Back into the fire.

I'm tethered to the phone like my babies are tethered to machines. Big heavy monitors that loom over their small bodies and tell you their fate. Will they live or die? How are they now? How about now? How about now??

The beep beep beep of their breathing masks. The push and pull of the bag that sucked life into your child while he lay blue and lifeless on the table. The ER doctor, young and terrified, demanding experts from the NICU, who spoke the language of these creatures. The same doctor who hugs me and almost cries when he's finally stable, and she knew she'd saved his life. I don't even know her name, and she saved my baby's life. 

"You were so calm" they told me, when it was over and Gus was being moved to the NICU. 

This has happened before, I told them. And happened and happened. But usually with the other twin. Their mouths opened. 

This is the life of a parent with immune compromised children. I've met so many at the Ronald McDonald House, and I'm one of the lucky ones. My children will grow up, and their immune systems will catch up. One day they hopefully won't be coding on a table because of a virus. A lot of parents don't have that luxury. 

But for now, this is my reality. Hospital life still feels more normal than home life to begin with, so another long hospital stay is just part of life, at this point. How long will it last? Anyone's guess. A week? A month? Two or three more days? Everything changes so fast. If I've learned one thing, it's this: life can change in an instant. 

Life can be taking your infant to the doctor and sent home with advice to watch for a fever, and you take your infant out of his car seat when you get home to nurse him and discover he's unconscious and turning blue. 

You race madly to the emergency room and told next time to just call 911, which only occurred to me as I clawed my way through traffic. 

But the doctor had just seen him. She said he was okay...

Suddenly, nothing is OK. Nothing is OK. And then the other baby gets sick. And nothing is OK. And he gets admitted, too. But he's in far better shape than his twin. For now. What will it be tomorrow? 

The NICU calls while I'm in my boarding room, pumping breast milk for the babies. My heart was already in my throat when the phone rang, because it could only mean trouble. 

"It's Gus," says the nurse, "I can't get him to settle. I think he just wants his mom."

I raced into the NICU to hear my baby screaming, an almost welcome sound after his ghostly silence. He's thrashing around in his isolette like a fish out of water, his back arched and his face red. I tore him out of bed so quick, it yanked his c-pap right off his face. He stopped crying and looked at me, stunned. I rocked him for hours, until we both fell asleep. As horrible as it was, it was kind of a big moment for Gus and I. It was the first time he needed me, his mother. Not a pair of gloved hands and a bottle, but me. 

 

Hello, goodbye.

The night Lazlo came home, I went to bed with a feeling of completeness in my chest. Finally, finally, we're all together again. All of us. 

We meant to celebrate, but Story fell asleep on our way to dinner, so we settled for drive thru Taco Bell.  The kids and I had spent the ENTIRE day watching movies in the tiny room of the Stanford Guest House, the hotel that the Ronald McDonald House sends you to when someone in your family is sick, to keep you from contaminating the whole house. A little bit ago, someone brought the noro virus to the Ronald McDonald House, and it sent loads of immune compromised kids to the ER. My friend and her step daughter almost lost their dream Make A Wish vacation to Disney Land because of that virus. So here we are, the day we bring our last baby home from the hospital, only home is a hotel. But my days of hotels and Ronald McDonald House and Make A Wish and Stanford Hospital and sick kids are over. A new chapter is beginning, now. Now, I go home to Santa Cruz to pack because we're being evicted and we're off to start over somewhere else.

................

"Can I sit here?"

I look up from my booth in the community dining hall of the Ronald McDonald House to see a woman I recognize, but don't know. It's kind of an unspoken rule here that, unless you're already friends, you leave each other the F alone in the dining hall, because everyone is stressed and frazzled and just trying to scarf down their food before they rush off to do whatever sick kid thing they have to do. But I invite the woman to sit down. I've seen her around. She compliments me on my baby, tucked asleep in his wrap, against my chest. 

"This is Gus," I say, "His twin brother is still in the hospital."

"I have one of those, too." She replies, and suddenly I see why she's here, at the Ronald McDonald House, and sitting with me. She launches into her story about her baby, born prematurely with a terrible illness, surviving against all odds. As incredible as these babies are, all their stories basically have the same plot here. Because if they aren't here with the same plot line, it means they're dead. 

