Posted: Nov 15, 2013 6:00 AM
 
November is National Prematurity Awareness Month, a time in which organizations such as the March of Dimes aim to raise awareness of the half a million babies born too early each year. As a mother to two of those babies, November gives me a chance to pause and reflect on my own journey through the NICU and beyond.

"How did you do it?" some ask, wondering how we coped with two premature babies in the NICU. I only have one answer: "It was our way of life."

Expecting the unexpected

When I found out I was suffering from severe preeclampsia, or pregnancy-induced hypertension, at 29 weeks, I was shocked. But then again, I wasn't. From my very first ultrasound, where we discovered I was carrying monozygotic/diamniotic twins, I knew my pregnancy was high risk. Resulting from one egg and sharing a placenta, but in individual amniotic sacs, mono/di twins aren't the most risky twin pregnancy, but my chance of developing complications was still high. The preeclampsia put me in the hospital at 30 weeks, where we tried to educate ourselves on the imminent NICU stay by speaking with nurses and taking a tour of the facility. My identical girls were delivered exactly a week later at 31 weeks, weighing just over three pounds each.

Overwhelming first days

No amount of literature or tours could have fully prepared me for those first few days in the NICU. Where do I stand? Can I touch her? What was your name again? Each twin had her own nurse, a different one each day, who greeted me warmly, then spewed mouthful after mouthful of medical jargon that my postpartum brain could not comprehend. Bilirubin lights, PICC lines, apnea, bradycardia. I could only nod, hoping that with time this information would eventually sink in.

Even though I was no longer sick, I now had two extremely tiny babies who weren't necessarily in the clear.

The nurses did their best to make me comfortable while I visited my babies. But that was just it. I was visiting my babies. I wasn't taking care of them. I didn't know how. I feared I would break them, or at best make a mess of all of the wires and leads attached to various parts of their bodies.

On day three, I entered the NICU to find that Claire's digestive system wasn't progressing. All of her feeds were being pulled right back out. And after two failed attempts to get a peripherally inserted central catheter, or PICC line, into her arm to deliver much needed IV nutrients, the nurse wasn't sure the doctors would try again, meaning she would have to have traditional IV needles stuck into her tiny veins again and again. This was when it all became real to me. Even though I was no longer sick, I now had two extremely tiny babies who weren't necessarily in the clear.

Way of life

Returning home with no babies felt strange. The last time I had been home, almost two weeks prior, I was pregnant. Now I was not, and had nothing to show for it. What was I supposed to do next? I couldn't just walk over to the NICU when I pleased anymore. I was so tired, yet I felt guilty for not returning to the hospital that evening.

The last time I had been home, almost two weeks prior, I was pregnant. Now I was not, and had nothing to show for it.

"Get some rest," urged the nurse when I called to see if they had enough milk to last through the night. "We'll see you tomorrow."

I immediately set up my pumping station. Babies or no babies at home, I still pumped every three hours, day and night, collecting valuable liquid gold to deliver to the NICU. This was the one thing I felt in control of, the one thing I could do for them.

I gradually became more comfortable as a NICU parent, thriving on routine to give me a sense of normalcy. I arrived around the same time each morning, washed up, delivered my milk, and said hello to each of my babies. A wonderful woman signed up to be our primary nurse, relieving me of the daily rotation. Jeannie showed me where supplies were kept and encouraged me to do as much of the daily care for the girls as I could, from changing tiny diapers to taking and recording temperatures. She coaxed me to start nursing when the girls were ready. Soon enough I was flipping through their charts, noting feed amounts or whether they had any heart rate drops in the night. I scooped them out of their isolettes for nursing sessions, or just to hold them while they slept. Some moms grow accustomed to life with a baby at home; I grew accustomed to life in the NICU.

Our Journey through prematurity- twins age 5- Rachel and Claire

Coming home

Rachel and Claire were discharged after 38 mostly uneventful days. Just like preparing for the NICU, nothing could prepare us for bringing two premature infants home. The rigorous care cycle was never ending: change, nurse, supplement, pump. By the end, it was almost time to start over again. Breastfeeding was difficult. I feared they weren't gaining enough weight. And they made goat noises when they slept. If they slept.

We learned to expect that they would meet milestones a few months behind their full-term counterparts. But they were healthy. And they did meet those milestones.

For their entire first year, the girls were small, barely registering on the pediatrician's weight charts. We grew accustomed to adjusting their age to compensate for their prematurity, subtracting two months from their actual age. We learned to expect that they would meet milestones a few months behind their full-term counterparts. But they were healthy. And they did meet those milestones. And eventually, we stopped counting.

Today my girls are happy, healthy 5-year-olds. They started kindergarten this past August, and one would never know that they started their lives nine weeks too early. I look back and can't believe the road that we have traveled, how far they have come. Our journey through prematurity taught us that even through life's unexpected curve balls, there is joy to be found.

More on life in the NICU

Parenting in the NICU
Benefits of kangaroo care for preemies
Advice for navigating the NICU

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