November is Prematurity Awareness Month, and it’s also Madeline’s birthday month. I am missing my oldest girl so much. We should be preparing for a ninth birthday party and a house full of third graders. When November rolls around, I have a lot of flashbacks to our time in the NICU with Maddie. I’m reposting a piece I wrote two years ago about what it’s like to be a Preemie Parent. If you know a Preemie Parent, reach out to them today. Let them know you’re thinking about them, and their child. No matter how old their preemie may be, they’ll never lose that lingering fear, never forget the smell of the NICU soap, never forget how small or sick their baby once was.

early days
Madeline, four days after she was born. She’d just had her forehead IV removed, and was on a ventilator, IVs, umbilical cath, pulse ox, chest tubes, and was extremely swollen from the fluids being pumped into her body.

The first time I was told my child was going to die, I was about seven weeks pregnant. There was no way of knowing it then, but those words started me on my path to becoming a Preemie Parent.

The next time I was told my child was going to die, I was nineteen weeks pregnant. My water had just broken, and my doctor gave my baby almost no chance for survival. A few weeks later, that doctor reminded me that termination was an option. Mike and I told her no.

When I was admitted to the hospital on bed rest, the doctors didn’t say my baby was going to die, but they never said she was going to live. The statistics were against her, you see. Babies who PPROM at 19 weeks rarely survive, and those who do have a host of problems. But I’d beaten the odds by not immediately going into labor, and I was certain my baby would beat the odds, too. The doctors told us they’d likely take the baby at 30 weeks gestation, so that was our goal.

I read everything I could about NICUs and premature babies. Being the parent of a premature baby is something no one expects. Your typical expectant parent doesn’t stock up on preemie clothes and diapers, or research medical terms and nutritional techniques. Even though I had some time to educate myself, I was completely unprepared for NICU life – especially Madeline’s introduction to it.

The doctors decided to give me an emergency c-section in my 28th week of pregnancy because I was passing blood clots. They feared I was having a placental abruption, and delivered Madeline over eleven weeks early. Because my water had broken ten weeks before that, Madeline’s lungs were developmentally on par with a 24-25 week baby. It was dire. They transferred her to another hospital with a better NICU. They told me she was going to die.

She made it through the night, but every time my phone rang the next day it was someone telling me she was going to die. Again. For her first two weeks in the NICU, she almost died every day. She was the sickest baby in the unit by far, with two nurses constantly dedicated to her care.

We lived minute to minute. I planned her funeral. I learned metric measurements. I scrubbed my hands under scalding water every time I wanted to see her. I filled a notebook with numbers and abbreviations (SAT, VENT, TEMP). I wondered what color her eyes were. I was afraid she’d die before I could hold her. I memorized every single medication and dosage schedule.  I watched her eyelashes grow in. I asked questions, so many questions. I learned when to use my voice and how to be an advocate for my child.

This is the typical life of a preemie parent in the NICU. You make sure you’re there for rounds. You ask when tests are going to be run, and you learn how to read a head scan or lung x-ray. You ask about diuretics. You love the nurses so much. You pump and hope the tiny bit of milk you eek out can help you baby. You live for the moments you get to do normal things like change a diaper or give a bath. You know the NICU is a roller coaster so you’re constantly waiting for something to go wrong. Holding your child is a luxury. You often feel like you need permission to interact with your baby.

Madeline was in the NICU for ten weeks, and we saw a lot. Babies came through with conditions I’d only seen on the Discovery Channel. Babies had medical emergencies and everyone would be kicked out of the unit. Sometimes it was my baby with the emergency.

Sometimes babies died, and I was reminded how close we’d come, and how far we’d come.

Prematurity doesn’t go away after NICU discharge. It follows you to pediatrician appointments and clinic visits. It’s on your insurance forms, and sometimes on school paperwork. It impacts your child’s life for the rest of their life, even indirectly. It also impacts your other children; they might have been full-term but you realize how fragile life is. You’ll never look at anything the same after you’ve held your tiny baby in your hand.

Next week is the eight year anniversary of the day I became a Preemie Parent. Even though my Madeline is gone, her premature birth is still a driving force in my life. She was born during Prematurity Awareness Month, eleven weeks too soon. We got seventeen wonderful months with her, but in the end, prematurity was a cause of her death. In the United States, over half a million babies are born too soon – that’s one in every nine births. Way too many. This has to be stopped.

Every year on Madeline’s birthday I hope there will be a medical breakthrough that helps end prematurity. It’s too late for my Maddie, but it isn’t too late for Annabel and James. I never want them to know what it’s like to be a Preemie Parent. I never want them to hear the words, “Your child is going to die.”

my Madeline
Madeline, four days before she got sick.