101.
On October 21st, 2016 we had our daughter.
On January 30th, 2017 we left the hospital with our daughter
I will save you the trouble and do the math - 101. That is the number of days Elliott {we} spent in the NICU.
For those of you unfamiliar with the NICU, which I hope is most of you, allow me to set the scene:
Every morning you arrive to the check in desk for the Level 4 Neonatal Intensive Care Unit. You say "Mom and Dad for B24" (Elliott's bed) and they call the bedside nurse to obtain approval for the two of you to enter. This killed me then and it kills me now - a stranger decided when and if I could see my baby. I understood the reasons for this security measure, but it still destroyed me for 101 consecutive mornings.
Elliott was situated somewhat in the back-left corner called “B pod”, which was the cardiac wing. Brad and I would walk through rows and rows of babies making sure we never stared or interfered with whatever bedside surgery (yes, that happened when a baby was too sick to transport to the OR) or difficult conversation was occurring. We’d arrive to Elliott’s crib – metal and sterile; think prison bars. I would briefly smile at the nurse and then beeline to Ellie to make sure she knew I was there. Truly, I don’t know if she knew the difference between me and her nurse. We didn’t get the typical bonding and nurturing time that every mother craves. However, rather than allow this thought to break me I choose to ignore it and just assume she knew her mama was there every time I arrived.
The cardiac babies had 5 leads on their chest constantly measuring everything from heart beat to oxygen level to temperature. These leads made diaper changes, baths, and simply holding your baby quite tricky. Join me for a quick tangent on holding your baby in the NICU environment...
Because of Ellie’s difficulty with breathing she was either intubated, on C-pap, or with her trach, towards the end of our stay. Once she healed from her tracheostomy we could pick her up anytime we wanted without concern – like you would a baby at home. But as you remember she didn’t get her trach until 12/12 – day 52. The first time I held my daughter was on the 6th day of her life. DAY 6. Not on my chest after delivery, not even the next day. But 6 days later. The first time Brad held Ellie was on 11/11 - day 21, when she was 3 weeks old. 3 WEEKS! Second hold on day 28. Third hold on day 37. (Ugh, that kindhearted man always making me look bad – he kept deferring any hold time we received to me so that it would aid in my milk coming in and allow for more mother-baby bonding.)
My point with this chronicle of holding time is to drive home the difference between a NICU parent and a parent who took their baby straight home after discharge. If you were fortunate enough to experience the latter, and I hope that you were, have you counted how many times you’ve held your baby and for how long? Did you have to ask permission to pick up your baby and hold your breath for fear of the answer being “No”? Did a nurse have to hand him to you and re-arrange cords and machines each time you were allowed to pick him up? My point is to drive home the differences of environment; however, my goal is make anyone reading this (and me, as I write it) a bit more grateful. We, as a society, are so focused on rushing ahead, knocking things off a to-do list we often elongate ourselves for no reason, and making sure everyone around us thinks we’ve got it made even though we might be falling apart. I hope you read this and rather than pick up your baby as you rush towards the changing station, thinking about how annoyed you are that you must change their diaper again and fantasizing about successfully completing potty training… maybe, instead, you stop. Wonder how many times you’ve gotten to hold your little bundle and be ever so grateful that you do not know the answer to that question.
Let me be clear - I am not seeking pity. I am seeking a world filled with people who have more compassion for other’s and their secret battles. I am seeking a world filled with people more grateful for the small things we sometimes don’t even realize we have.
Ok, thanks for joining me on that ride. Back to setting the NICU scene:
Doctors, nurses, therapists, case managers, volunteers, social workers, and the chaplain buzz about all day, all up in your typically personal space. But...I should clarify, in the NICU you have no personal space. There is ZERO privacy in a place where tears flow freely, and often. My favorite crying spots were in the bathroom or in the milk bank while pumping.
You have a single chair that somewhat reclines though you never truly rest in it. The humming of machines and sounding of alarms is constant. It is sensory overload every minute of every day and every night, yet you don't want to leave for fear of missing rounds or anything for that matter. The medical staff can stop by at a moment’s notice and make a decision about your baby with or without you. We always wanted it to be with us, therefore, we needed to be physically present. Every day you must insert yourself into the conversation where the Doctor's decide the course. If you are not proving your intelligence and involvement, you will be pushed aside wondering what azithromycin does and how to spell it, so you can Google it later. Meanwhile, your baby has already had her first dose. Advocating, hard, is crucial to NICU survival. These Doctors and Nurses are amazingly smart and compassionate. While I am forever grateful for the team that took care of Elliott in the NICU (I could write a whole post on this crew!), I had to remind myself they are still human. Humans with lots of education, but still humans - who can make mistakes. We are Ellie’s parents, and no one will love her and care about her as much as we do therefore, we must advocate for her.
You share the NICU with pretend strangers. "Strangers" because you’ve never met them and know nothing about them. "Pretend" because you are forced to share likely the most vulnerable and intimate time of your life with them in a confined space. You not only know their feelings but understand them 100%. You know every detail about their baby and the pain they are enduring. You know these strangers more than their own families and friends ever could at this moment, yet you don't know their first names.
You say "bye" to your pretend strangers every evening as you leave the NICU, defeated, from your roughly 14-hour shift. You say "hi" every morning with utterly exhausted eyes trying to be ready with enough courage to do it all again. You avoid eye contact yet when you inevitably lock eyes, you both acknowledge the shared sadness and offer up a half stretched, pathetic smile. If one could even call it a smile.
