What is a GNay Nay?
The morning of November 29, 2018, I received a concerning call from my girl. She was anxious about Rylea - not uncommon as there were many occasions Shelbey was very concerned for Rylea’s well-being throughout her pregnancy, but this time something was different. She explained she wasn’t feeling well and it was a big day for Ryan at work. She thought she would feel better if she could go to triage, but was afraid to drive. There certainly weren’t any issues with me taking her and stated I would be there as quickly as possible. I went to dart out of the office when something pulled me back. It’s as if someone grabbed my shoulders and said, “Start slow. Slow your breathing, slow your pace.” So, I casually got up, talked to my boss and my team and walked out of the office. Each time I went to bolt, that same feeling swept over me… slow your breathing, slow your pace. I didn’t realize it at the time, but God was trying to pace my body, because He knew I was getting ready to experience the worst week of my life and knew one misstep, I wouldn’t make it.
I got into my car, pointed the GPS towards Shelbey and Ryan’s house – my mind started going blank, so I needed reminded of the only two major turns it would take to get to the place I have went hundreds of times. I walked in the house and there was this stillness, a panicked stillness and a rush I cannot explain. Her brother was there who also seemed to know something was going on, but we couldn’t put our finger on it. I do not know how I didn’t know Rylea would end up going to heaven the very next day, but I didn’t. What I did know was, nothing would ever be the same.
Shelbey got her portable echo out and we heard Rylea’s heartbeat, she felt her kick. As soon as I was going to get excited, that same feeling came back… slow your breathing, slow your pace. I was being trained to find one zone and not let anything, anything deviate me from it. I knew we needed to go to the hospital as Rylea’s heartbeat and movement did not settle Shelbey’s concerns. So the three of us packed up and headed to St. Ann’s.
We were walking to triage… slow your breathing, slow your pace… and taken right back to a room. They placed monitors on Shelbey and we heard a heartbeat… slow your breathing, slow your pace. I peeked behind Shelbey and noticed nurses starting to pile equipment on the counter. Why are they doing this I thought to myself, I can hear Rylea’s and Shelbey’s heartbeats. We are at the hospital now. We live in 2018 – the age of medical miracles; where babies less than a pound survive. Why am I not calming down? Why are the nurses getting hair hats on? Why did everyone disregard what the on-call OB just said? And why did Dr. Arbona just run into this room with her sneakers on? …slow your breathing, slow your pace. Shelbey’s brother, oh, god, what is happening, what am I going to do, what is she getting ready to say, Ryan isn’t here, Shelbey is panicked, I am still and panicked all at the same time, oh god, what is happening, Shelbey has been the best mother possible, all of the ultrasounds have been perfect, what is happening, why can’t I breathe, why am I so scared, what can’t I breathe …slow your breathing, slow your pace.
Dr. Arbona was in the room for less than 5 minutes, grabbed Shelbey and I’s hands and said, the baby is safer out than in and we are going to take you back for an emergency c-section (arrived at hospital less than 15 minutes prior). She went on to say, you’re having a baby today – why didn’t I smile? Why didn’t I feel good about this? Within seconds, I was on the phone calling Ryan to get here simply stating they are running more tests and feel he should be here (I didn’t share what I knew praying he would arrive safely), getting care for her brother and preparing to go back to OR with Shelbey because no one knew if Ryan would make it in time. Shelbey was terrified, I was terrified because I didn’t know why the c-section was necessary and honestly, I didn’t know if Shelbey or Rylea was the reason. I couldn’t ask, I honestly didn’t want to know because I knew I didn’t want to hear any answer – I couldn’t.
Thankfully, Ryan made it, barely. Shelbey was already being prepped and I was taking off his coat at the same time we were putting on his scrubs. I feel so badly for that now, but looking back, I do not know if I would have told him any sooner.
