Our lives were forever changed the day our family of four, Jenny, Sam, Molly, and Maisy, found out that we were expecting twins! We knew we had challenges up ahead but nothing could have prepared us for the day my water broke at only 19 weeks gestation. Fear, shock, and panic became the theme of our next few days as we were uncertain whether our twin sons would survive. Doctors gave us a 10% chance of survival. Sam and I were unwilling to accept these odds and we were going to fight in every way we knew how. That fight began with prayer—that is when our journey began. I went home on strict bed rest for the next 5 ½ weeks until the twins were viable. At that point, I was hospitalized and kept on bed rest. Six days into that hospitalization, Justin (whose water bag had broken) had prolapsed his cord necessitating an emergency C-section. Within minutes, I was on the operating table and at 10:05 and 10:06, Justin Samuel and Jake Andrew were born at 24 ½ weeks gestation.
Fear, shock and panic again. Two babies weighing in at one pound five ounces and one pound eight ounces were fighting for their lives. Justin had a difficult time. His lungs and chest were deformed and under-developed because his bag of water had broken so early. Jake seemed to do so much better than his brother. After a wonderful team of doctors and nurses from the NWTH NICU stabilized our sons, they were whisked away to the NICU to begin a long journey of survival. To our surprise, Justin was doing better than we thought. We started to feel that he would do okay after weeks of doubting that he would even survive. However, after only nine hours, Justin could not fight any longer and he went on to a world where he could breathe normally and would not have to suffer a life of pain. He died that evening, our 3rd born child. Justin fell victim to pulmonary hypoplasia and extreme prematurity. We buried him 10 days later in a small cemetery very near our home in Perryton, Texas. Though his body was small, his heart and soul were large. He saved his brother, Jake's life, and gave him a chance at 24 ½ weeks instead of 19 weeks.
Jake's journey was marked with its many struggles in the NICU. At that time, he was the smallest baby and was placed in a low stimulation environment. He was on a ventilator, had IV’s everywhere, had a feeding tube and was placed under bilirubin lights. Day by day, we watched him fight for his life. We watched his monitor as if it were another part of his body. We watched his heart rate dip, his oxygen levels go up and down, we watched respiratory and nursing staff bag him when his ventilator did not work. We had to reposition his paper- like ears every time we moved him so they could grow normally. We cried as he cried when he was touched or poked or stimulated too much. He survived severe broncho-pulmonary dysplasia, sepsis, heart surgery, inguinal hernia surgery, intracranial hemorrhage, periventricular leukomalacia, and other common prematurity complications. Our family had to be apart at that time. I took a leave from work and lived in a camper in a campground minutes from the hospital, while Sam and the girls stayed at our Perryton home two hours away. We wanted the girls to attend school, be kids, and go on living. Every Wednesday though, they came to town and they got to scrub into the NICU and see their brother....they did not miss many Wednesdays.
After 109 days in the NICU, Jake was released to go home! He went home on oxygen and a heart/oxygen monitor. What a happy yet scary day that was!! For the next six months, he screamed non-stop for reasons we are still unsure. We figure it was a combination of new environment, a somewhat “post-traumatic stress disorder”, and narcotic addiction that he acquired while on so many meds in the hospital. He eventually got over the grumpiness and became a very happy, well-adjusted baby. He remained on oxygen at home for a full year and was on house arrest! We did not let anyone near him that could make him sick. After a year, he started going to physical and occupational therapy. Today, he still has chronic lung disease, he has had to have his eyes operated on, and he has a mild form of cerebral palsy, called Spastic Diplegia. He's six, in pre-k and walking with canes. He loves life, is happy and is our little miracle man! Thanks to the fundraising effort of those that support the March of Dimes, we have Jake to remind us how precious life is and how quickly it can be taken away. Even if you do everything right, sometimes things go wrong. Our hope is that no other family ever has to go through what we did. Our hope is the March of Dimes can help put an end to so much fear, shock, and panic that so many families have faced in their darkest hours.