The Passing of the Baby Years

Alex, April 2005

It crept up on me, this wistfulness. A  feeling that these days are slipping away like pearls through my fingers. The way he looks at me and the wiggles settle into stillness. The way his whole face lights up when he smiles, just because I looked at him and said hello. Moments that make my heart hiccup.

It was the end of a long, very busy and chaotic day. Both sets of grandparents in the house, and Next Littlest Brother bouncing off the walls from birthday cake (in the middle of Lent) and presents. By 7:30,  Michael vibrated like a coiled spring, his little muscles taut, his head batting from side to side.

Julianna, March 17, 2007 in the PICU

My mother, with the slow gentleness she only exhibits toward grandbabies, settled him against her chest and took him upstairs. I followed, a moth drawn to a flame. She laid him down on the carpet in

the hallway, speaking softly to him as the shrieking glee continued downstairs. “It’s time to get you settled down, little boy,” she said, and his face nearly split with joy, legs and arms kicking wildly. “Does your mama have something more comfortable to put you in?”

I retrieved his sleeper, and we continued to sit there, two grown women reduced to helpless adoration by a fourteen-pound child. And a deep pang spread outward from the center of my chest, crushing breath for a moment. Because this stage is passing away and if, as I expect, we have to call it at four, I’m experiencing it for the last time.

“I don’t remember this stage with the others,” I said softly. “I’m trying to really live in the moment…but I don’t remember it with the others. I keep hoping once it’s all past, from a distance I’ll be able to pull it out, I’ll be able to look back and remember. Really remember. But I’m afraid it’s just going to be gone.”

Nicholas, March 2009

My mother’s hand brushed over his body. “It’s going to be gone,” she said, the voice of experience. “And grandchildren are different.”

I bent down and pressed myself against the tiny body, willing my nerves to capture the sensation and hold it, knowing they aren’t capable. And I wondered: am I really ready to move on? For a moment, weakened uterine walls and early deliveries and NICU stays and the sheer chaos of daily life with four children, one of whom has special needs–all of it disappeared into petty nothingness against the emptiness of life After Babies.

Because let’s face it, I’m a baby person. Two years from now I’ll be pulling my hair out over Michael, who will be saying “no” and breaking things and wanting me to play with him (blech!). Right now, his desires and mine are in nearly perfect unison. I want to touch him and talk to him and hold him, and he wants to be touched and talked to and held. Not that there aren’t frustrations–there are–and of course, not having to wash diapers every 48 hours, and being able to sleep at night, are big pluses to the later stages. Still, Babyhood is the part I love most about small childhood. Holding someone else’s baby just isn’t the same, at least not for me. There isn’t that visceral reaction, that gut-deep connection between me and this particular child, who is mine to care for, for whom I am the center of the world.

Michael, Dec. 1, 2011

Michael is on my lap now, tired and refusing to nurse, as has been his pattern of late, and reminding me that babyhood isn’t all transcendent moments. We really are stretched to our limit now. The kids we have need us, and there already isn’t enough to go around (how long has it been since I practiced my flute, for instance?). But I understand now how a woman can enjoy a “change-of-life baby” in a way she hasn’t been able to enjoy earlier babies. The kids go off to school, and it’s just Mommy and Baby again, like it was with the first one…only then, she was too freaked out to enjoy it properly.

Will we go that route? Honestly, it’s hard to imagine. My body really is pretty beat up from surgeries, and with three rambunctious boys, Christian sees college bills and car insurance premiums barreling down on us, to say nothing of the big unknown that is Julianna’s future. We have to be responsible.

But it makes me sad.

Twenty-Seven Days

If you knew you only had twenty-seven days, how would you live life differently?

I spoke recently to a friend whose daughter gave birth to a child they knew was not going to live. Indeed, it was a miracle that the child was not stillborn. “People tiptoe around us,” she said. “They’re afraid to ask. But every day of her life was a blessing. She made a bigger impact on the world in twenty-seven days than a lot of people do in ninety years.”

What would you do differently if you knew you only had twenty-seven days?

