Hi. I'm Janet. I'm 27, I'm a pharmacy technician in Tulsa, Oklahoma, and this spring my husband Robert and I learned a whole new language, the hard way, in a room full of beeping machines.

Our son Julius was born fourteen weeks early. He spent ninety-eight days in the neonatal intensive care unit, the NICU, and on the day he was supposed to be born, he came home.

When we were in the middle of it, I looked everywhere for other parents' stories. The ones I found helped me more than I can say. So this is ours. If you're reading this from a hospital family lounge at two in the morning: hello, I've been there, and I'm thinking of you.

I'm not a doctor or a nurse. I count pills for a living. I'm careful with words because the NICU taught me to be, but your baby's doctors know your baby. Ask them everything.

Our story | What helped | Corrected age | RSV season | NICU dictionary

Our story, week by week

Before. On Sunday, February 7, I was twenty-six weeks pregnant and painting the nursery yellow when the cramps started. By that evening I was in labor and delivery, and by that night I'd been moved to a bigger hospital with a NICU. They gave me two shots of a steroid, a day apart, to help the baby's lungs get ready. I'd never heard of that. I'm grateful every day that someone did.

Week 1. Julius was born on Tuesday, February 9. I saw him for about three seconds before they took him. The first time I really saw him, he was in an isolette, a clear plastic box that keeps babies warm, with a breathing tube, wires on his chest, an IV, and a tiny pair of sunglasses for the bili lights. He was the most beautiful thing I'd ever seen. He was also so small I was afraid to look. They had given him surfactant through the tube to help his lungs. I couldn't hold him. The nurses showed us how to do a "hand hug," one hand cupped around his head and one around his feet, very still. Robert cried in the parking garage. I started pumping milk that night.

Week 2. Every Tuesday became a birthday. One week old. His head ultrasounds were good. He started getting tiny amounts of my milk through a feeding tube that went down through his mouth. I mean tiny. I was so proud of every drop I took to the NICU freezer that I labeled them like they were going to the Smithsonian.

Week 3. He came off the ventilator and onto CPAP, little prongs in his nose blowing air to keep his lungs open. And on Sunday, February 28, day nineteen, our nurse Carol said, "Mom, do you want to hold your son?" Kangaroo care: Julius on my bare chest, skin to skin, under a blanket. He fit in the space between my collarbone and my heart. His oxygen numbers got better while I held him. I didn't move for two hours. I'd still be sitting there if they'd let me.

Weeks 4 and 5. The roller coaster. Nobody warned me about the roller coaster. He had an infection scare and needed antibiotics, and for a few days he needed more help breathing again. He had a blood transfusion, which they told us is very common for preemies and which still scared me to death. He had lots of A's and B's (see the dictionary). Our doctor, Dr. Peterson, said, "Two steps forward, one step back. That's the NICU." I hated that saying. It was true.

Week 6. His first eye exam, for ROP. Early changes, the mildest kind. They checked every week or two after that, and it went away on its own. I held my breath at every exam anyway.

Weeks 7 to 9. Off CPAP and onto a nasal cannula, a little tube under his nose with a trickle of oxygen. Bigger feeds. The first time he wore real clothes, a preemie sleeper his Grandma Judy bought, it was still too big. I had to roll up the sleeves twice.

Week 10. Tuesday, April 13: out of the isolette and into an open crib, like a regular baby. I bawled. The nurses said everybody does.

Weeks 11 to 13. Learning to eat. Preemies have to learn to suck, swallow and breathe all at the same time, which is a lot to ask of somebody who's supposed to still be inside his mom. Some feeds went great. Some ended in a brady and a nurse calmly patting his back while I forgot how to breathe myself. On Monday night, May 3, we sat in the family lounge and watched the news about the tornadoes outside Oklahoma City, all of us parents together, holding hands with people whose last names we didn't know. I've never prayed like that for strangers.

Week 14. The car seat test, where they watch his breathing for a while in his car seat to make sure he can ride home safely. The class on his apnea monitor and his oxygen. A night "rooming in" at the hospital, the three of us alone in a little room, doing it ourselves with the nurses down the hall. We didn't sleep. We were too busy watching him breathe.

Tuesday, May 18. His due date. Ninety-eight days after he was born, we buckled our son into his car seat, with a small oxygen tank and a monitor bag, and drove him home. Robert drove twenty miles under the speed limit the whole way. People honked. We didn't care.

Home. The apnea monitor went off about thirty times the first week. Twenty-nine of those were a loose wire. The thirtieth was a loose wire too, but I didn't know that until I'd jumped out of bed. The oxygen came off on August 17. And on Friday, September 10, his doctor said he didn't need the monitor anymore, and Robert unplugged the wires and held them up over his head like a trophy, and Julius laughed at him. His first real laugh. Then Robert cried, and I still can't tell you which of them was happier.

He's seven months old now, about four months corrected. He smiles at everybody. He grabs at his feet. He is perfect, and he is ours, and he is home.

What helped

• The nurses. Carol, Rosa, Peggy, and every night-shift nurse who let me call at 3 a.m. to ask how his night was going. They took care of him, and they took care of us. Learn your nurses' names. Ask for a primary nurse if your NICU does that.

• Pumping. It was the one thing only I could do for him. It's hard, and it's boring, and it hurts sometimes, and some days it felt like the only useful thing I'd done. Ask for the hospital's lactation nurse. If pumping doesn't work out for you, that's OK too. You are still his mom.

• The parent group. The hospital has a support group for NICU parents that meets on Monday nights in the family lounge. That's where I met Leslie, whose twins were born at 28 weeks, and we've talked almost every day since. Nobody else really understands. They do.

• The March of Dimes booklets. Our social worker gave us a stack of them. They explained things in plain English when I was too tired to understand the doctors.

• Writing everything down. I kept a spiral notebook by his isolette: his oxygen setting, his feeds, his A's and B's, which nurse was on, and every question I wanted to ask at rounds. It gave me something to do with my hands. Now it's his baby book, sort of.

• Robert. We took turns being the strong one. I don't know how anybody does it alone.

Corrected age, explained

This one confuses everybody, including grandparents. A baby born early is measured two ways:

• Actual age is counted from his birthday. Julius is seven months old.
• Corrected age is counted from his due date. Julius was born fourteen weeks early, so take about three and a half months off: he's about four months corrected.

When the doctor checks whether he's rolling over or sitting up, she uses his corrected age, because that's where his brain and body really are. Most preemies catch up over the first couple of years. So when somebody at church says "Isn't he sitting up yet? Mine sat up at six months," you can smile and say, "He's four months old," and keep walking.

RSV season is coming

RSV is a virus that, in most big kids and grown-ups, is just a bad cold. In babies born early, with small lungs, it can be serious. RSV season usually runs from the fall through the spring.

Since last year there's been a shot called Synagis that can help protect preemies. It isn't a vaccine; it's a dose of antibodies, given once a month through the RSV season. Not every preemie needs it. Ask your pediatrician if your baby should get it. Ours says Julius will start in November.

Besides that, here's our house plan for the winter: everybody washes their hands when they come in, no exceptions, Grandpa. No smoking anywhere near him. No visitors who are sick, even "just a little cold." No church nursery or crowded stores this winter. People will think you're overprotective. Let them.

To every NICU mom and dad reading this: you're doing better than you think. Hang on. Bring a sweater; it's cold in there. And go home and sleep when the nurses tell you to.

Read my NICU dictionary

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E-mail me, especially if you're in the NICU right now: [email protected]
Last updated Friday, September 24, 1999