Forgiven But Not Forgotten

As life carries us away from the NICU days, it becomes easier to forgive how traumatic those months were, but we never forget them. Sometimes, I feel like I am a different person wearing the costume of the person I once was. On the outside, I look very much the same, but in the middle of a simple conversation with an old friend, I’ll stumble. I don’t know how to answer questions about what I’ve been doing these last years. It’s all too personal and difficult to toss haphazardly into a light conversation, and so I must seem brusque or quick to change the subject because all of the things we heard and saw and felt still touch us in ways that are absolutely unexplainable in a quick conversation.

And as busy as I am and as healthy as my kids are, I never forget where we’ve been. Little reminders touch me throughout each day. Someone mentions blood pressure, and I think about preeclampsia. I wash my hands in a gas station bathroom, and the automatic paper towel dispenser is the same brand as the ones that I must have used 1,000 times in the NICU. I see a newborn and think no matter how tiny that baby seems now, there was a time when I thought newborns were giants.

Sometimes, I am completely blindsided by the welling up of such ferocious emotions. I was watching a reality TV show (My Five Wives) last weekend, and in the episode, a healthy, young pregnant woman gave birth within a matter of hours to her first child, a baby boy, at 25 weeks. Baby Huck’s birth reminded me so much of my experience with J that I started crying. And then I cried harder when the baby’s father said that the baby was having so many good days that he was afraid for the bad ones. I knew exactly what he meant, how you try to steel your emotions for all the possible heartbreaks ahead. And how you live in a space of being afraid to freely love your baby but loving your baby anyway, so much so that the thought of having him taken from you makes you unable to find any peace. Each moment of the day is filled with fear, and the journey feels unending.

The more time that passes, the more I believe this past is never dead. There is always a place within preemie parents where our babies are tiny.

Writing A Letter, And Other Odds And Ends

I disappeared from the blog this week to take care of sick kids. Poor M has had her first serious illness–well, really it was a combination of three minor illnesses that sent her into a spiral. She had hand, foot, and mouth disease, which is so common among 18-month-olds, on top of an upper respiratory viral infection and an ear infection. Her body just freaked out on Sunday morning, and she had a febrile seizure and turned blue before we could get her to the ER. Honestly, I’m still struggling with the febrile seizure–even though I’ve been assured that the seizures themselves aren’t life-threatening–and I can’t even write about all that happened yet.

But, M is feeling better, which always makes Mama feel better!

I’m also trying to get our ducks in a row for our move at the end of the month. Though we’ve moved plenty of times, this is our first move with children, and I dread it. I mostly hate taking the kids away from their school and their friends, and I know it will be a challenge to keep things relatively normal for them during the actual move. I try to remind myself how flexible kids are and that this will be a good thing for our family.

My writing project for this week is to compose a letter to J for his 4th birthday, which is in a month. How did this idea just now dawn on me? I think I’ll make it a tradition for the kids, but I really wish I had started it years ago. The upside to being the firstborn is that you get all the firsts and all the pictures. The downside: your parents learn as they go with you!

My letter idea is that it’s a way to reflect on how the kids have changed in a year, what they love at a specific age, and all the funny things they say and do. I’m behind on editing photos, I gave up on baby books (I guess I understand why my mom left my baby book incomplete), and I should have finished J’s scrapbook nearly three years ago. But, one thing I know I can do? I can write a letter.

More Than You Deserve

I woke up just as stressed this morning as I was yesterday and the day before. I am fed up with negotiating over the sale of our house. This morning, I felt like I was walking around in a black fog.

Then, I heard M in her crib, and when I went to get her, she was sitting in her bed. She smiled her bright, toothy grin and held up a doll. I asked her if she was playing with a toy, and I took it from her. I kissed it and handed it back to her. She pretended to kiss it. I looked at that precious, joyous gift of a child, and I could feel the black cloud lift. I picked her up, and she started patting my back with her little baby hand, as if she was just overjoyed to see me.

Sometimes, having kids is draining. Other times they give you exactly what you need. And some mornings, they give you even more love than you deserve.