I would order out every meal. Shower only occasionally. Sleep with the baby, and “safety” be hanged. I would touch her face and breathe in her scent and try hard not to blink. I would take a thousand pictures and not bother to check if they were in focus. I would drink deep of the holiness of the moment, and let joy and grief coexist, mingling and melding until the tears that spilled over couldn’t be classified as one or the other.

And when it was over, I’d worry about everything else.

You can’t live ordinary life with that kind of intensity. Other children need their parents; there are deadlines to be met, commitments to be honored, paychecks to be earned and bills to be paid.

But as I sit and type, the three-month-old on my lap looks up at me with bright charcoal eyes and gurgles and coos at the woman who is the center of his universe, his first experience of God, of perfect, unconditional love. And his nose crinkles, and his mouth opens into a huge smile I never can quite capture. And the world has to stop for this moment, because this moment–this one–will never come again. There will be others, but this one is passing away forever and I want to hold the beauty of it, not just in my memory, but in my very skin and bones and heart.

And that is one more lesson taught by a child I never met. A child who lived only twenty-seven days.

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A Half-Month In Pictures

I already wrote Michael’s birth story, but since I did it from the hospital on an iPad, I couldn’t put any pictures with it. Today is picture day: a half-month (almost) of my life, and all of Michael’s:

November 30, 2011

Christian killing time as we wait for the walk to the OR, around 8:15 p.m. The nurse accompanying us looks wide-eyed at me as I round the corners and walk like I know where I’m going…because by the fourth time, I do. :)

A quick glimpse, and then Michael disappears into the NICU.

December 1, 2011: Under the hood. Michael, in the NICU, under a heater and suffering from “tachypnia” (rapid breathing) and low oxygen saturations. He has an IV, a temperature probe (the heart), heart leads, and a pulsox. Soon to be added: NG tube for feeding.

On Friday, I take no pictures. Pretty much I cry all day. Just as well that nobody tries to visit. Bad enough falling to pieces in front of doctors and nurses, bad enough having complete strangers trying to hug you and make you feel better…doing it in front of family would be even worse. Because nobody can do anything to alleviate the suffering. Oh yes, and my milk starts coming in.

December 3: visit from the kids

In the morning, the staff decides that Michael has a “pneumothorax,” a partially collapsed lung. They put him on his tummy under the hood again and start pumping 100% oxygen in. It’s RSV season, so no kids are allowed in the NICU. No adults except parents and grandparents, for that matter. They wouldn’t even let great-Grandma in. Hence, almost all our visitors come to the window and view Michael through soundproof plexiglass.

Alex has control of the video camera. His finger is on the button when the curtain swishes open, and he gasps, “Oh! He’s so cute!” But of course, he doesn’t turn the camera on first.

After they leave for home, I return to the NICU and document some details: blood pressure cuff on a thigh…

…the hand recovering from a lost IV earlier that afternoon (the purple tube is the extension of the NG tube, through which he gets all his feedings by “gavage.”

…and the top of the “hood,” with the blue oxygen piping air into it.

December 5, 2011

Sunday, at last, I prevail in my pushing for nursing time. The pneumothorax has resolved, they’re weaning him off oxygen, although we’re stuck at 30% and can’t get off the last 9%. They put him on a cannula and we start nursing…some. Not all the time, though. Look at my poor baby’s heel. He’s black and blue with blood gas, blood sugar, and bilirubin sticks. I’m officially discharged from the hospital Sunday night at 11:20 p.m., and I continue on a day by day basis as a “house guest.” Hoping that sooner or later, I’ll get to nurse him around the clock.

December 7-9, 2011

Just when we think we’re on track to be going home Thursday, he drops his sats and we’re three steps back. Another crying day. But the last one. Slowly, he begins to improve, and around midday on the 9th, he’s finally wearing clothes, lying in an open crib, and un-oxygen-supported:

Now we only have to wrangle four delicate cords when nursing–the pulsox and the heart leads. After one false start, he passes his “car seat test, gets his hepatitis shot (finally). Saturday the 10th is Discharge Day. It begins with a formal permission to leave, pending circumcision…at 10 days old. I don’t remember it being so traumatic for the other two boys. Poor baby! My parents arrive late afternoon, and we make good our escape. Back at home, the kids arrive home from a show at the university and are wild with excitement. I can’t believe how big they all seem. But Michael’s asleep, so we send them to bed and they have to wait for morning for the big moment:

So there you go. That’s the story of a half-month, a half-Advent, and the beginning of life as a family of six. The drama’s not over, but at least it’s shifted to me and my health instead of his!

