The Beginning Of Azer's Life

On October 6, 2003, Azer was born. I heard him cry, and I looked down, and I saw how beautiful he was. He was breathing fine, and he seemed to be feeding well. Breastfeeding wasn't coming very easy like I thought it would, but I was trying. They did the routine newborn screening which screens for a bunch of diseases including Cystic Fibrosis. Just a prick on the heel and that was it.

We went home the next evening. That night, all he did was cry. I was trying to feed him, but he seemed so hungry. We went to the store at 2 in the morning to get some bottles and formula. He drank the whole bottle very quickly and slept for 5 hours straight.

A few days later, he had his first doctor's appointment. The doctor tested his jaundice level and said it was a little high. He had lost weight too, but they weren't concerned because most newborns loose weight at first. The next day,  his jaundice levels went up some more and he still wasn't gaining weight. I felt so terrified. The doctor said to try giving him more bottle feedings and to concentrate the formula so it had more calories. All of his diapers were poopy. It seemed like everything he ate came out the other end in less than an hour. He would drink bottle after bottle and still seemed hungry. The doctor said she wanted to wait and see if he improved.

I received a phone call not long after, saying that the results from his newborn screening came back, and it was possible that he had Cystic Fibrosis. We went to get a sweat chloride test done to know for sure. They stimulated the sweat glands on his forearm with medicine and electrodes to collect sweat. The test came back positive, which meant that he had Cystic Fibrosis. Azer's pediatrician recommended going to the Children's Hospital to see a Pulmonologist. When we went, the doctor told us what CF was and how it is treated. He also prescribed pancreatic enzymes to help him absorb fat and protein. The respiratory therapist taught me how to perform CPT or Chest Percussion Therapy. This is done by clapping vigorously on the chest to loosen the thick mucus.

In a matter of a week, he was absorbing his food much better, had gained weight, and he his jaundice levels had gone down. He was still not absorbing as well as he could, so the doctor prescribed a different brand of enzymes and made him take an anti-acid to help the enzymes work better. Anti-acids are given to CF patients sometimes because they have very acidic stomach acid which causes the enzymes to become activated too soon.
Azer started to do much better, but it was a struggle for him to gain weight normally. It still is, but its getting easier since he is getting older. Everyday Azer does breathing treatments. Usually the treatments take up almost 2 hours everyday. When he is sick, we have to do more treatments to keep his lungs clear. He has to take about 15 pills everyday, some just to digest a meal. We are grateful for these treatments and medications, but they are not a cure. Despite all the medications he has to take, he still gets sick, and none of these medications makes CF go away. Azer has a bright future, but we still all pray for the day that CF will stand for "Cure Found" and Cystic Fibrosis will not claim any more lives.


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