Amy and David Collins were shocked when they learned that they were going to be parents of quadruplets, the result of ovary-stimulating infertility treatment. But that was just the first of many shocks that would transform their lives. Two of the fetuses died before birth. And not long after, in February 2003, the surviving children were born – at 24 weeks. David and Elyssa each weighed about a pound and a half. Whisked to the neonatal intensive care unit at Women & Infants Hospital, these little ones had many struggles ahead. Here, Amy Collins tells her family's story.

I honestly don't know if I could go through it all again, knowing what I know now. In the NICU, our children's fate was literally out of our hands -- we couldn't hold them for months. I learned much later that the whole first month, the team worried that one or both would die.

And they went through a lot: weeks on a ventilator (both), heart surgery (Elyssa), a chest tube (David), bilirubin lights for jaundice (both), courses of steroids (both), multiple transfusions (both), a bowel perforation (Elyssa), a partially paralyzed phrenic nerve (Elyssa), hernia repair surgery (both).

For us, as parents, it was like falling off a boat in the ocean a long way from shore. Sometimes you can glimpse the shoreline and aim toward it. Sometimes the waves come up too high and all you can do is gasp for air and taste the salt.

Journal photo / Kathy Borchers Amy Marchand Collins hoists her son, David, to change him while sister, Elyssa, climbs onto the couch to play. The twins, born at just 24 weeks’ gestation, are deaf and have cerebral palsy, but that doesn’t seem to slow them.

But gradually we normalized our experience. We got used to looking past the tape and the tubes and seeing only our babies. And their resilience and ability to overcome amazing odds was inspiring. They needed every technological advantage, yet that alone could not do the whole job. It came down to the intense will to live inside those incredibly fragile scraps of flesh that were our children.

As the weeks passed, the babies improved. So it was a bit of a shock when I was given the message: "The audiologist wants to talk to you." I'd been there long enough to know that they only want to talk to you when it's bad. And it was: David had severe to profound hearing loss and this was likely to be permanent. We had not gotten over that shock when, two days later, the audiologist reported that Elyssa's hearing test had yielded the same results. My first reaction was practical: "We'll have to color code the hearing aids."

Emotionally, it was like being knocked back to the beginning. It was just so unfair! They had already been through so much. And this was entirely different than anything else -- this was permanent, not something that they would eventually outgrow. I could feel the track of my life shift beneath me. I didn't know where I was going, but I knew it was someplace different than before.

After 129 days in the NICU, we brought David and Elyssa to our Tiverton home. They weighed 5 and 7 pounds.A scary transition, to be sure -- we went from being surrounded by a team of caring professionals, to it being just us, or later, just me alone with the babies, navigating their incredibly busy appointment schedules, with all their doctors and therapists.

We quickly learned that it is not all "happily ever after" just because we were home from the NICU. I knew that preemies don't always develop at the same rate as full-term babies. I also knew that my children had muscle-tone issues -- Elyssa was floppy while David's muscles were tight. But I always thought it was something they'd outgrow.

So I was very upset when, at the age of 2, both children were diagnosed with cerebral palsy. That was a hard one to absorb. When I was 12, I baby-sat for a child with cerebral palsy; he was nonverbal, completely dependent and in a wheelchair. But our pediatrician explained that CP is really a "wastebasket diagnosis" with a wide range of outcomes, and David and Elyssa will probably walk eventually.

Journal photo / Kathy Borchers Alicia Morgan, behavioral specialist with Perspective, does home-based therapeutic services (HBTS) with David.

The doctor recommended ankle-foot orthotics, called AFOs, flexible plastic devices that keep their feet pointing forward. So we ordered them. But when they called from Orthopedic Appliances to say that they were ready, the person at the other end said, "Their braces are ready." And it was just amazing to me to watch my reaction. I had no attachment or triggering to "AFOs." But call them "braces" on the other hand? They sat on the table for almost a month before I would use them.

But we weren't done with diagnoses. There had been differences between David and Elyssa from the beginning. Elyssa was the first to smile and she has always studied faces. David's first real smile was at something red over my shoulder. He'd never been good at eye contact. In December 2006, when David was almost 4, he received a diagnosis of autism. I believe his autism is related to his prematurity.

So, as you can see, the costs of prematurity didn't end the day we came home from the hospital. In the first months after discharge, the babies needed oxygen, monitors, medications and home nursing. They got early intervention services until age 3, and special education afterward.

Those are costs to the health and education systems. There have also been costs to my husband and me. For much of the time we spent with our babies, we had to take unpaid leave. When I sat down to do my taxes in April 2004, I discovered that my personal income for 2003 -- the year my children were born -- was one-tenth of my personal income in 2000, almost to the penny.

As the extent of our children's needs became clear, we both made dramatic changes in our career paths. I had finished my MBA three weeks before David and Elyssa were born. I stayed "under-employed" in an unrewarding job for years because it had great insurance benefits and allowed me to work nights and weekends. Eventually I took a part-time job with RIPIN (the Rhode Island Parent Information Network) as a parent consultant at Women & Infants Neonatal Follow-Up Clinic for premature babies.

My husband went back to school so he could move into a career as a mental-health counselor, with the idea he would have the flexibility to set his own schedule so he could be there for our children.

Journal photo / Kathy Borchers Elyssa Collins has a cochlear implant.

There were costs to our relationship as well. In February this year, David and I separated and are in the process of divorce. Although we both remain devoted and involved parents, our relationship frayed and eventually broke under the weight of all we have been through. The children and I now live in an apartment in East Providence, closer to their doctors, schools and other providers.

And the costs will continue. Our children face a lifetime of staggering expenses for necessary medical care.

Yet behind all those costs are two amazing, smart, funny, incredibly motivated and very cute, very real children. They are 6 years old. David has known the alphabet since he was 3 and taught himself to read. He is making great progress in his therapy and attends a special-needs classroom in our local elementary school. Physically he likes to be upright and walking, although he needs an adult hand or his walker to support his balance.

Elyssa has a cochlear implant and attends the Rhode Island School for the Deaf, where she is learning both sign language and speech. Although she is able to walk short distances with a lot of equipment and support, the effort leaves her exhausted. So Elyssa will be getting a power wheelchair in a few months. It will be better to save her energy for learning, and she will enjoy the experience of independent mobility.

None of us are unscathed by this experience, but in truth, we would not want to be. It has changed and shaped us in many ways, made us stronger and better advocates for our children, and deepened our faith.