Shelbey’s dad arrived soon after to care for her brother and of course be there for Shelb. They took me back a long hall full of rooms, we kept walking and walking. In my mind I said, why only me? Why are we passing so many empty rooms? Why are we, omg, going to the last room in the corner of the hospital? Omg, I am going to lose both Shelbey and Rylea today. I can’t breathe, I can’t breathe, I can’t breathe. God, please take me, please take me, I’m sorry, oh god, I am so sorry for whatever led us here. I will take the consequences, please protect my girls, please, please, please… slow your breathing, slow your pace. Oh god, Jane, does she know, I think Ryan said she knew. Phone… phone, get your phone. Text to Jane… (I do not remember much other than ‘get here.’)
The nurse came back in the room and would not look me in my eyes; none of the staff would. I said to her, don’t sugar coat anything for me, am I going to lose both my girls, her reply, “I do not know.” Here I was in the corner of the hospital, by myself starting to believe my girls were dying. Inside I felt like a vase that had been smashed by a hammer. I knew it would take God himself to put any of me back together again. It seemed like ages since I heard anything. I was wearing a path back and forth from her room to the waiting room giving her dad updates since my signal wasn’t the best. My last pass back, I asked the nurse for an update. She stated, “The isolette is out.” What the hell is an isolette? Do you mean Rylea? My granddaughter Rylea? Do NOT call her a medical term! She is my granddaughter. What the hell does that mean? Does that mean she passed away? Oh, no, that’s what that means. What about my daughter, does she have a heartbeat? “Yes.” OK. I was getting ready to make another pass back to the waiting room when they wheeled Shelbey back. Oh God, thank you, thank you, thank you. Shelbey is alive. I asked about Rylea. They explained she was in the NICU receiving blood transfusions. Her condition grave. She was born extremely anemic (more to be learned later).
Pass back to waiting room to share news. Limited family can start coming back and forth to Shelbey’s room. I saw Ryan for a few moments, to Rylea’s bedside he went, never to leave her side. Jane and Shawn arrived. We were all trying to support and process at the same time, but looking back, I think we all knew we were just getting started.
They moved Shelbey to a new room. Ryan was in the NICU with Rylea. I wanted to see her so badly, but knew I needed to stay with Shelbey. Jane and Shawn stayed with Ryan and Rylea. Things were not good. Rylea coded, they needed special equipment at the Nationwide Children’s main campus for her to have any chance of survival. They needed to transport ASAP. We needed to get Shelbey to Rylea, but she just had major surgery and wasn’t doing well herself. They went to administer a series of medications – Shelbey in her heroic mother nature and strongest of intuitions declined. I think she knew she needed to be mobile-ish or at least awake. The medical staff didn’t want her to get up and desperately wanted to give her the meds. I tossed them a look that said, guys, you don’t know her, but this isn’t going to happen… Shelbey is getting to Rylea in the next 30 seconds one way or another. Risking her life, she did just that. Of course she did. That’s what mothers do.
Rylea needed transported immediately. She kept coding, the situation dire. I went to the NICU to see her, I didn’t get to as she just coded. Her room was so full, I barely saw Ryan in the corner. I need to get there, I need to help, I need to hold him up. Nope, I didn’t need to do any of that. These kids weren’t kids anymore (won’t stop me from calling them that though). They were parents. They were in the fight between life and after-life. They hadn’t received the opportunity to do the simplest of parental tasks before they had to do the very hardest things a human, let alone brand new parents would ever have to do. So he stood as a soldier, Shelbey risked her life as a soldier…they are the ultimate parents in a class all their own and did what they needed to do for their girl.
The medical team brought Rylea in Shelbey’s room to say goodbye before transport – she coded again. We watched them bag her and do compressions on the sweetest little 4.2 pound baby girl. I could hardly see her through all of the tubes, but kept taking still shots in my mind – her nose, her perfect head, those feet, that belly, those perfect little hands. Lifetime shots, keep them in your mind, Shannon. …slow your breathing, slow your pace.
