On Wednesday, March 7th, we completed our car trial. Our final to-do before the big day. It was the very first time that Little Bird got to experience the sunshine on her face. A breeze on her cheek. The very first time she stepped foot outside of a hospital in over eight months. She loved every minute of it. So curious, as we wheeled her and her posse of equipment downstairs towards the parking lot. Smiling at people on the elevator. So proud of herself when we got back on the floor, and friends circled around, hoping for a peek of her sitting in her car seat. And that was another first for her, too. Such a wonderful day. For a split second, it almost felt real. It almost felt true. We were so close.
Three days later, Little Bird was so happy. Sitting at the nurses station that Saturday afternoon. Eating Popsicles. Wearing a pager, and a 'charge nurse' name tag. Greeting visitors as they walked into the PICU. The biggest, goofiest grin in the whole wide world. Our family was so busy. Coordinating with our home nursing team. Organizing Monday morning's game plan. One of our nurses would meet us here first thing in the morning, and accompany us to and from the hospital. Our respiratory therapist would be here by the time we walked in the door with the baby. Our nurse managers would arrive shortly afterward. We were going to give the older kids the day off from school. It was going to be such an amazing milestone. Little Bird was finally coming home! And then, all of a sudden. Everything slipped thru our fingers like a thousand grains of sand. Spring ahead.
An epic argument with my oldest son that night. The worst we'd ever had. Stupid. Selfish. Overbearing. I knew it all, and had to have the last word. Feigning sleep on the loveseat. Number Five, on the couch next to me. Footsteps on the stairs. Was Number One coming back for round two? I didn't open my eyes until I heard MFH's voice. Confused. Half-asleep. Pacing in place. "I don't know if this really happened, but I think the hospital just called."
Something was terribly wrong. Little Bird. Lethargic. Feverish. Her belly began to distend. An initial white cell count thru the roof. They started broad spectrum antibiotics immediately, but needed our consent for further treatment. A CT scan with contrast. Wait by the phone. We thought it was a joke. A farewell prank by the staff. One for the road. Or even perhaps Marie. She was known to throw emergency scenarios at us during training. It was four o'clock in the morning. Nothing ever makes sense at four o'clock in the morning.
After a while, they didn't call back. So we called them. Linda was her nurse. And she did not mince words. "Listen, you don't want to walk in here right now and see her like this." Nobody knew anything. The scan showed a few ominous air pockets, but nothing more. Maybe somebody mixed up her bolus and continuous night feeds. I almost did that once, myself. But it didn't make sense. High white cell count equals infection. Fever and lethargy equal infection. Distention to fifty two centimeters equals....."Oh, God! Call them back! Call them back RIGHT NOW! It's NEC! IT'S NEC!!!"
Necrotizing enterocolitis. We'd been there before. Long ago, in the NICU. And Linda understood our urgency. She was already leaning on the doctors for us, thinking the same. Do you know the odds of this happening again? The odds of it striking at eight months old, and for the second time? Less than four percent. Her odds of surviving a perforation? Virtually non-existent.
MFH left to gas up the van when a resident on the floor called back. They needed more consent. Anesthesia. An emergency laparotomy. Go in, and see what's going on. Release the pressure that continued to build. Fix her. Make her better. By the time he got back, I could barely say the words to tell MFH what was going on. Very real, tangible pain. Like someone was physically crushing my soul. They said it would only take an hour. Hour and a half tops. Should we pack a bag? Bring the binder? It's funny, the way you forget everything you ever knew when someone tells you that your baby is going to die. We wouldn't get the chance to question anything. The next phone call came from the surgeon. He stopped mid-way thru the procedure, refusing to put her thru any more. "Mrs. Sanko, how quickly can you get here?"
