Concerned? Very. Convinced? Not yet.

Little Ellie has been suffering from a cough and congestion for over three weeks now. It doesn’t seem to be worsening but it has kept her up the last couple of nights so Seth and I decided it was time to take her to the pediatrician just to be sure she was okay. With six kids I often find myself not worrying enough and assuming it will pass, but this time felt like we should take her in for peace of mind. I would have bet anything they were going to tell me she was fine and that the cold would work its way out of her system soon enough. Boy was I in for a surprise.

I mentioned to the nurses that Ellie seemed very small in size (weight). They decided to weigh her and she was 9 lbs. 11 oz. That concerned the doctor. He wanted to weigh her again with her clothes off. When he did she was 9 lbs 2 oz. At her two month appointment she was 9 lbs 5 oz which means she went down three ounces in 2 months…not good. She eats great, sleeps great and is a fairly happy baby so I hadn’t really worried much. The doctor initially tested her for RSV. The test came back negative. Her oxygen stats were at 90. Anything below 90 is a concern. So that part was okay, although a little concerning. Then he started asking me about any history we have of cystic fibrosis.

My heart immediately dropped and I could feel tears filling my eyes. I was trying to listen but honestly everything after those two words are a blur. The next thing I remember is him telling me he was very concerned and that he wanted Ellie to go to Primary Children’s Hospital first thing in the morning. She is going to get several blood tests taken, a chest x-ray and a sweat test. I think they have since added a few other tests to the list as well. The doctor did tell me that nothing was certain until the blood tests came back positive, but I am really scared. There is nothing as horrible as fearing for your children and their quality of life.

Cystic fibrosis is a genetic disorder and as far as I know we have nobody in Seth’s family nor my family with it. A defective gene would have to come from both Seth and I. Symptoms include lack of weight gain, persistent mucous/cough, bowel issues, salty skin and a few others. She has some symptoms but not all. All of my babies have been small, really small until they get past 6 months. The alarming part is that she has lost weight since her two month visit. I am justifying it by saying she sleeps a lot and probably isn’t eating as much as she might otherwise, but I am not sure it is true. She gets about 30+ oz of formula every day and babies only need 18 oz. to thrive. The doctor doesn’t believe that is the problem.

He was very serious, more so than I have ever seen a doctor be when talking to me. It is a horrible feeling. So am I worried? Yes, I am worried. How could I not be? She is my dear sweet baby. Do I think she has cystic fibrosis? Well, no. I don’t want to believe she could have it. It doesn’t make sense to me that she would have it, but he seemed so concerned that it seems something must be wrong. I will know more tomorrow after her tests. By Friday I should know for sure. I will try to have faith that she will be alright until then. In the meantime please keep Ellie in your prayers.