play it again: behind that NICU door


On call for work tonight. The census has picked up and, yes, I’m (finally) working more doing one of the things I do best. I can’t even begin to describe how good it feels after literally weeks and weeks to be doing one of the things I am most passionate about. This job reminds me every day that not only is life is precious but that human beings are a helluva lot stronger than most people can ever understand…especially tiny human beings who literally fit into your hand when they are born 4 months too soon like the bravest, strongest human I know, my son, Daniel.

I have been doing what I do for over 24 years and although some days (nights) can be horribly tough and emotionally exhausting I am so grateful that this is what I do. I am also kind of surprised that not everyone in my life really gets what it is that I do…nor do they appreciate what it is that Daniel (and his parents and sisters) has lived through. Then along comes something like this that (hopefully) opens their eyes to perhaps some understanding and (maybe) appreciation.

It’s the best job ever. It’s the hardest job ever. It’s what I do and it’s what I love.

originally published September 29, 2013

Heading into work the other day, I walked past a group of people gathered in a small circle just outside the entrance of the NICU. Another Labor & Delivery tour in progress. I know this because most of the ladies in the group are visibly pregnant and because I hear their tour guide explain that behind that door is the Neonatal Intensive Care Unit, where if a problem with their baby should arise, they will receive the very best of care. As I swipe my badge to open the door and enter the unit, I see out of the corner of my eye the expectant parents lean forward a little to get a peek of what exactly is behind that door. Some rest their hands protectively over their pregnant bellies as if to somehow keep their babies out of there.

I smile to myself because I get it. I did exactly the same thing while on a Labor & Delivery tour of the hospital where I was planning on having my baby girl, Hollie. I was definitely curious as to what was behind that door but the last place I would want my baby to be was behind that door.

Then I discovered my passion, working as a Neonatal Intensive Care Registered Nurse in that very unit. It really is, to me, the best job ever. A job that no one close to me has ever completely understood unless they found themselves in there, behind that NICU door. I have done this job long enough to know this to be true with my closest of friends, my darling husband, my children, my family. Unless one works there or has sat vigil beside the isolette of a sick, tiny, fragile human they don’t know what I do behind that NICU door. Nor do they understand truly what my son’s life was like behind that NICU door…or his parents’ lives…or his sisters lives. They have no clue of the rush of adrenaline and trepidation I feel when I get the assignment that is listed as “23-24 weeker”. Nor do they understand the helplessness Bill and I felt the night my water broke 14 weeks too soon while I was pregnant with Jodie as the neonatologist on duty came in to talk to us (to Bill) about the very real possibility that our baby would be admitted into the NICU and all the potential complications and disabilities she would face. It’s scary stuff no one understands unless they spend any length of time behind that door.

Check out NPR’s Radio Lab this Sunday.” was the message I received. Curious, I do. You should too…if you really want to understand what it is that I do…what I have been doing since 1990 when I started my career working in one of the 500 hospitals in North America, Europe, and Japan that had been enrolled in clinical trials of different surfactant replacements, many of which also gained FDA approval.Or maybe you wonder what it is really like to be a parent of a tiny human born at the cusp of viability…a baby who is more fetus-like than newborn baby-like. The story that belongs to Kelley Benham, Tom French and little Juniper is not new to me. I read Kelley’s three-part series, Never Let Go several months ago thanks to a posting shared in the Micropreemie Parents Facebook group I help moderate.

I certainly can imagine all that Kelley and Tom went through as the mother of my own micropreemie. Bill and I too have jumped at that middle of the night call telling us we need to come to the hospital now. Our family learned to accept and understand Daniel’s real age and his adjusted age. And we celebrated too that day we were able to disconnect Daniel from all the monitors and remove all the wires and took home our baby boy.

