baby greg

Marion, Baby Greg's mama, came to visit me today. She looks smaller every time I see her, but her smile is just as wide, just as ready to forgive the world for all the wrong it's done her. Greg Senior, Baby Greg's dad, she explained, had driven her out. He found a new woman, and little Marion was no longer welcome in his life. She's staying with a sister these days, but she doesn't know what she'll do next year. Her sister has her own children to care for.

As we waited to get her signed in on the gangway, her cell phone rang. She answered, giggled, and hung up. That were my school, she explained. They wondering where I am. Any doubt about the purpose of her visit vanished, and we made our way down to my room.

Marion is twenty-one, and she's going to school again. Thanks to help from my cousins, Dave and Amy, and the junior high kids at my church, I have the money to sponsor Marion for the year. School fees aren't much here. Her tuition for each trimester costs 1,200LD. All the other costs (registration, books and such) are less than 2,000LD. Throw in another 1,200LD or so for uniforms, and you've got the total cost to send someone to school. Those numbers seem a little daunting, but add it all together and divide by sixty. Done? That's right. Less than 115 US dollars for a year of education. I counted out the money she still needed, and she tucked it carefully into a small plastic bag she extracted from her pocket.

She's in tenth grade now. If, somehow, she can find the money for two more years, she'll accomplish something that so few Liberians can claim; she'll graduate from high school. My life is too much invested in hers at this point to let her walk that road alone. We sat together on the end of my bed and tried to figure out a plan, a way for her to get the money for the next two years. We figured that it might be possible for me to wire money to her from whichever West African country I find myself in, but couldn't see how I would know what to send and how she would know when to pick it up. The answer glared back at me from the screen on my desk.

Marion! We can make you an e-mail account! Her eyes lit up, and she explained that, yes, there was an internet cafe that she could use and could I help her get started? I logged onto my computer, and within minutes, Marion had her very own e-mail address. I wanted to test her newfound skills, so I gave her a challenge. Come, write your first mail. Who should you write to? She laughed; it was a no-brainer. I will write to my Jennifer.

I set the computer on my lap and explained the basics of typing. I showed her what a spacebar is and what it does. I demonstrated the intricacies of the shift key. I explained about punctuation. And then I sat back and let her type. One. letter. at. a. time.

About twenty minutes later, her three-line e-mail was complete. She sat back with a sigh of relief, and triumphantly pushed send. We were headed back up to the gangway when she said something to me that I absolutely wasn't expecting.

My father wants to talk with you. If you remember, Marion's father is the one who cursed her, claiming for her life that she would never hold a live child in her arms. He was conspicuously absent in the whole of Greg's long hospitalization, and he never showed up after his death. We've all been praying for reconciliation, but it felt like one of those prayers you breathe over and over, never quite expecting it to be answered.

We are talking again. I told him about what you people did for me, and he wants to say thank you. And he asked me to please forgive him for what he did to me.

In the wake of Baby Greg, all I could see was the darkness; I was sure we had failed. But maybe that's okay. Because maybe, just maybe, a little boy had to die for a father to see the light.

If that were the only reason this ship was in Liberia this year, it would be reason enough.

It's hard to know what to say when faced with the death of a baby. What can I possibly offer to a mother who has just lost her heart? What words can I say that will blunt the searing pain? And what comfort can I give when that mama is faced with the sight of her son's bed, occupied by another small, brown baby, one who is sitting up and smiling at the world around him?

Marion came to visit me today. She's something of a celebrity around here, and it took me almost fifteen minutes just to get her down the stairs to the hospital as almost everyone we passed stopped to say hello. As we walked down the hall towards B Ward, she was all smiles, laughing and greeting her friends, nurses, translators and disciplers. It was only when we were inside amidst the bustle of a full ward that the flood of memory overwhelmed her. I stood there with my arm around her tiny shoulders as tears coursed silently down her cheeks. She turned twenty-one yesterday. She's a child herself, and yet she stood there, mute and small, mourning the loss of her third baby.

We turned away and went upstairs to eat lunch. We sat at a table by the window as she pushed the rice around her plate and told us about a dream she'd had. In it, she was out walking. Or working. She wasn't quite sure. People came up to her one after another and told her what a fine baby she had. Asked her how he was. She repeated to them over and over that she didn't have a baby. That he had died.

