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 not stupid. 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...

Waiting For the Shoe To Drop

A month ago, J was as sick as he's ever been since his discharge from the NICU. For a 26-weeker, he has always been amazingly healthy, even in the NICU. We have had plenty of frustrations and roadblocks, but he has never been truly ill.

In fact, he went an entire year without a sick visit to his pediatrician.

But, this year he had one cold after another cold after an ear infection. All winter long. I guess I shouldn't be surprised. He attends school for twice as many hours a week as he did last winter, and now he has a younger sister who shares germs with him. The cold and flu season was also much longer because of the colder winter.

So, it was nothing new to have two kids with ear infections in late March. I took them to the doctor on a Tuesday afternoon, and both kids needed antibiotics. M started looking better almost immediately, but J became listless on Wednesday, which has never happened before. He rarely runs a fever, he has never lost his appetite, and sitting on the couch all day is the exact opposite of the kind of child he is. But, I really became alarmed on Wednesday night when he had trouble sleeping, so on Thursday morning, I took him back to the doctor. I was positive that something was wrong.

And I was right.

Apparently, the antibiotic was working on the bacteria in his ears, which looked much better, but while his body was busy with that infection, another bacteria attacked his lungs. Within 36 hours of seeing a doctor for ear infections, he had developed a completely separate case of pneumonia.

So, the doctor gave him a shot of Rocephin, a high-powered injectable antibiotic, and she changed his prescription to a stronger oral antibiotic.

But, he didn't get better. In fact, all of Thursday he continued to go downhill. I called Friday morning and made the first available doctor's appointment, which, of course because I was in a panic, was at 10:45 a.m. J's fever was nearly uncontrollable, and his skin was so pale it was nearly translucent. His lips weren't blue--a sign of danger I learned in the NICU--but he was wheezing. So, I called the doctor's office back and told them that I was bringing him right then.

The doctor saw him immediately, and she gave him another Rocephin injection, a dose of steroids, and two breathing treatments.

That night, I began to see him turning a corner.

I learned at a follow-up appointment the next week that his case of pneumonia was aggressive and that if he hadn't responded that day to all the medicines, she would have hospitalized him.

What amazed me was not how vicious pneumonia can be, because I was hospitalized for it twice as a kid. What shocked me was how fast J went from being mildly sick to dangerously sick. I asked if his prematurity had anything to do with the rapid progression of the pneumonia, and the doctor told me no. He's never showed signs of lung damage or asthma before (amazingly), and now that he's nearly four, many of his risk factors for illnesses are no different than other children.

Whatever made J so sick was just an awful virus or bacteria. J and M had mirror illnesses, but she had her last Synagis shot the day I took the kids to the doctor for ear infections. She improved immediately, so maybe the Synagis shot boosted her immune system. Or maybe it was just a fluke that J caught something else.

I thought I was managing the stress of having a sick child, but I'll admit it: I almost had a nervous breakdown when the nurse put the oxygen mask on J for his first breathing treatment. It was another of those NICU flashbacks! I was transported back to that time when he was so tiny and his breathing was so labored and I couldn't see his face for all the tubes. But, what kept me from teetering over the edge was J's need for me. I didn't want him to know that his illness was scary.

When we left the NICU with J, I always felt like I was waiting for the other shoe to drop. It was inevitable. All of our good fortune would catch up with us. I just knew it. A baby can't be born as early as J under such emergency circumstances and have no complications. It just seems impossible to me.

Even more miraculous is that when the other shoe did drop and J had a terrible case of pneumonia, he wasn't a baby or even a toddler. It wasn't the result of RSV. And the doctor didn't treat him any differently because he was a preemie. He was just a kid who got really sick.

Do you know what that means to me?

The Spot I Will Miss

The backyard before we made it our own.

I had a dream last night that we sold our house. I must be practical even in my subconscious, because I worked through the entire negotiation phase in my sleep. And when we were done, I was so happy. I didn’t feel any sadness about leaving this house at all.

When we put our house on the market a few weeks ago, it was with great relief. After months of weekend projects and nonstop cleaning, I couldn’t wait to be done with it all.

With each showing, I ask myself if I’m really ready to leave this place.

This was our first home to own. When we bought it four years ago, I walked around the perimeter, examining each brick, thinking to myself: I own every brick on this house.

When we bought this house, I was newly pregnant. Everything was fresh and exciting. The world sparkled, and those four walls housed so many hopes for our future.

Nothing turned out as I had planned it.

I discovered the house was fine, but I desperately wanted to relocate it. We had moved three times before, and never had I disliked a town like this one. I felt stuck before I even knew how stuck we were, because six weeks after we moved, we had J 14 weeks early. Now, that is stuck. When you have a baby in the hospital, then you know what stuck is.

Our house was both a refuge and a prison, depending on the moment. I both loved and hated it. It was solid and well-built. We made it our own. We made it a home, but it was always temporary. And we were always looking toward the future, when we wouldn’t need downtown NICUs and high-risk doctors and specialists, when we could cut our ties with this place.

