It Is Time

Hopefully, the last move with small children is behind us! We are settling into our new home, the one where we didn’t have tiny babies. This is the home with the big, wooden playset. This is the home with plenty of land for the kids to explore. I am so filled with joy that we are here, after so many months of talking about this place. This future was a dream of mine when I sat in the NICU with a tiny frog for a baby snuggled onto my chest, a baby attached to monitors that dinged and bellowed if I moved even slightly.

I am so grateful to be here in this place. But, I am so exhausted, so weary and so tired. Sometimes, the talker in me has nothing left to say. I’m correcting and guiding and entertaining two little ones, which can leave a mother with little emotional reserve, but the exhaustion is deeper than that. I am waiting, even in this joyful present, on the shadow of the past. I have spent the last five years moving and having tiny babies and caring for tiny babies and moving and then moving again. People have much worse, and I know I’ve been blessed. But, I’m tired, of chaos and stress and fears that whisper to me in the dark of night.

A few weeks ago, I sat on the same velvet-covered pew in the same church where I sat so many Sundays as a child and as a teenager and as a newly-married woman. My mind drifted from the sermon to a reflection of where I am. How did I become this woman? How did I have these children? Surely, I am still a girl with big dreams and plenty of spunk. Sitting there, I was overcome with the sensation of who I was before my NICU babies, the defining moments of my life. I will never be that person again, but for the most part, I am grateful for the person I have become. The one exception is the yoke of fear I carry around my neck, the fear of the unexpected. The most traumatic part of having my babies was that no one saw it coming. How can I ever trust the present when the future is so uncertain? But, then isn’t that life? Tomorrow is always a gamble, and today is always a gift. As I sat in church staring at the same stained glass I saw thousands of times as a child, I asked for help with this fear that sneaks in on me in the dark of night. It is time for me to release it, this one thing that most separates me from the girl I once was. I had the confidence of youth that things would work out, and in my adulthood I have realized that “working out” might have a different meaning from my intention.

Now, that we are in this present, I need some time to fill my emotional coffers. I need some peace. I need understanding and patience for the twists and turns of life. I need forgiveness for myself. But, most of all, I need to release this fear. It is time.

This Beginning

My children are polar opposites. One is a boy, one a girl. One is reserved and sensitive, the other loud and gregarious. One an introvert, the other an extrovert; he needs quiet as much as she needs noise. One is careful and cautious, the other a very risky risk-taker. So, I guess it stands to reason that these two completely separate individuals would be born in polar opposite seasons, J during the middle of a long, hot summer and M born during the dead of winter.

The other day, I had the sensation that M was in the NICU again. The weather was cold and dreary. My husband was driving us home on the highway. I was in the passenger seat of the car watching the pavement rush past my window. The sensation that I was somewhere else was overwhelming. I could picture almost the entire 30-minute route to the NICU. I could feel the cold wind on my face as I walked from the parking garage into the hospital. I remember how my body hurt, how my blood pressure was so unstable that I had to recline the seat in the car to lower it. I could smell the NICU, hear the NICU, feel the NICU. My heart ached as if I were leaving M again, tiny in her isolette, and walking into the cold night for another long ride home.

I don’t think it will ever go away. A part of winter is now bound to those cold days, 59 of them, when my baby was away from me. And on hot, sticky summer days, I am transported to the same NICU but with a different baby. The summer belongs to J.

Sometimes, I marvel that the only thing my kids seem to share, besides their parents, is this beginning.

Perspective

M a few days after she came home

M a few days after she came home

I saw a friend’s preemie for the first time today. Her tiny preemie body reminds me so much of my babies, especially M, and I told my friend just that. But, I didn’t tell her that that little preemie body brought back such a rush of emotions, good and bad. It wasn’t so long ago that I was in her shoes, or shoes like hers. Just 18 months ago, I had a tiny, 5-pound 2-month-old at home. As stressful as it was, that time was so fleeting. Even then, I’d watch her sleep, and I’d say to myself, “Soak it in. She won’t be 5 pounds forever,” because with J it sure felt like forever but it didn’t last. Though M didn’t gain weight for three weeks after coming home, she did gain, and now she’s my wild thing, so mischievous and full-of-life. The two images crash in my minds eye, that fragile baby and this wild girl.

