A thorough introduction

My name is Jordan. I was born and raised in Hillsboro, Oregon. I have one sister, Stephanie. My dad, Jim, is a dentist in Hillsboro, and my mom, Connie, is his right hand woman at the office.

Almost six years ago (WOW) I met my husband, Ben, in Provo, Utah. We met in the typical BYU fashion, at church! The first time Ben and I met I thought he was really difficult to read. We spoke briefly, but I didn't think much of it because we didn't click. After several encounters at social events throughout the summer, Ben and I ended up talking for several afters after Sunday night Ward Prayer and clicked. We married in the Mt. Timpanogos Temple on May 2, 2003.

In April of 2005 we made a life changing decision. At the time Ben was working at a restaurant and was pretty burnt out. I had been working at a residential treatment center, Discovery Academy. We accepted a new job at Alpine Academy, as Family Teachers. We moved an hour away from our home to Tooele, Utah to live in a home with ten privately placed girls in need of treatment to address behaviors such as depression, family strain, social anxiety, and discipline issues. We knew the job would be intense, but nothing could have prepared us for the sacrifices we would make, the lessons we would learn, and in turn blessings!

Our first year was quite an adjustment. I was pregnant with our first baby. During our first ultrasound the radiologist detected a cystic kidney and problems with the baby's bladder. At a follow up visit with maternal fetal medicine, we were told that the baby would likely have good renal function in his remaining kidney and no other abnormalities were detected. On September 18, at 35 weeks, I woke up in the morning and thought I was leaking amniotic fluid. I snapped at Ben several times and we argued. I think because I was so horribly moody, Ben suspected something might really be wrong. We decided to stop in the ER quickly just to be safe. Once in the emergency room the nurse asked me to sit in a wheelchair. I immediately felt embarrassed and hoped I wasn't overreacting. After two hours in the women's unit the doctor prepared to release me. At the last minute the doctor decided to check my cervix because the machines were detecting contractions. He found I was dilated and almost completely effaced, and decided to keep me overnight. I was naive about childbirth and when the doctor sent me home on bedrest, I was clueless that I would have the baby within 24 hours! I was only home for two hours when my water broke. Nathan was born on September 19, 2005.

We were warned that Nathan may have respiratory problems due to his prematurity. I saw his cute little cone-head and then the nurses immediately whisked him away to work on his lungs. In the meantime I was taken to a recovery room and the on-call pediatrician came to speak to Ben and I. It was such a blessing this particular physician, Dr. Haroutunian, was on call that day. As Dr. H. tried to place a breathing tube in Nathan's trachea, he detected a trans-esophageal fistula (TEF). Acting on instinct, Dr. H. checked Nathan's bottom. He then discovered Nathan also had an imperforate anus. Dr. H. was the first person to use the word "VATTRS." Nathan took his first helicopter ride to Primary Children's hospital where two weeks later doctors finally concluded that Nathan did indeed have VATTRS Syndrome, also known as VACTRAL. Nathan was born with an ASD/VSD hole in his heart, an imperforate anus, and a TEF. Nathan's second kidney had completely disintegrated. Nathan's ureter connected through his prostate, creating a large ureter with a slow flow, and grade 5 kidney reflux. Nathan's anus also connected to his prostate. By chance and unrelated to his other birth defects, Nathan was born with problems with his reproductive system as well. On Nathan's second day of life he underwent major surgery to repair his TEF and create an stoma for waste disposal. Nathan spent six weeks in the NICU. After two weeks we were finally able to hold him. Ben and I could feel his sweetness. We knew Nathan was special and I felt inadequate to take care of someone with a special mission we could sense. Once Nathan came home, he wore an eating tube we would place in his nose to aide in feeding. Nathan lacked an appetite and was often too tired to eat. Over the next year Nathan was hospitalized every other month for infections such as e-coli, pseudamonas, and enterococcus, caused by his grade 5 reflux. Nathan also began continual oxygen therapy at home when a routine echocardiogram revealed pulmonary hypertension of his lungs. At eight months old Nathan underwent heart bypass surgery to repair the hole in his heart.

During this time, I became pregnant with our second baby. Ben and I knew it would be hard to have two babies so close together, but I felt so strongly that Nathan needed a friend, and that we had another little spirit waiting to come to earth. Due to the complications with Nathan, I was closely monitored, but everyone involved felt that since Nathan's condition was one in a billion, there wasn't much need for concern. At 20 weeks gestation, I began having infrequent contractions. By 24 weeks I was on bedrest and medication. At 29 weeks, I was hospitalized at St. Marks.

My hospitalization left Ben at home with Nathan and ten girls. I learned a lot about myself during my six week hospital stay. For one thing, I learned that I need people. Once when I was fifteen someone commented to my mom that I was the most independent and resourceful teenager he had met. I fed off of this comment for a long time. I still don't know why - I had many other positive attributes, and quite honestly, I was a talented teenager and had many other characteristics I could have explored and developed. For some reason, I took great pride in this comment, and for a long time I thought it made me strong to not "need" anyone. Although until I was married I always had a lot of friends, few of them sensed that I kept each of them at a calculated distance. In fact, those I felt closest to I pushed away the most. During my hospital stay I became acutely aware that I no longer had friends. I had known this for a long time, but I blamed it on my sixty hour work weeks and taking care of a special needs child. Left alone with a television and my thoughts, I couldn't run away from the truth. For the first four weeks the nurses would offer me help and I would refuse it. They would say, "You're so easy!" and I would feel so good that I didn't cause them trouble, and that I was so independent. When I was admitted to St. Marks I was transported by ambulance from Tooele. I was dilated to a 4 and almost completely effaced. I believe strongly our baby did not come because there were lessons I needed to learn, and I resisted them until my last two weeks on bedrest. Among this important realization, I spent a lot of time thinking about my family and my life.

Eva Rachelle was born on October 9, 2006. Eva was admitted to the NICU due to lung prematurity. Eva came home the day Nathan was admitted to Primary Children's hospital for surgery to repair his imperforate anus!

I have spent the last six months watching Eva and Nathan grow and working hard to help teach our teenage girls the skills they need to return to their families.