No, they said, he's right there. He's right there on your back. That was a good dream, we agreed.


Bendu, the sassy-pants who was burned after she had a seizure and knocked over her kerosene lamp, was back for a dressing change in our outpatient clinic. She and Marion became close while Baby Greg was still with us, so when Bendu's appointment was finished I signed her back in as my visitor too. We passed the rest of the afternoon like any silly twenty-something year old friends. We wandered around the ship, ate grilled cheese at the cafe, tried to call friends in Canada and hung out in my room for a while, laughing and filming video messages on my camera.

Weeks ago, as we stood by Baby Greg's bedside, watching him fight to breathe, Bendu told me that she was very sad. I asked her why, and she went on to tell me that she was going to be alone for the rest of her life. She didn't meet my eyes as she gently touched the warped, pink skin of her cheek and forehead. Quiet tears filled her eyes and as she explained that no man would want to marry her, not given the way she looks. So I will be alone. That is what makes me very sad.

Marion is a woman living under the shadow of curse. The longer I spend here in West Africa, the more aware I become of the reality of spiritual warfare. It's easy to be in my comfortable room and scoff at the idea that words could have such an effect on someone's life. But then I leave this room and go out and sit with Marion in her house and I am utterly convinced that this battle is so much bigger and so much more intangible than I could have imagined.

Given all this, I was struck today at how normal the day was. I think I expect women who have lost babies and been terribly disfigured by burns to be somehow different. More sedate, more aware, in a way, of the cloud surrounding them. But apart from the small moments when they retreat into themselves, lost in worlds of pain I can only guess at, Marion and Bendu are you and I and any woman ever. They're maybe more broken, a little more shattered, but underneath the scars and shining through the tears, I can so clearly see their love.

I want to love like this.

The past twenty-four hours have been so hard. I've lived the last ten minutes of Greg's life over and over in my head, staring at the ceiling all night long as I fought back the panic that threatened to overwhelm me when I turned out my light. But there's something utterly strange about this community I live in. I seem to be among people who have forgotten that our world is broken beyond recognition. Or, at the very least, if they do realize, they've chosen to live as though it were whole.

You see, grace has been poured into my spirit from every source imaginable. In the moments after Greg flew last night, there were a hundred things a nurse needed to do; I've done them all so many times before. But I was given the gift of being able to stay with Marion as long as she needed me while so many loving hands swaddled Greg and wrote out the death certificate and cleaned up his stuff and got Marion's bags packed for her. Hugs and sad looks and pats on the back and genuine, sincere questions about the state of my heart have bombarded me from every side. We have cried and laughed and prayed together, and I can't help getting excited for heaven. If this is 'a foretaste of glory divine,' Christ can't come back fast enough.


In the midst of it all, there's another, wild note in my soul; spilling out past the raw hurt is a kind of pure, fierce joy. I realized at some point as I sat there and sobbed for Marion's broken heart and my own that the pain I'm feeling is a privilege. I grew up in a country where I was safe, secure, loved. I've never known war (not really), and I've never watched my life fall to pieces in front of me. I have no idea what it truly means to hurt. Marion does. Every member of her family does. Grampa said it last night, his words halting and small. We have all lost someone. Every time, there is someone who can die.

I count it a joy that my heart feels like it's been shattered. It means that it's still soft, and it means that my life has been blessed. I must live the rest of my days in the light of that blessing.

I am utterly undone.

Baby Greg, my little Baby Greg, went to be with Jesus this evening. As I sat there on the bed next to him, in the time it took me to put a new monitor on his little toe, he seized the small moment that I was in the dark and slipped away. No fighting. No flailing. No fuss. He just. Stopped.

A thousand moments run on an endless loop in my head. Marion, brought into the empty ward where I waited for her, seeing my tear-stained face and falling to the floor, my arm the cushion for her head as we laid together and sobbed. His little mouth and nose and fingers, still and peaceful. Finally. Walking with him in my arms, a red-blanketed bundle, down the gangway and into the waiting car. Driving through the Liberian night, using my body to shield his from the jarring roads, errant lights from passing cars illuminating the curly wisps of his hair. Sitting by the light of a single candle, the flame still in the airless room, as all around me people cried quietly. Greg in his Grampa's arms, stripe-socked feet sticking out of the bottom of the blanket, as Grampa rocked him back and forth back and forth, crooning soft words in Kpelle.

