I’ve had three live births, all three were preemies. They were all born at very different gestations with very different needs. Having a sick child isn’t easy. Seeing your newborn baby struggling to breath is one of the hardest things in the world.
We all have these visions of what having a child might be like. We’ll be in the hospital a day or two and then we’ll put our precious babies in the car and take them home. We’ll dress them in all of the clothes we spent the last nine months buying and then put them to sleep in their cribs.
My kids were born at 32 weeks, 23 weeks and 28 weeks. I’ve spent tons of time in the NICU. A total of over a year of my life has been spent looking at my babies with tubes and wires. There were good days as bad days. There were days I could touch and hold my babies and days I couldn’t. There were days I couldn’t see them at all. If I had the slightest sign of a cold, a sore throat or any sickness I had to stay far, far away.
My first son was born when I was 17 years old at 32 weeks. He was big for his gestation and did surprisingly well. I remember another NICU mom walking by my son’s little bed and saying “He’s way too big to be here!” I was thinking the same thing. I didn’t understand why my child was tied down with IVs and breathing tubes. Every time they’d poke him with a needle it made me angry. He looked like any other healthy baby. He was a solid 6lbs. I didn’t want any of this. I wanted to take my baby home and put clothes on him. I looked at him laying there in a diaper and day dreamed about picking him up and running out of there with him. I couldn’t do that. I’d probably be arrested. Looking back now, I know my son needed to be there. As a 17 year old it was more of an inconvenience than anything. He was sent home a couple weeks after he was born. Up until that point in my life, it was the hardest thing I’d ever gone through.
10 months later I had a daughter. A really tiny, really sick daughter. She was 1lb, just barely. I was terrified. This wasn’t anything like my son’s NICU stay. This was seriously serious. Her skin was transparent. I could see her ribs and her heart beating under them. I saw her struggling to breath even on the highest ventilator settings. The doctors told me the chances of her surviving was about 10%. The chances that she’d survive without any serious brain injury was next to nothing, less than 1%. They told me they could pull all medical intervention and she’d fall asleep. She’d peacefully go to sleep and not wake up. They quoted statistics of all these babies born this early. They told me most relationships don’t make it through having a child as sick as her. I didn’t care. We were going to try. We were going to do whatever we had to do. Eventually they stopped even asking for me to let her go. They got the same answer a thousand times. “No.” If at some point I thought it was hopeless or I saw that she was suffering too much I would’ve considered it but everytime I looked at her I saw a fighter. I knew she’d make it. The day we hit the 90 day mark was a good day. I remember them telling me the day she was born that we’d be mostly out of the woods after 90 days. I walked into the NICU and saw all the familiar faces. The mothers that have been there for weeks, the nurses that had been there long before we had been. There was no privacy in this NICU. There was nothing separating one baby from the next. There were no walls or curtains. There were “pods”. It was a step down unit. As the babies got better they were moved to different pods until they were discharged. My Kayla spent a lot of time in the first pod, the critical pod. She was still there when she turned 90 days old. I felt hopeless walking into that room. “She’s never ever going to get out of this pod.”
That day, in that pod a baby born bigger and healthier than my own died. There was chaos, there were a million doctors and nurses doing everything they could to keep that child alive. They left the baby laying there. Alone. I heard them call the parents. They told them they didn’t need to rush, there was no emergency but they should get to the hospital as quickly as they safely could.
When the father of that poor child walked in and saw that his first and only child had died, it ripped my heart out. The fact that he had to find out in a room full of people, in a room full of living babies had to have been so awful. I still think of that family all the time.
After that, I took one day at a time. One minute at a time. The was no guarantee that I would ever bring my baby home. I sat in the rocking chair beside her, watched her monitors like a hawk.
She did eventually move on to all the other pods. The last pod was the hardest. Unlike with my first child, I was happy to have her there. I wanted her to stay. I didn’t know how to care for such a sick child. I felt that as long as she was there, she would live. There were doctors there. There weren’t doctors at my house. I made up every excuse for her to stay. There were classes parents had to take in order to bring their babies home. I avoided them like the plague.
9 months after she was born, she was sent home on monitors and oxygen. If she ever stopped breathing the monitor would beep. LOUD. I didn’t feel comfortable holding her, she could get sick really easily. Her immune system was severely compromised. We had a few bumps along the way but she’s a fiesty little thing and she’s still as dramatic as the day she was born.
12 years after that long, long and scary journey, my husband and I had another daughter another tiny girl. She was double her sister’s birth weight, 2lbs. I was prepared for another nightmare. I was prepared to talk all the doctors out of pulling the plug. I was prepared to fight along side my little girl.
Kennedy’s NICU stay was nothing like Kayla’s. We had our own private room. We were allowed to be there as much as we wanted. We could even spend the night with her. It was still difficult and frustrating. She’d gain an ounce and lose two. She’d have a great day and then a terrible day. She was taken off the ventilator and put right back on. It was a rollercoaster ride.
I watched her monitors. I asked a million questions. I cried. I laughed. I loved this baby beyond words. I waited for her for a long time. We tried for months and months to have a baby. There were lots of negative pregnancy test and losses.
We came really close to losing her. She contracted RSV. She couldn’t breath. She turned blue. I watched a grown man cry at the sight of my pitiful baby, her respiratory therapist, he came in to do a treatment, she was struggling so hard. It was hard to watch. He walked into the hallway and cried for her. We spent her first Christmas in the ICU. We spent days, weeks, months sitting in a hospital room. She came home on New Year’s Day of 2015.
I thank God everyday that I have 3 beautiful, happy and healthy children. I thank God for all of the doctors and nurses that saved my children. Having a premature baby is the best worst thing that could happen to someone. It’s amazing to watch a helpless tiny baby grow into a normal, heathy child. It’s like watching a pregnancy from the outside.
The people you meet, the stories you hear, the bond you create with your child are all amazing. I am proud to be a mother of 3 preemies. They’re strong. They’re fighters. It’s unlike anything else in the world.