They finally decided regardless of the outcome, they were taking the chance. Rylea and Ryan left. That was a horrible feeling. Every moment consisted of texts and calls and panic and worry and me trying to get Shelbey worked on and Shelbey trying to get Rylea worked on and Shelbey trying to keep connected to Ryan and I was trying to keep connected to Jane and Shawn. Sorry, but no one, no one can fathom what it was like unless you were there. So many texts and calls left unanswered.
Rylea made it to Nationwide, barely. Ryan told me things were not well and Shelbey needed to get there. OK. That’s what we will do. Secretly, I was so afraid to take Shelb from medical care. I had to tell Shelbey things weren’t looking good for Rylea. First response, “I’m going.” Yes you are. I knew there was a chance Shelbey could have a stroke or throw a blood clot and die. The nurse took me in the hall and said, you know this is almost an AMA and she isn’t well. I acknowledged and said, if this is the last act she does, then letting her be a mother her way is the final gift I give my daughter. She’s going. I knew the risk and promised I would bring her back with any sign of decline. I also knew, if I were to see a sign, it would most likely be too late.
From here on in this version of my story are so many holes. Jane and Shawn stayed with Ryan, I stayed with Shelbey. Her dad stayed too and Laura ran back and forth to get things from the kids’ house we didn’t think to grab just a few hours earlier. To stray a little… The family would divide and conquer from this moment forward to get our kids and Rylea through this. Extended family on their way, we all would congregate and jump in to help each other in the tiniest of ways. We found rooms we would use as our family rooms. That’s really all that existed during that week. The family at the hospital, the kids, Rylea and the medical staff. In a strange way, we all developed a bond, an experience that can never be taken away. I wouldn’t have made it without them.
So, we loaded Shelbey up without pain medications or the medications she needed as a result of the c-section and blood transfer and sped to Children’s. The whole family jumped in and did what we needed to do. We arrived, got Shelb in a wheel chair and started running. Terrified, panic, traumatized… run, run, run, faster. Stopped a few times by security, thankfully God intervened and saved Barny Fife’s life that day (another time, another story). We made it. Rylea was alive and we made it.
The room is scene that any medical media depiction could never come close to. Our girl nestled in the cradle filled with more tubes, machines, beeps, shakes, nurses, doctors and voices than I have ever heard in my life. So many things happened that night and the course of the next day that I’m not sure I will ever share completely. Whether it be I’m not ready or frankly, want to be selfish with those memories, I will leave quite a few more holes.
What I will share is … my girl was a fighter. I stroked that beautiful head of hers and told her to show them who’s boss. Your way, I will fight with you. I am so proud of you. I love you to the ends of the earth. Please don’t go, but if you do, I will help your mom and dad the best I can. I will try to keep moving forward. I won’t know how, I won’t want to, but I will do my best. I would trade places with you baby if I could. I am so sorry. In your 24 hours of life, you will have changed the world. Thank you for fighting. Keep an eye on them. Regardless of what happens, you will always be the one who made me a GNay Nay. You will be with us always, always. I love you, I love you, I love you.
Watching your child and her husband go through the worst pain of their lives is a special kind of torture. There aren’t words. I have often sat not knowing which portion of grief to tackle first. I’m better, but I’m not ok. The first 5 months I didn’t cry. The last 2 months, I find places to hide and cry and sometimes, it happens without warning or control. I want to take the pain from the kids, but then I don’t. It hurts, but it’s also the joy of parenting. We do not get to choose which parts we keep and which parts we don’t…what we walk through or what we don’t. You may ignore them, but they are still there. In the end, this life isn’t about you at all. It’s about you being the best version of yourself so you can give back totally and completely. This is living the life of Rylea…
So, what is a GNay Nay. Nothing really, simply a title of someone that was able to witness the most beauty and the most pain, but the greatest strength of a girl this world didn’t deserve. …slow your breathing, slow your pace.