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Children's Care Fund Testimonial

Arlo 3

Arlo's Mother, Erin

Arlo Alva Carter was born a few weeks before his due date on July 18, 2023. I had preeclampsia, so it was decided that an induction at 37 weeks was the safest option for everyone.

Arlo had not shown any abnormalities on any genetic screenings or ultrasounds. After two days of trying to induce labor, little progress, and rising blood pressure readings, we headed to the operating room for a C-section. Arlo was born at 7 lbs 13 oz, significantly bigger than most of his NICU neighbors, but in need of plenty of loving care from the NICU team at UPMC Hamot nonetheless.

Arlo was quickly whisked away to the NICU when it became clear that he was unable to breathe on his own. The hardest part about the first several hours of his life was allowing the NICU team to do their job in caring for him while I was stuck floors above him being treated for my own complications post-birth. Most people think about the immediate days and hours following birth as full of snuggles and staring at your baby's tiny features in awe. I didn’t see Arlo’s face in person until he was 16 hours old, and I didn’t hold him for the first time until he was two days old.

Arlo's lungs were not functioning properly because he was born without surfactant. He was given a dose of artificial surfactant and supported by several different breathing apparatuses for the first week of his life. It quickly became apparent that his breathing was not the only issue we were dealing with. We affectionately called Arlo, the floppy baby because of his low muscle tone. He could not lift his head; if you lifted his arms or legs, they would flop right back onto his crib. This also affected the muscles in his mouth, causing issues with feeding from a bottle.

There was no clear indication of what was causing Arlo’s issues, so the NICU staff became medical investigators. They consulted with genetics, neurosurgery, gastro-intestinal, and cardiology doctors. Our baby was poked, prodded, scanned, and examined in what, at the time, seemed like every way possible. When tests came back negative, it was like a double-edged sword. We knew what wasn’t causing his issues, but the unknown lingered in a heavy way. In a quick flash forward, Arlo will be one on July 18th this year, and we still have many unanswered questions.

Arlo stayed in the NICU for 32 days. He was in bed one, which is directly to the right as you walk in from the NICU lobby. Being right at the front of the NICU, we saw every NICU graduation and longed for the joy and relief those parents felt. My husband and I never admitted it to each other until Arlo was home, but we both had days when we walked to the car and drove away, wondering if we would ever get to take our baby home.

We worked with Occupational and Speech Therapy to build up Arlo’s strength so he could eat from a bottle. We also needed him to gain weight because he was burning too many calories from labored breathing. We celebrated so many tiny victories along the way, counting the milliliters he would eat, experimenting with bottles, practicing sucking with pacifiers, and tracking the grams he would gain daily. The NICU staff humored our middle-of-the-night calls to see how much he ate and the weight he gained as we struggled to balance our time between him and our three-year-old daughter at home.

On day 29 in the NICU, Arlo showed his spunk and mustered up the strength to pull his feeding tube out of his nose. He was so close to eating enough by bottle to not need the tube for supplementation that we took the chance to see what would happen. Arlo proved he was ready to go home, meeting the final requirements for his NICU graduation.

We always knew the NICU was just the first step for Arlo. When he came home, his calendar filled up quickly with appointments. We’ve followed up with specialists to continue to rule out possible causes of Arlo’s delays and have been working with occupational and physical therapists to ensure he gets the support he needs to meet his milestones. Arlo is nearly one. He can crawl, loves to snuggle, admires his big sister, and shows us strength and determination every day.

There is not a day that goes by that I don’t think about the UPMC Hamot NICU Staff. They truly pulled us through some of our darkest days. I will forever be grateful for every moment of care they provided Arlo and our entire family. It takes a special group of people to provide that level of incredible care.

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