Some of the children got to go back.

God, why?

Why are we left here with hearts poured out like water on the world?

My Granny just wrote me an e-mail and asked for an update on Baby Greg. It's funny, really- I've lost sight of the fact that there are people in the world who don't eat, sleep and breathe this situation. People who have to wait and read a blog entry before they know what's going on. I've become so entangled in his small life that I don't know that I'm ever off duty anymore. It's draining, and I know I've said this before, but I'm tired. I watch my fellow nurses getting days off and playing with their patients and having fun at work, and I'm wishing myself back to the days when my biggest worry was whether or not my little ortho patient was going to wipe out on her crutches.

Baby Greg has been up and down the past few days. He rarely has two good shifts in a row, but he's starting to gain weight and his breathing is markedly improved when he's able to tolerate being off the CPAP. (A photo of which I have included just so my esteemed PICU colleagues can laugh at my creation; it might not be pretty, but it gives him PEEP!) His g-tube isn't leaking like it used to, and we're working on getting him a different one from the States. He needed a transfusion yesterday; the charge nurse jumped at the chance, left the ward to donate and then came back to finish her work just feet away from where Greg was receiving her blood. The ship has taken Baby Greg under their collective wing, praying for him non-stop, twenty-four hours a day. All these little details and myriad more swirl and mix and have become second nature to me; reciting them comes as easy as breathing.

Phil came to visit the ward last night and hung out with Baby Greg for a little while. I was talking about it all with him over cinnamon toast at some point during the shift (which has stretched on so long I've absolutely lost all concept of time). Ever pragmatic, he just patted me on the back and told me not to worry. I can see why you're attached to him. It makes sense when he looks at you like he does. But just keep serving. You'll find your inspiration again.

Right now, I have to smile. Because it just happened. He's had a good night, honestly. He's slept comfortably most of the time, only thrown up once and never had the panicked look of a baby who can't get enough air. (That look breaks my heart every single time he brings it out.) About an hour ago, he decided to wake up and be angry. I changed him and patted his back and snuggled him on his side and did all the things he usually likes. No dice. So I climbed into his bed and pulled him into my arms. Whereupon he put on little hand on my chest and immediately fell asleep. And I was left there in the dark, my heart a puddle in my chest.

I'm in Africa in the first place because God told me to pour out my soul. To kick over my heart and let everything spill out. I remember talking about this with my youth group girls last year. We all came to the conclusion that we should go to bed every night absolutely empty, completely poured out on the world and relying on God to fill us up again for the next day. I'm wondering whether or not this is the first time I've really managed to do it.

Baby Greg smiled at me this morning.

It was at the end of a long night shift, the last three hours of which I had spent with him nestled in my arms, trying to get him to sleep. He, as usual, was fighting. It's what he does best, really, with a strength that belies the twiglike construction of his frame. He'd managed to pop himself off the CPAP mask four or five times in rapid succession, and so I decided that he could have a break. I released his face, stuck some oxygen in his nose and settled in to pat his bony little back. He figured it was a good enough deal, and decided to stop flailing around.

At shift change, when all the new nurses were trickling in, sleepy-eyed, I was sitting on the end of his bed, replacing his soother when he dropped it and suctioning out his throat when he choked. He was propped up on a throne of blankets and pillows, the smallest sultan ever to lord it over B Ward. The charge nurse came over to see how he was, and I displayed him proudly, sucking away on his soother like a champ. Not crying, not squeaking, not flailing. Just being a baby. A quiet, wide-eyed baby.

I keep getting the feeling that he's going to smile at me, I said to her, rolling my eyes to acknowledge just how ludicrous I found my own statement. She smiled wryly back at me, agreeing without words that I was asking too much. I turned back to look at him, just to revel in his peaceful wakefulness and the softness of his hair and the tiny grace of his fingers. Hi, small boy.

