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: 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

started from the bottom and now he’s here

Overheard today under The Big Top:

Daniel: Are you proud that I’m going to start 6th grade next week?

Mom: Very proud, Daniel. And very excited too. How about you?

Daniel: Yeah. But I don’t think I’m ready for 8th or 9th grade.

Mom: Of course you’re not ready for 8th and 9th grade. You need to work through 6th and 7th grade first. One grade at a time son.

Daniel: You’re right mom.

Mom: Of course I am. I’m sure that you will make 6th grade life yours.

Daniel: Yeah?

Mom: Yeah. The odds are in your favor.

Daniel: Like when I was born?

Mom: Yes.

Daniel: Like when I was so small that I fit in your hand?

Mom: Yes. You were born with incredible odds against you and yet one by one you beat down those odds. You beat things when you weighed just one pound that most people will never face in their lifetime. 6th grade life? You’ve got this, son.

Daniel: …smiles and hugs his mom…

And then we bring out his NICU memory box from the back of his closet because sometimes lately he wants to remind himself of where he started from.

Daniel: I was really THIS small?

Mom:: You were indeed THIS small!

Started from the bottom…

Yeah!

Bring it on 6th grade life…bring it on.

Oh, and, OMG my little boy, the baby boy who really did fit into my hand the day that he was born, is starting 6th grade next week!!!

 

because you gotta have hope

Here we are at the water park today to celebrate Hazel’s 6th birthday. It was triple digits and as hot as it can be expected to be in the Central Valley. It was hot! But with the water fountains spraying cool water everywhere, and the hot breezes picking up water droplets and carrying them around, it wasn’t so bad. We were in the shade. We stayed hydrated. We played in the fountains and got wet. It was good. It was even better because we all were there for Hazel.

All was good.

Well, except for Daniel. He wasn’t wearing swim trunks because he wore them yesterday. They were rinsed and hung to dry last night but, no, he could not wear them because they were just rinsed and dried. Yes, he could get his clothes wet. Of course it would be okay. His parents and his sisters, all in not-for-long-because it was so hot wet clothes assured him that it was okay, Yes, but no. And so he stood at the edge of the water fountains, watching people running around, getting wet, screaming, yelling and laughing, and he disapproved of it all.

Don’t try to understand. You’ll hurt yourself. Only someone on the spectrum or someone living with and loving someone on the spectrum will get it. You don’t fix this. You don’t force. You just let it be. Of course someone tries to intervene. Someone almost always does…because they know better.

Walk away, I think to myself. Just walk away.

Better yet, stand next to him. Let him talk to you, when he is ready, about whatever he wants to talk to you about. It’s likely to be about Hot Wheels or Legos or the Lego Batman game that is coming soon. Yes, that isn’t very interesting to you. But it’s not about you if you really care about what he is feeling right now surrounded by wet, noisy, crowded chaos and not wearing clean, swim trunks.

I am part of a support group for parents of micropreemies because life in the NICU is scary as Hell and the NICU life…the pain, anxiety and hope never, ever leaves you. You spend, days, weeks, months standing next to your baby’s bedside watching them struggle just to breathe or find yourself facing the agony of making decisions about procedures that may or may not save their lives or spend the first  few years re-living those 132 days every time you find yourself back in the hospital with your child, the former 1lb 6oz 24 weeker and you too will find that it never leaves you. No, not even years later. Participating in this group has been good. Parents like us find that we are not alone…even if we feel that way…sometimes…all the time.

The other night I was messaging back and forth with one of the newer moms in our group whose baby boy is only a month old now and, of course, still in the NICU where he was born. Her little guy is doing as is to be expected two weeks post open heart surgery and on a ventilator. He has his good days. He has his bad days. Of course this means that his parents have their good days and they have their bad days too. For her, today was a not so good day as her little man had a major setback and his feedings were stopped again. As she came home from the hospital, she got a call from her dad who has been less than supportive (her words) of the whole NICU journey questioning every decision she has made along the way. Still, she loves her dad and he loves her, so she poured her heart out, tearfully sharing her worst fears after a bad day in the NICU with her baby boy. His response, she shared with me, was most definitely not what she needed or wanted to hear…especially from family, from her dad.

He doesn’t understand…she tells me.

He has no idea how much it hurts me when he says the things he says…

Why is he like that?

Is he ever going to understand how hard this is?

I want to tell her that it is his own fear and perhaps a little guilt that is talking. I do tell her that.

Is he ever going to understand? Is he ever going to just be there for me, for my baby? Without judgment? Without second guessing everything that I do?

I pause and think of my own son, our own NICU journey and the journey that continues on even to days like today at the water park and the people who have been with us, loving us, supporting us unconditionally all the way…and those who have not. I think of those who have grown to love Daniel, accept him as he is, try to understand him, try to relate to him on his terms, learn how to support him medically, emotionally and intellectually…and those who have not.

I sure hope so, I text back to her.

I still hope so…for us…for Daniel.

Our conversation continued on for some time more where I offered her all the patience, love and support that she needed because that is what she needed at that moment.

Meanwhile, today Daniel soon enough on his terms, in his time, stepped into the fountains and got SOAKED!

 

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.