because “a child will never starve themselves”

Raising my boy child I have learned to not always rely on the tried and true that helped me to survive raising his four older sisters. Boys are definitely different from girls and extremely premature babies are different from full term babies…even when one factors in the adjusted age that managed to annoy some family members.

In order to be discharged from the NICU after a 4+ months stay, Daniel had to be able to take by a bottle 2 ounces of formula every three hours…2 ounces, 60 milliliters, just 12 teaspoons of milk. Really no big deal except that it was a big deal for him. It was a struggle. A real struggle. Have you ever tried to swallow liquid with one of your vocal cords is paralyzed so they can’t effectively protect your airway and lungs while you swallow?

The struggle was and is real.

Sometimes the baby boy was just too tired and couldn’t drink those 12 measly teaspoons of milk…and sometimes it was just too hard and too scary drinking milk and feeling like you’re going to drown all at the same time. Still Daniel’s nurses and we worked hard to get him home working on that drinking 2 ounces of milk 8 times a day…especially after mommy had a major meltdown and kind of went ballistic with a colleague, who as Daniel’s nurse, made the nursing decision as a well-qualified NICU RN to feed him by a tube into his mouth, down his esophagus and into his belly after he failed to eat 2 ounces three times in a row on her shift.

I just wanted my baby boy to come home…oh, and worst Mother’s Day ever.

But FINALLY, glory hallelujah, he did it three days in a row and he was allowed to come home.

And we thought that it was hard to get him to eat in the NICU.

As the weeks went by it was clear just how real the struggle was for our son as he soon stopped eating…STOPPED.

Paralyzed vocal cord

Trachealmalacia

Laryngealmalacia

Reflux

Chronic Lung Disease

So many things going on with this son of ours all at once that required so much more energy than eating and so he stopped eating…literally…and it became all we ever did…try to feed our baby.

All the time.

Failing at it.

All the time.

We tried to tell the pediatrician assigned to his care until his adoption would be finalized but he was certain we were wrong or perhaps not feeding him on purpose because “A baby or child will never starve themselves.

A very small part of me silently cheered when Daniel proved that know it all asshat wrong refusing to eat for over 36 hours with nurses trying to feed him when he was hospitalized with a Failure to Thrive and Munchausen’s by Proxy diagnosis. But only a small part because the only alternative was feeding him by a tube…

for the next four years.

So much work to teach him how to eat, how to safely chew and swallow without food or liquid going into his lungs…how to trust that he could do this…to not be afraid.

And we thought bottle feeding him was hard.

OMG!

Some days we literally were crying and screaming inside, “You have to fucking eat!

Okay, most days.

Actually every day.

And eight years later we still do sometimes.

Thank goodness it’s no longer every day because even he now understands that You Have To Fucking Eat.

Definitely not a children’s book. I recommend you read it while drinking a Scotch neat…read the book and you shall understand.

 

 

 

 

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

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!