I also know too well how hard it was for Tracy, Juniper’s primary nurse, to take on the responsibility to be her primary nurse. I totally get why she worked overtime, not wanting to leave Baby Juniper when she clearly was going to die. Like Tracy I also enjoyed many conversations with the babies I have cared for and their parents. I also have enjoyed dressing up “my babies” and taking pictures of them to share with their mommies and daddies the things we did together in the middle of the night when the rest of the world slept. I’ve listened to mommies sing hymns, sweet lullabyes and even Guns n Roses “Sweet Child of Mine“and daddies read countless stories while keeping watch over their tiny ones whom they could not hold. I’ve fallen in love with many of these babies and their families…yeah, I fell completely in love with one whom I now call son too.

While I would never, ever want to experience the absolute fear that I had the night my water broke much too soon while pregnant with Jodie, I am thankful that it did happen. Thankful? Yes, so very thankful. It is because of that Bill went behind that NICU door as a parent to see where his baby might end up and listened to the doctor discuss percentages, potential outcomes and disabilities. That NICU tour and discussion Bill shared with the doctor on duty prepared him, prepared both of us to be parents for a baby born on the edge of viability with pretty much most odds against him. Only days old, when Daniel precariously clung to life, needing emergency open heart surgery, Bill declared that the tiny patient I fell in love with who was all alone needed a father, needed a mother, needed a family and we should be that for him. If that was Jodie wouldn’t we be doing just that regardless of the overwhelming odds that she would have died or be profoundly disabled or moderately disabled, he argued. Yes. Yes we would and so we did just that for Daniel as parents who end up behind the NICU door do.

Check out Radiolab’s 23 Weeks 6 Days

the last week


It’s going to be a short week. It’s going to be a busy week. It’s going to be a hectic week. It’s going to be an emotional week…so many feels…there’s no getting around that. It’s going to be a happy week. It’s going to be a week of graduations, celebrations and lots of pride…so much pride.

Let’s start it off right with this.

I can’t imagine never not being amazed with this kid of mine. I imagine that he will soon grow tired of my amazement because he is almost a teenager as he likes to remind me pretty much every day. That’s okay. He can do that. I, in turn, will always marvel over the miracle that he is because, trust me, sitting by his bed every single day of those 132 days in the NICU watching over him the last thing his father and I could imagine was moments like this. Living through all those days filled with so much pain, anxiety and hope we kind of earned the right as NICU parents, because although we left the NICU with our baby boy 12 years ago, the NICU never leaves us. So yeah, we’re just a little bit emotional and over-the-top proud of this amazing, miraculous child of ours.

He’s proud too.

He should be. He worked very hard all year long for this.

Of course his teachers, aides and even the principal are proud of him. I like that you could see that pride reflected in the faces of his teacher and his principal as he accepted his awards today. I know that his principal gets just how remarkable all of this is for Daniel and for us. Having sat with her many times in a NICU years ago caring for her baby and supporting her I know that she knows.

And now there is literally only three more days of school.

 

just saying hi


You know how when you are having just one of those days where your head is dully throbbing or perhaps that crick in your neck is just a little bit tighter? Or maybe it’s one of those days where you are fighting that eye twitchy thingy that happens when you really don’t want it to happen. It’s just one of those days.

Then suddenly you look out the window and…

Of course you smile. How could you not. Heck, I smiled and I wasn’t even there to witness the random Smiley-face balloon that floated into JP’s Memorial Garden just outside of the NICU where I work because…WOW!

Hurray for social media! Thank you to my fellow colleague who shared this moment.

It’s been nine months.

How is that possible?

things that don’t go together


A weekend in a hotel for the Hollywood Vibe Dance Convention and Competition and YOU have to study and take the online portion of your Neonatal Resuscitation Program renewal test. Doesn’t that sound like a workable thing? Oh, I forgot, you are bringing along your 12 year old boy because your darling husband is working through the weekend. You know, the sweet boy of yours with sensory processing issues? Don’t forget that your grandgirl, who also dances, will be there for part of the weekend too.

No! YOU thought this would be totally easy and doable.

Of course you did. Until you got there at the hotel…where the dance convention is being held…crowded with lots of other families from lots of other dance studios there…with lots and lots of very excited kids because OMG!!! Kent Boyd is here too!!!! A lot of dance moms were overly excited too. Still, you imagine this will be doable. The kids will be in dance classes from 7:30 AM until well into the afternoon and then they dance competitively through the night until around midnight all weekend long. You’ll have time for sure you tell yourself.