Published in: on December 14, 2011 at 8:44 am  Comments (6)  
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7QT–the NICU report week 2

1. We have now been in the NICU for over a week.

2. The lactation consultant tried to take pictures of us on the iPad,but somehow we ended up with video. Try this link:
https://www.facebook.com/profile.php?id=547452427

3. My husband reached his limit on Wednesday. This was THEBIG WEEK of Advent for us…and trying to handle it by himself, even with the multitudes of help he’s had, eventually wears you down. “It’s one thing to do it for three or four days,” he said. “Doing it for a week is something different.”

4. Don’t bother telling us to let the Advent activities go. He pretty much has. The trouble is: Alex’s Christmas pageant. Studio recital. Birthday party. Choir. Alex’s school concert. Stuff we really can’t do anything about, and it would be unfair to take away from him just b/c he has a sick baby brother and a missing parent.

5. It’s amazing, the camaraderie that builds among the families in the NICU. We are getting to know each other’s kids–the one present and those not–we follow each other’s kids’ victories and setbacks.

6. Michael has graduated from the heater-crib and into the “big boy” tub-crib. Which means I’m all nervous whenever I’m in here, watching the sats number, because obviously they are trying to get us out of here now. He had an echocardiogram because they just don’t understand why he’s being so pokey.

7. And I will just say this: if this experience does NOT make Michael the most laid-back, easy-going baby ever to inhabit planet earth….nothing will!

UPDATE!!!! AS OF 6A.M. THIS MORNING, MICHAEL IS off his oxygen!

Published in: on December 9, 2011 at 2:37 am  Comments (15)  
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Worry: A Birth Story

Worry is a parent’s natural condition. especially a new mother. Even if you’ve been through it many times, the circumstances are never identical.

Worry began for me in an hour-long discussion last Wednesday, in which we weighed the risks of a C section at 37 weeks: the possibility of a not-quite-”done” baby vs. the risk of an “irritable” uterus whose “give” point is no longer the cervix. “If your uterus ruptures at home,” the doctor said, “even ten minutes to the hospital is too long.”

Most babies born at 37 weeks do just fine, and in any case, the doctor didn’t want me going home. Our options, therefore, were early baby or two weeks of hospital bed rest.

The odds were in our favor. But as I signed the consent form I began to feel a bit of vertigo–vertigo that escalated sharply as I perched on the edge of the surgical table, whispering “Don’t move–don’t react–stay still” while a needle thrust deep between my vertebrae. I had to clamp down on a screech that went something like, “HOLD IT, EVERYBODY STOP! WE NEVER HAVE BABIES WITHOUT DRAMA! THERE IS NO WAY THIS BABY’S GOING TO FOLLOW THE ODDS AND DO JUST FINE!”

I talked myself off the ledge; warmth flooded my legs, and I let them lay me down on the table.

So many things you forget. A C-section is a truly miserable experience: the horrible burning in my upper arms, as if I’d been holding my arms out for three hours. The way my right side perched on a hard sandbag to keep the pressure off the uterine artery, making an already-uncomfortable back-lying position downright awful. The fact that you don’t actually ever lose sensation, only pain.

And then, the totally new: something like scissors, snipping one stitch at a time across my abdomen. That one didn’t feel familiar. “Scar tissue,” Dr. Dixon called over the blue sheet.

Fortunately, the worst of it eases as surgery progresses. The arm pain, the positional discomfort, everything. One of the anesthesia team members poked a head over the sheet. “I see dark hair–lots of dark hair.” Christian and I exchanged wry smiles. We’ve heard those words every single C-section; at this point we’d be worried if we didn’t! And then, “Dad, do you want to tell us what we have?”