After we listed it, I walked around the house and took notice of all we have done to it. Our touches are in every room. I am so sentimental, and this is the home where I brought my NICU babies. So, I was surprised to discover that everything that matters really can be boxed up and taken to our new life. The house has so much baggage for me that it won’t be a bad thing to start over again, in a place where the world sparkles.

I commented to my husband that for every good memory in this house, I have a sad one.

But, there is one spot that I will miss, a place in the middle of the deck my husband built. It is where J took his first steps. Where I sat, pregnant with M, and watched J play in the backyard. Where I pushed babies in a swing. Where we dined outside at our travertine table with company. Where my husband and I listened to the chatter of birds as we discussed our future. It is the only part of this house that is all joy and no sadness.

There it is, the one spot I will miss.

The winter before the deck was finished 

A tired mama sunning with her baby

I looked out the back door one morning to see this...

J and his kitten

I was pregnant with M when this photo was taken.

The wisteria in the spring 

Lunch with NICU friends

Waiting To Walk

It took J forever to walk.

By forever, I mean 17 months.

Actually, in retrospect, I thought it took J forever to walk, but now I have M to put his development into perspective. M always has this effect on me. She is nothing like J, and her story is nothing like J’s. She is exuberance to his reserve. She is fearless to his caution. She is defiant to his obedience. She had 3.5 more weeks in the womb than he did, which any preemie parent knows is just about a lifetime. She also had two rounds of steroid shots to develop her lungs just before birth; J did not.

M is almost 16 months old. By adjusted age, she is nearly at the point when J was hanging onto his walking wings for dear life, taking his first steps of hard-fought independence. Despite all their differences and her perceived advantages, it appears that she will walk no earlier than he did.

If J changed everything in my life, turned it all upside down and inside out, then how could M be such a surprise? She has shown me that even when you think you’ve made sense of the world, you probably are still just a sweet, little babe in the woods, naïve about your own naivety. So much of my frustration with J was misplaced because I compared him to unfair goals and children who weren’t born prematurely. Now, I realize that every goal he met, every step of forward progress he made, was nothing short of miraculous.

Not to take anything away from M, because she has overcome odds too, but it was J who was thrown to the wolves at 26 weeks with so many challenges. In his caution and reserve, sometimes we miss the magic of his accomplishments. They aren’t done in explosive fits or with gleeful giggles, like with M, and so sometimes we look up one day and find that tiny changes have compounded into J becoming a totally different child.

Now, as I await the tentative first steps of another late walker, I also realize something else. The early years of raising premature babies are different from the norm; in fact, they are vastly different. And even though the kids are all different too, there are some commonalities that preemies share that we cannot escape.

It doesn’t seem to matter that M’s personality is nothing like J’s, or that she’s a girl and he’s a boy. It doesn’t seem to matter that she crawls and he didn’t, or that she had 25 more days of development in utero. Here we are at 16 months with a baby who isn’t yet walking. And in my world, that is perfectly normal.

A Blogcation

Well, I took quite a spring break from the blog! I do have three pretty good excuses:

1. We're in the process of selling our house, so we've spent hours upon hours over the last few months getting the house move-in ready, for someone else. It has been daunting with two little kids--and two dogs--underfoot, but it will be worth it.

2. I had some major computer problems, so for two weeks I didn't use my computer at all. It forced me to get my documents and photos in order, which involved editing over 1,000 photos from the last nine months! It also forced me to detox on Facebook and all the blogs I follow, which has freed up some time to read books again. In another few days when everything is in order again, I'll be glad I was forced to tackle all of my computer woes and to detox on all my favorite websites, but in the midst of it, I was pretty ticked.

3. Finally, J had a bad case of pneumonia during early April. It was his first serious illness since he left the NICU 3.5 years ago, and it was terrifying. But, you'd never know he was sick now.

I have many ideas for blog posts, and I've missed writing regularly. I also have loads of photos that are finally edited and ready to share. We all need a breather from time to time, so hopefully the blog will benefit from my month-long blogcation.

A Spring Cleaning

I love my kids with my whole heart, and I refuse to go very far for very long without them. But, by the looks of this blog and the rings under my eyes and the scowls I'm giving just about everyone, it is time for Mama to take a vacation.

This weekend I'll get to visit with my childhood best friend, the one who has known me since the first day of kindergarten. The one with whom I have a shorthand sort of language. ("How is Lucius?" "You mean, Luke Duke Lucius?" Giggles.) We throw out names, places, and events rapid-fire. Our husbands long ago realized the best way to deal with our conversations during the few times a year we see each other is to remove themselves, because they can't keep up. And they don't want to.

I am so appreciative of getting this time away. To go be Just Summer. Not the mama, or the housecleaner, or the errand-runner, or the therapy-overseer, or the nap-enforcer, or the dinner-cooker. I am so excited for a breath of fresh air.

Like my house, I need a really good spring cleaning.