[I've sung odes to many specialists through this blog. Social workers, NICU support volunteers, OBGYNS, Early Intervention PTs/OTs, and scattered throughout this blog I've praised respiratory therapists, NICU nurses, MFM (maternal fetal medicine) doctors, and JAM's great team of neonatologists. I dedicate this post to another sort of doctor: the medievalist. I know about a half a dozen of you, and I think you're all amazing. Last year at this time, y'all were just the sort of doctor I needed. And while you can't supply medical-grade caffeine, JAM didn't & doesn't mind hanging out with you either.]
A year ago Jonathan was alternating between doing fairly well and facing another stumbling block. He started breathing fast after his bout of pneumonia, but he also started taking bottles by mouth -- as long as he wasn't breathing too fast -- and we were excited to watch his progress. He ate his first bottle (14 ml) entirely by mouth at four months old. He grew by leaps and bounds and by the end of November he had outgrown preemie clothes and was in newborn clothes most days. While he was under 5 pounds on his due date, a year ago today he was an adjusted age of 2.5 weeks and weighed five pounds and 13 ounces.
An MRI of his brain showed only one small resolved hemorrhage that had healed some time before and hadn't been present at birth. For long term cerebral issues, this was huge and great news. During tummy time over the last week of November, Jonathan started kicking his legs. Steve said he was trying to escape the NICU.
And then, on November 29, he went down for his last NICU surgery. A central line removal. That should be easy. It was usually done with local anesthetic, but (despite protests from his dad and the nurse) they put him under general anesthetic for it because he'd had the central line for so long. Like the previous few surgeries, he did not respond well to the anesthetic. His lungs and gut did not bounce back well from the surgery, and within the day he was taken off food and put back on CPAP. Again. He needed the breathing support for a few more days before he was able to go back to room air.
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On the home front, we were exhausted. We knew the end was in sight, but that didn't make the race any easier. We tried to maintain some sort of normal. We had my sister over for Thanksgiving, and we trimmed the tree that weekend as usual. We had this dream that maybe this would be the last holiday in the hospital.
I mentioned a few posts ago that I had crashed after his second to last surgery. To turn a corner and nearly see the end -- and then have him go back into critical condition -- it was harder than I thought it would be.
Were you ever super busy in college, so much so that you skimped on sleep to power through getting all your projects done? Then, not surprisingly, as soon as it was all over, you got a terrible cold. It was like that, only then we found out, sick and sniffling, that it's NOT really over afterall and we had another major hurdle to overcome.
I had sought out support and had seen my OBGYN. She'd prescribed anti-anxiety drugs, but as they would go into the breast milk and complicate the health story of an already medically complex infant, I decided to save them until I found they were absolutely necessary. She agreed to this plan only after I lined up what steps I would take first: trips to see a counselor/psychologist, and extra exercise to help release the tension. She was sympathetic and supportive. She said that even she had had post-partum issues with some of her children, and reminded me that it was a hormone imbalance thing, and didn't speak to my strength or weakness. The NICU experience makes all that even worse, she said, so treat this like you would any other illness. In other words, don't try to power-through, treat it.
The counselor/therapist/psychologist appointment happened on the same day as Jonathan's central line removal. It was only minimally helpful. And that's an optimistic assessment.
A year ago Jonathan was alternating between doing fairly well and facing another stumbling block. He started breathing fast after his bout of pneumonia, but he also started taking bottles by mouth -- as long as he wasn't breathing too fast -- and we were excited to watch his progress. He ate his first bottle (14 ml) entirely by mouth at four months old. He grew by leaps and bounds and by the end of November he had outgrown preemie clothes and was in newborn clothes most days. While he was under 5 pounds on his due date, a year ago today he was an adjusted age of 2.5 weeks and weighed five pounds and 13 ounces.
An MRI of his brain showed only one small resolved hemorrhage that had healed some time before and hadn't been present at birth. For long term cerebral issues, this was huge and great news. During tummy time over the last week of November, Jonathan started kicking his legs. Steve said he was trying to escape the NICU.