It was fifteen minutes of conversation later that I realized I knew this woman's incredible life story, but I didn't even know her name, and she didn't know mine. That's also par for the course around here. Stories and explanations first, names later. It feels so good to commiserate with someone who is going through it, themselves, that names don't even matter. My name could be Bozo the Clown or Freddie the Ax Murderer, and it wouldn't matter. We're all the same in that place, that strange space of time suspended in stress and hope and fear and gratitude.

I went back to Santa Cruz with that woman's story tucked away in my heart, and I think of her and her family and her incredible baby often. I probably always will. I will never forget the stories I've heard and the families I've met during my months at the Ronald McDonald House. They will stay with me forever, reminding me what I have to be grateful for.

 

Life, life, and then some.

I've wanted to write about this for weeks now, but I haven't had the words. They hadn't come to me yet, the way they normally do, and I think that's because I'm still living in it. I'm back in the tornado again. Everything is happening so fast, and I can't predict the future anymore or even control it in the usual way. Everything is Topsy Turvey. 

A doctor told me Lazlo will be discharged from the hospital in one to two weeks, but then I got a call, as I held my feverish 5 year old in my arms, and the caller was another doctor saying Lazlo was going to be released in two days. In TWO DAYS. 

IN TWO DAYS.

This is the moment I've been waiting for, but never quite held in my day dreams, for fear it would never cover true. And now here it is.

But when you live the moment you've been waiting for, there's also so much more happening around you, as this Great Big Moment approaches. 

There are friendships that are quickly turning into life lines, of the sort I haven't seen since my jolly suburban housewife stint in rehab for painkillers. We addicts would meet on the driveway for a smoke break, every break in the day of rehab, or detox, and we quickly became family. That's happening here at the Ronald McDonald House, too (minus the cigarettes for me this time). The friends I've made here, other parents surviving their crisis, congregating outside after their sick kids have gone to bed, are becoming my closest allies. Along with the few close friends in my life before all this that have been able to meet me where I stand. When you're living in crisis mode, striped down to your core, all pretenses gone, you start to see the truth in people. That's why these friendships are the type that sick to your bones, and stay with you for life. You will remember these people for as long as you live, these war buddies of yours.

And now, days later, I sit here in the half-built nursery of my little mountain home, the place I haven't been to in nearly five months, since October. I have thrush and mastitis, the nursing problems of the pump and the preemie. I have only one twin, because Lazlo was supposed to be released today, but his  eyesight is getting worse, and they need to keep him three more days, when they will examine his eyes again. 

My heart is aching as I realize he will continue to lay alone in his hospital crib, a baby without a mother. 

My heart is aching that he will have lifelong issues to contend with. Will he have seizures, like me?

My heart is aching that I need to spend this time packing instead of holding and bonding with this precious newborn I do have, who needs a mother just as badly as his twin. 

My heart aches for my two other children, who have been shuffled around for so long, and now their home is gone, to be turned in to a vacation rental.

We've been gone from our home for so long, the ants and ladybugs have moved in. This is their territory, now. I feel like the imposter. How will I settle myself back in and move myself out at the same time?

The ants crawl over my baby's blankets and my cell phone, as I hold it in my hand. They scare my toddler, who shrieks "The ants! The ants are gonna bite me!"

No, honey. They're just ants. They're just ants, and ants don't bite. They tickle.

 

 

Mother (sort of) on the edge

The realization that life is all completely out of my control is the most liberating thing that has ever happened to me. I can't change anything.

 I can't change the fact that I'm pumping breastmilk in a hotel room because my son started spontaneously vomiting last night, and you can't be sick at the Ronald McDonald House, but they will be kind enough to put you up in a hotel. Thankfully, he snapped back to normal before we even got to the hotel. It was the weirdest thing I've ever seen. As we drove through the night to the designated hotel, my husband brought up the absurdity of being sent on a vacation because our son was sick. I countered with we should be used to absurdity by now, everything about our life was absurd. Why wouldn't I be driving through the night, in a car packed with bags haphazardly stuffed with clothes and toys, with my arm outstretched to the back seat holding a barf bucket? We dubbed it the Barfcation. In the morning, I took my all-better son exploring the property of the hotel, and it was nice. A moment for just the two of us, which is so rare these days, and soon to be rarer still. 

