Day 44: Watching & waiting

A year ago I walked the bridge to the hospital and ran into my friend, Martie. I was on my way out, thinking about how I was missing all of the first-year bustle at my job, wishing I was back with the excited and hormonal freshman wearing their very best outfits and worrying about favorite notebooks and pens and when they'd get their box of books from the book store. I could almost smell those books. But Martie called to me and grabbed my attention. I, in turn, grabbed her in a tight hug.

I hadn't seen her in years. Her son had been diagnosed with cancer and had been admitted to the hospital the day Jonathan was born. He had spent the last month and a half asking for regular updates about the baby in an isolette several floors below him, and we were following their story and praying for them. I couldn't believe we hadn't run into each other until now.

Her son bonded with baby J before he had even seen him. In many ways, more than just physical, they were in the same place. Fighting for their life, dependent on drugs and machines, and all with a lowered immune system. Over that summer they both experienced the dangerous and scary cascading effect as one organ began to fail and the others, surprisingly dependent on the function of that one organ, also started to slide. That or the teetering balance between improving one body function (for example, growth through TPN for Jonathan) at the cost of another (here increased risks of liver problems).

Martie recounted NG tube insertion/removal issues, which apparently is both horrifying and fascinating when you have your yet pre-teen son do it himself. She commiserated with me at the utter exhaustion of multiple months in the hospital, and finding care for children while trying to care for a sick child. And then she surprised me, because more than that, she understood a lot of the medical talk I threw at her about Jonathan's status. And as I explained things to her, shereally wanted to know. A lot of people have eyes that glaze over, or they become uncomfortable when you start to talk about medical issues or health.

Martie had been on the front lines, though. When you're one of two primary care givers for a dangerously sick child, you learn to get over it. Even if my stomach churns, and my head feels faint, I have to know. I want to know. Moreover, I don't want the doctor to think I'm someone who can't handle it, because if they think that they may sensor information that would be so important for me to know later on. So I act strong, I fake the strength until my stomach learned not to churn and my head is able to stop itself from floating away. I asked questions when I didn't understand. I gained confidence as a lay person in a medical world.

Apparently so had Martie.

Our conversation was brief, but refreshing. It started with a hug, continued with updates, and ended with us rushing off to care for our children -- me on my way home to care for my girls, she on her way to care for her sick son.

.....
I'm going to pause here. Jonathan and Martie's son, they both had it bad. Cancer and prematurity. Today there's another baby, about Jonathan's current age, out there fighting for his life. His first name starts with E. He has a brain tumor. It's aggressive. The chemo has not been good to his body. Much like Jonathan or Martie's son last summer, his body is shutting down. But he's tiny. Very tiny. And I don't want to see another stone where the birth and death dates are too close together. So, praying friends, could you pray for him tonight, too? Like J a year ago, he's tiny, he's weak, and he's being asked to fight. Like Martie's son, he's been given drugs to cure the cancer, but those drugs are taking too much of a toll. The mom is a friend-of-a-friend, but her story hits home. It really hits home.

A year ago this is what I wrote on our care page:

-----

Written August 30, 2012 9:20am

All,

So many of you have never met this guy, and yet your heart has gone out to him and to us in such meaningful ways.  Thank you.  Some of you I haven't seen since high school or since that one time in my college years when you introduced me to Settlers of Catan -- so, ten to fifteen years ago.  And yet you are keeping up with this little guy and sending notes of encouragement.  I don't always respond to every note, but each one is so meaningful to me!  Thank you!

I'm confident that God is sustaining this little guy.  I don't talk like this often, but here I know it's true.  We feel surrounded by your prayers, and I can only imagine that Jonathan is feeling some of this comfort as well.  There have been so many times where this little one has beaten the odds, and yet he keeps fighting. I know the time may come when God, in his mercy, says that the pain Jonathan is going through is too much, and it's time for him to come home.  I hope that will be when he hits 80 or 90 years old, certainly long after I've left.

Right now we're sitting and waiting for the next 48 hours to pass, for Jonathan to have surgery far behind him and still be looking good. As noted before, we're paying close attention to renal function (kidneys) and heart (esp. blood pressure).  He's on a medication to help his kidneys function better, but if that med causes his blood pressure to go too high, the meds will be discontinued and he will be on his own for kidney function. He's too small for kidney dialysis.

So far so good. (But please keep praying!!  Often it looks good, and then turns bad over 12-24 hours.)  He's on a half dose of morphine for pain, he's looking less puffy.  The skin around his upper arm is loose for the first time in several days.  Still some edema but not as bad as a few days ago.  He is ACTING much more like himself.  He's peeing which always makes me cry a bit.  Peeing is so good.  It means his kidneys are functioning and his edema might be coming down even more.  His blood draws check for kidney function by testing two different things in the blood, and those numbers are now nearing the normal range. They're not fantastically improved, they are about what they were yesterday, but they at least aren't worse.

