Tuesday, September 22, 2015

September 22 - Dear Nicholas Sparks (Guest Blogger Becky Fleming)

Dear Mr. Sparks,

Benjamin was our first pregnancy. We had been trying for 3 years to have a child. We did not use fertility drugs however. I had the perfect pregnancy. I was never sick and felt full of energy the whole time. I gained a total of 16 lbs. even though I looked like I had gained 40. During the entire pregnancy I had only had one ultrasound. There was just no indication that there was a problem. When I went into labor I was five days late. When the nurse was checking me in and attaching me to the monitors, she had a hard time picking up Benjamin's heartbeat even though when she could find it, it was strong. This would later turn out to be because his heart had been pushed to the opposite side of his chest. My labor was 12 hours long. Benjamin let out a small cry. He was laid on my chest for a fraction of a second. In that second, his brown eyes and mine connected and I memorized his face. That would be the last time I saw that face without tubes for the next 3 mos. He was rushed to the nursery to be worked on. A nurse manager came and told us that there was a hole in the diaphragm that would have to be corrected with surgery. At this time, I still did not realize he might die. He was put on a ventilator and transported to a wonderful hospital in Sacramento. My husband James went with him that night. By this time we knew it was serious and I had to have James with him just in case we lost him. I was isolated from the other mothers and within half an hour was receiving calls from surgeons asking for permission to do all kinds of things. I was still so drugged from the birth that I had to grab a pen and paper to write down what they were saying so I could read it later. What did stick in my mind though was that they kept saying "It was never detected? Didn't you have an ultrasound?" My blood boiled and my head was saying "If anything happens to my son, I will sue Kaiser and every doctor and radiologist who touched my file." Later I learned it was that cut and dry. Benjamin held his own on the ventilator until early the next morning. My parents came and checked me out of the hospital (I was pacing the halls waiting for them) and drove me to Sacramento the next morning. I realized that I had not taken any pain medication since the labor and was beginning to feel it. We met James and his brothers who had gone up to be with him. James and I went to the NICU together. I will never in my life forget the smell of the disinfectant soap that was used to scrub everybody up. We put on gowns and went to find our son. He had begun to deteriorate so he had been put on ECMO aprox 4 hours earlier. He looked lifeless and I was afraid to touch him. His machines took up half a room and he had two nurses devoted to his care alone. We met with the doctors who were very blunt about the fact that he was not responding well at all. They did keep mentioning how he would move even when he was given a paralyzing drug. That had to be a sign of strength, didn't it? We stayed only a short time. James was sick to his stomach and I was weak. We went back and forth several times that day. We had tons of family all around us and no one knew what to say. My sister in law was able to let us stay in an apartment she had been using. That night after everyone left, we finally talked about what could really happen. James reassured me that we would have a family and that Benjamin would always be a part of it even if it had only been for a short time. He reassured me that our marriage could handle it and that we would survive. We sat on the living room floor and prayed out loud. Then we cried. That became our routine for the next few days. Benjamin didn't improve by day 7 and I was running out of hope. I finally asked a nurse how long the doctors would let Ben stay on ECMO before turning off the machine. She felt that things would be decided around 10 days. Luckily on about day 9 Ben started making some improvement. By day 11 they were ready to take him off. They had done a trial run. His heart stopped. They did CPR. Ben had a new nurse that night and when I called to check on him (I was very up because of his progress) she informed me that they had just had to perform CPR and that he was on 100% oxygen. A total setback. I was devastated. Luckily Benjamin bounced back within hours. They cut back the rates and let him stabilize for about 24 hours. They took him off successfully. They kept him stable until day 13 and took him to surgery. We watched as they wheeled my infant into the operating room. We talked with the surgeons and nurses. We were confident that he would come through with flying colors. The entire family was there. I was starting to feel pressured by this so I was extra nervous. Finally the surgeon called us into a separate room and told us the status. Benjamin had survived the surgery, but had had such a small diaphragm the surgeon didn't know if he would survive or not. His left lung was only a bud and there had been very little room in the belly for the rest of his organs. He said we wouldn't be out of the woods for six more weeks at least. The next six weeks brought about staff infections and a second surgery for pyloric stenosis. Finally on oxygen and a g-tube with a feeding pump we took Benjamin home. He thrived at home. We still went through our share of infections and panicked moments in the middle of the night. We have been to two different emergency rooms three different times. The last time, interns were called in to observe because Benjamin was so rare. Our last major infection was with the g-tube itself. I finally scheduled a doctor's appointment and when the doctor came in I said, "I'm removing the g-tube, what do I do after that?" He was so flabbergasted that he had to go check with another doctor. When he returned, we removed it together. Since then Benjamin has become a major bottle baby, growing to 22 lbs. We just celebrated his first birthday.

I could go on for days about Benjamin and his story. I feel like it is my job now though to help others going through the same thing.

Benjamin's mom, Becky Fleming (California)

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