adjusted for prematurity

Yes, today is World Prematurity Day because one in nine babies every day are born much too soon. Check out #WorldPrematurityDay and you shall see hundreds and hundreds of images of babies who literally can fit into your hands wearing diapers no bigger than a saltine cracker and you shall see pictures of some of those same tiny babies as smiling school aged children or teenagers or even adults. My own social media timelines are flooded with images of some co-workers own preemies and friends and the parents of former patients as we recognize the tiniest but mightiest humans we have ever known not necessarily to celebrate but to remind everyone that in spite of amazing strides in Perinatal and Neonatal medicine and nursing care, prematurity still happens and when it happens the adjustments for prematurity happen.

age 1 month/28 weeks adjusted age; 792 grams/1lb 7oz

I remember having to explain way too many times the adjusted age of Daniel during the first few years of his life. How that adjusted age seemed to annoy some as they would sarcastically question if we were going to be using his adjusted age when he was a grown man.

Perhaps.

Maybe.

What do you care?

As he has grown and developed, knowing Daniel’s adjusted age helped so much in understanding this life living on preemie time. It helped to have just a little more patience when he didn’t walk until age 30 months (26 months adjusted age) or when we struggled so mightily with potty training and eating. But the fact of the matter is that after the magical age of 2 or 3, adjusting does not abruptly end. Experience has taught me that these tiny humans carry so much more than the physical scars of needle pokes, TCM burns, healed incisions and chest tube scars. The bright lights, the loud, clanging alarms, the noxious smells, even certain touches remind them of the trauma they survived that was intended to help them survive. PTSD is readily accepted in adults after hospitalization, why would it not be valid for a tiny infant whose brain isn’t even fully developed and spends weeks, months even in an intensive care setting? Just because they can’t articulate it does not mean that it is not real.

The fact of the matter is for this child, this boy, there is always adjustments for his extreme premature birth. Adjustments in how he learns, how he expresses himself, how he eats, how he grows, how he handles noxious stimuli, how he reacts in stressful situations. Adjustments because he is who he is. We have come to learn and understand so much of who this boy is and what he is passionate about just by adjusting. He’ll never stop being an individual who was born 4 months too soon. He will always be that. Today, and every day, we honor that, we celebrate it, we accept it and, yes, we adjust.

I feared because it was too early, I cried because it was too soon. Yet I underestimated the strength in one as small as you. ~ Unknown

 

 

play it again: boundaries

Originally published October 11, 2010

As parents, we are forever putting up and enforcing boundaries. It’s our job. Our kids believe that we enjoy putting up barriers and roadblocks to hinder them and hold them back in spite of our assurances that we do not enjoy this part of our job…let’s keep it our secret that we enjoy this part…a lot!

But seriously, as parents we encounter boundaries and barriers all the time that are put into place by our own hand, our own words and our own heart. We don’t expect that there will be barriers and boundaries that keep us from our own children. Thrown into the vortex of the NICU or the PICU with a critically ill newborn or child is definitely one of those places where a parent will suddenly find that they have little if no control at all. Even worse, from my own personal experience, is when you, the parent, is also a medical professional. Your child, your baby is critically ill and you have a very good understanding of exactly what is going on. For any parent, it is very easy to bump up against the boundaries of a NICU or PICU setting. For the parent who is also an experienced nurse, a physician, it is almost a given that the barrier between parent and medical professional will be broken down. What else could possibly happen. We, as parents, are frightened to near death seeing our own child in crisis. As pros, we can run through our mind the worst case scenario and outcome with a few blinks of an eye. It’s painfully hard not to try to intervene. We’re parents…we’re good parents. We just have bumped against the barrier that separates us the mom or dad and us the nurse or doctor.

I recall one night in the NICU where I pretty much blew down the barrier between me the mom and me the NICU nurse. Daniel required a ventilator to breathe for him for the first 11 weeks of his life but he often would self extubate knocking loose or even grabbing a hold of and pulling out the breathing tube he needed. What can I say, he was a fighter who drove his care team crazy. This one particular night, I was visiting and helping his nurse bathe and weigh him when…oops, he did it again. As his nurse, respiratory therapist and neonatologist prepared to re-intubate him, there I was standing over him watching him become paler and seeing his little chest caving in exposing every single rib as he struggled with each breath. His care team gently tried to have me step aside but I could not be moved.

“I think he can do this. I think we need to give him a chance.”, I stated as the alarms on his monitor argued loudly otherwise.

It was then that Daniel’s doctor, a colleague and a friend of mine, demanded that I step out of the room now. Before I could argue back, she told me she would come get me when she was done. I stepped out of that room and it suddenly hit me. I crossed that line. I actually crossed it in such a way that I was hindering my own child’s care. My behavior was putting him into jeopardy. Just thinking that brought the flood of hot tears. I ran out of the unit crying.

After what was certainly an eternity, Daniel’s doctor came out to the waiting area to get me. Hugging me, she assured me that Daniel was easily re-intubated and back on the ventilator, pink, stable and now sleeping in his bed. She then faced me colleague to colleague and asked me pointedly if I honestly, as a NICU professional, felt that Daniel was ready to breathe on his own…if he was my patient and not my child, would I have argued with her that way. Of course I knew the answer was no. No, of course I wouldn’t and I knew that. It was then that Daniel’s doctor built up that boundary brick by brick that separated me, the NICU nurse, from me, Daniel’s mom. In order to be the very best mom for my child, I could not, should not, would not be my child’s nurse. It wasn’t easy. It has never been easy as Daniel’s mother or as Zoë’s mother or as Jodie’s mother and certainly as Holly’s and as Hazel’s Mi-Ma. I can’t offer a how-to. All I can offer is that sometimes, for the sake of our children, there are boundaries for us, the parents. Of course we don’t have to like it, we can even push against them if we dare. But just like the ones we build for our children, these boundaries are there for the sake of our children.

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?