jacobsmommy
07-22-2011, 10:12 PM
I was so happy to be pregnant! I couldn’t believe it! I was really going to be a mommy. Just that quick, the problems started. I had unexplained bleeding early on in the pregnancy. I was put on bed rest for a few weeks, and that hurdle was overcome. Then, the nausea and vomiting started. I was sick for seven months. If you think I am exaggerating, just ask my husband. Five years later, he is still trying to get the smell out of his pickup truck. Pregnancy was a breeze for the eighth and ninth month!!
During my eighth month checkup, I suddenly decided that I wanted to have a C-section for my delivery!! My doctor nearly fell off his stool. There was no medical reason for the procedure, but something was telling me that I had to deliver in that manner. The doctor tried to talk me out of it and he even made me talk to some of his associates. They were very graphic as they detailed the pros and cons of such an invasive surgery. I didn’t care. I trusted my Higher Power and insisted on a Cesarian delivery. I scheduled the appointment and left the office. When I got to the car, I called my husband and told him when our baby was going to be born. We already knew we were expecting a little boy and his name would be Jacob!!! Although he didn’t understand, Dave supported my decision.
Thankfully, my surgery went well. I had no complications and our son, Jacob David Kremer, was delivered on February 15, 2005 at 12:25 pm. He was 8’5” and was 22 inches long. My dream had come true. I was a mommy! I heard his first cry and asked Dave to go with our son while he was examined. I had to stay on the table to be closed. Dave returned a few minutes later and told me that “something may be wrong with his head.” The hospital staff was bringing an x-ray machine so a complete study of Jacob’s head could be done. All of this was done and our new baby was only 30 minutes old. As I came through recovery Jacob was returned to me and he seemed like a healthy baby. His diagnosis was, also, delivered to us: CRANIOSYNOSTOSIS.
Jacob was born with his skull plates fused together. This means that his head didn’t have a soft spot and his brain couldn’t grow. Jacob’s case was complicated because he had a double fusion. The spaces between the skull plates are called sutures. Jacob’s saggital and metopic sutures were closed. He had a bony ridge that ran from the top of his neck up over his head, down his forehead and stopped at the top of his nose. As a result of this condition, Jacob’s head was misshapen. It peaked in the middle of his forehead and at the back of his head. It looked almost like a football! Dave and I were told that Jacob would be fine if he had surgery, but it couldn’t be done at Lehigh Valley Hospital (where we were for the birth) because they didn’t have a pediatric neurosurgeon on staff. It was going to be a very intricate procedure, but with lots of love and prayers, Jacob would be a normal healthy child with a good prognosis! Without the surgery, he would have risked seizures, mental retardation, and, possibly, death.
Of course, Dave and I didn’t hesitate, we prepared ourselves for the reality that our newborn baby was going to have a whopper of a surgery. Our pediatrician suggested we take Jacob to CHOP for an examination, but our insurance didn’t cover that medical facility. We made an appointment at Geisinger Medical Center and went when Jacob was 3 weeks old. The exam was very thorough. The next day, I got a phone call at home from the doctor at Geisinger. He informed me that they were refusing to do Jacob’s surgery because they didn’t have enough experience in this type of procedure. I was devastated. First of all, I was floored that a hospital like Geisinger didn’t have the experience and second of all, where were we going to take our precious baby for a much needed surgery. In the end, I’m thankful that they didn’t take Jacob’s case if they weren’t capable of performing such a procedure. It was a blessing in disguise. We ended up at Hershey Medical Center with a wonderful doctor named Mark Dias. We made an appointment and as Dr. Dias entered the room, he said, “this child has craniosynostosis. It looks like a double fusion.” Then he walked over to where we were sitting and shook Jacob’s little hand and said, “I am your new doctor and I am going to fix your head.” Dr. Mark Dias performed Jacob’s surgery at Hershey Medical Center when he was only 11 weeks old.
