Saturday, September 17, 2016

Primary Love

I know I have spoken about our love for Avelyn’s PCICU team quite a bit, but I have never spoken about Avelyn’s primary nurses or care providers specifically.

 I guess I should first explain what a primary is. A primary nurse, nurse practitioner, or doctor chooses to assume care of a patient each time they work, therefore providing consistency of care to the patient. As a nurse myself, I feel I likely understand the gravity of this choice more than most, and I hope to convey the enormity of our love and respect for our amazing primaries with this post.
I see the choice of primarying a sick baby as a sacrifice of sorts. Mainly because only the sickest babies need primaries, but it’s so much more than that. There are so many emotional and professional elements involved. They work with the same patient day in and day out. They don’t see as much variety as they would otherwise, which is often the way you evolve and maintain skills as a healthcare worker. Emotionally, they choose to ride the roller coaster right alongside the patient and family, for better or worse. Working with the same patient so closely, it’s obvious that they can’t help but get attached and give their all in hopes of setting the child along the path of wellness. In the cases where little loves on the unit have passed, I’ve seen their primaries grieve for those they couldn’t save. It’s not a choice easily made, and we do not take our primaries for granted.
It is obvious to anyone who cares to look, that our primaries love our baby girl. They celebrate each accomplishment no matter how small, often reminding me to do the same. They feel the pain of each setback and pour themselves into saving Avelyn’s life in each time of crisis. On our hardest days, having our primaries around is a comfort in and of its self. I cannot describe how much it means to know someone who loves, knows and cares for your baby is fighting tirelessly for her when you’re too broken to think. I don’t know how they function through the pain, they so obviously feel in these harrowing times, but they do. I’ll never be able to thank them enough for what they have done for our family, but at least I can share my love and admiration on this blog for all of Avelyn’s supporters to read and someday even Avie herself.
This may sound funny, but Sean and I have actually had conversations about how we could never choose which primary we like best. Each is so different and so wonderful in their own way, we could just never choose. So I’ll list them in the order they signed onto Avie’s case.

The first is Curry, an NP. Curry is hilarious and is a self-proclaimed people pleaser. She always tries to make those around her feel comfortable with the treatment plan before implementing it. In the course of the last 9 months, she has gone great lengths to pacify me which inevitably makes me laugh-even in the most stressful situations. This isn’t to say Curry is a push over, she far from it actually. She once disagreed with us in a care conference and then, through a few tears, made sure to stress that is wasn’t personal (not that we would have ever felt that way). Because that’s Curry. She wears her heart on her sleeve and truly loves the babies and families she cares for. Another quintessential Curry moment came on Avelyn’s extubation day.  At that time, Avelyn was a DNR. The weeks prior had been hard and Avelyn being ready for extubation was a miracle. We had been so wrapped up in all that was happening that we had not processed how far Avelyn had come in such a short period of time. Curry came to us and reminded us that anything could happen during the extubation process, and while she didn’t say it aloud, it was obvious that she was pleading with us to change Avie’s code status. When we agreed that it was time and we all cried and hugged. (Because if anyone can be described as a “hugger”, it’s Curry.)

Dr. Stephanie Conrad signed up not long after Curry to be our go to intensivist. I cannot stress this woman’s brilliance enough. Not only is she incredibly intelligent, but also is one of the most genuine and caring individuals I have ever come across. Her very presence emits calm and understanding. Even while giving us news most parents could never imagine hearing, she made us feel as though we were doing all we could for our baby. Throughout this entire experience, she has gone out of her way to reassure us as parents and people. She has spear headed getting second opinions from other facilities, and has sacrificed sleep and time with her young son to come and meet with us on her days off. Though all of the attendings on the unit are amazing, Sean and I always look forward to the weeks and nights Dr. Conrad is on.

As for our nursing primaries, we’ve gotten to know them on a more personal level after spending so much time together.