He looked up at me as the soother dropped out of his mouth. And his face broke into a real, honest-to-goodness baby grin. The ear to ear, tongue half sticking out with the effort, eyes crinkled almost shut kind of grin. And then it was over, and I sat there, tears in my eyes, my heart shouting a thousand praises to a God who really does give more than I can ask or think.

Baby Greg smiled. This too is what a miracle looks like.

Greg took a walk in the hall yesterday. They hooked him up to a portable oxygen tank and Teresa (a proud PICU member of Team Greg) busted him out of his B Ward prison for a glorious fifteen-minute stroll around deck three. He even came to visit Jenn and I (although I wasn't home when he came knocking).

So. This is what a miracle looks like.



In other news, the men's Wimbledon final was also on Sunday afternoon. A group of us were in the lounge watching when it started to pour rain outside. Not exactly a surprise, given that we are in the throes of rainy season. But as the wind picked up, the satellite feed stuttered and snapped to black, leaving ten or so very disgruntled tennis-watchers who had been rather interested in the 5-5 match.

What happened next was classic Mercy Ships. We gathered around a computer, logged onto Wimbledon.com and proceeded to 'watch' the remainder of that match. We stood shoulder to shoulder, cheering on our favoured players and promising ever greater feats of bravery (beard shaving and such) should our man take the day. First, the serve speed showed on the screen. Seconds later, either Federer's or Nadal's score would update itself, followed by shouts and groans from the collected group, which gained curious onlookers until the final point. Nadal carried the match amidst cheers and catcalls from close to thirty-odd people squinting at tiny print on a computer screen. And none of us really thought it was strange.

We talk about the real world quite a bit around here. I have no idea what it looks like anymore.

It's hard to know what to write about Baby Greg sometimes. Hard to know how to sort though the good and the bad and the just-plain-confusing and distill this whole situation into just a few words. When the truth is that I spend most of my moments thinking thousands of words about all this, and I could write forever, trying to explain my feelings and experiences and emotions. And still I don't think I'd be able to properly convey to you how it felt to walk onto the ward this morning for ward church and see Baby Greg. And have his nurse tell me that yesterday he was able to drink from a bottle. (Not much, and he still choked a bit, but he did it on his own.) And this morning he was able to come off his breathing support for over an hour. (Granted, he still sounded a little like a sick duck, but he was doing it without the mask completely covering his little face.) And he's able to be awake and looking around and not crying. (Not for more than a few minutes, but it's the first time in weeks he's had that kind of peace.)

To sit here and actually be able to honestly type Baby Greg is doing better seems like some sort of weird dream. I know he's on a long road, one on which he's only taken a couple of very small steps, but right now he's going forwards instead of backwards. I say I have faith, and I say I believe that God can work miracles. Why is it that I'm so shocked when He shows up and does what I ask?

I was talking with Marion and a couple of the translators yesterday while I visited a sleeping Baby Greg. Marion was asking me some questions about Greg's condition and I was answering as honestly as I knew how. Hope is sometimes a dangerous thing; believing that her baby can get better is important, but not being prepared for the opposite outcome would be absolutely devastating. At some point, my words failed me; there was nothing more to say, so I repeated the mantra we've practically been chanting over the last days. God can make a way.

Cynthia, one of the translators who was sitting with us around Greg's bed, put her hand on my back as I sat there on the floor. No, Sis Alice. He has already made a way.

And it's true. Because miracles aren't always Lazarus emerging from a tomb or thousands of fish jumping into a boat. Miracles can be smaller than that. They can be a baby drinking a thimbleful of milk or a mother laughing for the first time in days. God has already made a way for Baby Greg. And all I can do is let my heart sing the praises He's been waiting to hear as I keep praying and waiting for Him to continue making His way.

I've never been much one for postural prayer. I don't always bow my head when I talk to my God, and I sure as heck don't find myself on my knees very often. Today was different; I spent yet another twelve hours at Baby Greg's side.

He didn't have a very good day. Once lunchtime had come and gone, Greg decided that he hated everything about life and would just cry for the rest of the afternoon. This meant CPAP that didn't work properly and a heartrate that had me wondering just how much longer he could keep it up. Beds in our wards are low to the ground, and I've never really been short, so by about one o'clock, my back was screaming and my legs were ready to give out. And still Baby Greg cried and thrashed and fought.

