Entry 1

Percy at rest
Percy at rest

My daughter Percy was born two weeks ago yesterday. And because she showed up three months early, there are still about 11 weeks to go until the day she should have been born. My wife Shona and I had planned to use the last trimester to make the spare bedroom into a nursery, take some parenting classes, and go on one last just-the-two-of-us vacation to Hawaii. Instead, my precocious little girl arrived on her own schedule, and my wife and I have spent the last two weeks camped out next to an incubator in the Neonatal Intensive Care Unit. Even if everything goes perfectly, Percy won’t be ready to come home until at least her due date in mid-January.

I knew that becoming a father was going to change my life, but I wasn’t expecting that it would be like this. The birthday of your first child should be exciting, jubilant, and full of high hopes and dreams for the future. I didn’t have any hope that day, only terror. I didn’t know if she’d live through those first hours, and I wasn’t even sure that we were doing the right thing by fighting to keep her alive. On a day of celebration, the only thing I felt was sick to my stomach with dread.

When she was born she weighed 1 pound and 15 ounces. At weigh-in yesterday I saw that she’s put on a little over 2 ounces since birth, but she’s still almost indescribably small. Her entire hand is the size of a penny. Her toe is a grain of rice. My wedding ring fits up and over her knee. Her skin is so thin that you can see every blood vessel and almost make out the organs below. She’s tiny, but she’s perfect. All of her parts are completely formed: She’s got eyebrows, fingernails, a minuscule tongue. Twenty-seven weeks of gestation is near the lower limits of fetal survivability. I’ve always been staunchly pro-choice, but when you see a baby this small you can’t help but wonder when life really begins. When Percy was born she couldn’t breathe, open her eyes, or control any of her muscles. Babies younger than this are often allowed to make a “compassionate exit,” but at 27 weeks there are no longer any choices to be made, and the full assault of a modern medical campaign rolls into place.

Percy's machines
Percy’s machines

At this point Percy’s survival is more a feat of engineering than anything else. She doesn’t have a single bodily system that works right, and she’d never make it on her own. A baby this small is like an astronaut on Mars. The outside environment is toxic to her, she can’t find anything to eat, and she has to have a constant flow of pure oxygen to survive. Machines have total control over her life right now. She lives in a climate-controlled Plexiglas box that’s shaped like a sneeze-guard. The nurses spin dials and calculate drug-infusion rates to try and replicate conditions in the womb. Alarms ring constantly whenever one of her vital signs swings above or below narrowly defined parameters.

Minutes after she was born the doctor dropped a tube into her throat and set the ventilator to breathe for her, regular and constant, hiss after hiss after hiss. Her arms are too small for a regular IV, so the nurse practitioner started two lines in her umbilicus and one in her head. The one on her scalp isn’t like the regular IV an adult would have. Instead it’s a long catheter that threads down the side of her head, through her internal jugular vein, and terminates just a few millimeters above her heart. She’s lying naked under high-powered lights in order to jump-start her liver. Soon she’ll need a blood transfusion; the few drops of blood that have been drawn for her labs are enough to deplete her supply to dangerously low levels. They hung a bottle of white fat on her IV tree for calories, along with a bag of something that’s neon and yellow and is supposed to give her nutrients. They were so busy worrying about her lungs that they didn’t feed her at all for the first few days. The first time she ate they threaded a tube directly into her stomach and gave her 1 cubic centimeter of milk. One cc. There are 355 cc’s of liquid in a can of soda. She seems to be doing great, though, and I think she must be hungry because yesterday they increased her feedings to 11 cc’s every three hours. She’s been making fantastic poops ever since her first meal, and I haven’t been this excited by bodily fluids since junior high.

A person this young shouldn’t have to endure indignities like this. It’s not fair. She should be drooling and burping and keeping us up all night, not suffering this endless poking and testing. They’ve given her steroids to mature her lungs, Dopamine to steady her blood pressure, Lasix to make her pee, caffeine to fire her up, and morphine to calm her down. When she gets wild they tuck her hands under the blankets so she can’t hurt herself.

I feel as helpless as she does, and it’s awful. I’m a big strong man. I fight fires and rescue people for a living. But there’s nothing I can do to help my own daughter, no solution I can create out of muscle and determination and courage. I’ve got these thick, clumsy hands and I’m terrified that I’ll break her, that I’ll pull her legs out of their sockets like chicken wings when I’m changing her diapers. The only thing I can do is sit for hours next to the incubator, my hand barely touching her head, willing my love to flow into her. I can already tell that she’s tough though, small and mighty like her mom. She pulled out her breathing tube twice and yesterday she made a fist and punched my thumb when I tried to take her temperature. I still get scared every single time I think about her, but now there’s plenty of hope mixed in as well. She’s my daughter, and I’m going to do everything I can to make her life better from here on out.

All in all she had a pretty good 14th day. She slept a lot, had some milk, and I read her a story through the porthole in the incubator. All of the nurses tell us to enjoy these good days while they last. They tell us it’s a roller coaster, and we’re still only on the first incline. They tell us they’ve never seen a preemie this small that didn’t suffer a few terrifying drops before going home. Even on the good days Shona and I are so on-edge that I can’t imagine how we’re going to cope with the setbacks. Percy is at risk for lung disease, bleeding in the brain, and catastrophic blood infections. Since the infection is the only thing that I can even pretend to have control over, I’ve rubbed my hands raw from the constant washing and disinfecting. I’m terrified to breathe on her. My daughter is 2 weeks old, and I’ve never even kissed her.