Marcie was the first nurse to sign up. It was back in March, just after Avelyn’s unifocalization surgery. Though Sean and I had no way of knowing how complicated things would become, we both understood that Avelyn was a complex case and how much she needed consistency of care. When Marcie signed on I felt we had hit the jack pot. Not only is she an amazing experienced nurse but I had grown to truly adore her as a person. Marcie has seen us through some of our absolutely most terrible times. She cried with us and reassured us of our love and bravery when we chose to make Avelyn a DNR. She was also there the day Avelyn nearly coded due to sepsis. The pain of those moments will forever remain etched too sharply into my brain, but so too will Marcie’s love and her fight for our baby. Although Marcie was obviously in pain too, she handled crisis with calm efficiency, preparing for the worst, while doing all she could to stabilize our precious girl.
On a personal level, Marcie isn’t your average individual and I feel she gets our weirdness more than most. She has a dry wit and loves to pick at us, Sean in particularly, which I find hilarious. She adores her animals, two cats (who are hurricane Katrina refugees) and her dogs-Daisy and Harper, and often reminds me of my need to visit the Pickel pups. As a fellow introvert, she knows when Sean or I need space and when we are being quiet just because we don’t have anything to say. She knows when to push us and Avelyn and is responsible for much of Avleyn’s muscular strength. Marcie is also notorious for reminding me to celebrate Avelyn’s accomplishments (it’s not that I don’t realize how far she’s come, it’s just that sometimes I need help seeing past her current issues). Recently Marcie has started clinical work for her master’s degree and is mostly working weekends, which is so great in that I worry less while at work because Marcie is there. On the other hand I really miss my friend.
Molly signed up to primary Avie not long after Marcie. When she told me, I was shocked. Molly had just been the primary of a patient who had spent months on the unit. I figured she would want a break for the emotional roller coaster that comes with being a primary, but that’s not Molly. Molly is the type of person who always puts the wellbeing of her patients’ above her own. She often needs to be forced into taking a lunch break or going home on the more busy days. While on the unit, she’s always on the go and going above and beyond to help everyone out. One of the greatest things about Molly is her attention to detail. This manifests in amazingly well organized notes, coordinating outfits for the baby and also in noticing the slightest deviation from Avelyn’s baseline and acting upon it.  All of which, I appreciate.
Besides being a great nurse, Molly is a hilarious story teller and often makes me envious with the accounts of her travels. She is also honest to a fault and cracks me up with self-deprecating depictions of her adventures/misadventures. She has a recue dog, Roisin, who loves to hike and play fetch in the house. Molly obviously loves her boyfriend Dan, who supposedly puts up with her bad “show-infidelity”. For those of you who don’t know what show-infidelity is, it’s where you start watching a show with your significant other with the understanding of watching the episodes together, but then you cheat and finish the season by yourself. Maybe this isn’t a thing for most people, but I find comfort in knowing I am not the only one how has tortured the man I love so ;)

Lastly is Brianna. The first time I met Bri, she was on orientation after coming to Vanderbilt from Phoenix. It was 2 or 3 in the morning and Bri was looking over Avelyn while the nurse assigned to her was at lunch. She came in and spoke of being surprised to see me in the room and how great that was. Honestly I remember being a bit rude to her, I figured she was being sarcastic. Because who could really be that nice? Well Bri, that’s who. She is one of the kindest most caring individuals I have ever met. She too loves the babies she cares for and has such a patient gentle spirit. She’s also a total team player and hard worker. She graduated with her bachelors in nursing when she was only 19 and has never looked back. (When I was 19 all I cared about was besting Sean in rugby, becoming a nurse had yet to cross my mind-let alone caring for critically ill children.)
Bri is quite vocal about her love for Avelyn. So much so that Sean and I have joked, that if Avie is ever abducted, Bri would be the prime suspect- and at least we wouldn’t have to worry about her wellbeing, because Bri very well may care for better than we could.  Back when Avelyn was intubated, I would wake in the middle of the night to see Bri sitting at Avie’s bedside stroking her hair and talking to her. I cannot explain how much I appreciated someone just being there and reassuring our girl that she isn’t alone in her fight. These days Avelyn’s cries are no longer silent and I hear her when she wakes, but often Bri still manages to get to her first and will encourage me to lie back down. I can’t describe how Bri’s love and patience for Avelyn touches our hearts. On the nights Bri is there, Sean and I actually sleep. Knowing, even when we aren’t there that Avelyn’s cries won’t go unanswered means so much to us.

We love and hold each of these women close to our hearts. Each is in part responsible for Avelyn still being here and for her knowing that she is loved. I seriously could never thank them enough nor adequately convey the reverence we feel towards them. But rest assured, they are wonderful and we’ll always love them.

Also, this post has showed me that I need to take more photos with those who are actively saving our baby girl's life. We love them so and need to be able to show Avelyn the photos some day!

I promise to post an Avelyn update soon. In the meantime you can find mini updates on my Instagram account


  1. Each of these wonderfully talented people are so loved & appreciated by this Nana too! Thanks to all of you from the depths of my heart ❤️

  2. We also had favorite primaries when my son was at Mass General for his first 5 months. We are still FB buddies with a lot of them. And it makes me so glad that they still take an interest in his life outside the hospital.