The elevator door opened. The lights on the floor were dimmed. Not a soul in sight. They were all in Little Bird's room. She'd just come back from surgery. They ushered us inside. I heard her before I saw her. Talking thru her trach. Her head, turning from left to right. Her eyes blank. Febrile. Delirious. Sweating. Shivering. Hurting. A spider web of IV lines. More than we'd ever seen before. Doctors. Nurses. Surgeons. All crying. I gave her my finger, and she squeezed it with such ferocity. "No boo-boo's, Sweet Love. It's just a dream." There wasn't even time to close the wound.
Her surgeon came over after a few minutes. Trying to explain what happened. A stroke in her bowel. Loss of circulation. Necrosis. Spreading like wild fire. He removed as much infection as he could, but didn't think he was able to get it all. "When will you know? When will you go back in and check?" He paused for a moment. "That's what I'm trying to say. I'm so sorry." And all I could think of was priceless life. I didn't even realize that I'd said it out loud until I felt her respiratory therapist put her hand on my back. "Priceless life", and everyone just stared at me. "It's what her name means. We didn't know that until the other day, when we looked it up. We didn't know that when we gave it to her. Priceless life."
She was in septic and hypovolemic shock. Ninety percent of her small bowel and colon. Gone. Where else could it even spread? The only place left was her stomach. And so much black tar coming out of the drainage tubes. They were giving her a king's ransom worth of powerful pain medications, at our full discretion. Yet her heart rate was still hovering over two hundred. Full vent support. Blood transfusions. Three different antibiotics. Fluids. Glucose. Anything they could give her to keep her comfortable. I asked if she was getting Tylenol for the fever. She wasn't. There was nowhere to give it.
And she was so tired. But she wouldn't sleep. She seemed so scared to close her eyes. We stood there, holding her hands, talking to her. For hours. Giving her kisses. Wiping her down with cold washcloths. Playing music. Telling her we'd watch over her if she chose to rest. Finally, at three o'clock on Monday morning, she did.
Her nurse made sure to silence the alarms on all of the machines. But in that moment, I'd wished I was blind. For the next several hours, we stared at the numbers on the monitors. The fluids through the tubes. Her chest rising and falling to the rhythm of the ventilator. The clock, intimidating us from across the room. Every so often, her breathing pattern would change, and become distressed. Her nurse would look at us, and raise her eyebrow, and we'd nod. And she'd give her another dose.
After a while, her vitals actually began to steady. I took a walk outside and sat in the van for a long time, just staring. Thinking. Months ago, I was sitting in the waiting room of my doctor's office when a woman across from me began describing to everyone else an experience she'd had. She was older, and graying, and there for a re-check. She said she'd gone in for a plastic surgery procedure, and her heart stopped on the operating room table. Clinically dead for nearly seven minutes. A bright white light. Feelings of love, and of warmth. I was actually trying to tune her out, until she continued further. She said there was a voice, neither male nor female. And this voice told her that unless her mother was there to greet her, she couldn't stay, and would have to go back. She said there shadows everywhere, and that she walked thru them, searching for the one that was most familiar to her. Once again, she heard the voice, as it instructed her to return. And I suddenly, I couldn't distract myself from her. But that quickly, she was called back by the nurse. Sitting in the parking lot that night, I thought about her. About what she'd said. I couldn't help but wonder who was waiting for Little Bird.
A team of residents came in and explained to us that if she could remain stabile, her surgeon was going to go back in that afternoon and take another look. Make sure he'd gotten all of the infection out. "Could she handle that?" By the looks of things, they thought she would. Her blood gases were beginning to prove that the lactic acid level in her little body was decreasing. The antibiotics were starting to work. For the first time since July 9th, 2011, I was truly thankful for the machines. For the IV lines, and drainage tubes, and wires. A ventilator, and a feeding tube, and a trach that were no longer the enemy. Everything happens for a reason, and I finally understood why all of that was meant to be. Everything is eventual.
