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.