 

I can't change the fact that Lazlo needed his feeding tube readjusted, and I couldn't make him better when I heard his squeal, so I just covered my ears and ran to the cafeteria so as not to witness it.

I can't change so many things. But somehow, I'm finding my place amongst the chaos. I feel like I'm Dorothy, when her house is being whipped around the tornado on its way to Oz, and I'm past the point of hiding in bed. I'm actually doing OK for myself in my little tornado house, and I'm doing things like finding time in the mornings to do my hair and put on a little make up, while the house goes around and around in circles. I sit down at the checkered kitchen table and slowly sip a cup of coffee and bite into a croissant, while the wind blows my hair around my head. Then, when my house lands on the witch, I get up and stride outside to the Hospital Of Oz to visit my very own munchkins. 

It's a little like when I went to rehab, and I came out a completely different person. A stronger person. A person who stood up for herself, and voiced her opinions, and took care of herself. I'm a little like that person, again. The kind of person who knows what's really important, and doesn't take any shit. After spending 11 weeks essentially in isolation in my hospital room by myself, then suddenly being plunged back into family life, motherhood, where so many need so much of me, the temptation to lose myself to the demands of my life is great. It's overwhelming. But, once again, the Universe has taught me that I need to put my own oxygen mask on first. That's the truth about life, and I'm grateful to be reminded of it.

It's important to have fun.

It's important to take care of my own needs.

It's important to remember to laugh. To see the humor in everything, because there is. There really is. 

And then, little hints of how difficult my situation can be finds its way through the cracks. Gus was supposed to be released in a few days, and he had a set-back, so now he's not. I didn't handle it well. I forgot about how well he's been doing overall, not a single infection or crisis of any kind. I just cried, because my baby was coming home, and now he's not. He's not coming home yet. And I don't know when he will be. But his bed is here, waiting for him. Empty.

 

Together again.

So, the twins were reunited the other day, and it was the biggest moment of my life. 

 

These two babies, whom I have spent the past 35 weeks clinging to and holding on to, and talking to, and pleding with, and all of a sudden this moment is happening, and I'm traumatized by it all for the first time, because I realize I had been believing with every ounce of me in their existence so hard, that I never let in the opportunity that their existence might not be. I feel like I survived a ship wreck. I feel like I went to a place I didn't think I could go, and I walked out the other side. I feel like I just walked out of a battle I didn't know I'd win, I just fought it believing I could, against all odds.

They were reunited a couple nights ago, but I was alone, and I needed my husband, the solid rock that had carried all of us, to be there to witness this event, this thing that is the cumulation of our hopes and dreams, and believing in life when I'm holding our baby's hand, and he's dying, and I'm asking him to stay.

I sat at the cafeteria, my safe space, after I heard the news. Nobody called to tell me they were moving Lazlo like they had with Gus, I just arrived at the PICN (Pediatric Intensive Care Nursery) to drop off Gus's milk and say hello, and Lazlo was there. There he was, in the other room of the PICN, in his "big boy crib."

 

And I stood there in shock. I said hello to him, though he was peacefully asleep. Did he even know anything was different? Or was he acutely aware? Was he afraid? I ran to the cafeteria. I couldn't figure out why I was sad, because I had every reason to be happy. So I told no one. And later, I realized it was because I'd just survived a war, and I couldn't let myself feel sorrow while I was fighting. So, I felt it then, when it was safe.

Then, later, with Gus in my arms, I video chatted with Mike and the kids while Lazlo was brought to his new home, next to Gus, his twin brother, and we've been talking about this day for so long, and the nurses were promising him that place, against the wall, next to Gus's crib, and we've been daring to believe it, and now it's a reality.

Moments before, I was at Lazlo's bedside in room 2, a room at the other end of the PICN. I didn't even know it existed, but I loved it. It was quieter and softer. The nurses were older and calmer. There lights were dimmer, and the beeps were quieter, somehow. Room 1 is much larger and busier. As I held Lazlo in my arms, a nurse practitioner I barely recognized approached me. She told me she had been there one of the nights we almost lost him. She couldn't believe this day had come for Lazlo. I couldn't either. I finally had the nerve to start asking questions.

How many babies have you seen that were as sick as Lazlo? And how many of those babies survived?

