cohen's story about how he was diagnosed and how we were a bit more prepared since we knew it was a possibility. I want everyone to know and understand how CF affects peoples' lives and be more open and willing to donate to this cause.