Brake Lights And Bumpers

This is my first time selling a house. It will be our fifth out-of-state move but our first with kids. I thought I was managing the stress.

Last week, I was talking to J in the car, and I thought I had waited until the garage door opened. But, when the garage door reached out and bit the back of my car, I realized that it must not have opened all the way before I started backing up. My husband fixed the garage door, but we’ll need a new brake light.

The very next day I locked myself out of the house. When my husband came home early from work to open the door, he found my keys. In the garage. So, really I wasn’t locked out. And he didn’t need to come home early.

On Monday, I started the week by backing into a car at J’s school. In my defense, I was parked on a hill, and anyone who drives an SUV or a van knows that there’s a huge blind spot behind the bumper. A car must have pulled right behind me just before I started checking my mirrors, and I never saw the car. I guess I’ll try not to choke on the $600 for a repainted bumper.

I’m on a roll. And not in a good way.

So, I decided to get back on an exercise regime. I clearly need a better way to manage my stress, and walking is much cheaper than brake lights and bumpers.

Mama Bear

One evening, about a month into J’s NICU stay, my cell phone rang, just as my husband and I were walking into our house. We had left the NICU about an hour earlier, and then we’d sat in rush-hour traffic. So, I was just hanging my purse on a chair when I heard my cell phone.

I saw that someone from the NICU was calling, and my stomach did a free fall. We rarely heard from the NICU; they called maybe four or five times over the 91 days J was hospitalized. I was generally able to repress the fear that when the phone rang it would be the NICU telling us something was wrong, but I still jumped every time I heard my phone ring. And now it really was the NICU on the phone.

When I answered, it was a nurse calling (oh heavens), and though blood was rushing to my head, I managed to hear her say that J was fine but that the cardiologist wanted to speak with us (oh heavens).

We had been told weeks earlier that J had a heart murmur but that it wasn’t the kind most preemies have and that heart surgery would be unlikely. That week a nurse had informed us that a pediatric cardiologist was scheduled to see J again, but the NICU rarely communicated any specifics about specialists—they probably weren’t always entirely sure when a specialist would make rounds.

So, on that evening, not only was I surprised to get a phone call from the NICU, I was completely unprepared for any news from a cardiologist. The cardiologist on the phone was not the kind, quiet man I had seen passing through the NICU. It was a woman I’d never met, and she had such a thick accent that I had a difficult time understanding her.

She told me that J had pulmonary stenosis, which meant that one of the arteries into his heart was too narrow. It was causing a pooling of blood in his heart, which accounted for his heart murmur.

And that is about all the information I got.

That’s it.

I had what felt like hundreds of questions hit me like sand in a dust storm. Would he need surgery? Would he live a normal life? Could he be active? Would this condition worsen?

I kept thinking that we’d weathered so many concerns for his health in the early days. He had proved to be so healthy for a baby born 14 weeks early. And now this.

When I began to ask some of my questions, the doctor cut me off. I was confused. Why would someone call and give me a diagnosis and then refuse to provide any information about it?

So, I asked if her written report would be available in J’s hospital records, so that I could read it for myself.

J’s medical records were a sore spot for my husband and me. Parents were not supposed to open the binder of medical records that sat openly on the table next to our baby’s bedside. Any Tom, Dick, or Harry from the hospital could pop by and open it up to see any number of private facts, but J’s own parents—and legal guardians—were supposed to ask permission and then wait for a doctor to watch us while we opened the binder, just in case we had questions. Some nurses were rude and vigilant in their enforcement, while others encouraged us to access the information in it at our whim, which completely confused us in our early NICU days. We were never formally told of the policy, only chastised when we failed to understand the Golden Rule: do not open the binder. When we realized the extent of the dysfunction over medical records, it became an undercurrent of irritation for my husband and me. I know that J’s medical records legally belong to me. I have access to them whenever and wherever I choose, but we walked a fine line. I felt that ruffling feathers at the NICU and having a knock-down drag-out over medical records was an unnecessary distraction from J’s medical care—unless it became a crucial fight. So, for the most part, my husband and I just waited until no one was watching, and then we opened the binder to check for the most mundane facts, like when J last pooped. “The Chart-checkers” is what we named ourselves.