Somewhat reluctantly, Christian stood to look over the sheet. “It’s a boy,” he said.

No time for self-analysis; I was far too worried about his health to worry about gender. They took Michael over to the side and worked and worked. I took deep breaths and held my tongue, watching for any indication. His scalp was whitish with vernix. He cried and cried. I tried to send Christian over to comfort him, but the nurses wanted more crying. He’d swallowed some amniotic fluid, and they couldn’t get him clear. He was marginal. They waffled forever, while my neck cramped, straining to see the verdict: had we done the right thing by operating so early?

“NICU,” they finally decided. They laid him on my collarbone for twenty seconds, his face so close to mine that moving my mouth to whisper his name, I brushed his silky cheek. And then…he was gone.

The first night of Michael’s life, they told me not to bother pumping, that it wouldn’t matter this early. Just rest, they said. It was already midnight, so I didn’t argue. Rest sounded good.

Right. I lay awake almost the entire night.

But in one way, it was kind of nice. I’m so used to spending nightly wakefulness organizing the next day: prioritizing writing projects, organizing household jobs and who has to be where when–the juggling act that is my life. stressful as it is, life in the hospital is streamlined. For three days I had no interest in the half-dozen writing projects I’d brought to fill my heavenly solo time–and anyone who’s been in the hospital knows that three hospital days is more like a week in the real world. ****

And so I find myself sleeping better, because there are fewer things to worry about. But I still have the same amount of worry–it’s just all concentrated into a few subjects. Oxygen saturation and its companion, oxygen support. The all-important number TWENTY-ONE, room air. (Holy cow, 21 again? Seriously, 21 is our number!) Bilirubin. Engorgement and latching. All my worries converge on Michael’s and my mutual health. So occasionally I flip out and say extremely snarky things to the neonatologist–things for which I must immediately apologize. (I *think* snarky things all the time, but usually I have the self-control to keep them to myself.) And for five days, I spent all day every day crying.

Worry will never go away. It’ll ease, diffuse itself in more directions, but it’ll always be there. And that is as it should be. I have been given a great responsibility, and it’s not something to be treated cavalierly.

Besides, it’s nice to have the simplified existence…for a while. But I thrive on the chaos, the juggling act. And although I’m sure I’ll come to curse it, I’m really looking forward to heading home to it again.

Published in: on December 8, 2011 at 9:06 am  Comments (2)  
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This Hallway

This hallway has figured in my dreams for months. I’ve always loved the hospital stay post-baby. Yes, there’s the pain and the constant interruption, the cramped spaces and bleary-eyed exhaustion of post-surgery and new baby. But there’s that sound, of plexiglass cribs on metal frames rat-a-tatting down the hallway. The knock on the door: “Nursery!” in the middle of the night, the snuggling back into four or five pillows and drifting sleepily with my baby nursing in my arms.

I loved this hallway, with its lower-plum and upper-pastel-spangle decor.

I hate this hallway now. I’ve never stayed on it so long. I’ve stayed on it so long this time that I can walk out of the hospital on my own two feet instead of bumping along in a wheelchair to a waiting car. So long that my incision doesn’t even really hurt anymore, unless I try to do too much for too long. So long that I’ve had to go exploring to find where the cafeteria is. So long that two days of sixty degrees have given way to St. Nicholas Day snow. So long that I’ve missed a piano recital and picking the Christmas tree. So long that I’m about out of clothes, and contemplating washing socks and underwear in the sink using, um, shampoo? Bath soap?

And not once have those rat-a-tatting carts bumped over my threshold. They just rattle right on by.

This is not how I would have chosen to end my days in this hospital that has witnessed the birth of all four of my children. But it’s good, in a way, because every irritant, every setback, every nurse- or doctor-conflict, every “I’m so sick of looking at this stupid hallway” that crosses my mind, erases the shimmer of false nostalgia. And heaps upon the mountain of God messages telling me it’s time to stop bearing children and focus on raising them. I still feel guilt over that, like it’s somehow sinful. But it’s not God’s opinion that worries me on this account…it’s other people’s. I’m pretty sure God’s being as clear as He can be without taking out a personal billboard on the interstate on my behalf.

