PeekabooNWA

I Depend on Miracles

Posted on 29. Mar, 2009 by admin in Personal Stories

Most women enjoy being pregnant. They have a “glow.” They prepare for nine months to meet the one person (or two) who will truly change their life forever. What if you do everything right, but you don’t get your full nine months? And what if your life changes in ways you never expected?

My twins, Jake and Abby, at only 6 years old have a long medical history. They were born at 26 weeks gestation – a full three months premature. I initially went into labor at 20 weeks, but I was hospitalized and put on medication to stop the labor. The bad news was that I couldn’t go home – I had to remain in the hospital until I gave birth. At 26 weeks the doctors performed an emergency C-section. Immediately, Jake and Abby were transferred to a hospital that provided means for taking care of them. I saw them for a brief moment before they were loaded into the ambulance, and I didn’t see them again for 4 days. When I finally did get to see them, I completely fell apart. How could a baby so small be alive? I just kept saying over and over, “They’re so tiny.” My mom just held me while I cried over the incubator of my tiny daughter, praying that my little babies would live.

At birth, Jake weighed 1 pound 15 ounces, and Abby weighed 1 pound 13 ounces. To put this in perspective for you, that’s about the size of a beanie baby bear – or, as one doctor put it, a good size cheeseburger. We were told when they were born that they had about a 50 – 50 chance of survival, and their futures as “normal” children were unknown. There were so many questions and so few answers.

Our babies spent three months in the Neonatal Intensive Care Unit, or NICU as it is commonly called. During that time, my husband, Tony, kept me going when I was exhausted, in pain, or simply sad. My dad made sure the nurses replaced the name cards “Twin A” and “Twin B” with actual name cards so that the nurses were forced get attached to them. You work harder to save the things you are attached to, so I wanted them to be very attached. He also began to chronicle their days in the NICU through his gift of photography. We have well over 1,000 images of our tiny infants in the hospital. I didn’t want to forget what they looked like, no matter what happened. My mother’s gift is writing. Each day she would send an update to our friends and family on the progress and challenges Jake and Abby faced. In her updates, she would always ask for prayers – and boy did we get them!

In the three months they spent in the NICU, Jake and Abby experienced pneumonia, RSV (a life threatening respiratory virus that can result in permanent lung damage), feeding difficulties, significant brain hemorrhages resulting in brain damage, and multiple surgeries. Initially, their eyes were still fused shut like a puppy, they still had peach fuzz type fur all over their bodies, and their skin was so underdeveloped that we couldn’t even touch them for several weeks. Not the least of our worries was the fact that neither child could breathe without help from machines.

I vividly remember the day Jake had surgery on his small intestine. He was 10 days old. He had a perforated bowel and a horrible intestinal disease called Necrotizing Enterocolitis (NEC) in which the tissue of the intestines dies. Going in to the operation, his surgeon had a pretty positive outlook and seemed to think this was a minor setback. After the surgery, however, he had an entirely different view. As we sat in that waiting room listening to his report on how the surgery went, he stared at the floor – he wouldn’t even make eye contact with us. He had found far more disease in Jake’s intestine than he expected to find. He had removed 13 centimeters of Jake’s small intestine and created sort of a temporary colostomy. I remember my husband finally asking for a prognosis. The surgeon replied, “He could die. It’s up to his doctors to keep him alive now.” I was devastated. Initially, I was angry. How could a doctor talk to us like that? How can someone tell a family that it’s very possible their child will die and not even look them in the eye when they say it? We cried, we prayed, but mostly, we stayed with Jake. We wanted him to know we were there and that we were doing all we could to protect him. Even though we still couldn’t hold him, we could put our hands in the incubator and let him hold our fingers. I don’t know if it was more of a comfort to Jake or to us.

Keeping your hopes up in a NICU can be difficult. You are surrounded by the tiniest and sickest babies who are fighting for their lives. Other moms are giving birth to healthy babies and taking them home while you watch through the thick glass of the incubator as your babies try to breathe without machines. Although you’ve given birth, you’re still not really a parent yet.

