Gifts of the Heart

Even when you feel like your world is ending, tomorrow still comes. While it was hard to imagine life without Hailey, it is true that she is gone and we are still here and life does go on. You can even still find happiness, as we did this past week. My husband, son and I traveled to Georgia with my mother-in-law to see our new house, and then we attended the truly joyous occasion of my brother's wedding. That is why I've been missing from this blog for a little bit longer than usual. That, and I don't like to force what I write. Rather, I just go with what I'm feeling called to speak about.

My last post was about gifts for healing. Today, I want to write about gifts of the heart. I've mentioned before the nurses who took such good care of Hailey, but today is really about paying homage to them.

We were in the hospital with Hailey from six weeks of age until we let her go just shy of her four month birthday. Every day, the nurses would change shifts at 7 a.m. and 7 p.m., and I would sit there and listen while they updated their replacement on everything that had happened in the past twelve hours. Yes, these women worked twelve hours at a time, taking care of multiple NICU babies at once. They are like mothers on steroids, taking care of all of the normal parenting duties on top of all of the medical ones. They changed diapers, gave baths, conducted weight checks, hung medicine...they did it all. And, they sat and chatted with the parents if they were present, acting as a distraction and often an impromptu therapist for the stress of the NICU.

And while other parents did come and go, Hailey's symptoms were such a mystery and changed so rapidly, I never wanted to leave her side. With the medical staff changing shifts, I felt as though I was the one point of consistency for her medical history. But after the first few weeks of sleeping every night in a recliner by my daughter's bed, we began to meet some of our special angels. You see, if your child is sick enough and if a nurse asks, she can be dedicated to your child. If approved, every time that nurse works, she will be assigned to your baby. Your child becomes one of their "primaries."

Hailey's first primaries were women who worked on the night shift. When I first met Debbie, she reminded me a bit of my mother for some reason. I don't know why.  Debbie has been a NICU nurse for decades, with grown children of her own. She is fit, with a pretty and kind face and a steady and gentle demeanor. Everything about her gave me the confidence I needed to leave the hospital and to start spending some nights in a bed in the nearby Ronald McDonald House. She didn't mind if, every time I woke up to pump during the night, I called to see how Hailey was doing. Debbie also didn't just care about Hailey's physical well-being, but would make recommendations and enlist additional services so Hailey didn't fall too far behind on her developmental milestones while in the hospital.

If Debbie was like another loving grandmother to Hailey, then nurse Kristin was like a fun girlfriend. She works the night shift right now because she is attending school to become a nurse practitioner, and I loved the opportunity to hang out with her while she took care of my daughter. Kristin is straight-forward, upbeat and a bit sassy. And what I loved is that she didn't treat Hailey like a very sick little baby in the hospital. She talked to my daughter as if they were besties having a slumber party. She thought my daughter had some sass in her as well and gave personality to her updates. It made me smile that Hailey not only had people mothering her, but others who treated her like the best friends she'd likely never grow to have. Kristin loved the cute little girl outfits I'd once picked out with such hopeful joy, and encouraged me to bring them to the hospital so we could still dress my daughter in them.

Finding primary nurses for the evening seemed to be easier than for the day shift. We went a bit longer there without having any dedicated nurses for Hailey. I felt bad, because it was becoming obvious that Hailey was very sick, I was a wreck, and many of the nurses were pregnant themselves. I felt guilty that at a time in their lives when they should be doing nothing but feeling excitement and joy for their own pregnancy, it was likely tempered by all the sick babies they helped take care of every day at work.

Enter Shelley and Abby. Shelley has one of the most happy faces I've ever seen. In some moments, she can grow serious with you, but she almost always has a twinkle in her eyes. Her cheerfulness is not overwhelming, but flows throughout her in a steady and comforting way. She was with me on the day in December when we had to take Hailey for a swallow study. Hailey had returned to bottle and breast feeding, but had started to have a difficult time...the swallow study was very stressful for both Hailey and for me...I won't go into the details, but it became clear to me that there was one more thing that had gone haywire for my precious daughter. And I think that at that point, I just knew we weren't going to survive this. Shelley and I wheeled Hailey back to her room and I just lost it. I told Shelley I didn't quite understand why I was sobbing over the swallow study of all things, but she didn't judge me. She just held me and comforted me.