The answers were humbling, but not surprising. And somehow, here he was, in the PICN, for reasons I couldn't explain, other than the fact that I don't have all the answers, and life has its own way. Even though Room 2 felt like a quiet haven I wasn't sure I wanted to leave, I was never so happy to hold them together for the first time in Room 1, surrounded by other parents living their miracles.

    

A day in the life.

My days are consumed with giving pieces of myself away to children who need them more than I do. It begins before I even open my eyes in the morning, when my 5 and 2 year olds are hovering above me, taking the pillow off my head to ask me to fix the wifi on the iPad or fix the strap on the diaper. Feed them breakfast, a crazy circus that involves throwing food at them as fast as I can make it, ignoring the fact that I've literally just crawled out of bed, and I'm standing in the community kitchen of the Ronald McDonald House amongst dozens of other people, and I haven't even looked in the mirror yet, but I can feel my hair floating around my head like Einstein and my boobs are bursting comically from beneath my sweater because I haven't pumped breast milk since I went to bed last night.

The 2 year old screams, and I look over at them, and she's flat on her face. My son looms over her, and he's looking at me with wide eyes, frozen in place, a deer in the headlights. 

What is going on???

"I hit her with this" (he holds up the Elf on the Shelf like this is Pride Rock and he's displaying baby Simba to the prideland).

I take the Elf away, and I snap something sharply at him, and he sits down, resigned. He doesn't protest, but the silent tear that slides down his cheek as he watches his toast breaks me. We talk about it, and I give him the Elf back.

I go back to our room and hook myself up to the pump, the cold, mechanical baby that vacuumes the milk from my sorry, unhappy breasts. I pump six bottles full, my boobs are so overloaded. While I pump, the 2 year old has become a baby monkey, and I am her mommy monkey, and we both must speak in high-pitched sing song voices. The ridiculousness of this situation does not escape me. Eventually, I milk myself dry, and I get in the shower. There is the 2yo, yanking off her diaper to get in with me. There is never a moment alone. When it's all done, we get out and I dry her off, and she immediately wants to take a bath.

There's the bath,

The poopy diaper afterward,

The detangling and brushing of her hair which requires all of my negotiation skills and sharp reflexes,

I get myself dressed somewhere in there,

There's laundry,

There's cleaning,

There's washing the pump parts,

There's telling my 5yo for the hundredth time not to throw his Elf around the room. 

I finally distract them with raisins and pass them off to our visiting aunt, who leaves tomorrow, God help us. 

I catch the shuttle to the hospital, and when I get there, I feel like I'm home. The halls are endless and the florescents bounce off the floors, somehow making them look even longer. I've wandered these halls more times than I can count, and they have still remained a labyrinth that confuses and befuddles me. Where am I, again? Which way do I go?

I make it to the NICU and I peer into the isolette of my littlest baby, my biggest miracle, the child who, by all accounts, shouldn't be alive today. I notice something different, something unusual. The feeding tube that is threaded down his throat and into his intestines is somehow pulled entirely out of his mouth, despite his tight swaddle, and my pumped breast milk, the liquid gold that I drop everything every three hours to produce, is flooding his blankets.

"Um, excuse me?" I stare at his nurse with wild eyes, the nurse who is staring intently into the computer screen, paying no mind to the tube on the loose. I remember just the other day when I came to check on this same baby, and his c-pap, the big ugly breathing mask, was gone. It was replaced by nasal prongs that delivered oxygen into the baby's nose. I pointed out to the proud nurse that they might work better if they were actually IN his nose, instead of on top of his nose.

There was a flurry of "Oh, how did that happen!" And the correcting of problems and the adjusting of the baby, just as there is now, with the feeding tube. For a moment, exhausted maternal rage boils up inside me, and the urge to speak my mind is almost too much to resist. But, then I remember the team of nurses who hovered by this baby's bedside all night to keep him alive. I remember the nurse who pumped oxygen into his lungs by hand for thirty minutes straight. I remember the nurse who skipped her lunch breaks to stay by my baby's side, because he was so fragile, you couldn't turn your back on him for a second. I remember these things, and I smile at the nurse who is mopping up his milk-soaked blankets and I hold up a cooler full of freshly pumped breast milk and I tell her there's plenty more where that came from, there's no use crying over spilled milk.

Even if I secretly kind of want to cry over the spilled milk.

