Sam’s Stay in the NICU – or – The Medical Industrial Complex Strikes Back

First Photo

Sam, Brooke and I in the NICU about 2 hours after he was born, and one hour after the apneic event.

And so we come back around to where we started.  This picture shows Brooke and me, neither of us having slept for more than 24 hours, Sam having been born and then having apparently stopped breathing and then resuscitated by the medical staff, and then hooked up to the tiniest IV you’ve ever seen, through his right arm, so he could get antibiotics and glucose, to help him recover from the trauma he had experienced at just one hour of life.  Like I said, you learn nothing from a photograph.  The story I’ve told so far might make you look at our smiles a little differently.  There were still, though, significant events to come – though none quite as trying as what had just happened.

We didn’t follow Sam immediately out of the room, which was scary enough, but we also didn’t stop to think very hard about it, because we had never experienced anything like this.  After a little while, a nurse walked us down to the NICU.  Going in, we had to wear disposable yellow smock-like gowns, and we also had to wash our hands up to our elbows.  We also had to get buzzed in by a nurse sitting at a desk.  Then we had to turn to the right, and walk past several very, very tiny looking, extremely fragile and in some cases gravely ill babies.  We walked all the way down to the end, where a middle-aged nurse with blonde hair was waiting for us.  We looked at her like our life was in her hands, and thanked her many, many times.  She protested that it was just her job.

Around this time, I started formulating a thought I’ve been turning over ever since.  When Hillary Clinton was dragged through the center-right media and Bill Clinton’s presidential candidacy was considered to be in serious jeopardy in 1992 because she approvingly said that “it takes a village to raise a child,” I realized something: that’s both true and not a metaphor (of course that wouldn’t be the first time an American politician was dragged through the mud for telling the truth).  It actually takes a village worth of people to raise a baby up to adulthood.  But (and here’s what I really realized)… It takes a village, but a modern American hospital is the most oddly organized village you will ever encounter.  What’s more, the United States has basically failed at any semblance of urban planning or community outreach when it comes to that village.  This is around the time when I started making the list of people who had seemingly made Sam’s life possible.  That oddly structured village.

We took Sam out of an incubator-looking crib which was equipped with a monitor.  He was attatched by his wrist to an IV, and by his foot to an oxygen-, pulse- and blood-pressure monitor.  It was a struggle to extract him from his crib while managing all these wires and tubes.  We spoke with the nurse for a few minutes and she found out that no one had taken a picture of all three of us yet.  So she took the picture you can see above – which I promptly sent out to facebook – but in that post I told none of the story I’ve just narrated.  My secretary at school thought that maybe Sam had broken his arm during the delivery, because that’s what the IV looked like.  But otherwise, just looking at that picture would give you no hint to what had happened over the past two hours.  Perhaps a clever observer with hospital experience could discern some NICU context clues, but by and large, we didn’t tell anyone other than our closest family and friends.

After accepting the nurse’s assurances that Sam was doing just fine, the doctors came around.  A new shift was starting, and so the old doctor was accompanied with two new doctors – Dr. Gonzalez and Dr. Patel.  They were both on the older side, and not what you might picture when you picture pediatricians.  Over the next couple of days, they were relatively tough to get a hold of.  We had to work through the nurses.  But both in their own ways found times and places to speak with us.  For now, Dr. Patel took Sam in his arms and asked a few questions.  Then he explained that he wanted to see how his reflexes were working, so he flicked Sam’s tiny foot hard enough to hurt.  Sam reacted vaguely; I’m not really sure what Dr. Patel saw, but then, I’m not a neonatologist.  Either way he was reasonably satisfied and kept walking to the next bed.

A few minutes later (it was now about 8:45am), Brooke and I went to the “Mother/Baby” wing, into a new room we’d be staying at least the night in.  The nurse told us to lie down and get some sleep and they’d let us know if anything happened.  We collapsed – Brooke on a hospital bed, me on a couch pulled up along side.  In spite of our profound concern, terror and sadness, we both fell asleep for perhaps 3 hours.

I was woken up from one of the deepest sleeps I’ve ever felt by Brooke saying “should we go check on Samuel?”  Her voice was hoarse and worn out, but it was also the sweetest thing I’ve ever heard her say.  Perhaps then, for the first time, I truly realized I was a father.  Things had unfolded at such a frenetic and chaotic pace that I’d barely let reality sink in.

When we returned to the NICU, re-donning our weird yellow smocks and re-scrubbing our hands, as we made our way down to the end of the room, we saw that Sam wasn’t there.  I immediately assumed the worst, but before I could finish the thought, a nurse was waving and softly shouting at me from the other end of the room, gesturing us down that way.

The entryway formed a T stop where the nurse who buzzed us in sat.  To the right was the NICU proper, but to the left was the “intermediate care” room.  Sam was down there with a different nurse.  They explained that he was doing well enough that they had downgraded him.  This room had only four beds and one nurse.  His bed here had a printed-out name tag which I took a picture of.  We’ve still got it at home somewhere.’

NICU photo

I lose track of the sequence of events around here, as things finally assumed at least a bit less intensity.  Sure, our son was still in the NICU, but my calculation, he had now breathed at least 4,000 more breaths than he had when the apneic incident occurred, and this was enough for the rational part of my mind to start to take back over again, and to take a step back from the crisis posture I had been in for the last six hours, and when you considered the relative stresses of the delivery as well, pretty much, the last 30 hours.

The next few hours were taken up with struggles around breastfeeding, and though those struggles are pretty normal actually, and we had been told about them in our Bradley Method classes, as you probably have experienced, when something is stressful on one front, everything else is colored by that stress.  Being in a hospital doesn’t help either.  Somehow the difficulty Brooke had in extracting colostrum became overlaid with the trouble Sam had had breathing, and so now everyone was more or less down our throats trying to get Sam to get fed formula.