Abby was another day-shift nurse who kindly dedicated herself to Hailey. Abby is beautiful and young and about to get married. We excitedly talked about wedding planning details and honeymoon destinations. But what impressed me the most about Abby is how much she has overcome in her personal life. She has the figure of a dancer, so I wasn't surprised when she told me it had been her passion. But when I found out about the extensive hip surgery she'd had to endure at such a young age, and the rehab and slow recovery that followed, I was amazed to see her standing on her feet and working her twelve-hour shifts. How selfless and amazing! Abby was straight-forward and efficient and took care of my daughter with a proficiency beyond her age.

And then there is Sarah, who will always hold a very special place in my heart. She is another day shift nurse, and was one of the last to become a primary nurse to Hailey. She might have been with us for the shortest amount of time, but that is why I love her so much. All of the other nurses had been with us all along the way, when Hailey was sick but maybe not dying. But by the time we met Sarah, it had become relatively clear that Hailey was dying. Thanksgiving passed, Christmas was approaching, and many nurses were understandably taking time off around the holidays. If this was the end, it broke my heart that my daughter would have a revolving door of nurses caring for her, rather than those that knew and loved her. But I didn't have the heart to ask anyone new to serve as a primary for a likely terminal baby right at the holidays. I figured it must be hard to be a NICU nurse and to lose babies and I didn't want to take for granted where the nurses might be in their own personal lives or journeys. I didn't want to ask them to care for my dying daughter if they might still be mourning the last baby they might have lost.

In walked Sarah. She knew how sick Hailey was, but she still volunteered to be our primary. She didn't hold herself back, either, to protect herself emotionally from becoming attached to such a sick baby or her family. She was open and caring and there were even a few times she got choked up alongside me. I don't know if she felt that was unprofessional, but I loved her for it. I loved how much she loved us. She was the one who took care of Hailey the day we let her go be with the Lord. It was Sarah who sat with my husband and I and explained everything to us ahead of time...explained how things might go when we took Hailey off of the ventilator and her body began to shut down. It was Sarah who helped us do many of the things the hospital offered to help us commemorate our daughter before she passed, like cutting a lock of her hair or creating a hand mould. It was Sarah who helped us bring Hailey down to the chapel for her baptism and journey home. For all of this, brave and wonderful Sarah will always hold a very special place in my heart. I will always love her. My only regret is that she didn't know Hailey sooner.

All of these women loved Hailey, and us, so well. They came to her baptism and passing. They've kept in touch. They are working to trade shifts so they can come to a memorial for Hailey in May. I swear to you, they are God's angels on Earth. As horrible as our journey with Hailey was, we couldn't have been more blessed than we were with these women, and others. I'm so thankful to have met them.

Believe it or not, I have cried harder writing this post than any other. I haven't shed tears over Hailey for a few weeks, but as I sit here, I am ugly crying. You know, when your breath hitches as your tears run together with your runny nose? That's me right now. And I think it is because I love Debbie and Shellie and Kristin and Abby and Sarah so much. They spent more time with my daughter than almost anyone, and I am grateful for the love, care and companionship they gave her. It is like my husband said to me when we first discussed the fact that Hailey might not have a very long life...he said, "If nothing else, Hailey will know love." These women are a HUGE part of that.

I hope they each know how much they mean to us. That no matter how bad a day they ever have, that I believe they are walking miracles on Earth. That their job may be hard, but they make such a deep impact on people. Even on my dying day and beyond, my heart will know them and hold them close for all that they gave and continue to give to us. They inspire me to be better. To be more. Thank you, Debbie, Shellie, Kristin, Abby and Sarah. And thank you to all the other nurses who cared for us. With gratitude beyond words.