They weren't able to put in a central line during surgery yesterday. He was too puffy for them to find the veins.  Since he's going to be on some IV nutrition for the next six weeks, they will have to get this line in soon.  They'd like to wait until Monday to do this (so that he's been on antibiotics for at least a week) but he's running out of veins to poke for IVs, and the IV lines go bad within a day.  Often he needs to have two IVs, one for nutrition and one for receiving blood.

So, to summarize:

• Concerns for post-op recovery and his body's ability to function, esp. kidneys and heart
• Praise that he's doing well so far
• IV concerns -- hoping that IVs stay good longer, that he doesn't have to be poked too much, and that he has enough IV sites remaining so that we can push off inserting a central line or PICC line until the bacteria has cleared from his blood.
• We are feeling your prayers and concern in powerful ways.  Thank you.

Thank you for walking with us.

------------------------------

(Okay all you pediatric PT folks, I know what you're
thinking. Bad form. Exersaucers are nearly entirely forbidden for
preemies for muscle development reasons.
 BUT we don't own one, it was for a short time
in a clean nursery with very few other kids,
 and it made for a VERY cute picture.
And he was THRILLED.)

Those are some of the bleakest pictures I have of my son. I don't have much of an update from today, a year later, but I will tell you he was very proud of himself at his ever increasing mobility today. He loves to play peek-a-boo. Object permanence?  COOLEST THING EVER. He plays with himself and his mobile, too. No parents needed for this game.

Oh, and I got to hang out with those "hormonal freshman" in their new-school best today. And it was just as fun and exhausting as I remember. And much better than being on a medical bridge to uncertainty.

These are pictures from this week. You knwo what else happened this week? Jonathan went and saw Martie's son in the hospital again. Martie's son is, over a year since his diagnosis, still undergoing the dreaded body poisoning to rid himself of cancer. I'm not going to post the adorable pictures of them together (him being her son and not mine and all that) but you may imagine it. Pre-teen boy having hair-wars with my son (my son is winning). Jonathan adored his pillow. He adored Jonathan's everything. Because, really, who can resist a smile from Mr. Jonathan?
In the spirit of all that, here are other pictures of cute Jonathan doing cute Jonathan stuff.

It is SO good to have a reader in the house!

Day 42: NEC part II (bowel perf)

A year ago now I woke up and, as usual, called the NICU. I called around six so that I was sure to get the nurse who had been with him all night.

She reported that he seemed much more comfortable than he had earlier in the night. I sighed. Maybe he'd turn a corner. Maybe the antibiotics had finally done their trick and he'd kick this NEC infection.

My brother texted to say he was on the plane to my state.

About an hour and a half later I got another call.  They had done imaging of his abdomen. They now knew why he was more comfortable. His distended belly -- his inflamed bowels -- had ruptured. They'd become paper-thin and died. He would soon get much sicker if they didn't do something. We didn't know how much had died. But he now had a surgery in his future -- that day, as soon as they could fit him in.

Ella's bus picked her up. Mimi went to day care. Carl's plane touched down. As he waited at the curb for our car, he got a text from his wife. "I'll be praying for you and all you'll be dealing with today" she'd said. He didn't know what she was talking about. When he got on the plane, J was sick, but things were looking better. He knew from that text that while he was in the air, something had gotten worse.

We got to the hospital around 9. Carl took his smart phone and kept our family abrest of what was happening. Steve and I attended to our son and asked doctors questions.

He looked very sick.

Only a day or two before Jonathan's aunt, Carl's sister, had given Jonathan a fist-bump for Carl.  Now Carl was here, traveled unexpectedly all this way on a plane to meet his nephew, and he wasn't going to get to touch him. Too sick. Things had turned. Even we were nervous to touch him too much.


By 10:00 am he was ready for surgery, the transport crib was waiting in a corner, and all we needed was a word from the surgeon. Carl put his hand on my shoulder, I put my hand on Jonathan's head, Steve put his hand in Jonathan's hand from the other side of the isolette. We prayed. About 15 minutes later, Jonathan was wheeled away.

I knew. This might be a deal breaker. We might have to decide to take him off life support.

If surgery was over and they had to remove too much of his bowel, he wouldn't be able to live. TPN -- the IV nutrition they give preemies -- damages the liver. It isn't a life-long solution. A baby's gotta be able to digest eventually.  We didn't know what "too much" was, just that it was a possibility.

And then there was recovery. The nephrologist (kidney doctor) had come by before the surgery.  He reminded us again that kidney dialysis wasn't an option. But it was clear that since the weekend, Jonathan had been retaining water. His kidneys weren't functioning right. After surgery things might get worse.  Already he had over one pound of water being retained in the tissues on his only two pound frame.  He'd gotten over one kilo, then over three pounds. A few weeks back I would have thought we'd be rejoicing over that. But instead I just worried. I wanted him to lose the weight -- gain it back as fat, not water retention.

