Friday, December 4, 2015

December 4 - Dear Nicholas Sparks (Guest Blogger Tari Jocobs)

Dear Mr. Sparks,

My name is Tari Jacobs. Our son Brad was diagnosed with CDH shortly after his birth January 16, 1998. Robert and I were married 6 years before we decided to start our family. We are both very healthy individuals and did not expect anything to go wrong with my pregnancy. My pregnancy was relatively normal. I was put on phenergan due to severe nausea that I was experiencing. I had two sonograms during the pregnancy and they both showed that the baby was developing normally. My due date was January 9, 1998. I was induced on January 16, 1998 at 8:30 am. I had an uncomplicated labor. Brad arrived at 5:12 pm and at first appeared to be normal. He weighed 9lbs 2 ounces and was 21 ½ inches long. He had a head full of dark brown hair. When the cord was cut he was having a difficult time breathing. The doctors thought that he had fluid in his lungs so they took him to the nursery to see if they could suction it out. He was still having a difficult time so they moved him to the level 2 NICU and did an x-ray on his chest. It was determined that he had CDH. His heart was moved over just slightly and it looked like he didn't have much of a left lung. The doctors came back to our room and told us that Brad had CDH. This was a complete shock to both Robert and myself. Robert and I were familiar with what CDH was because, Robert's sister had a baby 18 years prior to Brad's birth who also was born with CDH. (Their baby Jeremy did not survive.) I was also familiar with CDH because in college I had done a written an oral report on CDH for a class that I was taking. I surprised the doctors when I asked if they were going to have to put a gortex patch in Brad to repair the hernia. They told us that Brad had a 50% chance of surviving. If he went on ECMO the chances dropped to 30% and if he did survive he would probably have other complications i.e.: respiratory problems, feeding problems etc. We told them to do whatever it took to insure that Brad would survive. They had to transfer Brad to another hospital that had ECMO. They brought Brad back to my room so I could kiss him good-bye before he left. By this time they had already intubated him and sedated him. My husband followed Brad to the other hospital and stayed with Brad. It was difficult for Robert to leave me there because I had lost a lot of blood after having him and they thought that they were going to have to transfuse me. Brad was on a conventional ventilator for the first night in the hospital. He was in very critical condition but was holding on. In the morning Robert came back to the hospital to see me. (We had recently moved to Texas and had no family in Texas. My mother lives in Hawaii and was not able to get a flight until later in the week. Our friends from Denver flew out that morning to offer support to Robert and I). When Robert arrived he said that it didn't look good for the baby. He brought me a picture of him and I remember just crying and wondering why and had I done anything wrong. I called the hospital and spoke with the surgeon who would eventually operate on Brad. He said Brad was holding his own. Around 8:30 that night the doctors called to say that Brad had taken a turn for the worse and they wanted to put him on ECMO as a last resort. They needed our signatures. Robert left the hospital and rushed over to be with Brad. My doctor had given the ok that if Brad took a turn for the worse that he would release me early so that I could be there to hold him and say good-bye. I was released about twenty minutes after Robert left. I arrived at the hospital and they had decided to put Brad on an oscillating ventilator. The ECMO team was there just in case. At about 5 am Brad had stabilized and they told Robert and I to go home and get some sleep. At 8:30 am the surgeon called and told us that they wanted to operate on Brad. ( He was just a day and a half old) We rushed back to the hospital and met the surgeons and signed the papers. The surgeon told us that Brad was a fighter and he was going to make it. They had to shut down the NICU so that they could operate on Brad. He was too critical to move to an operating room. During the operation one of the ECMO team members came out to let us know that the surgery was going very well and he did not have to be put on ECMO. The surgery took about 1 ½ hours to repair the hernia. The surgeon came out and said everything went great. He was able to repair the hernia with sutures. They did an x-ray after the surgery and they were very surprised to see that Brad had an almost full lung on the left side. His right lung was at the eighth rib and his left lung was at the seventh rib. He continued to do well throughout the week. On that Friday they had to put a broviac line in him because they could not get a good vein for him to receive his meds. On Super bowl Sunday (we are very big Bronco fans) Brad pulled out his ventilator. The doctors finished extubating him and we were there for his first real cry. What a joy! They put a canula on him to help him with his breathing. He only had to have the canula for two days. He had to wait 48 hours before he could be fed breast milk. He took to breast feeding very well but when he was fed breast milk from a bottle he would spit it all back up. The doctor's were concerned with his spitting up and gave him meds to help with the reflux problems. He spent the next 2 ½ weeks in the hospital until he could tolerate his feedings. Finally on February 9, 1998 he came home. No oxygen, no feeding tubes. He thrived when he got home. He continued to be breast fed and we had no problems with him spitting up so his pediatrician took him off all meds. The only problem we did experience was at the surgery site. He started to get granulomas at the ends of his scar. We took him back to the surgeon and he ended up having to go in and remove the sutures because Brad was having a reaction to them. By this time he had already healed so it was not a problem. Brad is now a year old and we are happy to report that he has no problems. He is developing normally, he eats extremely well, and is a happy, healthy, beautiful one year old. He amazed all of his doctors and us at how well he did with the surgery and with experiencing no other complications. After his last x-ray at 9 months old everything appears to be normal. They have told us that we do not need to worry, he is a normal little boy who can do anything little boys his age can do. He is the light of our lives and we feel so blessed to have him here. It amazes us every day to see how well he is doing. There is hope. Never stop believing. Thanks so much to all of the wonderful doctors, nurses, and surgeons who helped Brad to be our Miracle Baby. His name: Bradley James Makanaokalani translated means "The gift from heaven" He truly is our CHERUB...a gift from heaven.

Written by Bradley’s mom, Tari Jocobs (Texas)

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