The thing I’ve always loved most about this hospital, and still do, is the overt religious component. People all over the e-verse have been promising me prayers ever since the drama began, but it was last night, when I got ready to leave the NICU and go to bed, when Michael’s nurse bent down and said, “Let’s pray over him,” that I really felt the prayers for the first time. She traced the cross on his forehead and whispered a prayer for healthy lungs, and then together we traced crosses over his chest. And I knew somehow at that moment that in the morning he’d be better.

And he was.

The sign in every room says “fear not, for I am with you.” I love to preach at people about hard times, and how they’re good for the soul, how much soul-stretching helps you grow. I consider myself an expert in this after all the various dramas and traumas of infertility, anxiety, RSV, open heart surgery, pneumonia…our family has known more hospitals than most. But for days, I’ve resisted the words “thy will be done.” “Fear not.” How can I not fear? How can I say “thy will” when I am absolutely NOT okay with “thy will” that is contrary to “my will”?

Tonight, as the city darkens from gloom to murk outside my window, for the first time I see the glimmer of promise at the end of this particular trial. And the fact that I can gripe about being bored and irritable, instead of falling to pieces and weeping, is one of the best signs there is.

Published in: on December 6, 2011 at 5:02 pm  Comments (10)  
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Update/weekend

For those following the saga of Michael’s birth, whe is still in the nICU on oxygen. He is no longer under the “hood,” but on a cannnula. I got to nurse him last night at 5–absolutely Heavenly, for him and for me both. He was so calm, his breathing so regular and his saturation so good. I wanted to snip and snap at the people who had been keeping us apart for nearly two days. It seemed perfectly obvious to me that all he really needee was Mommy.
However, I had to push it at 8 because his breathing had speeded up again, and I had to promise I just wanted to try. Again, it calmed him down. But at 11 he was breathing 1– times a minute and even I knew I couldn’t win that argument. So I had to pump all night again. Praying and praying that he will be better this morning. I sat with him at 5 a.. and he so desperately wanted to nurse. Rototing like mad, crying, unhappy, his entire body language screaming “hungry! Want Mommy!” And I had what he wanted–he could smell it–and I wasn’t allowed to give it to him. I have never felt so helpess. So completely without ability to comfort my own child.
I am sure this post is chock full of typos, because of the ipad. I know there are many ppl who think I’m being a Luddite about these iPhones and ipads and yada yada, but to give you an idea of what I’m having to put up with in using this thing, I’m typing this post watching the cursor move across a white screen, leaving abstolutely nothing in its wake. That’s why I haven’t been posting long detailed summaries. :)

Published in: on December 3, 2011 at 7:16 am  Comments (6)  
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Just Before You Start

“The scariest moment is always just before you start.
After that, things can only get better.”
Stephen King

You know what already worries me about my upcoming C-section? I’m terrified of the back shot.

You’d think repetition would inure me to the experience. But I’m so ticklish. What if I jump at the wrong moment and end up paralyzed? And the side effects! Hot flashes, nausea, inability to swallow—I’ve had it all.

These were the fears that kept me awake the night before my third child was born. While Christian slept, I tossed and turned. Past midnight, I couldn’t have water. Misery. Sometime close to 1a.m., I finally drifted off.

Moments later, I woke to piteous moans. I found Christian rolling around on the bathroom floor, clutching his stomach. I thought he was dying, four hours before I had to deliver a baby.

I called 911. The ambulance whisked him to the ER; I followed. The night attendants said blankly, “Wait a minute. You’re having a baby, and he came in the ambulance?”

3 1/2 hours later, Christian lay sleeping on a bed of two vinyl chairs while I tossed and turned on a hospital bed. Three months of nausea that intensified on insufficient sleep. You can’t get much more insufficient than zero…and now it was time for a spinal?

The door opened, and a gentle-faced man came in. “I’m the nurse anesthetist,” he said. “Can you tell me what your experience of a spinal is like?”