If you've ever had edema, swelling of the hands or feet, you know how uncomfortable it is. That's what Jonathan had. Only it was over his full body. His ears poked permanently to the side, cartilage unable to move unless you put him on his other ear for a time and gravity did its work. His eyes could barely open as they too were swollen.

They have these cushion beds in the NICU called z-flow beds or cushions.  If you've ever had a memory foam pillow, they're a lot like that. Jonathan had been on one for the full time he'd been in the NICU. Now his head felt like one. That's right, the skin this side of his skull was retaining fluid so badly that when I lifted his head, my fingers sunk into the skin like a memory foam pillow.

I didn't blame him for wanting to give up. But I also didn't want him to give up.

And then there was the NEC itself. I asked, we asked, the doctors and nurses about outcomes. They said for some kids, having the infected bowel removed was all they needed, and we'd start to see dramatic improvement within two or three days.  With other kids, the surgery would be one more complicating factor, one stressor too many on their tiny frames.

There's a spot in my nose that curls up at the thought of something unpleasant. It isn't quite nausea, but it's similar. It's something like nausea and the start of a cry that won't ever quite come.

That's how I felt most of the morning.

I was grateful that Carl was there. We needed prayer. So badly we needed prayer. But I didn't have the energy to update anyone, and I didn't want to answer my family's questions, I wanted to be with Jonathan and Steve. So Carl answered questions for us.

Then there came the awkward point. Jonathan was in surgery. We had two or so hours to wait. The surgery had been explained to us and so I knew what it involved. I won't explain it to you, but suffice to say, it would take a lot of care and time. When surgery was done, we'd want to be in his room. I'd want to be in his room as long as I could. Like in the previous few days, I wouldn't want to leave unless I knew he was going to be all right.

But it was lunch time.  But I had that tickle in my nose that made food seem unappealing. But I was nursing (well, sort of . I was pumping at least) so I knew that if I didn't have something to eat, I'd turn into a cranky beast.

No question. Now was the time. 11 or so in the morning. Time to get lunch.  Even though he was in surgery. Even though my heart was in my stomach. There was nothing we could do in the waiting room but pray, and we could do that in the cafeteria, too.  Besides, Carl was there, and he'd want something to eat.

So we walked the bridge to the food court.  Three tables over was a very very tall man. The sort of man you can't miss in a crowd. Especially if you knew him. And we knew him. "Aaron!" I shouted.  Aaron was one of the chaplains at our college. With him was Dave, one of my co-workers.

How did my chaplain and friend show up at the food court in our darkest hour?

It didn't really matter. We needed prayer, we were granted a chaplain.



We spent the next few minutes praying. Or rather, Aaron gave words to us, he prayed for us. So did Carl. I can be a wordsmith when I'm having a pleasant warm day at home, sun streaming through the windows and cool breeze fluttering the shades, but when I'm trying to choke down a burrito while my son is in surgery, possibly about to be lost to us for good -- I have no words. Funny, huh?  My whole system reverts to groans. Deep, loud screams from my soul pulse out my temple, followed and proceeded by deeper vibrating groans. I don't really scream.  But my soul does. And in those screams, there is no room for words. Tears, yes. Or (as was the case here) blind staring, but not words.

So Carl and Aaron gave us words. I think they even laid hands on us. I'm not sure why, it wasn't our surgery. But I hoped those hands would somehow grant God's hand to guide the surgeon, keep him alert. And at the same time, hold my son. Keep him alive.

-----

By 1:00 the surgery was over. The receptionist called us in to a private side room. It was one of the most tense moments, sitting there, waiting for the surgeon to come in.  Bless his heart, after spending two hours with our son's ... well, anyway... after spending two hours doing his job, he came in and the first thing he gave us nervous parents was a sincere (but not too excited) smile and a firm hand shake. That's all we needed, and we were ready to listen. Our son wasn't dead or near death, or he wouldn't be smiling.

About 10% of his bowel, including some of his large intestine, had to be removed. The location of the ruptures was good -- far down stream. That meant that as he healed, before the two parts of the bowel (small and large intestines) were hooked back together, he'd be able to digest some of my milk. The more of my milk he absorbed, the less TPN he would need, and the better off his liver would be.

"Does that mean his appendix has been removed?" I asked, remembering that in my anatomy class we learned that appendix was at the intersection of the small and large intestines.

The surgeon looked a little surprised. "Well, yes, I guess it does."

"Just needed to know," I said, "In case anyone ever worries that he might have appendicitis when he's older."

"One less thing to worry about I guess." Steve said.

Five months later, I reminded Steve that Jonathan's appendix was gone. He said he'd never realized that. [NOTE to any medical professionals reading this: we really really probably won't remember 80% of what you tell us when we're shocked parents in a stressful situation. And the 20% we do remember, we'll probably mis-remember. So keep telling us, patiently, over and over again. We want to know, we just... don't really have the brain cells for it now.]