Heh!

Did you forget the son you brought along?

But there’s a pool. He can swim. He has video games. He can keep himself entertained while you are studying and logging on to take that 9 part test. He’s a good boy. Your husband will be picking him up Saturday afternoon. You end up repeating that last sentence over and over again because he is a 12 year old boy and the last thing he wants to do is entertain himself. Your husband will be picking him up Saturday afternoon…

Did I forget to tell you that there is a hockey tournament happening here too and there are all kinds of hockey teams here with hockey players the same ages as all those dancers? Oh, and with hockey teams come hockey parents. Hockey parents who are more than okay with letting their kids play hockey IN THE HOTEL ROOM NEXT TO YOURS in the evening…until you asked them not to because it sounded like someone was being murdered in the next room which distracted you from studying and REALLY stressed out your 12 year old…the one with sensory processing issues. Apparently hockey dad didn’t think this was a problem until you told him that you thought that it might be…so he sends the kids out into the hall to play hockey. Yes. Because apparently on every floor there are kids playing hockey. They are also playing hockey in the hotel lobby too while their parents are doing celebratory shots Saturday night because their kids won the tourney.

YEAH Junior Kings!!!

Did I forget to tell you that the Internet connection is very spotty? The Internet connection you have to pay for because of course this hotel isn’t going to offer complimentary wi-fi to their guests.

So the connection keeps dropping while you are taking your test. There are hockey games, loud hockey games happening everywhere. Your son wants to go back to the pool an hour after he decided that he was tired of swimming but can’t possibly wear the swim trunks he wore because he wore them and they are wet. Any parent with a kid on the Spectrum gets that. If you don’t get that all I can say is, I’m sorry. Your grandgirl is REALLY upset because she can’t go swimming because her day is filled with dance classes and dance competition. You’re very thankful that your dancer is old enough to get herself to and from her dance classes but there are still the dances she is dancing in…and the grandgirl is dancing in. What kind of dance mom/mima would you be if you didn’t watch these kids dance?

You know what? None of this mixes well together at all.

Not.

At.

All.

So the next time you find yourself in hotel with your kids for a dance convention and there are also lots of hockey teams there too with hockey kids and hockey parents and you have work you must do for work that requires Internet access DON’T DO IT!!!

Just don’t.

Dance convention and competition is enough. It really is.

I know that my dancers think so. Hang in there girls…only five more hours to go then we go home.

YEAH!

Excuse me, I have to get back to trying to take my test before the wi-fi cuts out again.

 

the awesomeness of hugs


I’m not much of a hugger.

Analyze that.

But true story, I’m not. Still I have learned to try to love hugs. And I do. I celebrate them.

Comforting hugs when you have had an eye-twitching, craptastic day.

Hugs that you enjoy with your Grandmom.

Hugs that you enjoy with your favorite cousin and your favorite Uncle Jesse.

Hugs you share with your favorite little brother never fail to warm your heart and make you smile because he is a hugger.

And who doesn’t love birthday hugs shared with your best friend at Disneyland?

Then there is one of the bestest hugs I have enjoyed recently which I do not have a picture of. You’ll just have to trust me that it was one of the best ever…a hug shared with one of my co-workers…a co-worker whom I always hug when I see her because that is what we do before we start a night in NICU-Land. A little more than a year ago she left the unit to fight a fierce fight. Honestly cancer picked the wrong person to fight with because after all that she has been through and all that she has to live for I knew that it wouldn’t be a fair fight. I knew that it was going to be a great night taking care of the tiny humans whom  I love so much in the NICU when I saw Brenda walk into the unit for the first time in over a year.

We hugged. We cried. We tried to fix our makeup. We laughed. We hugged some more.

I have no photo to share but I can guarantee you that it was a beautiful, wonderful picture that will last forever in my heart and my mind. If you close your eyes right now I bet that you can see it. Amazing, gorgeous! Isn’t it?

I am so unbelievably happy knowing that I can look forward to Brenda’s hugs before night shift in the NICU again.