Monday, June 18, 2012

5 things I learned in the NICU

Having spent fourteen days living in a hospital, crying and worrying and waiting for Emmett to get better felt like a lifetime but everyone I complained to about it said the same thing "soon it will feel like it never happened". When people said that, I pretty much wanted to punch them in the face, but of course, as with most statements that stir that response in me, it turned out to be true. Now that we've been home for more than a week, it really does seem like the whole stressful experience was just a bad dream and for the most part it has had no lasting impact on any of us. But looking back there are a few lessons I learned while I was waiting for Emmett to recover from his traumatic birth that I'd like to hold on to.

1. Doctors and nurses know lots of stuff.. and so do mums. 

I am confident that the majority of medical professionals we worked with at Mt Sinai were the very best at what they do, and I am so grateful that we were in such a good place for Emmett to receive care. On the other hand, I'm also amazed by how frequently we encountered practitioners who were eager to provide advice and opinions on subjects well outside their area of expertise.

For instance, when I, as an emotional mother who was separated from her newborn sobbed through asking a nurse how long babies might cry before anyone tended to their needs in the NICU, her response was "Oh it is good for baby's lungs to cry it out." Not only was this in no way comforting, it is also absolute nonsense of the type you might hear from your great-grandmother who thinks you are an overly indulgent parent. Maybe some mums might have taken that as medical advice. I took it as an indication that I shouldn't leave Emmett's side when that nurse was on shift.

Although Emmett was moved to "on demand" feeding, from scheduled feeds, as soon as he started to breastfeed (about four days in), I had some nurses who insisted on waking him up every four hours at night to eat even though he clearly wasn't hungry and some nurses who weren't happy with him eating every two hours during the day and wanted to "bottle him" instead. I knew from experience that he could be trusted to set his own schedule (particularly since weight gain wasn't his issue), and I checked with a lactation consultant just to be sure, and she confirmed what I already knew. The nurses know what they know, but not everything is their area of expertise. Even surrounded by monitors and wires and bright lights, mummy instincts have their place too.

2. Patience, obviously, is a virtue

In a hospital nothing will ever happen "on time". In fact, the concept of "on time" is just totally irrelevant in a hospital environment. Patient loads, shift changes, unexpected emergencies and general bureaucratic BS will ensure that no matter when you THINK something is going to happen, it will happen much, much later.

At first I found this so incredibly frustrating, and I harassed every nurse and doctor and respiratory therapist and janitor that I saw, but by the time we were looking at the end of our stay, I got into the rhythm of the hospital and knew that I needed to let go of expectations around timing and always add a few hours to anything I was told would happen.

In fact, even as we awaited Emmett's discharge papers, with only the speed of the printer standing between us and home I had convinced myself that we'd remain in hospital for four more days. And I was sort of OK with it.

3. Being a mum sometimes (often?) means being a pain in the ass

As much as patience was an important virtue to learn through the experience (and one I wish I could say I was likely to hang on to), the flip side of the delays and bureaucracy is that no one knew more about Emmett's care and needs than I did, and no one was working as hard to make sure everything was done as it should be as I was (even though most of my work was just the work of worrying).

Of course, there is very little you can control in a serious medical situation like we were in, but I knew I could learn as much about what was going on as possible, try to remain analytic about the situation so that I could work with doctors and nurses in a positive way, and just plain remember all the details.

When the doctor made the orders for Emmett to be extubated, the first hurdle before getting him there was weaning him off of the morphine that was keeping him sedated. He was to be weaned one unit every six hours.. I know because I was there when the doctors made the order on rounds. How many nurses remembered to turn the amount down at each six hour mark? Not one. I reminded all of them as we crossed closer to seven hours, every time.

They're busy, I get it, but every extra hour of morphine was an extra hour of intubation and therefore another hour further from Emmett getting better, and that mattered more to me than to anyone else, so you can believe that I made sure it was happening. Maybe I was a pain in the ass, but I was a pain in the ass who got to hold her baby for the first time a few hours sooner than I would have if I hadn't been pushy.

When we were nearing discharge, I apologized to a few of my favorite nurses and doctors for any times I had been too pushy or demanding, and they all said the same thing. Even if it challenges them, they prefer a parent who's actively involved in her child's care to the alternative.

4. There is peace in knowing when there is nothing you can do

Once Emmett got through intubation, extubation, CPAP and antibiotics we were left with one thing in the way of taking him home - his need for oxygen as determined by one thing.. his need for oxygen. At that point, the only answer I could get from doctors and nurses and everyone else I bugged about how much longer we'd be in hospital or what else could be done to help Emmett was the same "It's just up to him".

And that made me feel more hopeless than anything else about the situation had. I felt like there had to be something I could do. Some care he wasn't getting, medication we hadn't considered, even someone I could talk to who might just realize that he was needlessly being held and send him home.  I was the most miserable I had been and we were the closest to getting through the experience that we had been. Emmett was truly on the road to recovery but he really was setting the pace for himself and that was making me crazy.

Actually I was making myself crazy. And the only person who can really talk me out of it when I'm making myself crazy happened to be the person who was taking care of Ollie that day, and who drove me back to the hospital that night after dinner. I don't remember the details of what my Dad said, but it was a variation of advice he's given me for a long time, in lots of situations, and it basically boils down to the most essential truth in life, you can only do what you can do, and then you have to let go. It's obvious, but something I could only hear from someone I completely trust.

As fate would have it, that night the nurse Emmett had was neither a slacker night-nurse, nor a keen masters student, super-competent nurse. She was exactly the nurse I needed, preaching exactly the same philosophy as my Dad. The philosophy of letting go. I slept in the nursery that night, in a little chair bed she made for me, behind the screen she set up, in the darkness she arranged for me somehow, and she never once entered that space.

Instead of thinking about the monitors and numbers, I just pretended to be at home in bed with my son, nursing him when he needed it and sleeping when I needed it and had the best sleep I'd had for two weeks. In the morning the nurse woke me up before shift change and sent me to shower and eat before rounds started, and I felt relaxed. When I got back to Emmett's bedside his oxygen had been removed and it never got put back on!

5. Everyone we know is amazing

This is the most important lesson that our family learned through this crisis period in our lives. From neighbours who took turns making us meals and stocking our freezer, friends who did shifts driving us to and from the hospital and babysitting Oliver, family who kept our home clean and comfortable, and internet friends who offered constant support and encouragement, we were totally surrounded by love and care through the whole miserable experience.

One night as we were waiting for my ride to the hospital to arrive, and Chris was unpacking a bag of groceries a friend had left on our doorstep he joked "Why is everyone we know so awesome? We are definitely not this nice." I like to think that we'd step up for our friends and neighbours in a crisis too, but I hope we never find out.

It is true that it already feels like Emmett's two weeks in hospital, getting the care he needed to be able to breathe on his own, was just a bad dream. But it is one of those dreams that haunts you a little when you wake up from it, that you carry around all day just around the edges of your consciousness. It comes with a little bit of anxiety (watching his breathing while he sleeps, checking his lips for signs that he isn't getting enough oxygen) and some questions about whether things should have been different (more on that later), but as we get further and further away from the experience, I hope that I'll let go of that too, and just hang on to a few good lessons learned.

1 comment:

  1. Meg - this is, I don't even know. I am so in awe of you - your ability to hold it together during all of this. Your confidence to question the medical staff and stand up for the needs of your son. I imagine that many parents with babies in the NICU will be googling advice on their smartphones, while their babies rest. I hope they'll come across the post and be inspired and comforted - I know I would be.

    You are a super mom.

    I'm thinking of you guys often. I can't wait to meet Emmett!


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