But back to the TPN.  He'd be dependent on IV nutrition for the next few weeks, until we could start feeds. Probably for the next few months, until his bowels healed completely and the two segments (thankfully they only had to cut out one part) could be stitched back together.  So he needed a more permanent way to get IV nutrition.

That was the next part of the consult. "We're going to try to place a central line while he's still in surgery" the surgeon said. A central line is like a more permanent IV port. It's stitched in, and requires two incisions.

He shook our hands and went back to work with our son. Now that he'd taken out the dead bowel, he would put in place something to sustain him while he healed.

We went back to the waiting room, glad to give some good news to Carl and (in turn) the rest of the world.  At only 10% of his bowel lost (or 17-18 cm total), he could still grow. He might even grow normally.  And even if he didn't?  We were all tall. He could handle being just a bit shorter.  He just had to make it a few more days so his body could heal.

The surgeon came back not too much later. "We tried," he said, "but Jonathan has too much edema. We can't get past all that third spacing [water retention] to place the line. We couldn't get a clear image on the chest, so we didn't even try. We tried the leg, but it didn't work."

When I got back to the room, I couldn't find the supposed incisions on his leg.  A year later, they're very visible. Scars grow with children. I learned that. And what was once two barely noticeable scars less than an inch apart are now two noticeable scars two or three inches apart. But he survived.

Although we still had the problem of no permanent vein access.  We hoped his unicorn IV on his head would last.

Steve stayed with Jonathan. I dropped my brother off at the airport and picked up the girls from school and went home to make dinner.

We'd made it another day.

Day 40 & 41 - NEC. The scariest acronym I've ever heard.

This is the hardest post I've had to write for some time. I've been avoiding it a little bit. But it's important to remember, even the hard days.

A year ago I noticed something was wrong. The heart surgery had worked, it had helped fix his kidneys, but it hadn't come without a cost. He had been on heavy pain killers. They had finally weaned him off all that and he was back up to half feeds.

Except that, all of a sudden, he stopped digesting well.  Normally he'd been a starving baby.  They do this thing in NICUs, it's called "checking for residuals."  Babies as small as Jonathan, too small to eat by themselves, are fed through a tube. In order to see how they're digesting or processing food, the nurses put a syringe at the tip of the tube and pull back, to see how much is left in the stomach.

J on the 25th, before fluid retention.

Usually Jonathan had nothing left in his stomach. In fact, usually he got ansy half an hour or so before feeding time, a sign (I thought) that he was hungry.  He still couldn't cry, not outright. He had a breathing tube that went through his vocal chords. If he was in extreme pain he'd have silent wails, but must of the time when he was hungry or upset, he'd just be ansy -- try to get comfy without tears.

J three days later, retaining over 1 lb of fluid on a normally 2 lb frame.

But lately, out of no where, he'd had a nearly full tummy each time they checked. A nearly full tummy and dark circles under his eyes. Dark circles are my family's tell tail sign of illness and pain.  I figured it was because we had taken him off the pain meds, he was feeling the heart surgery.

That was a year ago today. Something was wrong, but they were keeping on. "The doctors definitely know about him, I'm not sure what they can do for him," the nurse said when I asked her about his sudden decline in appetite and dark circles.

I figured it was from the surgery, that he was still touchy and a bit lethargic from all that. He had a nurse working with him that knew him well. She said she wished he was a bit more fiesty. His blood gasses were bad. He'd stopped peeing over night. His arms and legs were so taught from all the water his body was retaining.

(Because a happy picture is needed.)
This is J's first outfit, first time with clothes, just a day before
severe edema and NEC hit.

I waved at his primary doctor, back from vacation finally after a month away. His doctor nodded our direction but was with another patient. He didn't drop in, but worked on Jonathan's chart from the other side of the door.

The nurse spent a lot of time with Jonathan that day, trying to get him comfy.  Every turn, though, every prod or poke would send his vital signs off.  Once three nurses came in to see what was going on.  All she'd done was re-positioned him. It was enough to set the ward in high-alert.

A few hours later, they started him on antibiotics for NEC, or necrotizing enterocolitis.  If you have brushed up on your Greek lately, you know necros means death. And then to throw some Latin in there, Enterocolitis is what was dying (intestines) and their current state (itis -- inflamed).

NEC is a bacterial infection. That was the somewhat good news. It means he could get antibiotics.

NEC kills premature infants. That was the bad news. If he had it - as it seemed they thought he did - it was very, very bad. It takes them fast, sometimes faster than the antibiotics can help.

But we'll leave it at that.  He was sick, very sick.

I looked in on him. He was awake, but I hadn't known it because there'd been no motion from him. He was staring straight up at the ceiling of his isolette. Not a muscle in his body moved. His eyes were transfixed.

