Children's Care Fund Testimonial
Amelia's Mother, Candace
Amelia Roberts was born to Candace and Gregory Roberts on June 2nd, 2023, at 26 weeks gestational age and would go on to spend 115 days in the NICU at McGee-Womens Hospital at UPMC Hamot.
How does one even begin to summarize nearly four months of time into just a few paragraphs? Nearly 6 months since being discharged, when you look back at the experience, it all becomes blended together but with the monumental milestones standing out.
She was born prematurely because of placenta previa but it was the heroics of her mother, grandfather, the EMS crew at West Lake Fire Station, the nurses and doctors at Hamot, and the NICU staff who brought her into this world safely (Amelia’s dad was 8 hours away at the time of her birth).
The first weeks of Amelia’s time in the NICU were the hardest. Her vitals seemed to rollercoaster up and down. The alarm bells became the sounds of nightmares to us. We wanted nothing more than to be able to hold her and comfort her. The first time we got to hold her was an unforgettable experience. Candace held her while Gregory held a mirror for Candace to be able to see Amelia on her chest because we weren’t allowed to move Amelia once she was positioned. Even if we wanted to move her, it would be a multi-person job with how many tubes and wires had to be moved with her. Eventually 6:00 PM became our favorite time of day because that was the time we could hold her.
As the weeks progressed in those first few weeks, we got to have many more firsts with Amelia. We got to push breastmilk through a syringe to feed her, give her lip and mouth care, change her diaper, and make sure she was snug inside her isolette. We’ll always remember that she opened her eyes for the first time on Father’s Day (setting the bar way high for future Father’s days). Her eyes where just black and you could see a slight grey where the irises were developing, but they were and still are the prettiest eyes ever.
It was extremely difficult to have Amelia inside an isolette (incubator in laymen terms), other than her care times (at 12 AM, 6 AM, 12 PM, 6 PM) we could only sit next to her covered up isolette and watch the monitors of her heartbeat and oxygen. The stress on our faces must have been noticeable as a truly wonderful nurse ended up having a hard conversation with us telling us it okay to go home and get some rest, to paint the nursery, and eat a real meal. And while that conversation brought us to sad tears, it is a moment we look back on and are forever grateful that it happened. It truly kept us from spilling over the edge.
As Amelia got stronger, her care times eventually changed from every 6 hours to every 3 hours and that was the most exciting news for us. It meant we had more opportunities to change her, take her temp, provide mouth care, and get some parenting time. We felt like pros after a couple of weeks. Soon after she didn’t need to have her isolette covered either, which meant we could marvel at her endlessly. It was in this timeframe that we finally got to start dressing her and we even got to give her first bath. Candace was over the moon while Gregory was terrified because it meant a few moments without monitors attached.
Eventually Amelia was in good enough condition that she didn’t need the “big room” of the NICU and we were moved to another room so that a future baby in need of more machines, and more staff at the same time, could have our old space. This felt like a big step forward for us but we also had several steps back during this time of our NICU stay. Amelia developed a chronic lung condition which meant more time with a CPAP which meant pushing back attempts at bottle and breast feeding. However by August 2nd, we had one of our biggest leaps forward into an open crib. There is a newfound joy in being able to hold your child whenever you want.
Moving to an open crib really felt like the finish line was close which made the next 52 days feel the longest. Traveling nurses who had said their heartfelt goodbyes to us had rotated back. One nurse who left for maternity leave had also returned. Our NICU milestones once felt so rapid and now had slowed to a crawl as we waited for Amelia to finish her last two requirements: feeding on her own and breathing on her own. Every day began to feel the same as adjustments in Amelia’s care were miniscule changes that seemed to follow the pattern of two steps forward and one step back. That’s when Candace and I really noticed how uncommon a long stay like ours was as we saw more and more families come and go. Again, it was the nurses who help keep Candace and Greg lifted. They had become more than just caretakers of our daughter and had become a second family. In the quiet moments of the NICU we got to tell stories and jokes and invent ways to have fun in our little corner. We had a polaroid camera that the nurses would take pictures with and hang around Amelia’s space alongside our own decorations of milestone cards and Star Wars nicknacks.
Amelia had begun to show signs of torticollis and was still struggling with “suck, swallow, breathe” but with the incredible work from the Speech and Occupational Therapists we were eventually able to overcome these. The therapists had shown us exercises, stretches, and mouth care techniques that we could do with Amelia daily to help move her along. A swallow test was eventually ordered and showed that milk was leaking into the trachea causing her to choke bad enough for her vitals to spike every which way and she would need to have her milk thicken when she was developmentally old enough (42 weeks gestational age).
By day 100, Amelia was affectionally referred to as the senior citizen of the NICU (and sometimes the boss of the NICU). OT had brought playmats for us to do tummy time with her and the nurses wanted to try something new with her; venturing outside the NICU. The first trip was just inside and around the NICU floor with her in a stroller and mom, dad, a nurse, and a mobile monitor going to the windows for Amelia to feel the sun shining through for the first time since birth. The second time was outside to the healing gardens at Hamot. She was wheeled down in an isolette to the garden but once outside she got to be held by her mother and enjoy the fresh air and sunshine. This moment seemed to push Amelia across the finish line as within the week she was ready to leave the NICU.
We got to finally have our nesting experience. One night, no monitors, and nurses checking in just to see if we were doing okay. Nurses and doctors had started to come to say their tearful goodbyes, some even came in on their day off just to say goodbye. The morning of our NICU graduation, we got the most incredible send off. They had made Amelia a graduation cap and gathered everyone available to come see us off complete with a commencement speech and many, many tears and hugs. It’s funny that this is a time that Amelia will never remember and we will never forget. The NICU community is not one that you ever want to be a part of, but once you are it is the best community there is. We are forever grateful for the doctors and nurses we have met, many whom have stayed in our lives. And we are thankful every day that Amelia really just needed more time, and that the doctors and nurses at Hamot were able to give her that needed time.
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