A few hours later, her nurses told us to go home. Do what needed to be done. Talk to the kids. We'd left them in absolute in chaos. Call the family. Make sure they knew what was happening. Prepare. But how do you do that? There is no way. There is nothing in this universe that could ever prepare a parent or a sibling for something like this. Little Bird was still asleep. Stabile. And not yet scheduled for the operating room again. No one knew when it would be. Her fate was hanging on a phone call from a few hundred miles away.
We weren't in the door an hour when it began to ring. The staff called an emergency meeting. They weren't going to attempt another surgery. Not yet. It was too soon, and she needed more time to heal as best she could. She was still asleep, but it wasn't a coma. She continued to respond to pain. If she held on until Tuesday, then they'd go back in. Check. Insert a central line. They'd already booked the suite for nine thirty the following morning.
We tried to do Marie's job. It's a lot harder than it seems. A thousand phone calls. The school. Our pediatrician. Our in-home nursing team. The home health supply company. Our respiratory therapist. Her crib is still in the living room. Decorated in pink, and waiting for her. Supplies are still arriving as I type this. The pharmacy called. Her prescriptions are ready to be picked up. Calendars on the fridge. Our nursing schedule. Outpatient appointments. Cases of formula in the foyer. "What do I do with all of this? Because it's here, but she isn't."
The house was so quiet. Nineteen hundred square feet. Seven people. Not a sound. Number Five doesn't understand. "Why can't heaven fix her? The hospital has band aids." She's never even lost a pet. How do you make a four year old comprehend the impossible? And the older kids. Not knowing what to do or what to say. The look of panic on their faces every time the phone rang. Them, standing watch over their parents. Sleep is the enemy for all of us. So hard to get there, and when we wake up, it's last Sunday night all over again. Instant anxiety. It all comes rushing back. I stayed on the loveseat, watching the clock. They rotated on the couch across from me. Taking turns. Staring at the television. Not realizing that they are in high school, and were watching Wow Wow Wubzy. Even when I ordered them to bed, they didn't leave.
Stuck behind a school bus, on Tuesday morning. We didn't get there in time. They'd just taken her into surgery when we arrived at the front desk. When they said it would be four more hours, we knew that they were suspecting the worst. I couldn't sit in her cribless room. We went out to the car to wait. Sitting in the parking lot. Watching the crow. Perched in the tree across from us. Cawing. Staring. It flew directly over us. And then the cell phone rang, and it felt like my heart exploded inside of my chest. Her nurse, Amanda. "She's out of surgery. They need to speak to you. Come upstairs." It had only been twenty minutes.
We damn near crawled back inside and up to her floor. Not knowing what we were about to walk into. Not wanting to know. We got to the desk, and Marie was there, waiting for us. Once the shaking started, I couldn't make it stop. She led us into Little Bird's room, and her surgeon came in behind us. All of the lights were out, and nobody was turning them on. He leaned up against the wall. I looked at Marie, at MFH. At the surgeon. At the floor. Oh my God. Here it comes.
"Forty centimeters". The swelling had gone down enough for him to be able to get an accurate measure. That is what remains of her small bowel. The infection did not infiltrate her stomach, like he'd thought it did. The antibiotics were fending it off. He'd spent the last forty eight hours consulting with the University of Pittsburgh. Directions on what to do next. Instructions on how to put Little Bird back together again. Whether or not she'd be transported across the state. Whether or not she'd be considered a candidate for a transplant. Whether or not twenty inches would be enough.
They advised that it was. Enough for an attempt to repair the damage. He was going to give her another day. Another interval to rest. Until Thursday. Resection the piece, and place an ostomy bag. He didn't insert the central line yet. She wasn't able to tolerate anesthesia that long. So he scheduled that for Thursday, too. Her arterial line was still intact. And he suspects an underlying condition. A blood clotting disorder that may have caused all of this.