I put my hand in his isolette, put my pinky up to his hand. He grabbed it.He continued to stare at the ceiling, his eyes still fixed on a distant spot. He wanted to give up. I could tell it. He wanted to give up.

People talk about seeing the light when they die. Maybe he was seeing a piece of that light on the horizon. Maybe that's why he stared. I hoped he knew he was surrounded and loved. I felt surrounded and loved from all the prayers of all the people who started praying as soon as they heard his diagnosis. I hoped he felt it, too.  We were loved. He was loved. My pinky was maybe that reminder to him.

I shifted my weight. This caused my hand to move, just a little bit, my pinky to slip. His hand went into a white knuckle. A tiny white knuckle, holding on for all it was worth. Don't leave me momma.

"I'm here, Jonathan." I said.

He broke his gaze and glanced my way as if to say with his extreme lethargy, "This is really hard, mom. Fighting is hard."

"Don't give up, Jonathan." I said, "This isn't life. This is the NICU. Life is better than this. Life isn't wires and machines and pokes, it's better than that. It's so good. It's sunshine, snuggles, rainy days, sisters, chalk and bubbles, books, breezes. You have to make it. You have to keep fighting. Life is better than this. I want you to see it."

I stayed with him late into the evening. The nurse brought me sheets and told me I could stay the night if I needed. I spent as much time as I could at his bedside, letting him hold my hand whenever he was awake. He stabilized around 7 or 8 pm. I almost stayed the night, but he looked good enough that I thought it'd be safe going home. It looked like the antibiotics were finally starting to take effect. I left close to midnight. The hospital was near our home. He had one nurse on his care that night, so he would be watched over so very carefully.

I told the nurse to call me if ANYTHING, anything, looked like it was going the wrong direction. I wanted to be with him. I didn't want him to be alone, not if he... But anyway, they told me he was stable and promised they would call. I left.

I called when I woke up to pump. He was still okay.

The next morning I went in. I spent the day with him. Mimi was back in day care and Ella was in school. I was grateful. Steve came with me, and my sister drove up from a state away. It was so hard. So hard to see him there.

He was off all feeding now. But it wasn't like he wanted to eat. Nurses at the hospital were too professional to curse, but I think one or two wanted to as they tried to get a new IV in him.
"Why didn't he have a PICC line in any more?" they asked.
"It had gone bad," I said.
"Why didn't they put a new one in before he went in for his PDA ligation (heart surgery)?"
"Because he was up to full feeds, then," I said, "before surgery. He was up to full feeds. We didn't think he'd need a PICC line anymore past one or two days out from surgery."

He was running out of veins. And he was swollen. And tiny.  It was a nightmare to find a vein to prick.  Each nurse referred to a nurse above her with more experience and on the fifth nurse we finally got a poke that worked. She had to put the IV into a vein just this side of his skull, right on his hair line above his brow.We hoped the IV would hold. For a while at least. They normally go bad after only a few days.

I went out while they poked. We grabbed lunch. When we came back, I stood at the side of his bed. I was so glad I could now stand for long periods of time without my belly scar aching. My sister came in to town. My oldest brother, Carl, texted her. "Give him a fist bump for me," he said. He wished he could be there for us.

She showed me the text.

"Go ahead," I said.
"Really?" She asked.
"Yes, just... scrub your hands again and use hand sanitizer."

The fist bump on J. Notice the unicorn IV

I wanted my family to know this guy.  A small touch from his aunt's knuckle wouldn't hurt. She should know him, should be able to say she touched him. It reminded me of the first day I met him, when I was so scared, but put my finger in and barely touched his little hand, afraid I'd contaminate his pure environment, but sure that I needed to have touched him while he was able to feel.

She fist bumped, her first knuckle as big as his entire fist. I took a picture. Then she quickly closed up the access slot on his bed.

Steve and my sister went home that night to hang out with the girls.

Again I didn't want to leave.  I asked the nurse "how will we know?  When will we know if he's going to make it or not?"  She told me she couldn't be sure, but in the cases she'd seen, that it often presented itself in the first 24 hours. He'd made it through that part. That was a good sign.

My sister went home.  A few hours later I got a call from Carl. His buddy was a pilot. Had a buddy pass that he wanted to give to Carl. He'd gotten the day off work. He was coming in to see us the next day, just for the day.  He'd be there in the morning.  We arranged for us all to go to the hospital together that next day.

Now we were over a day past the diagnosis. He still looked so very sick, but he was stable. Steve and the girls picked me up from the hospital.

"Is Jonathan going to die?" Ella asked from the back seat.
"I hope not." I said.

And then I realized that wasn't an answer. Maybe my five year old deserved an honest answer. I'd want an honest answer. But I didn't want her to always be scared, either.

"He might," I said, "He's really sick right now. We'll know within the week. If he's okay in a week, he'll be okay."
She nodded her head.

I hoped I was right.


