Chloe

It is hard to believe that my champ will be six next month. I can’t believe how fast six years has come and gone.

I have always wanted a baby. We tried on our own for 3 1/2 years before we went through fertility treatment. It took us another 14 months before we found out I was pregnant. I was excited about having a little girl. I spent the next months of my pregnancy planning for her birth.

I was a little over 38 weeks when my water broke and after 20 hours of labor we had our baby girl. My husband spent the next 15 minutes trying to figure out a name for her. He had narrowed his list down to 3 choices: Zoë, Chloe, and Jenna. Thank goodness he decided to go with Chloe. Truth be told, I wasn’t crazy about the other names he was thinking about.

I quizzed the nurse with every question I could think of. I had the nurse show me how to change a diaper at least 4 times. I had my husband video tape everything so I wouldn’t forget. I am sure I was the brunt every joke that the nursing staff may of had. But, I didn’t care. I wanted to make sure that I was doing everything right by my little girl.

I was scared that I might make a mistake from bottling feeding to changing her diaper. I would bring my ear to her chest to make sure she was breathing. I swear I did not sleep for the first 6 months of her life. I had this intense redness under my eyes. My younger sister would often tell me to relax and get some sleep. Chloe never left my side as a baby. I would bring Chloe to the bathroom with me so she would not be alone. Yes, I was one of those first time moms that people like to poke fun at. Thinking back on it I must have had some type of instinct inside of me just wanting to make sure she was always okay. I questioned everything and left nothing to chance. Chloe was very colicky and had her days and nights switched. Chloe had acid reflux as a baby. Her doctor said it was normal but knowing what I know today it wasn’t. She had jaundice for first 3 weeks of her life. She started to get ear infections at 3 months. When she got sick her fevers would spiral out of control. Her doctor would make me feel as if I was being paranoid. The first time she was hospitalized for pneumonia she was 18 months.

Chloe has always had a mind of her own and is very strong willed. At 18 months she did not want to go into the tent for oxygen treatment. I spent the next few days holding her in my arms and holding the oxygen tube so she could breathe. I did not care that I wasn’t sleeping my daughter came first.

I made an appointment with Chloe’s pediatrician to talk to her about seeing a specialist and find out what was going on with her. I stuck to my guns and would not give up my argument for her to see a specialist. Anyways, I final won the dispute with her doctor and made an appointment for her right away. My sister went with us for Chloe’s first pulmonary appointment. Chloe was tested for CF and had an x-ray done. I remember the heart ache I felt when the doctor called us into a room down the hall. We were segregated from other patients. The doctor informed us that Chloe had right side stomach and she thought that Chloe may have something called Primary Ciliary Dyskinesia. If it wasn’t for my middle sister I would have fallen apart. My sister kept me grounded and asked questions for me. The doctor made sure to set us up with other doctors in various departments. She also scheduled a biopsy to be done of her lungs and stomach. She also made sure that Chloe was given an antibiotic when she developed a cold. This helped to prevent her from getting more infections.

When Chloe’s ciliary came back normal they ruled out PCD but I thought they were wrong because she kept getting sick. I spent the next 3 years trying to figure out what was going on with her. Chloe’s pulmonary doctor had left Children’s. Chloe in the mean time was shuffled and was seen by different doctors. It wasn’t until Chloe’s visit to the NIH in January that we final got some answers.

I have always been a fighter and I don’t give up easy. These pit-bull like qualities have helped me through out my life. So here I am today, looking for answers as to why, what, and how. I often refer to myself as a sponge, trying to soak up as much information as I can. Trying to make sense of all this. Most of all, I am doing my best to help spread the word.

My daughter will be six next month. Chloe is 4 in one million who lives with a multifaceted syndrome called Heterotaxy. Chloe is one of the different faces of Heterotaxy.