The journey of Grace’s time with us begins at our last pre-natal class. Amy hadn’t felt Grace moving much that day. Through class she paid attention waiting to feel her solid foot make some contact. Class came and went and there was nothing. Since we were already at the hospital we headed up to the Neonatal Unit, our class nurse telling us we’d be out within 45 minutes and that way we’d sleep soundly. Up we went and a stress test ensued, her heartbeat was strong as always so we thought everything was okay but after 20 minutes she still wasn’t moving. An hour or so later on February 16th, 2016 at 11:41 our beautiful Grace Gabriella Manning made her grand entrance at 4lbs and 4oz, 8 weeks early. She was whisked away to the nursery before we could even see her. We knew it was best and she was being looked after by a great team but it was tough not to see her right away. Once Amy was in recovery Chris was allowed to go see her, she was beautiful and strong and he could already tell what a fighter she was. It had already been determined that she would be taken to Sick Kids and the team was already en route. The team arrived and got Grace all ready for transport while Chris was able to stay with her for a bit. They then did the most wonderful thing, wheeling her into the recovery room before leaving so that mom could say her first hello. Not the way we envisioned it but Amy would take whatever she could and was so thankful for their thoughtfulness.
Grace arrived quickly and promptly at Sick Kids in the wee hours of the morning on February 17th where she was taken to the NICU. We would later meet one of the incredible Nurses at Sick Kids, Nurse Stephanie, who was there that first night when Grace was admitted. She was with her all night, holding her hand, telling her how much mommy and daddy loved her and protecting her when the tests and needles got to be too much. Grace had been having seizures throughout the night and was still on a breathing tube but she was stable and strong. Amy was beyond ecstatic when she was finally released from the hospital, she couldn’t wait to finally meet her little Grace. She can recall Chris pushing her up towards her incubator, mom’s hands shaking she was so excited to see her little girl. She will never forget the smile and the joy in her heart seeing Grace and getting to touch her, hold her hand and kiss her beautiful face. As soon as she touched her little fingers she instantly grabbed mom’s finger and squeezed so tight. Amy couldn’t believe such a little thing could have such an incredible grip but man, Grace was strong, in every sense of the word. We still couldn’t hold her but we could be by her side.
And then our world came crashing down, two and a half days after her arrival we sat down with Grace’s medical team at Sick Kids with no idea of how our world was about to be shaken. Grace had been progressing well since her arrival and things looked to be on the upswing, or so we thought. That Friday afternoon the doctors received back the results of her MRI and it wasn’t good. They showed that she had no brain function except for her basic stem functions, the most basic functions we have. It was something she wouldn’t survive, the brain is the one thing that can’t recover from trauma.Their medical opinion was to take her off all supports and hope that we would get to spend some time with her. We looked at the doctor through the blurriness of the tears pouring down our faces thinking maybe we had heard it wrong, but the look in the doctors eyes and the silent tears running down the nurses faces confirmed we had not. We were never prepared for those words, or for the outcome that lied ahead. We had only just met Grace, how could she be leaving so soon. The world came crashing down and our hearts were broken into a million pieces.
The next few hours were a blur. Our families met us at the hospital and we got to hold Grace for the first time. Although Grace had passed her breathing test they couldn’t say with certainty that when they removed the breathing tube she would breath on her own. The incredible nursing staff had secured us the Family Suite which had a bed and a bunch of chairs so that we could all spend whatever time we were going to get together as a family. We all piled into the room Mom and Dad holding Grace tight, cuddling her, hoping we would make it through the night. We have never been so happy to see a sun come up or to see 6am as we were that Saturday morning. We had made it through the night and that meant Grace was going to give us some time, some precious, precious time.
Grace had made it through the night which meant more decisions, Nurse Practitioner Jennie and Nurse Stephanie sat down and compassionately walked us through the next steps. Amy had asked about taking Grace home as the reality of what was to come began to sink in. The thought of having to spend anymore of her precious days in a hospital and knowing that it would be the only place she lived in her short life was something we couldn’t stand. This is when we were told about Emily’s House. Right away we knew it was where we were suppose to be; it gave us the space and the feeling of home, but with medical staff close by if we needed them, and for when the time came. While we waited for the paperwork and administration side that needed to be tended to, Nurse Stephanie suggested that maybe Grace would like to try chocolate or maybe go for a walk outside. We were both a little stunned: we could do that?! Well, that just got the ball rolling and from there on the ideas of adventures we could share with Grace just kept rolling in.
Arriving at Emily’s House we were both a little nervous and hesitant. It was a new place, with new people. What would it be like? Would we be happy there? Would we feel like a family there? We walked through the doors and I knew we were home. We were greeted by warm friendly faces, staff oooing and awwwing over Grace, her little features, her baby smell. For the first time, Amy got to feel like a mom. They made us a wonderful home cooked meal, a delight to all of our stomachs after days with minimal food. We were home and it felt great. Grace was happy and content and we will never forget what it felt at the end of the day to curl up with her and just cuddle her until the wee hours of the morning. It was the best feeling in the whole world. We were a family, making memories and filling our hearts with love.
Over the next five days we lived life to its fullest, pouring as many memories and as much love as we could into Grace’s life. The staff and volunteers at Emily’s House were incredible helping us to make so many amazing adventures happen. From a princess birthday party with friends and family, to watching the stars and moon. Playing with sparklers and watching Aladdin. Afternoon strolls through the park to a hockey night with daddy. Road trips, shopping and family meals. A beach day and being cuddled non-stop. In this world Grace only knew love.
And then it was time, just 8 days after making her debut into this world it was time for her to leave us. On Wednesday February 24th our sweet baby girl left us. Her wings were ready but our hearts were not.