==========================

I can't end this post there. I have to fast-forward, just in case you dropped in on this blog from some internet search or something. Two nights ago, August 2013, Jonathan was sleeping soundly. I picked him out of his crib at our house. Mean, I know, but I had to hold him. I had just realized the anniversary we were approaching. I remembered my little swollen baby hooked up to wires as I thought about my healthy one year old, and I had to look in on him. Once I had, I had to hold him. "Was it worth it?" I whispered as I snuggled him. "I told you life got better, wasn't I right?"

He can't yet talk, so it's no surprise he didn't answer. He probably wouldn't have even if he could.  He buried his head in my shoulder and tried to go back to sleep. I put him down with a kiss.

Yesterday he found a friend (in his sister's inherited doll).

Yesterday he was in one of the giggliest moods I've ever seen.  He thought the whole world was a fascinating joke. He even tried to stand on his own (leaning on something) for a few seconds. He looked at me with such pride in his eyes.  "Did you see, mom? Did you see what I just did?"  And then he laughed.

I had my answer. Yes, yes it was worth it.

In memory of Daniel.

When I was a little girl, I went to the cemetery to do some rubbings.  I don't remember now if it was a school project, or an idea I'd gotten from girl scouts or what, but I went one lovely spring break on my bike with a graphite pencil and a piece of paper to look for lovely things to capture. History. Or maybe just my name.

Once I got over the eery entrance doors, I had a rather lovely time. I found the cemetery calm. I knew it was supposed to be spooky, but on a sunny day it was too pretty for all that.

And then I found something I didn't understand.

A grave site where the birth day and the death day were too close together. Less than two years.

It was the first time I'd really realized that babies die. Here was proof.

Old men and women with wrinkled hands and paper thin skin, they die. Like my grandpa. He'd gotten really sick four years earlier and died. I could still smell his snuff when we went to the funeral home. My dad was weeping. I tried to be sad and have tears in my eyes, because I knew I should, but I was only six.  I'd had fun and loved my grandpa, but he was gone, and I wasn't sure what that meant. I couldn't get the tears up, so instead I went to the basement where the reception punch had yet to be set out, and me and my cousins snacked on funeral parlor mints.

That was my knowledge of death. But this was the gravestone of a baby.  I put my graphite pencil and paper aside. I imagined the casket. So small. I imagined the parents. Parents shouldn't have to bury their kids. I knew that, even then. I cried.  I couldn't help it. This baby - this little baby - had never ridden a bike. Had never gone to kindergarten with a new set of crayons. I wondered what had happened.

After my grandpa's death, my grandma would tend to his gravestone religiously. She'd bring flowers and water them, pinching off the dead bits to make the plant look alive and loved.

I didn't understand it when I was a kid. Grandpa didn't care if there were flowers. He was dead. But I still went with her sometimes to say hi to my granddad.

A few weeks ago I was back in my hometown. I didn't go to the cemetery where the little baby who died too young was buried. But I did run past my grandparents' last place of resting. I took a run the long way around to get a good jog through the cemetery, and it took me longer than I thought to find my family's bench and my grandfather's headstone. I was glad to find it, as by that point I needed a bit of a rest from the run. There were no flowers near his grave. Grandma sleeps peacefully next to him now.

I sat at her stone and thought about her and grandpa. I thought about her care for his stone as I cleared grass from the edges so their birth and death dates showed properly. And I thought about the little baby who died too soon.

And then I understood why grandma cared so much for grandpa's headstone.

It was a reminder. This person lived. This person was cared for and loved. This person had so so very much meaning, and that meaning goes on today.

I did not lose a child. I cannot pretend to know that pain. But the possibility stared us in the face, and that has become a new part of me. I have a new empathy for those that have, at any age.

I remember last year -- just wanting our son to live long enough to have been alive. I know it sounds strange, but I needed him to have life, some kind of life. I needed my baby to have existed. So that there could be a stone to go to, so that there was a place to remember.

That way, even if I was gone and my memories of my child had faded, maybe someday, someone biking or walking through the cemetery would see his final resting place and remember. He was alive. He was loved.

I weep with a friend who lost her son before he had a chance to go with brand new crayons to kindergarten.

I weep because her son would be a junior in college now.

I don't understand. But now more than a few years ago, I get it.

I don't get why my son lived. God's grace, I say. But why didn't that same grace extend to others? I don't know. I can't begin to know.

But I will weep with you. Even though I never experienced that pain, I looked at that path straight on, afraid it would be the only one we could walk down. We didn't walk down it, but I still walk it next to you. On the 21st anniversary of the birth of your son, I cry with you, Alice. Because I know that it's important.  Remembering. It's so important. The grieving time doesn't ever really end, does it?  If I could, I'd walk with you to his grave where his birth and death dates are too close together. I'd walk with you and clear the grass from the stone. I'd put a flower next to the stone, too. I didn't know him. I'll never know him. And for that I'm sorry, too.