I started crying. He patted my leg and said, “Don’t worry. We’ll take care of you. Just tell me whatever you’re feeling, and we’ll take care of it.”

An hour later, beneath bright lights and gentle hands, I said, “Are you ready to put it in?”

“It’s done,” he said, and I felt the familiar warmth flooding my legs.

And I knew then I was going to be okay.

Published in: on October 11, 2011 at 5:12 am  Comments (23)  
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Standing at the Precipice

Amazing, how long it takes to write 97 words. Ten days of near-constant brainstorming, while driving, washing dishes, walking, putting kids to bed, lying awake, showering… And that’s a quick write, for me. But it’s done now, and I get to go on to the fun part—writing out the musical arrangement.

                                                                         ***

I spent this weekend focused on song text and special needs. There are some local issues that, while they won’t affect our family directly, have set my blood boiling. So I’m working with a group to advocate for kids with special needs. I was asked to write an introductory paragraph that gets people’s attention without ticking anybody off. “Oh, sure,” I said blithely. “I can write a couple of sentences in ten minutes!”

Uh-huh. Two days and a dozen attempts later, I finally got it done.

Nicholas turned 4 months yesterday, and as I was thinking about how quickly the time is passing, I was astonished to find that I remember Julianna’s birth with far more clarity than Nicholas’s. There are moments in every life that I call “precipice” moments, when everything is turned upside down and you find yourself reeling at the edge of a proverbial cliff. It’s actually a physical sense, this loss of balance. The feeling that everything you once knew to be true cannot be trusted; you have very little to hold on to and feel certain of.

Over the weekend, I learned that a friend has a prenatal…not so much diagnosis, as suspicion, of DS. Or at least, some “chromosomal abnormality.” As we talked, I tried to remember what it felt like to be in her place. And I realized that she didn’t need information; she needed affirmation. The most important things to hear when receiving a diagnosis of Down syndrome are not medical. That stuff goes flying over your head; in the first hours and days, there’s nothing in your brain but this stark raving terror screaming over and over, “I CAN’T I CAN’T I CAN’T I CAN’T I CAN’T NONONONONONONONONO!” Just to filter that out enough to carry on a normal conversation is no easy task. The effort required to understand medical jargon is nothing short of epic.

There are only two things a new parent needs to hear, and unfortunately they probably sound condescending except from the lips of someone who’s stood in their shoes. So I share them today in the hopes that this post might reach someone who needs to hear them:

1. It’s going to be okay.

2. A newborn is a newborn is a newborn. A baby with Downs is not born delayed. It starts in exactly the same place as every other newborn. All babies are helpless, all babies do nothing but lie there, sleep and eat and making diapers. This is a universal truth that applies to children with Downs, too (barring some immediate medical emergency). Delays are a topic for later. That’s the beauty of God’s plan. If, at the moment of our children’s births, we knew everything that would ever cause us grief, none of us would be able to handle it. Delays, medical issues, and understanding unfold slowly, in manageable bites. Even if it doesn’t always feel that way. So take a deep breath and parent this baby one day at a time.

Going Home

Today’s the day that the Basi 5 go home. Christian has had an interesting couple of days corralling two kids by himself. He’s used to it for a couple hours at a time, but not the whole day…and night…two and a half days running. :)

Meanwhile, I’m just trying to take care of myself post-op. And Nicholas. When you’re nursing, those two are one and the same thing. Snuggles and snoozes with a baby against my chest…mmmm, heavenly. A phone call from the rest of my family, all snuggling in bed together…completes the picture. Engorgement/plugs…not so heavenly. :/

Or was that Too Much Information? ;)

Addendum from home: I have learned a couple of things about going home from the hospital–at least when it’s a 2-hour drive…

1. The 4-year-old will use the bathroom in the hospital room and STILL need to go again 5 minutes into the trip (literally).

2. No matter what you do, you will never manage to time nursing right for a 2-hour drive in the middle of milk coming in. OUCH.

Published in: on March 22, 2009 at 7:48 am  Comments (1)  
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