Anyway, I knew the cardiologist would write a report, and since she was less than forthcoming, I thought I’d just go to the trouble of requesting permission from a NICU doctor to read the report.

But, what she said stopped me. Cold. Before I could say another word.

“I’ll write a report, but you won’t understand it,” the cardiologist said, with an unexpected harshness.

Not: you might not understand it. Not: it will be hard to understand. Nope, my incompetence, it seemed, was a sure thing

For a second, I thought maybe I had heard her wrong. My brain kept trying to process her response, and then when it finally did, my blood pressure shot off like a cannon. This time it wasn’t swirling blood in my head and a sinking stomach. I just felt fire. A raging fire inside my head.

First of all, I’m not stupid. I know I’m not perfect, but I’m darn sure about one thing: I am notstupid. I not only deserved information on my baby’s diagnosis, I needed information, because I would be the one taking him to follow-up cardiology appointments. It was my legal right to see the report, regardless of whether someone thought I’d understand it. And, um, I can read. At that point, I had almost earned my Ph.D., which would certainly qualify me to read. I was plenty capable of asking for clarification for something I didn’t understand, and, seeing as how I wasn’t supposed to read any medical records without supervision, I could ask the doctor or nurse standing over my shoulder for help.

I could feel myself coming unglued. All the emotions I had bottled. All of the frustration and sadness that I had shoved into the dark recesses of my brain. It was all escaping and wreaking havoc on what little shred of patience I had left for a pediatric cardiologist who had been practicing medicine just long enough to forget how powerful her words were.

I’ll admit that I’m pretty sure I screamed into the phone, “You don’t think I will understand it? I won’t understand! I can ask if I have a QUESTION!” And then I pulled the phone away from my face, as if I could look her in her emotionless eyes. I shoved the phone back against my ear and yelled, “I CANNOT talk to you. You’ll have to talk to my husband.”

She probably had no idea why I was so angry.

It was the best I could do. I had completely flipped my top, and I knew there was no going back. Maybe in person a look of kindness from her would have slowed my rage, but over the phone, I could see no sympathy, and all I could hear was her stunned silence. I knew that I was so offended and so hurt that if I kept speaking with her, I would just scream obscenities, which would do nothing to help J. So, I threw the phone at my husband, and I told him, through gritted teeth and plenty loud enough for the emotionally-removed pediatric cardiologist, “She won’t answer my questions, and she doesn’t think that I’ll understand.”

My husband, while furious on my behalf, was patient and deferential. He was able to extract a few more answers from her. Just a few.

The next day I opened the medical binder, in front of God and everybody, and I plunked myself down in the chair next to J’s bedside to read the report. I saw a nurse or two look askance at me, but this time I wasn’t sorry. I wasn’t going to wait a few hours for a doctor to find time to be present. One nurse passed by and kindly asked if she could help, which was, I’m sure, her pleasant way of reminding me that I was supposed to leave the binder closed. I explained that we wanted more information about my son’s diagnosis and that the doctor was less than forthcoming, so I was reading her written report. The nurse seemed to understand, and she left me alone without reprimanding me.

The report was simple. It listed J’s condition and explained that it had worsened over his short lifetime. It recommended a cardiologist see him again before he was discharged and that he be followed after he left the NICU. He was in no immediate danger, but it was cause for concern. I was relieved. Just seeing the explanation in black and white helped fill in the many gaps, and I had a better understanding of J’s condition and what questions I needed to ask his doctors and nurses.

And I understood the report perfectly. It seems that I do, in fact, know how to read.

We never spoke to that pediatric cardiologist again. From then on, we saw her partner, the kind, quiet man I had seen in the NICU. He didn’t say much, but he always smiled. And he always asked if I had any questions.

I think one of the hardest parts of having a sick child is being an advocate. It can be gut-wrenching, exhausting, and frustrating. But, looking back I’m not sorry for any of the times I was Mama Bear. Not one. I’m only sorry for the exact opposite, the times when I wasn’t Mama Bear enough. Which is another story for another day…