In memory of Daniel.  You were very loved.

Of how little girls process the life and possible death of their preemie brother

God is with us and he cares for us in difficult situations. I learned that last year. And that didn't just apply to Jonathan, or to me and Steve, it applied to our whole family.

He prepared the way to nurture our girls' souls for the difficult year to come. For the volunteers that made this possible, I give a hearty "thank you."

The day after I went in to labor the second time, the day before Jonathan came into the world, the girls went to vacation Bible school (VBS) at a nearby church (not our church).  We'd signed them up for it months before.

Then, later in August when Jonathan got really sick, our friends invited us to join (a day late) their church's evening VBS.  It allowed Steve and me to care for Jonathan together at a time when he really needed it.

But it was at that first VBS, the one that happened at the same time as little J came into the world four months early, that God placed in my girls the words they needed to carry through.

For the next several months they'd sing this song in the back seat. Ella, my rational thinker for whom all must make sense (and also my most sensitive child to when things didn't make sense) blared this at the top of her lungs as we drove to the hospital and back.  I found myself listening to the CD on my way into the hospital, even when the girls weren't around.

Here were the lyrics that brought a lump to my throat:

My mind is spinning.
I’m all confused.
I’m feeling sad and afraid
And kind of angry, too.
How can I be strong
When everything is going wrong?
God, give me strength,
And help me to find my way.

I've gotta think, think, think
Think about the goodness of you,
My God.
Because I know, know know
No matter how I feel I've gotta trust
In you.

['ll trust in you. Right now No matter how I feel Right now I'll trust in you.]



What this did for my Ella and (to a lesser extent) Mimi (and me) is gave honest voice to our situation.
I loved it for what it said as well as what it didn't.

It didn't say that God would make everything alright. It didn't give false hope for our bleak situation.
It DID give voice to Ella and Mimi's confusion about the situation. It gave them a place to honestly say that they were angry. Why didn't their baby brother listen to their pleas to my belly? "No no no, baby, don't come out now, that's a no no!" (Ella would even add, "If you come out, you're going to die." which always made me wish she weren't quite so astute and frank.)

And it said God was good.  And we could trust him. In everything, even when it was bad, we could trust him.

These were the lessons he was teaching me. And I, as much as my girls, needed this song that told me I could be angry, I could be scared and sad.  And in all that, I could also lean on Christ.

Thanks, folks who wrote the Sky VBS curriculum.

You touched my girls' hearts in a way that was much needed.

Day 36 & 37: PDA ligation (closed heart surgery) and a new nurse.

Written August 22, 2012 10:57am

J on the day of his PDA (heart) surgery

J's surgery is over and went well.  The next two days will be rough for him, so prayers for his bounce-back post-surgery are appreciated.

We were grateful to be able to share the morning with a family whose child underwent the same surgery just an hour or so before J (with the same doctor). Sharing this sad/scary/hopeful/breath-taking/tummy-knotting morning with this family was very meaningful.  We were able to talk together, pray together, and was grateful to know that I was not the only one responding the way I did to all that my little one was experiencing. 

I'll be staying in the hospital for the afternoon to get regular updates on J's care (he won't know I'm here, but I can't go home with so much going on with him).  Steve will be doing work from home as Kimia naps.

Thank you for all your prayers.

Written August 23, 2012 7:45am

J had a rough night last night. At 10 they gave him a chest tube for a collapsed lung. After that he wasn't doing well and the tube wasn't releasing air the way it was supposed to, so they took out the tube and were able to get him stable again, but they had to fight through the evening to get him there.

They are analyzing a new set of xrays right now to look at that left lung. We were warned that this might happen post surgery but were hoping it would not happen.

This morning neither Steve nor I can get in to see him, and it hurts this heart sooooo much. The nurse from yesterday is watching him again today, and yesterday was her first day working with him. I have a difficult time communicating with her. All this makes this distance from J even harder to swallow.

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(Aug 22, 2013) The care page post above got people praying. Lots of people praying again. Lots of people who steadied themselves for the next update as it came, nervous about what it might contain.

I was trying to figure out why we couldn't see him the morning of a year ago, right after surgery and all that. How hard. How could he not be there? How could I not be there? Then I remembered. Steve was at the fall conference for work. The same conference that we both attended this morning. J even crashed the outdoor staff lunch today afterward. Both our girls are in school, so Steve brought him along in a stroller.  No one seemed to mind. Oh, the difference a year can make.

A year ago I was still on medical leave for another week, and while Ella was in school, Mimi needed me at home to watch her. There was no way she could go into the hospital with me when Jonathan was so sick. Steve was able to see J as soon as his work obligations were over, so it wasn't like he went all day without being there. Just the morning. But being stuck at home and feeling helpless was hard.  It was worse because Jonathan had been paired with a nurse that I not only didn't understand, but that intimidated me.