We really appreciated just about everything everyone at Illinois Masonic hospital did for us, but one unambiguously negative thing happened around now.  The nurse working in the intermediate room (whose name is absent from my list), who had a foul attitude, really upset Brooke.  I asked her when we’d get to speak with the doctors, and she more or less snapped “they’re seeing to the babies in the other room.  They are sicker than your child.”

She was obviously defensive for some reason other than our presence here.  She said they’d need to give Sam some fomula soon, because he was hungry and, to quote her, “your body isn’t making what your son needs.”  Now I’m no psychologist, nor am I a neonatal nurse, and so I would never presume to tell one how to do their job, but there is simply no way in Hell that is a good thing to say to a mother who has just delivered a baby which has recently been admitted into the NICU.  I could tell how upset Brooke was, and how hard she was trying not to show it, so I  had to unleash my inner amateur lawyer.

“So they’re feeding him glucose, wouldn’t that make him less hungry?”

“No, that is just for hydration.”

“Well I understand it’s hydrating him, but also, isn’t it giving him calories?”

“No, that has no calories in it.”

“But glucose is what’s in sugar right?”

“No if he need nutrition we’d be giving him a different IV.”

“Okay but there are some calories in that, calories a baby wouldn’t ordinarily get?”

“No.”

I let the conversation go.  What I wanted to say was “okay lady, I didn’t go to med school, but I did take 5th grade science class.  And I know that glucose has calories in it, and that one thing that a child that has consumed a lot of such calories might do is be lethargic.”

A little while later the doctor came in and said something like this:

“So we think that it’s going to be a littler tougher for him to start breastfeeding right now, because the glucose might be making him lethargic, it’s sort of filling him up artificially.”

I looked towards to nurse as if to say “I’m sorry could you repeat that Mr. Doctor, I didn’t quite understand and the nurse told me the opposite.”

It still makes me mad to type about.  I hate when I’m in a conversation where we both know I’m right and for some reason one of us can’t admit it.  And now my child’s health and my wife’s emotional well-being was at stake.

We eventually got them to compromise and allow Sam to drink donated breast milk out of a bottle or a contraption that’s rigged to make him think he’s breastfeeding so he got in the habit.  Later that night, faced with a similarly manufactured crisis (it’s really, really common for babies in the first day to be hungry and for their mothers not quite to have any milk yet), we again got the nurse to relent and give him donor milk.

What’s frustrating about this circumstance is that something totally unrelated – Sam having had trouble breathing – got crossed with some other things that were unrelated, and then the hospital staff are all trying again to advance every possible intervention as soon as possible.  We again did our best to keep them at bay.

Later on that afternoon we started accepting family members’ offers to come visit.  Sam was still in the NICU, and we could only bring 2 people total in there at once, so when Brooke’s sister and husband came, we had to take each of them in one by one, and the same with Abby and Alex, and my mother and father.  That’s 2 people including one of us, so it was Abby and Me, then it was Alex and Me, then it was Brooke and her sister, then it was Brooke and her brother-in-law.  We’ve got a picture from this time of Abby standing next to Sam.  She was very afraid to hold him.

Abby

Abby, Alex and I went to the Hot Diggity Dogs, a Chicago-type fast food place underneath the Wellington Brown Line stop.  We got our food to eat there and brought some to-go food back for Brooke.  I had had about 3 hours of sleep in the last 48 hours, so I’m sure I was just a ranting lunatic.  On our way over there and back, I told Abby and Alex a highly crazed and even more incoherent version of what I’ve just described here.  I remember having trouble maintaining my concentration while I talked, doubling back over and over again every time I got distracted, or even took a bite of my cheeseburger.  Alex kept redirecting me: he has a wonderful capacity for listening, and really caring about whatever whoever he’s talking to has to say.

We stayed in that room two nights – the first alone (which was really hard), the second after they let Sam out of the NICU.  He stayed with us.  That’s the night we had the really strange nurse named “Bo” who was some sort of Polish Mary Poppins, the second person we had to dissuade for force feeding Sam formula.

The next day, Brooke’s father and stepmom came to see us.  They took hundreds of pictures.  It was generally joyous.  I gathered up all of our belongings and worked as hard as I could to get us out of there.  A hospital works very closely though.  It took until around 4pm on Friday before we finally escaped, not without much more stuff than we had come with, most notably a baby boy, a hospital-grade breastpump and a chilled cooler bag full of donor milk.  We never had to use this last one, because of course, Brooke started breastfeeding him like a normal baby within a few hours of our arrival at home.

On our way out, they again made Brooke use a wheelchair.  This was absurd considering we had been in the hospital for around 60 hours, and never during that time had Brooke not walked on her own.  But on the way out, she was told, she needed to ride in a wheelchair.

While she was being wheeled down, Brooke’s father and I walked to his car with armfuls of stuff.  While he showed me how to attach the car seat base into the car, to make conversation, I had just told him his daughter was pretty tough.  He offered, “Yeah, but also, the thing is, she’s a wimp.”  Then he started telling me about the time he dropped Brooke off at college.  He said she opened the door and he gave her a hug.  Then, he said, when he was driving away, he looked at her in the rearview mirror, and he “could tell she was just so scared.”

[That’s how touching Scandinavian stories go – it’s not about what was said, or even how it was said, but really just, the point of the story is usually that something was said, as opposed to the default stance of silence].

What I didn’t then know was we’d only be one the one night, and right back onto the hospital drumbeat just a few short hours later.

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One Response to Sam’s Stay in the NICU – or – The Medical Industrial Complex Strikes Back

  1. Alice Neve says:

    You have the “Scandinavian Story” characteristics spot on, Josh!

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