So I knelt next to his bed, leaned over his little body and started to pray. I patted his chest, the span of my hand measuring exactly space between his skinny shoulders, and I cried out to God for peace. Peace for Baby Greg so that he could just find sleep. Peace for his mama, facing the loss of yet another child. Peace for us nurses, shattered yet again by a baby who might not make it. In the midst of it all, Greg managed to work his arms free from the blanket swaddling him. As I knelt there, my eyes shut tight, I felt two feathery hands curl around my fingers. I looked down into the wide open eyes of every baby I have ever cared for, and he was pleading with me, like they all do, to just make it stop.

This is not what I thought I was getting myself into when I came here. Truth be told, I was maybe ready for a small break from the intensity of the PICU. Some time away from telling parents horrible news about their children. Hope and healing. Instead here I am, stuck in yet another situation where hope seems the very thing we can't grasp.

We took Marion, Greg's mama, into another room to talk with her about Greg's condition. We sat with her and explained that it's not her fault and it's not our fault and it's not anyone's fault. But things aren't good. And she sat with that stone face that so many mamas wear to mask the hurt. And I felt my life repeating, a record skipping over and over, and I wanted to scream.

And then something happened that I've never experienced before in a family meeting. One of our disciplers, a woman named Lucy, got down on her knees in front of Marion's chair. She took Marion's hands in her own and began to sing quietly.

Able.
Able.
I know He is able.
I know my God is able,
to carry me through.

We joined in, voices quavering and small, and Lucy prayed as tears slid down our cheeks. She prayed strong prayers to a God she was fully convinced was just waiting to work miracles. And then it was finished and we went back to the ward and Marion took Greg in her arms and nothing had changed and I'm left wondering where my miracle is.

Because I know God is listening. I spent hours today at that bedside, my hands covering Greg's body, like so many mamas, thinking somehow my hands could be enough to protect this little one who isn't even my own. I knelt there and prayed over and over the words from a song I once sang in a candlelit church in Germany. Oh Lord, hear my prayer. Oh Lord, hear my prayer. When I cry, answer me. Oh Lord, hear my prayer. Oh Lord, hear my prayer. Come and listen to me. And I knew He was listening. I knew His heart was breaking along with mine. And I know that He can do the miracle we're all asking for.



I'm just trying to come to terms with what it will mean if He doesn't.

Sometimes being a nurse feels like belonging to a strange, secret club. We have our own language (where things like tracheomalacia or amp and gent or positive pressure ventilation actually mean something), and our own set of weird customs (such as hanging out in hospital wards on our days off). Most days, it feels good. It's incredibly satisfying to scrounge around the cupboards of an ICU, make a call back home to your old unit who, six months down the road, still seem excited to hear from you, and manage to MacGuyver a bubble CPAP setup that actually works. It's the biggest rush ever to realize that your being the one to care for a particular baby during a particular shift has actually made a difference in the baby's condition. And it just makes you happy to have a mother's face light up when you walk through the door, knowing that she trusts you with her child's life for the next however-many hours you'll be on duty.

Unfortunately, while the past couple of days have been something like that, they've also been laced with a very real sense of frustration. Sometimes being on Team Nurse isn't all it's cracked up to be. Sometimes, despite all the paper clip and duct tape creations you rig up and all the moments of getting the baby settled and sleeping for the first time in forever, it just isn't enough. Sometimes they get worse instead of better, and you can't stop questioning your every decision. Sometimes you just can't stop worrying.

Baby Greg isn't doing so well. He's slipping backwards, his jaw starting to swell again as his small body burns with fevers. He's struggling to breathe but fighting all our efforts to help him. And we're at a loss. We talk about him constantly. We sit at dinner, and instead of socializing with friends, we huddle there, heads bent together as we try to come with a new plan. We talk about him in the halls as we pass nurses who are on shift. We visit on our off hours, just to see how he's doing.

