Lilly and Sarah, my twin daughters, were born twelve weeks premature, in the middle of March, 2007. The edge of viability for preemie babies back then was right around twenty-eight weeks, or twelve weeks early, but we had the very best doctors and nurses working to help to keep them alive, so there was that.

Rough days, back then.

They stayed in the Neonatal Intensive Care Unit at Memorial Hospital in South Bend for eight weeks. It was at that point in time when the doctors thought that we would be able to bring them home. So, near the middle of May, we brought Lilly and Sarah home from the hospital, still a month before their original due date, and two months after their birth.

Sarah seemed to do well, in the first couple of days home from the hospital.

Lilly… not so much.

So we called the hospital –the NICU– and described what we were seeing and they told us to bring Lilly back in to the hospital. So we brought Lilly in, and we were admitted to the Pediatric unit.

At which point in time, the staff members from the NICU seized control of Lilly, from pediatrics, and moved her back into the NICU.

THE BEST NICU IN THE WORLD IS IN MEMORIAL HOSPITAL OF SOUTH BEND.

During the days that followed, while Lilly was back in the care of the NICU doctors and nurses, they worked to try to figure out what was causing Lilly to fail to thrive at home. Different tests were run. Studies were called for. Scans of this and bloodwork for that.

Then, they discovered it.

Lilly had a congenital heart defect. Specifically, a ventricular septal defect (a VSD). In layman’s terms, she had a hole in her heart, between the lower two chambers, that caused the pumping of oxygenated blood to be less effective than what was necessary for her development.

It would require open heart surgery. She would be admitted to Riley Children’s Hospital in Indianapolis and the heart surgeon would repair the hole.

The surgery happened two days after Father’s Day, 2007. We drove down to Indianapolis on Sunday, checked Lilly in to the hospital for pre-op on Monday, and the surgery happened on Tuesday.

If you like colors, you’ll appreciate this: Lilly’s doctor in the NICU in South Bend was Dr. White (LOVE THAT MAN) and her surgeon in Indianapolis was Dr. Brown. How funny is that?!?!

The surgery to repair Lilly’s heart took most of the day on June 19th, 2007. We sat in the waiting area, with our closest family, waiting for any news that would come our way. I remember playing some cards to try to pass the time on that day, and I remember reading, but even more than those things, I remember that there never seemed to be enough information coming our way, at least not enough to keep us satisfied.

There is a binder in our house, that we were given by the staff at Riley Children’s Hospital, when we were discharged in the middle of July of that year. The binder tells every last detail of what took place during the surgery to repair Lilly’s heart, every move that Dr. Brown made. I tried reading it once. I got one sentence into it, got weak in the knees, and I swore I would never try that again.

That night, as Lilly was making her way through one of the hardest nights of her life, we tried to sleep in the hospital, Jennie and I, on recliners in the ‘Family Lounge’ that were supposed to be ‘sleeper recliners’. Whether they failed at their job, or we were a lot less likely on that night to be able to sleep soundly, who’s to say?!?!

The worst part of those first several days, post-op, was all of the wires and the tubes and the monitors, the beeping, everything that seemed to be necessary for keeping my oldest daughter alive was overwhelming. She had drainage tubes leaving her chest to drain fluid from her heart as it was healing, and she had PICC lines to supply her with medicine and other fluids. To this very day, she still has the scars from so many of those lines –into and out of her body.

But, the staff in the cardiac unit at Riley Children’s Hospital were amazing, helping us to feel comfortable, answering our questions, getting us everything that we needed. We came to know them by name, and they came to understand how deeply we cared for our daughter.

During that time, which amounted to about a month, we stayed with my brother and sister-in-law, who lived near Indianapolis at the time. We slept at their house and took shifts at Riley. Garrett and Sarah, our other children, were being taken care of by other family, back home.

The time that it took Lilly to recover from the surgery was about three and a half weeks. Part of that process was the healing of the heart after the surgery. Part of the process was Lilly, jumping through the individual hoops that demonstrated that she was on the road to recovery. One of the biggest of those hoops was the day that Lilly was able to breathe on her own, to be independent of the breathing machine that was keeping her alive.

She cleared this particular hoop, of course, on Independence Day –July 4th, 2007. Garrett was three years old at the time, and he’d come down to Indy to visit with us for the weekend. We played with sparklers in my brother’s driveway, to celebrate Independence Day. For my wife and I, Independence Day is always going to make us think of Lilly’s independence from the ventilator.

The rest of the story is pretty simple, really. Lilly made it, and has continued to thrive over these last thirteen years. Every year, in February or March, we make a trip back down to Indianapolis, so that Lilly can continue to be seen by the excellent staff members associated with the Riley Children’s Hospital. It’s worth the trip, every time, and I continue to be thankful for so much that so many did for our daughter.

It cost $1,200,000 to get my two daughters through their first four months of life –> worth every penny.