Sometimes, I wonder if I’ll escape the shadow of the NICU. It finds me even in the most joyful moments. Actually, that is its home, because every joyful moment is made more so by the knowledge that it all could have ended differently. It makes me clutch my children in parking lots and kiss them a few extra times at night and sneak back into their rooms at night to watch them sleep. It makes me quicker to apologize, and it also makes me quicker to challenge the kids in the ways they need to be challenged. If I hadn’t spent the last four years with babies in therapy, would I assess their development they way I do? Would I be frustrated that I’m a stay-at-home mom, when I never planned it that way? Would I look people in the eyes when I know they’re suffering and tell them that I can’t fix it but I wish I could?

It would all be different, but then none of us–our entire of family of four–would be who we are now.

I don’t think I will escape the NICU, and maybe I shouldn’t try. After all, the whole reason I relish M’s ferocity in life is because when I met her all she could manage was a kitten’s mew. Perspective is everything.

M now

M now

 

Preemie Birthday Blues

I’ve written about how preemie birthdays are tricky here and here and here and here! And that’s probably not even the extent of it.

I used to think after the big First Birthday, preemie birthdays would get better. And they have. But, the Dark Days are still like skeletons in the closet or ghosts lurking in the room: I don’t want to acknowledge them, but they’re present no matter what I say or do. I can’t change what happened, and I can’t change that it haunts me, even though the passage of time gives me so many good memories to outweigh the bad.

On a preemie Facebook page, I once saw a mother ask if anyone else had felt sad leading up to a preemie’s birthday, and it was like someone unleashed a dam. A torrent of women rushed forward with their experiences, saying they thought no one else understood. They felt guilty for their feelings, as if they could force their way toward happiness for a day that should, in theory, be a joyous one.

And then there were the naysayers, those women who must take some satisfaction out of digging their heel into people already down: “I realize the blessing my child is, so I choose to celebrate the day.” “I could have lost my baby, so of course I enjoy his birthday!” AND, my favorite, “According to the Bible, you can’t question the will of God and be truly grateful at the same time. I am grateful for my daughter, so I don’t dwell on how she got here.”

I won’t get into a religious debate, but I have a totally different take on it. I don’t think that sadness and gratefulness are mutually exclusive. Besides, we’re discussing feelings here. Someone can’t help how she feels. You can choose what you do with your feelings, but you can’t erase a feeling just because you don’t like it. That’s terrible advice! And acting superior to someone, especially in the Preemie/Special Needs community, because you aren’t troubled by something that troubles others is problematic anyway. I kind of think it makes you a self-important, unsympathetic, a-hole, truth be known.

I’ve also noticed a difference between preemies born before 32 weeks and after. Here’s where I get on my soap box about how all preemies aren’t created equally. Some preemies skate out of the NICU in a few hours or days or weeks. Those parents are probably–but not always–less traumatized than say the families with babies hospitalized for months. So, I always want to congratulate those moms who say “I had a 34-weeker, and I’m fine with her birthday.” Good for you, but I’m not at all okay with either of my babies’ birth stories, thank-you-very-much.

So, now that I’m approaching my 4th birthday post-NICU with my first 2.5-lb baby, I can say this: It does get a little easier, but I’m still counting down the days. I’m still thinking about the girl I was four years ago. I’m thinking of that day and how it all went down. I’m remembering things said and things unsaid, things done and undone. It’s all there, just as fresh as yesterday.

The biggest difference between J’s first birthday and now? I don’t feel the need to apologize for my feelings. Birthdays are hard for me, for all the reasons I’ve said, and maybe they’ll always be hard for me. As the kids grow, I’ll celebrate with the best of them. We’ll have parties and we’ll laugh and we’ll eat cake. But, I’ll never forget where I was on that day and what happened. After all, I am my children’s mother. Even if no one else feels the pain of their early months, surely I do, and I’m entitled to it.

I accept the Preemie Birthday Blues for what it is: the anniversary of the beginning of a very difficult time, which also happened to coincide with the miracle of my baby’s birth.

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?