And then, on November 29, he went down for his last NICU surgery. A central line removal. That should be easy. It was usually done with local anesthetic, but (despite protests from his dad and the nurse) they put him under general anesthetic for it because he'd had the central line for so long. Like the previous few surgeries, he did not respond well to the anesthetic. His lungs and gut did not bounce back well from the surgery, and within the day he was taken off food and put back on CPAP. Again. He needed the breathing support for a few more days before he was able to go back to room air.
=====================================
On the home front, we were exhausted. We knew the end was in sight, but that didn't make the race any easier. We tried to maintain some sort of normal. We had my sister over for Thanksgiving, and we trimmed the tree that weekend as usual. We had this dream that maybe this would be the last holiday in the hospital.
I mentioned a few posts ago that I had crashed after his second to last surgery. To turn a corner and nearly see the end -- and then have him go back into critical condition -- it was harder than I thought it would be.
Were you ever super busy in college, so much so that you skimped on sleep to power through getting all your projects done? Then, not surprisingly, as soon as it was all over, you got a terrible cold. It was like that, only then we found out, sick and sniffling, that it's NOT really over afterall and we had another major hurdle to overcome.
I had sought out support and had seen my OBGYN. She'd prescribed anti-anxiety drugs, but as they would go into the breast milk and complicate the health story of an already medically complex infant, I decided to save them until I found they were absolutely necessary. She agreed to this plan only after I lined up what steps I would take first: trips to see a counselor/psychologist, and extra exercise to help release the tension. She was sympathetic and supportive. She said that even she had had post-partum issues with some of her children, and reminded me that it was a hormone imbalance thing, and didn't speak to my strength or weakness. The NICU experience makes all that even worse, she said, so treat this like you would any other illness. In other words, don't try to power-through, treat it.
The counselor/therapist/psychologist appointment happened on the same day as Jonathan's central line removal. It was only minimally helpful. And that's an optimistic assessment.
She asked me to explain what brought me in. She crossed her black nylon legs and turned her wheeled office chair to face me. I was folded into a leather armchair in the corner with my drug of choice (an americano) next to me on the windowsill. As I talked I stared at the colorful scarf draped over her simple and slimming dress or out the window at the cold dead branches. She was the woman with a solution to everything, highly competent and intelligent. I was in my own winter of life, no signs of flourishing. She could handle my story, I thought. I looked at her qualifications, posted in frames on the wall. I'm sure she'd heard much worse. I checked my phone to see if Steve had texted me about Jonathan's surgery, and seeing nothing, I set it aside and set myself to my own bit of surgery.
I explained, I thought, in a very level voice without too much drama -- just the facts -- all that had happened in our family in the past five months. I consulted my coffee cup and turned the paper cup in my hands whenever it got a little difficult to explain. I tried not to make it too gory or overblown. I didn't even mention the blood transfusions or the time he turned grey in my arms. Just his early birth, the surgeries, the hospital stay. Just the simple stuff. It was, after all, our first meeting. Despite my down-play of the situation, she looked sympathetic and shocked.
I explained, I thought, in a very level voice without too much drama -- just the facts -- all that had happened in our family in the past five months. I consulted my coffee cup and turned the paper cup in my hands whenever it got a little difficult to explain. I tried not to make it too gory or overblown. I didn't even mention the blood transfusions or the time he turned grey in my arms. Just his early birth, the surgeries, the hospital stay. Just the simple stuff. It was, after all, our first meeting. Despite my down-play of the situation, she looked sympathetic and shocked.
She then explained to me that I
was like a fire alarm that had been pulled. I was constantly alarming, even
about small things. She said I should try yoga. She passed me a brochure about post traumatic stress and anxiety.
Constantly alarming? Overreacting? She hit a nerve, and not the right one. I just needed to relax? I left confused. I had told her I was having flashbacks, but I didn't think I was a pulled
alarm. So, yoga and visualizing were the answer, then? I told her I'd be running instead. I could handle running. I didn't want at all to go deep into myself.
I walked out the door of the
psychologist's office a bit disheartened. I made the next appointment with her, but wasn't sure how much it would help. I was NOT a fire alarm.
I hadn't even cleared the waiting room when my phone rang. It was Mimi's daycare. "Your daughter has had a terrible accident" they said.
