Leaving our baby behind was one of the hardest moments of our lives.

My wife labored for 24 hours with our first child  — the last four spent pushing. It was a traumatic birth and I felt helpless. “Do you need ice chips? Chapstick? A pillow fluff, perhaps?” She was doing all the work and all I could do was hold her hand and tell her she had this, I loved her and everything was going to be okay.

And at first, we thought it was. Our son was born at 3:30 in the morning. His weight was normal, but the doctors were concerned when he wasn’t crying (my wife sure was). Instead of placing him on her skin, they moved him to a nearby operating table on the opposite side of the room. She laid there being stitched up, the only one in the now-crowded room not able to see her baby. She kept asking, “What’s going on? Is he okay? Can I hold him?” 

A team of scrubs surrounded him, one of them forcefully tapping on his back with two fingers in an attempt to achieve some airflow. Each tap felt like I was getting punched in the gut. After the longest minute of my life, finally, a noise. He let out a faint, but steady whimper and the whole room breathed a sigh of relief. They only let her hold him for a few minutes before nurses whisked him away to monitor him in the nursery — something not atypical for high-risk pregnancies. This allowed us a few hours of much-needed sleep. We thought the worst was over; we were wrong.

When we woke up, one of the nurses informed us that our little man experienced a neonatal seizure overnight and was being monitored in the NICU. Wait. What? 

We found out later these can have many causes, including lack of oxygen before or during birth, an infection acquired before or after birth, bleeding in the brain or blood sugar/electrolyte imbalances.

Each step down the white-tiled hallway seemed like a mile. The fluorescent bulbs highlighted my wife’s face as she twisted her cheeks to dam the tears. She was far from recovering from childbirth, both physically and emotionally. She could barely go to the bathroom by herself — let alone deal with the potential life-threatening diagnosis of her firstborn child.

It’s hard to describe the range of emotions we felt when we saw him. Hooked up to machines, wires, monitors and wearing nothing but a diaper, he lay sleeping in a plastic box, unaware of how our world was now turning in the scariest of directions.

When You Have To Wait To Hold Your Baby

Denied discharge, it would be at least a week more before he broke free from the shackles of EEG monitoring. He needed to feel our soft touches. He needed to hear our voices while we read him stories, told him about his new family, and softly sang, “You Are My Sunshine.” After a few days, we were able to hold him due to a pause in neurological testing requiring him to stay in his pod. Still hooked up to the wires and cables, it felt more like holding an explosive device — our little love bomb. I’ve never been so nervous and happy at the same time.

My wife and I walked past the NICU front desk countless times; we were regulars. The symphony of nagging beeps, chirps and nurse chatter had become our new normal. Professional photographers came through trying to book appointments to sell us photos of our precious little one during brief moments when his eyes were open — the last thing we wanted.

Days went by; we eventually became comfortable enough to open up the floodgates to the caravan of visiting aunts and grandparents, who were shuffled in one-by-one on a tight schedule. He didn't need immediate surgery and spent only a week in the NICU — nothing compared to the long weeks and months that some families endure.

We were finally able to check into a room in the Children’s Hospital. It was a room full of firsts: the first time we saw him open his eyes fully, the first time we swaddled him, changed his diaper, soothed him back to sleep, heard him hiccup and — most importantly — it was the first time we got to hold him without any wires attached.

WHAT WE WERE TOLD 

Doctors ruled out a few major things like epilepsy, but we were told they found a “brain abnormality” after doing a scan of his head. The vagueness of this term was frustrating, and was intentionally worded that  way to reflect the lack of definitive answers they had for us. They told us it’s something that could go away and be completely fine, or it could grow and become a greater concern. It was a lot to take in.

After almost two weeks of neurological exams without any sign of seizure activity, the doctors were finally ready to prescribe Keppra medication and send us on our way. Each step down the hall was its own victory lap. I made a final sweep to gather our many belongings, as we had practically moved in.

Out the doors and into the elevator, it felt scandalous and exciting all at once to be alone with our newborn. There was something so special about the last time we walked out of the hospital, the first time we stepped outside as a trio. The nurse we had grown so fond of joined us to make sure we made it out okay.

Driving away, we finally left behind the constraints of the NICU and welcomed the free feeling of the crisp, December air. Fighting the daily dread of the hospital walls, we learned how to care for our son on our own — and we discovered he was stronger than his diagnosis. After eight months, we weened him off his seizure medication. He hasn’t had another seizure since that fateful first day and is now a very happy (and busy!) soon-to-be 2-year-old.

Once again, we were lucky; most NICU parents have much more challenging experiences. Not getting to hold our baby those first few nights was one of the hardest things we’ve had to go through, but now we see it was just the beginning of one of the greatest achievements of our lives. The birth of our son was but a brief moment in time. And now, the rest is all that matters.

How to cope if your baby has to spend time in intensive care:

Do your research
If your doctor has privileges at multiple hospitals, and there's a chance your baby may require intensive care (say, you're having twins or you have a history of preterm deliveries), check out the facilities at each hospital's NICU before you decide where to give birth.

Prepare for a range of emotions
Once your baby is born, the mix of emotions that you'll experience, including elation that he's finally here and anxiety over his health problems, can be overwhelming. Many well-meaning friends and relatives will urge you to stay positive and be strong, but it's okay to feel sad and even to feel jealous of moms whose babies are born without complications.

Get to know your baby's doctors
The best way to stay on top of my son's changing health status — and to get all my questions answered — was to be by his bedside for our doctor’s morning rounds. It can be a little intimidating to see multiple doctors swarm into the room (depending upon what’s going on) spitting out indecipherable numbers and medical jargon, but it's also reassuring to know that your child is in expert hands.

Build a support network
It can be difficult to connect with friends and family who have never had a sick baby, so try to surround yourself with people who can relate. Your hospital may have a special group for parents with babies in the NICU.

Start bonding right away
You can form a powerful connection with your child even though he's in an incubator. Ask to change his diaper, give him a bath whenever possible and read your favorite children's books to him.

Accept help from others
Websites like mealtrain.com and lotsahelpinghands.com can help organize the efforts of friends and family members. Don't be shy about asking for other favors beyond meals, whether it's a sleepover for an older sibling or help with a few loads of laundry.

Create a home away from home
If it's not against hospital policy, put family photos on or around your little one's incubator, bring in a small lovey or colorful swaddling blanket, and dress your baby in those cute outfits from your baby shower (snap-up pajamas work best around all those wires).