I had tried to prepare myself to say goodbye to Elizabeth. I wasn’t sure exactly what it would look like, or exactly how I’d make it through this, but for twenty weeks I’d lived with the knowledge that my baby girl would be born with a fatal condition and that we’d likely not have much time together. This twenty weeks was time that I’d graciously been given by God to grieve and plan and pray and enjoy Elizabeth as much as I could. I anticipated her arrival and inevitable departure with a mix of joy and trepidation. What I hadn’t really prepared for was watching my baby girl slowly decline over two day’s time.
Please don’t misunderstand. Those near forty-eight hours were the sweetest blessing I could have ever hoped for. Looking back I can see God’s sustaining presence throughout this time and how He graciously allowed so many precious memories to be made. We were able to talk to her and sing to her and pray over her and show her off to so many loved ones. We were able to change her diapers and her little outfits and feed her and take care of her physical needs and help to make her as comfortable as possible. She was so precious and beautiful and strong. I knew she would be strong. She thrived so in my womb. But when that life-support was taken away, she began to weaken.
By Friday night I was exhausted. All our visitors had left and the fact that I’d just given birth was quickly catching up with me. Elizabeth was doing well and Onan and I needed some rest. I did not want to send her to the nursery. The thought of her being placed in a bassinet and left on her own was too disconcerting for me. She’d been in someone’s arms since the time she was born. But trying to sleep with her in my arms wasn’t working. I attempted it for a very brief while and had woken up feeling panicked about how she was doing.
My night nurse, Cindy, had the solution. She’d actually had it all planned out before I’d even voiced my concern. She would simply wear Elizabeth in a sling as she worked. If a patient needed her, Elizabeth would be temporarily handed over to someone else who could cradle her. The receptionist on our floor apparently loved newborns and would be thrilled to take a shift. She would not go to the nursery, she would not be put down. She would be held and cared for through the night. This wasn’t exactly “hospital policy”, but this is why Cindy worked the night shift on weekends--it was easier to bend the rules. I was able to sleep a solid couple of hours on Friday night and awoke Saturday morning to my sweet nurse pulling a rocking chair into our room because she’d discovered Elizabeth loved to be rocked. She’d figured out a new, more conducive head bandage for her and had her wrapped up in a knitted blanket that someone had made especially for NICU babies. I could not have been more content with how Elizabeth had spent that time away from me.
Saturday was a full day of Elizabeth Grace. Our children and families and friends came back to see her and hold her and love her. The neonatologist on call continued to check on her. We were told that as she became weaker there would be periods where she would struggle to breathe and that we should expect her color to become dusky. We nodded and said okay, not really grasping how hard to watch this would be. She also wanted us to know that as her breaths became more shallow and spaced out, Elizabeth would go into a “comatose-like” state and would not be able to feel any pain or discomfort.
Elizabeth gave us a few scares throughout the day. Just as predicted, her breaths would become gaspy and she’d take them further apart. Her color would darken to a bluish-purple and we’d call for our nurse. Then she would start to do better. Her normal color would return and her breathing would regulate. Elizabeth Grace was a fighter. We continued to care for her.
Cindy was back on Saturday evening and took care of Elizabeth the same way she’d done the night before. Before taking her late that night, she promised that if Elizabeth seemed to be doing poorly that she would bring her back to us immediately. Elizabeth held on through the night, but when she returned to us early Sunday morning it was evident that our time with her would soon be drawing to a close.
Here are some pictures of our day with her on Saturday, February the 4th.
Corby and Lizzy
Grandma and her Girls
Hanging Out (Charlie was such a proud big sister!)
Loving our Girl
Love from Aunt Bebby
Holding on Strong
Elizabeth and her Favorite Nurse, Miss Cindy