"Oh no, what hospital?" I thought.
"You'll need to bring another pair of pants to school" they finished.
I hadn't even cleared the waiting room when my phone rang. It was Mimi's daycare. "Your daughter has had a terrible accident" they said.
"Oh no, what hospital?" I thought.
"You'll need to bring another pair of pants to school" they finished.
So maybe I over-react a little. (Or maybe I just know how accident prone my Mimi can be) But a fire alarm?
Blaring lights? Not all the
time.
I dumped my paper cup on the way off the elevator. I climbed into my car to head home for new underwear for Mimi. Since the professional's analogy was so bad, I
tried to think up a better one. The psychologist had told me to visualize,
so I visualized. "There" I mentally stabbed at her, "I'm doing what you told me to do!"
I thought of myself not as alarming unnecessarily, but instead as a cool glacial brook. Yes, that's what I was. That was my natural state. But then I'd accidentally wandered through hot springs. It's where my path had taken me. I knew I could keep flowing, and I'd find the glacier again, I just didn't want to end up evaporating in steam as I tried to get through this piece of the mountain.
Sounded good.
I thought of myself not as alarming unnecessarily, but instead as a cool glacial brook. Yes, that's what I was. That was my natural state. But then I'd accidentally wandered through hot springs. It's where my path had taken me. I knew I could keep flowing, and I'd find the glacier again, I just didn't want to end up evaporating in steam as I tried to get through this piece of the mountain.
Sounded good.
Do you remember Christina from the
day things went wrong? and the oxytocin
rules? She'd been through most of this drama with me. I told her about the
appointment and my made-up analogy, and while agreeing I wasn't a fire alarm, she told me my analogy was bad.
She reminded me that cool streams come FROM glaciers. They don't flow TO glaciers. So I guess I'd never find the cool ice again.
"I meant I would flow through another glacier. I can do that, right?" I replied, "And get more cool water that way? Please tell me it is so, because I'm tired of hot sulfur smells." I dared her to come up with something better.
And so she did.
She reminded me that cool streams come FROM glaciers. They don't flow TO glaciers. So I guess I'd never find the cool ice again.
"I meant I would flow through another glacier. I can do that, right?" I replied, "And get more cool water that way? Please tell me it is so, because I'm tired of hot sulfur smells." I dared her to come up with something better.
And so she did.
"I think of you more
as the youngish tree with deep roots that's planted between the street and the
sidewalk and is currently in the middle of massive street construction,
stubbornly hanging on and waiting for the street to get quiet and pleasant
again. And in the meantime, you're making people feel better just by being
there," she said.
With friends like these, who needed psychologists? You are strong, Christina reminded me. Strong and capable. You can get through this without being uprooted.
I asked Christina if she could perhaps
prescribe me some drugs, too, being a doctor (PhD) and all. So she took out her
black bag of doctor tools. She is a medievalist,
remember? She discussed with me the imbalance of my humours and how
to deal with my excess of black bile from the cold autumnal weather. She
encouraged me to put on music and dance and eat warm, moist, succulent,
easy-to-digest foods.
My doctor friend tells me I'm a solid
young sappling who needs to get on her groove and indulge in comfort foods. I can handle this.
Seriously, why didn't I seek out Dr.
Christina earlier?!?
Moral: Sometimes medievalists are better than psychologists for what ails you.
Also, I hear sometimes ale ain't too bad for what ails you, either.
Moral: Sometimes medievalists are better than psychologists for what ails you.
Also, I hear sometimes ale ain't too bad for what ails you, either.
Loved this post! I felt like people thought I was overreacting when I thought I was calm and collected, too. Worse was when I thought things were terrible and I needed a pick-me-up but everyone thought things were ok. Your friend sounds like a keeper - hang on to her! :)
ReplyDeleteAw! Thanks Andrea! Good to know I'm not alone. (? maybe? I don't know. Being alone in this case might mean that there's loads of good things happening in the world instead...)
ReplyDeleteAnyway, I figure that maybe the WORDS are so shocking that they ASSUME overreaction where there is none? I don't know...