Even though my babies were perfect to me, it’s rare to be born as early as my twins were and not have some residual effects. Both of my children have suffered developmental and physical issues as a result of being born so early. Abby is significantly hearing impaired and wears hearing aids in both ears. When she first got her hearing aids, she was amazed at all the new sounds she heard – birds, the rustling of leaves – but it has been an adjustment for her to get used to the the loud world we live in. Her teachers work tirelessly with her and have truly been a blessing to us.

Jake suffers from asthma and mild cerebral palsy. He participates in occupational and physical therapy to help build and strengthen his muscles, and he amazes us everyday. He runs and plays just like any “normal” 6 year old. In fact, most people would never know that Jake has cerebral palsy, but after an MRI, we now know that the damage to his brain is quite significant. His neurologist essentially told us that the picture of his brain does not look like the child he sees. In other words, he can’t explain why Jake is so “normal.” But I can.

Prior to the birth of my children, I had a rather benign understanding of God. I grew up in a church and knew God was there, but as for how he works in our lives, I was pretty oblivious. I am also somewhat of a skeptic by nature, so the idea of miracles seemed foreign and ancient. It took the frightening birth of my twins for me to understand that miracles DO happen. Not only did Jake and Abby beat the odds and survive, they are in great health and live what we consider “normal” lives. We have some residual effects of the premature birth, but most people – including our doctors – are totally surprised when they realize what all Jake and Abby have been through. It’s a miracle that they lived – it’s a miracle that they walk – it’s a miracle that they talk – it’s a miracle that they are developing as normal children. They are truly miracles, and they’ve had some miraculous people and organizations helping them along the way.

Since Jake and Abby’s birth and experience in the NICU, I decided to do what I could to help other families who experience premature birth. I became involved with the March of Dimes, an organization that has devoted itself to saving babies. By working with the March of Dimes, I learned that prematurity is the leading killer of America’s newborns. Those who survive often have lifelong health problems, including cerebral palsy, mental retardation, chronic lung disease, blindness and hearing loss. According to the March of Dimes, Prematurity has been escalating steadily and alarmingly over the past two decades, and in 2005, more than 525,000 infants were born prematurely, the highest number ever reported for the U.S. That same year, the United States as a society paid at least 26.2 billion dollars in economic costs associated with preterm birth.

However, the March of Dimes is trying to turn those numbers around. The March of Dimes Prematurity Campaign is a multimillion-dollar research, awareness and education campaign to help families have healthier babies. And in addition to trying to find a cause for pre-term labor and pre-mature birth, the March of Dimes also conducts research to help save the babies who arrive so early. Jake and Abby breathe because the March of Dimes funded research into surfactant therapy, which helps these tiny babies’ lungs to function better. Each year our family team – Team Fontana – participates in March for Babies, a national walk that raises money to support the March of Dimes research into prematurity in hopes that maybe one day we will overcome the epidemic of premature birth. Last year our team raised over $5,000, and I received the Presidents Award for being the “Top Adult Walker” in the state of Arkansas for funds raised. This year we are continuing our goal to help these tiny babies and their families.
Because of miracles – like the talented doctors and nurses, the research done by the March of Dimes and the prayers of so many friends and strangers – Jake and Abby are alive today. I saw a bumper sticker on the back of a car that said “I don’t believe in miracles – I depend on them.” Where once I was a skeptic who didn’t believe in modern miracles, I am now someone who not only depends on them, but someone who sees them every day because they live in my house.

Please join us in March for Babies this year. You can sign up to walk as an individual or you can join a team or start your own team. You can go to www.marchforbabies.org to get registered to walk and start raising money. The Northwest Arkansas March for Babies is Saturday, May 16 at 9:00 am at HarBer Meadows in Springdale.

Story by: Susan Fontana
SFONTANA@bentonville.k12.ar.us