I spend the remainder of my time at the hospital hustling between the NICU on the 2nd floor, and the PICN (Pediatric Intermediate Care Nursery [I think]) on the 1st floor, where my stronger baby lives, and the hospital pumping room. The highlight of my time at the hospital, aside from holding my babies, is the cafeteria. They give discounts to nursing mothers with babies in the NICU, and boy howdy, do I take advantage. Pumping around the clock gives me the appetite of a grizzly bear, and nothing makes me happier than sidling up to the dinner line. And yesterday, I breezed into the cafeteria to find the whole thing remodeled, with stations of wonderful new food, fresh bread and ice cream and salad bars, and it literally felt like Christmas morning. It really did. I almost cried.

By the time I catch the shuttle home, I'm already the kind of exhausted that makes you sit on the bench and stare blankly into space. But my night is far from over. The big kids are waiting for me, and their exuberant screams of "MOMMY!!!!!!" make me forget, for a moment, how difficult they are to put to bed. Bed time routines are out the window, as every night is different here in this crazy window of time in our lives, and basically all I can do to get them to bed on time is hope for the best. Sometimes it works. Sometimes it doesn't. Sometimes the 2 year old screams for an hour, and puts her shoes on and stands in front of me in her night gown, tears streaming down her cubby cheeks while I sit helplessly at the pump. She wants to be taken down to the kitchen for a snack, but she just had a snack, and it's bed time. She wants a bottle of milk, but she's too big for that. She wants, she wants, she wants. Eventually, she tires herself out crying, and my husband gets her to bed. 

By the time I unhook myself from my last pump of the day, I feel like a dead person. I am drained, physically, emotionally, mentally. I feel like all four of my children stand before me with open pillow cases, and I dole myself out to them, one by one, like Halloween candy. I know, in the back of my mind, that this won't get any easier, not really. Eventually, both babies will be released from the hospital, and then I'll have all four children in my tiny apartment. I'll still go to bed at night feeling like a dead person, but hopefully our circumstances will settle down enough to carve out a new normal, a routine, a thing we can call life. For now, I will keep trying, day by day. 

 

The land of Not Normal

It's midnight, and I'm sitting across the counter from a fellow NICU mom, staying at the Ronald McDonald House along with me. She's eating a microwaved plate of leftovers: tortillas, veggies, chicken. I'm shoveling a bowl of frosted flakes in my mouth so fast, the milk is spilling ungraciously off my spoon and out of my mouth. I make a half hearted attempt to not eat like a pig, but it's late, really late, and I'm starving. When I left the hospital a few minutes ago, a little girl was sobbing, wailing like she was being tortured. I don't know why, but judging by the parents reactions, it was in anticipation of something terrible about to be done to her. A treatment of some sort, perhaps. Her crying haunts me, and I still hear it.

My fellow NICU mom before me is the closest thing I have to a girlfriend here, and I listen intently as she crams food into her mouth, like me, and tells me about how her relationship is falling apart. The stress of having a sick baby is wearing on her fiancée. I vaguely think about my own marriage, and how hard sick babies can be on one. At this point, seven years in, my marriage feels a bit like a cockroach. It somehow survives in extreme conditions: having a baby while still newlyweds, living paycheck to paycheck, having another baby, still living paycheck to paycheck, me coming down with a chronic pain condition and subsequently getting addicted to painkillers and going to rehab for 7 weeks, more debt and living paycheck to paycheck, finding out we're expecting twins and then almost losing  them a bunch of times, and an 11 week hospital stay, and more debt. More stress. More more more. 

I sit there and I pour another bowl of frosted flakes (because it always has to be two bowls. It can never be just one. NEVER.), and I listen to my fellow NICU mom. For a moment, it feels almost like life is normal, and I'm just listening to a friend talk about her life. But there is no normal here, not really. We're wading through the land of Not Normal, where you visit your infant and try not to bother it with your touch, because it's hooked up to tubes and wires, and you could accidentally yank one of them out. Day and night mean nothing, so when you're having a feeding frenzy in the kitchen at midnight, you're joined by other parents doing the same, with the same blank look on their faces, the same glazed-over eyes.

How are you doing?

My baby had surgery today. I hope she doesn't die.

There is no time here. There is no Friday nights, Monday mornings. There is only now. There is only the hospital. There is only your child, fighting for their life, and you, fighting along with them.