Two Years Ago

December 2012 155It was two years ago. In the same house with most of the same people. I felt anxious, exhausted, and so swollen. I had never taken my blood pressure at home. I had never needed to check my blood pressure at home, but as I was lying in the recliner wishing my feet weren’t so swollen, I suddenly knew I needed to check my blood pressure. I had a sinking feeling in the pit of my stomach. On the outside, I looked fine. For the most part, my symptoms could be attributed to entering the third trimester of pregnancy. I don’t know why I suddenly had the epiphany that my swollen legs, my exhaustion, my irritability, and my flushed cheeks meant anything more, but I knew. And when we saw the astronomically high numbers and my mother-in-law calmly suggested we retake my blood pressure to make sure the machine wasn’t malfunctioning, I just knew the baby and I were in big trouble.

My mind keeps going back to the days that followed. I wonder if New Year’s Eve will always be about my almost New Year’s Eve baby, about preeclampsia, about terror and joy, all intertwined. Two years and counting now, and it’s all so fresh. If only I had been assured that this wild child would be mine, that M would not always be so skinny and fragile, that I would emerge on the other side with this infuriatingly independent, fierce, hot-headed, gleeful, mischievous magic child, I would have had some peace.

It’s funny how the most restless, energetic, ferocious, and un-peaceful being brings the most peace.

Christmas M

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.

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 Blood Pressure Monitor

I went to my podiatry appointment this morning. It’s the Monday after the time change, so I was a little groggy. And I felt the doctor was less chipper than usual, probably because he is also groggy. But, I left feeling completely out of sorts, and on the way home, I tried to decipher why.

It’s all for the most ridiculously mundane reason: I had my blood pressure taken, and I wasn’t prepared for it.

How silly is that?

I never even knew what good blood pressure numbers were before preeclampsia. I knew high blood pressure ran in my family but only in people older than 40. So, as a young, healthy person, I paid very little attention to it. I never even thought about it when I was pregnant with J. But, after the shock of preeclampsia with M, blood pressure cuffs give me the chills. They are revolting. The sounds they make take me right back to having my blood pressure taken every fifteen minutes. For days. Lie this way, turn that way, tip your body back, relax, don’t talk, try to rest and hope that the next reading is better. (How do you relax when you’re living by those numbers?!) Now, at a podiatry appointment a year later, someone pulls out a blood pressure cuff, and the fear absolutely floods me. I tried to make a joke about it to the nurse, but it sounded hollow. It really wasn’t funny at all.

The podiatry nurse has daughters born at 24 and 25 weeks, so during every appointment, we chat about how our preemies are doing. We talk about changes in our NICUs and what life is like with preemies and how people who haven’t lived it just have no idea. His youngest daughter recently started walking unassisted, he told me, and she’s two if I remember correctly.

I love conversations about preemies, because now it is my home. It is my world. And I rejoice in it.

But, the stupid blood pressure monitor? I wanted to fling it off of the highest building, which is pretty unfair because it’s not really its fault I have such terrible associations with it.

M helped me make peace with so much of the NICU trauma that I don’t have many triggers, and I guess until this morning I didn’t realize the power the blood pressure monitor has over me.

I talked to the nurse about his triggers. He laughed about how the coffee pot when they first brought his daughter home sounded just like the alarm on her feeding pump. Get a hammer and kill it! But, it’s only a little bit funny.

Even walking into the podiatrist’s office is difficult. It’s on the same floor as my high-risk doctor’s office. When I park the car, I think of all the visits I made here. Each week, I had progesterone shots in the hopes that M’s journey would be different. (Well, it was but not in the way we’d hoped.)

Every time I drive downtown, I am a new mother again with a sick baby in the hospital. When I go to the town where my son’s school is all my memories are of his early years and how difficult they were. When we drive to the town where my son was born all I can think about is that night in the hospital when they couldn’t stop my labor. When I drive to visit my best friend from the NICU, I think of all the trips I made when all our kids were on lockdown and we only had each other.

From the first six weeks we lived here when J was born so suddenly until this moment, everything about this place has been about preemies. I know I can’t make up my mind because one day I say I don’t know how I’ll leave this part of our lives behind because it has changed everything, and today I’m saying the ghosts of the NICU are in every closet and I can’t get away from them.

We are moving this year to a place where the memories aren’t ever-present. They will be memories, not everyday reminders. While I’m sure I never want to forget all my babies’ firsts and while I’ll always hold dear the places that have made my children’s successes possible, I can’t help but think it is time to put all the visceral reminders in the past.

We can leave the house where we brought our tiny babies home. We can leave the cities where our babies were born. We can dust off the NICU cobwebs that seem to be sticking to us, and we can start fresh in a new place.

But, I am probably deceiving myself if I think I can ever look at a blood pressure monitor the same way. At least the next time I see one, I’ll be better prepared.