Tuesday, September 1, 2015

September 1 - Dear Nicholas Sparks (Guest Blogger Jamie & Jason McSwain)

Dear Mr. Sparks,

It's only been five months. We are still trying to understand why. I was 33 weeks pregnant and so very excited, just as any expecting parent would be. My husband and I spent that Sunday shopping. We went out to get groceries, and ended up at a baby store purchasing Maggie's nursery furniture. We spent the whole day shopping, and throughout the day, I noticed that I was losing some fluid. I really didn't think much about it until we got home. I called my mother who is a nurse, and she suggested that I go to the hospital to have it checked out. They informed me that my water had not broken, but I should see my doctor first thing in the morning. That was a Monday. I went in, and he checked me again. No he said, but he had a hunch that something was going on, so he sent me to the hospital to get admitted. I was monitored and was then sent to have an ultrasound. That was the beginning of the end. The hospital, of course, had better equipment than the doctor's office, and the tech informed me that he could see something wrong. He called my doctor and he quickly made his way to the hospital. Apparently, they couldn't see the fourth chamber of Maggie's heart. My doctor told me that he was going to call a referral, and do some research. I stayed in the hospital overnight fearing that my first child, my daughter, had a heart defect. The next morning my doctor arrived and told us that I was going to Atlanta to a group of doctors who were "top notch." I arrived in Atlanta on the 26th of June. I was admitted into the high risk delivery unit for three days. On the first day, they took me in for an ultrasound. That was when we found out that Maggie had CDH. The doctors wanted to take her immediately. The doctor who performed the ultrasound said, "I am very worried about your baby." So, off we went, down to prepare for an emergency C-section. The anesthesiologist came in and gave me an epidural, and my husband was suited up to accompany me. As soon as we were about to head out, the doctors came in and told us that they had decided to wait. Unfortunately, there were no ECMO beds available at the children's hospital where Maggie would be transferred to. We were given many options. Stay there, transfer to Augusta (which they didn't highly recommend), or transfer to Birmingham. The out of town options had ECMO beds available, but it was up to us. Of course, we wanted to do what they recommended. They said that we should stay in Atlanta, and they would check every day for the ECMO availability. As soon as a bed became available, they would perform the surgery. Three days later, a bed was open, but they decided not to do the c-section. They thought that Maggie had a better chance the longer she stayed inside the womb. My question was "If the lungs are the last thing to develop and the CDH is putting pressure on that area, why not take her before it gets worse?" Wouldn't you think so? Well, that wasn't the case. I was then transferred to the high risk prenatal unit for another three weeks. I had ultrasounds performed everyday, and was monitored twice a day. My water broke during the night on July 4th. They didn't think much about it, so they let her stay in, on top of giving me daily antibiotic treatments intravenously. I remained that way for two weeks. During that time, one of the doctors informed me that he didn't see any reason for me to stay in the hospital and that I might get to go home with once a week ultrasounds and monitoring. It didn't happen that way. My whole family thought that was totally out of the question. At 37½ weeks, another doctor came in to tell me that they were finally going to take Maggie. AND once she was stabilized, they would perform the surgery to repair the left-sided CDH, and that I would be taking home a "normal, healthy baby." We had no idea what CDH was. They never told us what could happen. Sure, they gave us survival percentages, which grew from 50/50 to 70/30. She looked great they said! Well, they decided to induce labor. My cervix wasn't dilated so they inserted Cervadil. About 45 minutes later, Maggie's heart rate dropped dramatically. Nurses and doctors rushed in, mashing my belly, trying to get her back. The anesthesiologist came in and asked if I was allergic to anything, and my mother said no. Then he asked "Is there anything wrong with this baby?" and my mother replied, well, yes, she has CDH. And he then said, "Then what in the H is she doing in here?" They rushed me into the surgery and Maggie was born. I woke up in recovery with my husband by my side, and they brought Maggie to see me. She was in a big see-through case where I got to hold her hand. The nurse informed me that she was very sick and that they had to get her to the children's hospital right away. I told my husband to go with her, that I would be fine. She was born about 2:00 in the afternoon. At around 6:00 the next morning, we lost her. We had no idea that it was that severe. The children's hospital informed my husband that Maggie had a right-sided hernia, not a left. Maggie's doctor couldn't believe that we had been told that she had a left-sided hernia. Apparently, right-sided is worse. We still don't understand everything that happened. We can't figure out why the doctors made the decisions that they made. We are still in shock. We can't understand why. My doctor here in town told me that it was nothing that I did. That it was a fluke of nature. Will this happen again? I am so scared that it will. I have been told that it won't, but I can't help but worry. We are trying again, but we will never replace Maggie. She was so beautiful. So perfect on the outside. CDH is a horrible defect. We had never heard of it before. We pray every day for people who have to go through this like we did. For everyone that has gone through it, we feel your pain. A pain that will never go away!

Margret's parents, Jamie & Jason McSwain (Georgia)

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