The Silent Cry - 2

He was here. My wonderful little boy. I had finally met James Daniel. I can't find a way to properly put in to words the feeling that comes over you when you give birth to this wonderful little person, to see him look up at me in the few minutes that I got to hold him before they took him away. Over the next 8 days I would spend a lot of time in the hospital. More than I had ever spent in a hospital at that time. I got to stay in the hospital with him for two days. Because he was born so late at night I got to spend that night and the next before they made me leave.
He was born 4 weeks early and was having a really hard time breathing and eating at the same time. Most babies get the hang of eating right away and even though they may start off drinking just a little milk they soon start drinking what seems to be their weight in milk. Jamie was also having a hard time breathing. He was doing something called retractions. "Retractions refer to the visible sinking in of the chest wall with inspiration in a child with respiratory difficulty." Basically it means that when he took a breath his chest didn't expand and contract like it was supposed to but rather had a "sucking in" of the chest. This is not a normal condition and usually comes a long with breathing problems.
When he was four days old he had a Bronchoscopy. The doctor put a tube down his airway to see what the problem was. They told us that he had something called Tracheomalacia. "Tracheomalacia in a newborn occurs when the cartilage in the windpipe (trachea) has not developed properly. Instead of being rigid, the walls of the trachea are floppy. Because the windpipe is the main airway, breathing difficulties begin soon after birth." Jamie's airway was so floppy that it can collapse very easily.
Jamie spent the first 8 days of his life in the NICU. We spent a lot of time with him learning all of the things that new parents are taught. My mom has been babysitting since I was about 10 years old so I had been around babies what seems like all of my life. We were taught how to give him a bath, how to put him in his car seat the correct way and basically all the things that you need to learn to take care of a new baby. I didn't know that all the things that I was being taught wouldn't be useful to me for very long because Jamie would have to have his own way of doing things.
Jamie was finally home and I was so very happy. He was struggling with his breathing and eating at the same time. He was using all of his energy to breathe. Jamie would stop breathing and turn blue in his car seat, his self-contained bath seat and if he was held all cuddled like most babies are held. We spent a lot of time in the doctor's office trying to figure out what was wrong with him and why he kept turning blue. I took him numerous times and nothing ever seemed to get done. Every 3-4 days he would sound so congested when he took a breath. Eventually he would have to throw up all of that mucous that was in his airway and then he would sound great for a few more days. I knew that Jamie wasn't growing like he should and that him turning blue like that wasn't right. I kept taking him to the doctor's office and was always told that he was acting normally for Tracheomalacia.
One day, many visits from the first, I again took him to the doctor about his breathing, lack of eating and blue spells. I could only get in with the Nurse Practitioner that day. She took one look at him and excused herself. She came back with one of the doctor's. She asked if it was OK for them to switch patients because she thought that he would need to be sent to University of Virginia in Charlottesville, Virginia and she couldn't do that. They switched patients and the doctor examined Jamie. He said that he thought that Jamie would benefit from seeing a Pediatric Pulmonologist. He set up the appointment for December 11, 1996.
The morning of the appointment we set out at about 5:30 am. Our appointment time was 8:00 am but we weren't sure where we were going and we didn't want to be late. When the doctor came in to the room, he was very nice. I told him that if he thought there was nothing wrong with him, to tell me right away and not waste our time. I had felt that all the other appointments were a waste of time. No one seemed to believe me that he was truly sick and I wasn't just a "new, over-reactive mother". He immediately told me that there was definitely something wrong with him and that his main concern at that time was to find out what and how they could fix it.
For the first time I felt like I was heard and that someone was finally going to help him. He did a "Sweat Test" to check for Cystic Fibrosis. That was negative. He did a few other things to him and decided that Jamie needed to be admitted to the hospital. We asked him if we could go home for the weekend and come back that following Monday. He said that was not a good idea because he wasn't sure that Jamie would survive the weekend if we left with him then. So, at approximately 1:30 pm that afternoon, Jamie was admitted to the Children's Medical Center at UVA. Little did I know at that time that they didn't expect Jamie to ever leave the hospital and return home with me. That was the first time that they were wrong. All I can say is that sometimes, doctor's aren't right and that isn't always a bad thing.