We checked into the Ronald McDonald House on May 2, 2005 and Jacob’s surgery was performed on May 3, 2005. Dr. Dias had planned to conduct a two part surgery that was supposed to take approximately 6 hours. It was to be done in tandem with a specialist in plastic surgery. The neurosurgery part of the procedure was going to open Jacob’s skull by cutting 6 centimeters of bone out of the top of his skull. The opening went from the bridge of his nose to the back of his head directly above his neck. After this was completed, the plastics team was going to remove Jacob’s forehead and reshape his orbits. During surgery, Dr. Dias made a decision to delay the plastics portion of the procedure. He came to the waiting room to discuss his decision with Dave and me. He explained that he wanted Jacob to wear a molding helmet for several months. If this didn’t correct the problem, the second part of the surgery would be performed at approximately 5 years of age. Dave and I were nervous when we saw Dr. Dias come into the waiting room after only 2 hours. However, we were very pleased that our baby didn’t have to endure such a long surgery when he was just an infant. The removal of 6 centimeters of bone across the top of Jacob’s head allowed his brain to grow adequately and when we met him in recovery, he had an incision that ran across the top of his head from ear to ear. He stayed in the hospital for just under one week. During that time, Dave and I took turns staying with him. I slept at the Ronald McDonald House during the night and Dave stayed at the hospital. Then, we switched and Dave would go back to the house to sleep during the day while I stayed at the hospital. During his time in the hospital, Jacob needed 3 blood transfusions because he had excessive bleeding during his intricate surgery. Also, he had swelling and bruising that caused his eyes to look like purple golf balls. When his blood count stabilized and the swelling began to reverse, we were allowed to bring Jacob home.
After Jacob’s incision healed, Dr. Dias elected to have his head casted so a molding helmet could be made. Jacob wore the helmet 23 hours per day for 7 days per week. He did this for several months. I was very diligent with the helmet. I didn’t want to take a chance of him needing the second part of the surgery. We had the helmet adjusted every 2 weeks. That meant we had to make a trip to Hershey Medical Center every 2 weeks for the adjustments. Thankfully, this was during the summer months and we didn’t have to contend with bad weather. Jacob responded well to the helmet therapy. He only had to wear it until October 2005. He learned to sleep with it and even roll over. As it turned out, his neck became very strong from holding it up. And it served a double purpose of protecting the incision and the open part of the skull where you could actually see his brain pulse!!
Jacob has recovered from his ordeal and is thriving under the care of Dr. Dias. At this time, it looks like the plastics part of the surgery WILL NOT BE NEEDED. We now see him annually and will probably be discharged completely in the near future. Dave and I feel we are very blessed to have Jacob with us in our lives. He had a tough start, but no one would ever guess it now. Jacob has met all of his developmental milestones, and continues to excel in his development. I want to thank Dr. Dias and his staff for caring for our son and correcting his craniosynostosis. I, also would like to thank the Ronald McDonald House for giving Dave and I a place to rest and recharge during Jacob’s hospital stay. We will never forget that week of our lives and the care and love we were shown while our son was critically ill.
The above story is a short delineation of our son’s fight for a normal life. As a small token of our thanks, Dave and I are asking our friends and family to collect can tabs so we can donate them to the Ronald McDonald House. “The House” uses them as part of their budget so other families can receive the same comfort we received during their struggles. Thank you all for you love and support.:heartbeat:heartbeat
During my eighth month checkup, I suddenly decided that I wanted to have a C-section for my delivery!! My doctor nearly fell off his stool. There was no medical reason for the procedure, but something was telling me that I had to deliver in that manner. The doctor tried to talk me out of it and he even made me talk to some of his associates. They were very graphic as they detailed the pros and cons of such an invasive surgery. I didn’t care. I trusted my Higher Power and insisted on a Cesarian delivery. I scheduled the appointment and left the office. When I got to the car, I called my husband and told him when our baby was going to be born. We already knew we were expecting a little boy and his name would be Jacob!!! Although he didn’t understand, Dave supported my decision.
Thankfully, my surgery went well. I had no complications and our son, Jacob David Kremer, was delivered on February 15, 2005 at 12:25 pm. He was 8’5” and was 22 inches long. My dream had come true. I was a mommy! I heard his first cry and asked Dave to go with our son while he was examined. I had to stay on the table to be closed. Dave returned a few minutes later and told me that “something may be wrong with his head.” The hospital staff was bringing an x-ray machine so a complete study of Jacob’s head could be done. All of this was done and our new baby was only 30 minutes old. As I came through recovery Jacob was returned to me and he seemed like a healthy baby. His diagnosis was, also, delivered to us: CRANIOSYNOSTOSIS.
Jacob was born with his skull plates fused together. This means that his head didn’t have a soft spot and his brain couldn’t grow. Jacob’s case was complicated because he had a double fusion. The spaces between the skull plates are called sutures. Jacob’s saggital and metopic sutures were closed. He had a bony ridge that ran from the top of his neck up over his head, down his forehead and stopped at the top of his nose. As a result of this condition, Jacob’s head was misshapen. It peaked in the middle of his forehead and at the back of his head. It looked almost like a football! Dave and I were told that Jacob would be fine if he had surgery, but it couldn’t be done at Lehigh Valley Hospital (where we were for the birth) because they didn’t have a pediatric neurosurgeon on staff. It was going to be a very intricate procedure, but with lots of love and prayers, Jacob would be a normal healthy child with a good prognosis! Without the surgery, he would have risked seizures, mental retardation, and, possibly, death.