I know I'm taking this too personally. I know I'm not the only one who cares about Baby Greg and I know I'm not the only one who can care for him. But these days, this whole nurses' club seems terribly exclusive. There are only a handful of us here who are experienced and comfortable with caring for such a sick baby, and we're being looked to as 'experts.' It's scary, really. I came from a health system with a ton of oversight. It sometimes felt like I couldn't make the slightest move back home without going through a complex hierarchy of charge nurses, residents, fellows and attendings. If I didn't know an answer, there were always about twenty people within reach who could help me out. Here, the doctor (an orthopedic surgeon) asks the nurse (who, thankfully, was Jenn, an incredibly skilled NICU nurse) which antibiotics he should give. Here, the few of us who are comfortable caring for Baby Greg can't get sick, because there just isn't anyone else to call to cover for us.

It's such a strange paradox. I love working here because I love the challenge of making something out of nothing. I hate working here because, all too often, I'm expected to make something out of nothing. With Baby Greg, right now it feels like we have nothing. We don't have the right doctors. We don't have the right supplies. We don't have enough nurses. We don't have the answers. But I can't look his mama in the eye and tell her that. I can't bear the thought of explaining to her that she might lose yet another child.

So we'll keep fighting. We'll keep coming up with new plans and inventing new equipment and praying for miracles. Because, right now, that's all we've got. And I hope it's enough.

I remember one of the last days I worked in the PICU back in the States. I was in charge, and it was early in the shift when I got the call from the ER that baby Mark (not his real name, since America actually has HIPAA laws) was on his way up. Mark had been at home, snuggled in with his parents, when his heart just stopped. We had no idea why. What followed were three weeks of heartbreak and confusion and pain for his family as they watched him slip away. Mark's mum was the constant. She never left his side unless it was one of the nurses she trusted caring for him. She kept meticulous notes, writing down facts and numbers and events as if a complete catologue could somehow be the key that would allow her out of her prison of grief. She played classical music constantly, explaining ruefully that she didn't think he was going to make it, but just in case a miracle happened, (and she firmly believed it could) she wanted to give his little brain the best chance it had.

I spent long hours in that room, whether I was caring for Mark or not. I would sneak in after my shift, pull up a chair, prop my feet up next to the baby, and we would talk about anything but what was going on in that bed. She told me stories about meeting her husband and related the funny things their two-year old had said. I told her about Liberia and about why I was quitting the job I so clearly loved to go live on a ship for a year or two.

I wasn't working the day Mark went to be with Jesus, but the nurses I work with called me to let me know it had happened. Truthfully, it was for the best, and we all know it, his parents included. As Mark's mum walked out after saying goodbye to her baby, she handed the CDs to his nurse. Please give these to Ali. I want her to play the music for the kids in Africa.

Why on earth, you must be asking, are you telling this story? What could possibly posess you to bring that all up again? Why think about it? It's because I'm listening to that music right now, sitting in the ICU next to another baby who needs a miracle. The strains of Canon in D weave in and out through the sounds of his labored breathing, and I'm left praying for the impossible.

Baby Greg is a tricky one. Born with a tumor on the side of his neck that was slowly growing to cut off his airway, the only chance for his survival was an operation to remove it. What we didn't know before surgery was that his little airway never had a chance to form properly. It's weak and floppy, and it means that now, despite the fact that the tumor is gone and may never return, baby Greg still can't breathe. In America, this would be simple. We would throw in a trach, set mom up with homecare nurses and supplies and send Greg home to wait until he outgrew his condition (which, almost invariably, these kids do).

But this is Liberia, my heart cries. Liberia. Which means that, yet again, the latitude and longitude of this sweet baby's birth will most likely be the parameters that rule his death.

I don't often do this, but I have a proposal for you: I'll hang out here in the ICU. I'll jury-rig CPAP and I'll suction his throat and I'll put his food right into his stomach through a tube so he can use every ounce of his energy to grow. And all of you, oceans away or maybe living just down the hall on this very same deck? Please pray. I'm firmly convinced that we have a God who absolutely loves to do what we think is impossible, so let's storm the gates of heaven for baby Greg. Pray that he would gain weight and that his airway would strengthen so that he can breathe well without all the support we need to give him right now. Pray for his mama. She's young, but she's already lost two babies, and rumor in the village has it that she's cursed. And pray for all of us, that we would make wise decisions and that we would be able to care for and love on baby Greg in just the way he needs.

Go team.