They brought her back from the operating room a few minutes later. Tiny. Fragile. Pail. Swollen. Unconscious. But still responsive. Amanda and Linda got her situated while we spoke with Marie in the hallway. I knew we were out of the vent program. But I needed to hear it from her. She just hugged me. Apologized. It wasn't her fault. It wasn't anybody's fault. No rhyme or reason. It simply just is. And I want to be angry. Believe me, I do. Because being angry feels a hell of a lot better than being destroyed.
When we went back in, Little Bird knew we were there. She heard us talking to her. Felt us kissing her face and fingers. Smelling her hair. So much of that is now gone, too. Shaved away. To make room for the scalp IV's. And she started talking thru her trach. Almost singing. A strange, rhythmic pattern we've never heard from her before. Like she was trying to tell us something. She squeezed my finger again, very tightly. We spent a long time talking to the nurses. They said they'd received word on Sunday night. They called each other at home. Started a prayer chain between them. "She won't give in. Not to this. She's been thru so much. If anyone can do this, it's Little Bird."
But her arterial line had collapsed, along with just about every other IV site they'd attempted. And they needed something more permanent. They'd inserted a PICC line. By Thursday morning, she was still stabile, but the PICC line had also deteriorated. Her surgeon cancelled the previous plans for that day, and instead opted to take her in and place a Broviac. A catheter in her heart. They'd wait until Monday afternoon before trying to resection her bowel. Too many major surgeries, back to back already. And they weren't operating on just any patient. Little Bird is very much their baby, too. There is no such thing as strangers. Not anymore.
On Friday, she started to come around. Not quite fully awake. But more responsive. Half smiles. Trying to keep her eyes open. They started TPN and she tolerated it a hell of a lot better than anyone expected she would. The central line was also steady, and she wasn't rejecting it. We spoke to her anesthesiologist, to give consent to Monday's surgery. He read her chart, and immediately thought she wouldn't be able to handle another procedure. But when he walked into her room that evening, he changed his stance. He didn't expect to see her, kicking her legs. Looking around. Nobody really did. But she was. "I don't know any other way to say this, but your daughter was touched by the divine."
On Saturday, Little Bird was back. Alert. Smiling. Talking thru her trach again. As soon as we walked in, she turned her head toward us, started gabbing, and wouldn't stop. Ironic, how God would let her in on the biggest secrets. The little girl, who can't speak, but knows what she saw. The tiny baby, patiently waiting for an entire medical community to figure out how to fix her broken body. Yet, still finds it within herself, somewhere, to smile. She may be in pieces, but her will is as strong as it ever was. I'd asked her, last Sunday night, to give me a sign. "Tell me what to do, Sweet Love. Tell Mommy. What do you need me to do?" When she squeezed my finger, and looked me in the eye, I knew what she wanted. To be here. Regardless of all of the pain. All of the needles. All of the surgeries. She has God's ear, and he's listening.
She had her tenth surgery on Monday afternoon. As far as anyone could tell, so far, it's considered to be a success. They were able to resection the forty centimeters of small bowel as instructed. The specialists at Pittsburgh said to give her some more time to heal. As early as today, her team will attempt to reintroduce formula to her digestive system. If she is able to tolerate it, they will continue to do so, slowly increasing her amounts until her vitals signal for them to stop. After that, we wait. Three to six months of healing before she begins a series of major surgeries aimed at stretching what's left of her intestinal tract. And she will need every second of that time to recover. Her efforts at breathing CPAP were proving to be too much too soon, and so she is back on vent pressure support. The fever still lingers. And we've yet to learn the full extent of damage to her other major organs.
Tomorrow isn't something we speak of anymore. Even those first precious ten days of her life were nowhere near as delicate as it is right now. And I can still feel it. That fist around my heart. That lump in my throat. The phone rings, and I can't breathe. Home is another word we've yet to mention. And honestly, it no longer even matters. My daughter is alive right now. Thirteen days ago, I'd have given anything to have her with us on this one. And I meant it. Three to six more months? I'll do that, standing on my head. I'll do anything.
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