A mom’s story: 19 ounces of love

A mom’s story: 19 ounces of love

By Erin Mustoe

My 2-year-old daughter, Adeline, is a happy, feisty little girl who does everything with gusto. Then again, if you were born weighing only 1 pound, 3 ounces and spent your first six months of life in the hospital, you’d have to be a fighter.

“Addie” was born pre-term at 24 weeks at Silver Cross Hospital in New Lenox, one of Lurie Children’s partner hospitals. Because she was so premature, her lungs were underdeveloped. She needed advanced care, and was immediately transported to Lurie Children’s Neonatal Intensive Care Unit (NICU).

Lurie Children’s Division of Neonatology cares for more than 2,000 infants each year in the NICU at Lurie Children’s and the NICU at Prentice Women’s Hospital. The hospital’s neonatology program is ranked 11th in the nation by U.S.News & World Report

My husband, Andrew, immediately followed Addie downtown, but I had serious complications from childbirth. I spent 10 days in the hospital and another week recuperating at home before I was able to visit Addie.

When I first saw her, it was a shock. Addie was hooked up to all these tubes and wires, and her eyes were still fused shut. We couldn’t hold her because she was in an isolette – a type of incubator that provides controlled temperature, humidity and oxygen levels. There were arm holes so we could briefly touch her, but we were basically watching her through a box.

Addie had bronchopulmonary dysplasia, a form of chronic lung disease that affects most infants born more than 10 weeks premature. For most of the six months she was at Lurie Children’s, Addie was on a mechanical ventilator to help her breathe.

Addie also had openings between both her heart‘s two upper chambers and two lower chambers that would take time to close on their own. Additionally, she needed eye surgery for a blood vessel disorder common in preemies.  

It took a couple of months before I was cleared to stay overnight at the Ronald McDonald House near Lurie Children’s. We live in the far south suburbs, and Andrew would come downtown almost every day after work, visit Addie, stay overnight with me and then go straight to work.

As first-time parents, Andrew and I learned how to be parents in the NICU. Most people learn to parent their babies right away. We had to be parents through glass, and wait over a month to hold Addie.

Everyone was so kind in the NICU. Addie’s primary day nurse, Beth Laubenstein, was a huge advocate for Addie, and for us. Neonatologist Dr. Stephanie Marshall would go out of her way to check on Addie, and we also loved her colleague, Dr. Meghan Coghlan, ophthalmologist Dr. Hawke Yoon and surgeon Dr. Julia Grabowski, who placed and later removed Addie’s G-tube.

Beth was a big proponent of “Kangaroo Care,” a form of developmental care where you hold your baby skin to skin for hours at a time. This not only promotes bonding, it can also help regulate the baby’s body temperature, heart rate and breathing.

Recently, Lurie Children’s was one of two sites in a study to test the effectiveness of wireless sensors developed by Northwestern University researchers to replace the tangle of wire-based sensors that are the standard in NICUs today. The findings indicated that the wireless sensors provided equally precise and accurate data as that from traditional monitoring systems. The new sensors are expected to be in wide use at U.S. hospitals within two or three years.

The NICU team and other Lurie Children’s specialists care for your baby like she’s their own, and every morning when I got to the hospital I was guaranteed to find a volunteer holding her.

To see Addie today, you’d never guess what she’s been through. While she continues to undergo speech, occupational and developmental therapies, and has regular follow-ups with her specialists, she hasn’t shown any lasting effects of prematurity.

Addie received the best care possible because of Lurie Children’s and the people who support it. Without Lurie Children’s, I don’t know if we would have Addie.

Erin Mustoe is a kindergarten teacher in Chicago’s south suburbs.

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