Dear Mr. Sparks,
Our first child, Jack Hockenyos, was born on October 10, 2000 at St. David's Hospital in Austin, Texas. Even though I was an older mom (age 36), I had an ideal pregnancy - no morning sickness, etc. I even had an amniocentesis with a high-level ultrasound, and nothing was detected. I went into labor 13 days after Jack's due date, and labor progressed smoothly and uneventfully. When Jack was born, it was obvious to the attending doctors that something was wrong - his belly was concave instead of rounded on the left side because the organs had migrated through the hole in the diaphragm into his chest.
He was rushed to the NICU amid the sounds of the siren they ring when calling the emergency team. My husband and I had no idea what was going on. Our OB went to investigate, and came back with the news. We of course had no idea what this birth defect was. The pediatric surgeon came in a short time later and explained to us that until they went in surgically and took a look, there was no way to accurately predict how well Jack would do. Overall, the odds are about 50/50, but Jack appeared to be a "better" case because he had some of his left lung present. He was put on a drug to paralyze him and not make his organs work.
On the 3rd day of his life, he had surgery to correct the defect. Waiting those 3 days were some of the hardest of our lives. While I just prayed and prayed that Jack would get better, my husband was more philosophical. Not a religious man, he went to the hospital chapel and prayed that God would do what he needed to do with Jack. He felt it wasn't his place to make a request, but simply asked that he be given the strength to deal with whatever came his way. It was during this time that my husband went online and found the CHERUBS website. He printed out material for me to read and related stories of children who had done well. This really gave us both comfort and hope.
I had never held Jack, and I'll never forget the female anesthesiologist who instructed the surgical team that I was to hold him for a minute before they wheeled him into surgery. I wasn't sure if I would see him alive again, and I savored the moment. We had a huge group of family and friends waiting at the hospital during the surgery, but Jon and I went to a room by ourselves and waited. It was surprisingly peaceful. The surgeon came in and said it had gone well - he did not need to use a patch, but rather was able to stitch the diaphragm together. I remember a weight being lifted from my body and I smiled for the first time since he was born.
Jack was in the NICU for a total of 5-1/2 weeks. At 3 weeks, he developed a bowel obstruction and had to have another surgery to repair it. At 4-1/2 weeks, he developed an inguinal hernia and had to have a 3rd surgery. When he finally came home, we were both thrilled and terrified. What if something happened again? Would we know when to take him to the hospital? Luckily, things went smoothly. Jack was able to eat from a bottle (no tube feeding) and began to take more and more donated breast milk in. (We were lucky to be able to utilize the Mother's Milk Bank in Austin since I was unable to produce enough milk.) We recorded every ounce of milk that went in, and every ounce of output, too! He grew and grew, and hit his first year milestones without a hitch.
Just after his first birthday, however, he began to spit up. It didn't seem dramatic at first, but increasingly looked abnormal. We took him in, and it was discovered that he had reherniated. Surgery this time was more traumatic for all of us. Jack was not just our newborn that we were getting to know, but our son whom we had lived with and loved for a year. We were so scared, but surgery went fine, and Jack came home after a week and a half.
Jack is now 6 years old. He did have another bowel obstruction at age 5, which had to be surgically repaired. We are hoping that this is it for his surgeries - knock wood! Jack is a sweet, loving and sensitive boy who is very curious. He has some developmental delays and receives speech, occupational, and vision therapy weekly. We are hoping with the early interventions that he will grow up to be a happy, independent adult who has no memory of his dramatic early years. We feel so blessed to have Jack and feel so lucky that he was one of the ones who made it. I just can't imagine our lives without that sweet, smiling face!
Sincerely,
Jack's parents, Rebecca Yerly & Jon Hockenyos (Texas)
Our first child, Jack Hockenyos, was born on October 10, 2000 at St. David's Hospital in Austin, Texas. Even though I was an older mom (age 36), I had an ideal pregnancy - no morning sickness, etc. I even had an amniocentesis with a high-level ultrasound, and nothing was detected. I went into labor 13 days after Jack's due date, and labor progressed smoothly and uneventfully. When Jack was born, it was obvious to the attending doctors that something was wrong - his belly was concave instead of rounded on the left side because the organs had migrated through the hole in the diaphragm into his chest.
He was rushed to the NICU amid the sounds of the siren they ring when calling the emergency team. My husband and I had no idea what was going on. Our OB went to investigate, and came back with the news. We of course had no idea what this birth defect was. The pediatric surgeon came in a short time later and explained to us that until they went in surgically and took a look, there was no way to accurately predict how well Jack would do. Overall, the odds are about 50/50, but Jack appeared to be a "better" case because he had some of his left lung present. He was put on a drug to paralyze him and not make his organs work.
On the 3rd day of his life, he had surgery to correct the defect. Waiting those 3 days were some of the hardest of our lives. While I just prayed and prayed that Jack would get better, my husband was more philosophical. Not a religious man, he went to the hospital chapel and prayed that God would do what he needed to do with Jack. He felt it wasn't his place to make a request, but simply asked that he be given the strength to deal with whatever came his way. It was during this time that my husband went online and found the CHERUBS website. He printed out material for me to read and related stories of children who had done well. This really gave us both comfort and hope.
I had never held Jack, and I'll never forget the female anesthesiologist who instructed the surgical team that I was to hold him for a minute before they wheeled him into surgery. I wasn't sure if I would see him alive again, and I savored the moment. We had a huge group of family and friends waiting at the hospital during the surgery, but Jon and I went to a room by ourselves and waited. It was surprisingly peaceful. The surgeon came in and said it had gone well - he did not need to use a patch, but rather was able to stitch the diaphragm together. I remember a weight being lifted from my body and I smiled for the first time since he was born.
Jack was in the NICU for a total of 5-1/2 weeks. At 3 weeks, he developed a bowel obstruction and had to have another surgery to repair it. At 4-1/2 weeks, he developed an inguinal hernia and had to have a 3rd surgery. When he finally came home, we were both thrilled and terrified. What if something happened again? Would we know when to take him to the hospital? Luckily, things went smoothly. Jack was able to eat from a bottle (no tube feeding) and began to take more and more donated breast milk in. (We were lucky to be able to utilize the Mother's Milk Bank in Austin since I was unable to produce enough milk.) We recorded every ounce of milk that went in, and every ounce of output, too! He grew and grew, and hit his first year milestones without a hitch.
Just after his first birthday, however, he began to spit up. It didn't seem dramatic at first, but increasingly looked abnormal. We took him in, and it was discovered that he had reherniated. Surgery this time was more traumatic for all of us. Jack was not just our newborn that we were getting to know, but our son whom we had lived with and loved for a year. We were so scared, but surgery went fine, and Jack came home after a week and a half.
Jack is now 6 years old. He did have another bowel obstruction at age 5, which had to be surgically repaired. We are hoping that this is it for his surgeries - knock wood! Jack is a sweet, loving and sensitive boy who is very curious. He has some developmental delays and receives speech, occupational, and vision therapy weekly. We are hoping with the early interventions that he will grow up to be a happy, independent adult who has no memory of his dramatic early years. We feel so blessed to have Jack and feel so lucky that he was one of the ones who made it. I just can't imagine our lives without that sweet, smiling face!
Sincerely,
Jack's parents, Rebecca Yerly & Jon Hockenyos (Texas)
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