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  • Justina

Day 3 - Our Last Walk to the NICU

The moment we woke up I couldn't wait to go see our boy. No phone calls - that's a good sign they said. We arrived to the NICU and all seemed to be well. The doctor was doing his normal rounds on the unit and came to provide us an update from the night.

"We did a brain scan on Carter last night," the doctor said. We were told a scan is always done at day 7 on micro preemies, and if it's done any earlier there's a reason. My heart dropped. He pulled up chairs, a table and a sheet of paper to draw on. He wanted to give us an update on the main organs overall. "Let's start with the heart…" What? You just said you did a brain scan. He shared information about a heart valve. I couldn't tell you every detail, but it was something they monitored in all babies born before full term. Once I heard that, I wanted him to go on to what was next. That seemed to be the least of our worries if it can be a concern for all preemies.

The doctor kept the brain scan findings for last. I knew no matter what was coming it wasn't what we wanted to hear. Just get to the point, I kept thinking to myself. He drew the brain and then wrote Grade I - Grade II - Grade III - Grade IV. Carter had a bleed. My mind started racing. I was sick to my stomach. I wanted to run away. He crossed off Grade IV and said. "This is what we don't want to find - it's the worst case scenario." Then he proceeded to explain that Grade I was the best case. Carter's scan showed a Grade II, potentially III. If it's a Grade I or II, there was hope Carter could live without any issues. If it was a Grade III or IV, we would need to prepare ourselves for the worst case scenario. It was already a II… anything can happen in the next four days before the next scan.

Dan and I went into the family room and lost it. This was the one thing Dan was most worried about and that we prayed would never happen. It was something that we may not be able to fix, and even if we tried, there's no guarantee Carter would have a quality of life. I hung onto the Grade II bleed, not the potential Grade III… there's a chance, there's a very small glimmer of hope. They'll do another scan on Monday and maybe it will be the same and he will be okay. Dan seemed to lose all hope. I almost lost all hope, but there was a small piece that I needed to hang on to - Carter needs us to have hope and strength to fight. If it stayed a Grade II, Carter would have a better chance at a normal life since the bleed wasn't in the brain itself yet, but there was no way of knowing what the future held. Dan was trying so hard to bring me back to the reality of the situation we were facing, but I didn't want to. I vividly remember Dan standing in front of the window staring out at the snow falling, and I sat in the chair staring outside with him. If the scan shows anything more on Monday, we may lose our son. It never truly sank in for me at that moment. Maybe I wouldn't let it sink in. I couldn't let it. I was in shock.

We went home. Heartbroken. We agreed not to share the update with anyone except our parents. We didn't want to alarm our family and close friends if we didn't need to. I didn't want anyone else to lose hope; I needed their hope. I didn't want anyone to be worried or feel the heartbreak with us for the next four days.

Dan went to grab dinner for us. Of course we weren't hungry, but we were doing what we needed to act normal. He called his mom who was sitting across from me on the couch. Looking back, the conversation was odd. I remember her talking about what kind of sauce she wanted. She stood up, said she wanted some fresh air and walked outside. When she came back in, she put on her shoes and said, "Why don't you get your shoes on, lets go see Carter." I was excited since Dan didn't want to go earlier because Carter was having a tough day with all they were doing to him. They told me the hospital called needing some milk for Carter. I thought it was odd, but didn't think much of it. We arrived to the hospital, and Dan asked his mom to grab some waters and meet us in the NICU. Dan knows me better than anyone. He knew if he had actually told me why we were going to the hospital he would've had to carry me, kicking and screaming. When we got off the elevator, Dan stopped and turned to me. I saw a look in his eyes I've never seen before, and he said, "We aren't here to give them milk." My heart sunk, I began sobbing and grabbed Dan as we walked down the hall to the NICU...

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Feb 22, 2019

I love you ❤️💚🦋

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