Of course, Dave and I didn’t hesitate, we prepared ourselves for the reality that our newborn baby was going to have a whopper of a surgery. Our pediatrician suggested we take Jacob to CHOP for an examination, but our insurance didn’t cover that medical facility. We made an appointment at Geisinger Medical Center and went when Jacob was 3 weeks old. The exam was very thorough. The next day, I got a phone call at home from the doctor at Geisinger. He informed me that they were refusing to do Jacob’s surgery because they didn’t have enough experience in this type of procedure. I was devastated. First of all, I was floored that a hospital like Geisinger didn’t have the experience and second of all, where were we going to take our precious baby for a much needed surgery. In the end, I’m thankful that they didn’t take Jacob’s case if they weren’t capable of performing such a procedure. It was a blessing in disguise. We ended up at Hershey Medical Center with a wonderful doctor named Mark Dias. We made an appointment and as Dr. Dias entered the room, he said, “this child has craniosynostosis. It looks like a double fusion.” Then he walked over to where we were sitting and shook Jacob’s little hand and said, “I am your new doctor and I am going to fix your head.” Dr. Mark Dias performed Jacob’s surgery at Hershey Medical Center when he was only 11 weeks old.
We checked into the Ronald McDonald House on May 2, 2005 and Jacob’s surgery was performed on May 3, 2005. Dr. Dias had planned to conduct a two part surgery that was supposed to take approximately 6 hours. It was to be done in tandem with a specialist in plastic surgery. The neurosurgery part of the procedure was going to open Jacob’s skull by cutting 6 centimeters of bone out of the top of his skull. The opening went from the bridge of his nose to the back of his head directly above his neck. After this was completed, the plastics team was going to remove Jacob’s forehead and reshape his orbits. During surgery, Dr. Dias made a decision to delay the plastics portion of the procedure. He came to the waiting room to discuss his decision with Dave and me. He explained that he wanted Jacob to wear a molding helmet for several months. If this didn’t correct the problem, the second part of the surgery would be performed at approximately 5 years of age. Dave and I were nervous when we saw Dr. Dias come into the waiting room after only 2 hours. However, we were very pleased that our baby didn’t have to endure such a long surgery when he was just an infant. The removal of 6 centimeters of bone across the top of Jacob’s head allowed his brain to grow adequately and when we met him in recovery, he had an incision that ran across the top of his head from ear to ear. He stayed in the hospital for just under one week. During that time, Dave and I took turns staying with him. I slept at the Ronald McDonald House during the night and Dave stayed at the hospital. Then, we switched and Dave would go back to the house to sleep during the day while I stayed at the hospital. During his time in the hospital, Jacob needed 3 blood transfusions because he had excessive bleeding during his intricate surgery. Also, he had swelling and bruising that caused his eyes to look like purple golf balls. When his blood count stabilized and the swelling began to reverse, we were allowed to bring Jacob home.
After Jacob’s incision healed, Dr. Dias elected to have his head casted so a molding helmet could be made. Jacob wore the helmet 23 hours per day for 7 days per week. He did this for several months. I was very diligent with the helmet. I didn’t want to take a chance of him needing the second part of the surgery. We had the helmet adjusted every 2 weeks. That meant we had to make a trip to Hershey Medical Center every 2 weeks for the adjustments. Thankfully, this was during the summer months and we didn’t have to contend with bad weather. Jacob responded well to the helmet therapy. He only had to wear it until October 2005. He learned to sleep with it and even roll over. As it turned out, his neck became very strong from holding it up. And it served a double purpose of protecting the incision and the open part of the skull where you could actually see his brain pulse!!
Jacob has recovered from his ordeal and is thriving under the care of Dr. Dias. At this time, it looks like the plastics part of the surgery WILL NOT BE NEEDED. We now see him annually and will probably be discharged completely in the near future. Dave and I feel we are very blessed to have Jacob with us in our lives. He had a tough start, but no one would ever guess it now. Jacob has met all of his developmental milestones, and continues to excel in his development. I want to thank Dr. Dias and his staff for caring for our son and correcting his craniosynostosis. I, also would like to thank the Ronald McDonald House for giving Dave and I a place to rest and recharge during Jacob’s hospital stay. We will never forget that week of our lives and the care and love we were shown while our son was critically ill.
The above story is a short delineation of our son’s fight for a normal life. As a small token of our thanks, Dave and I are asking our friends and family to collect can tabs so we can donate them to the Ronald McDonald House. “The House” uses them as part of their budget so other families can receive the same comfort we received during their struggles. Thank you all for you love and support.:heartbeat:heartbeat