The NICU is such an odd place. A place you hate and love, equally. A place where a good day and a bad day can be the same day. A place that drains you completely yet also inspires you to keep going. A place like no other.
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Elliott had many baby neighbors. Some babies came and went quickly like they rented the space for a week’s vacation. (I remember abhorring these families which was totally unfair but also totally justified at the time). Some babies, like Ellie, spent solid time there before heading to their true homes. Some babies spent time there before heading to their home above the clouds...
J, as I’ll call him, was the baby to the right of Elliott. I can’t remember if he moved in soon after we did or soon before. His prognosis was not good, in fact it was terminal. (This was common in the NICU and just another one of the unsolvable puzzles that life presents. One that drives you mad if you continue to try to solve or understand it). I remember one day when a Doctor was speaking with such poor bedside manner to the parents. One of them interjected with hope and a fight that all NICU parents must always possess - sharply snapped at the Doctor reminding him that all things are possible, and that J would have a good life no matter how long. I silently cheered and thanked God they did that because I was about to overstep my bounds and do it for them.
A week or so later we came in and it was clear J was coming to the end of his short, but meaningful, life. The energy was somber - even more so than usual. I was afraid to turn around and speak with my neighbors for fear of showing them my tears. I kept my back turned to offer some resemblance of privacy.
Normally, when a baby is not going to make it, they transfer him/her and family to “The Butterfly Room”. It’s a room that looks and acts like a nursery where the parents can hold their baby without cords and machines as he/she leaves this world. It offers true privacy which, in the NICU, is gold. J was too weak to transfer, and the medical team worried he might pass away before making it to The Butterfly Room which was a mere 50 feet away. So, rather, they put up screens around J’s crib as his parents and family all stood their surrounding him, loving him, waiting for him to take his last breath...
…God, I can’t.
As a new Mom, steps from this scene, I could not pull it together. Not even for a minute. My mind raced with dark thoughts of my own baby passing, my heart broke for this family and the journey they were on, my shoulders quaked with sorrow as I wept, uncontrollably. This enduring family was incredibly supportive the night, less than one month ago, when we almost lost Elliott. They prayed for her and for us as that whole tragic scene played its course. I had immense gratitude and admiration for J's family. I could not, still can’t, make sense of why such pain exists.
I turned around briefly and accidentally locked eyes with J’s mom. Tears streaming down her cheeks, and mine, without ceasing. It was one of those moments when someone so desperately wants you to say the right thing. The thing that will comfort them and make their pain subside. She was staring at her pretend stranger (who she knew nothing and everything about all at the same time) begging for relief. My mind raced with what was appropriate to say. Maybe an “I’m sorry”? Absolutely not! Aubrey, you are better than that!! I quickly abandoned the idea of appropriate as I continued to stare into her soul. What the hell is appropriate to say to a mom who is watching their child die?!?! Nothing. Nothing is appropriate, so just say what is in your heart and hope that it offers her even a second of peace.
From 5 feet away, with tear filled eyes, I exaggerated my lips and whispered: “J is perfect. He is beautiful, and he is perfect.”
She tilted her head, and mouthed "Thank you" with sincerity. As if it were a movie scene, we walked towards each other and embraced. I am a hugger, by definition, and of all the hugging I have done over the years, I have never hugged someone whose name I didn't know with that level of intensity, vulnerability and pure love.
Of course, I did not give her the relief she needed and despite my strongest desires to do so, I know I couldn’t have. J passed away in the middle of the night, long after Brad and I had left. The next morning when we arrived, his space was completely empty. We never saw J's family again.
I will forever remember this day and specifically that moment between new mothers. Both finally nearing their turn to leave the NICU - one with her baby, one without.
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During those 101 days, I wanted nothing more than for our family to leave the NICU with our healthy baby girl. Now, out in the real world for almost a year, I sometimes find myself craving the comfort of its walls. Elliott was just a baby in the NICU. She wasn’t a baby with a trach, cleft lip, heart defect, g-tube and Down syndrome. She was just the sweet baby in B24. Babies all over the NICU had these sorts of medical situations. Babies had seizures and diaphragmatic hernias. Babies had missing limbs and organs on the outside of their bodies. Nothing made these babies anything but cute, little babies needing love. Nothing made them different or warrant stares.
We are obsessed with our daughter and will continue to do everything we possibly can for her. That being said, our lives are very hard. I am not the kind of person to pretend everything is great when it's not. I don't believe in that. Facades get us nowhere. We have endless medical appointments, therapies, and development markers to hit. Every day is a new mountain to climb and my head and heart need to be right to climb it. It is very easy for me to RSVP to a stellar pity party. Most of the time, but not always, I can avoid it. Here is how I decline the invitation -
On January 30th we will celebrate Elliott being home for one year. 101 long, hard, grueling days in the NICU followed by 365 days filled with endless love from grandparents, aunts, uncles, cousins and friends.
We - got to bring our baby home. We - get to hug her and kiss her and spend every day, hard or not, with her. We – get to pick her up without permission, without help, whenever we want to.
There are families that spend more than a year in the NICU. There are parents that leave the NICU without their baby. Life is hard for us. Life is harder for others.
I think about J and his parents from time to time. I picture running into them at the grocery store and locking eyes with J's mom. No one else would know what our unbreakable stare represents, but we would.
We never know what battle people are fighting, but we are ALL fighting something big. I propose we offer each other grace and spend our days with grateful hearts. It makes for a much smoother battle for us all.
Until the nexT21,
Aubrey