The nurse had spoken harshly with me the night before - just a few hours after J's surgery. I'd walked into Jonathan's area with another NICU mom who was my friend. The nurse thought I was bringing in an outside visitor and outside visitors were strictly prohibited during shift changes. We'd both been in the NICU all day and had just been in a break room eating dinner.  We'd lost track of time. Concern for my son was more important to me than the time of the day. I wasn't even aware that it WAS shift change time. Her sharp bark "you're not allowed in here now" made me scared. Was something wrong with my son?  Had things turned for the worse? I wanted to ask more questions, but with my friend at hand, I mumbled something about how maybe we ought to go to the hallway and we sharply retreated.  For the next three minutes we stood in the hallway and I worried for Jonathan. Then I caught sight of a nearby clock and realized what we had done and what the nurse had thought. 

And now that same nurse was paired with Jonathan for a second day.  I wasn't sure she knew Jonathan well enough to read him well, and I felt so intimidated by her that I didn't feel I could question her or ask any real questions about him over the phone. She'd get impatient with me or think me stupid or overreactive. I was sure of it. I could see it all in the sharp look she'd given me the night before. That was hard.  Why did she have to watch him on this, his sickest of days?

I figured out later she'd been paired with him because she had more experience, because she was better at working with the sickest of kids. But no one explained that to me at the time, so all I knew was that the nurses who most cared for him, the ones I was most comfortable with, they were no longer working with him.  And he was declining. I was enough scared of the nurse that even though Steve offered to watch Mimi so I could go in for a time, I sent Steve in to be with Jonathan instead. Steve didn't mind the nurse. And I didn't mind watching Mimi so much once I knew that Steve was in the hospital, that ONE of us was with the little guy.

This is what he wrote that afternoon:

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Written August 23, 2012 2:42pm by Steve

Here are some things I heard people say in Jonathan's room today, with some translation.  They should give you some idea of how he is doing.

"With so many different treatment changes, it is hard to nail down cause and effect."  Translation: something is working, it might be the new gas we have him breathing, it might be the medicine, it might be the tube that is no longer in his chest, we are not sure what it was, but we are not arguing.

"That is a fantastic gas."  Translation: good breathing Jonathan!

"That is definitely a weanable gas." Translation: they got to turn one of the knobs on the noisy machine so that it is giving Jonathan less pressure - movement in the right direction.

"He is still pretty touchy."  Translation: if you touch him, he won't breathe very well.  Don't touch him much.  He is probably still pretty uncomfortable from the surgery.

"Have you gotten a chance to scrub in yet?"  Translation: Dad forgot to take of his wedding band, and the nurse didn't like it.

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P.S. The difficult nurse?  It took another two to three months, as we didn't have her very often, but she grew on me.  By the end I understood her to be sternly efficient and it was those strengths -- the need to abide by rules and have the child's safety as her primary concern -- those were the things that made her a good nurse.  She was one of a very few who were there when we visited on Jonathan's first birthday, and while she still had a bit of a crusty exterior, she was pleasant and warm underneath it all. She came out and chatted with us, and even gave Jonathan a bit of a smile.  He was cranky and didn't smile back. Not because he's a cranky kid, but because he was having a bit of a hard day. I guess we all have hard days, don't we?

Day 35: Preparing for heart surgery. (Plus pictures from one year later)

A YEAR AGO:

Written August 21, 2012 1:22pm

Jonathan's heart surgery is scheduled for tomorrow morning at 9:30 am. The doctors decided after much discussion this morning that the benefits to the surgery to close the PDA outweigh the risks.

Part of the reason for lung decline over the past few days (in addition to intubation) could be due to the extra fluids he's been given to improve kidney function. The doctor said that typically they like to keep these intubated preemies a little on the "dry" side in hopes that it will help keep their lungs dry.  That didn't work for him as he needed MORE fluid to get his kidneys functioning properly.  Thus, it is not entirely surprising that with improved kidney function he also has extra fluid in his lungs.  They do not suspect pneumonia as the area that is congested moves from one chest scan to the next.

Because of his lower lung function (and in anticipation of even lower lung function as he recovers from surgery), Jonathan is being moved from the conventional vent to the oscillating vent.  In terms of ventilation this is considered a step backwards.  That said, it seems to be what he needs most now.  This new vent will give him quicker breaths of air.  Since he is currently on the highest pressure setting for the conventional vent and even so his blood gasses are not improving, it is clear that extra help from the more invasive vent is necessary.  We hope that with the oscillating vent he will be able to maintain good blood gasses without the same high pressure.

Since he is on the highest pressure possible from the conventional vent, he has no place to go if his breathing starts to decline in or after the operation.  Since initially post-surgery things are harder on the infant, and cardiovascular function gets a bit worse before it gets better, we have every reason to believe that he WILL need more help breathing in the next 48 hours.  Thus, it is good to get him on the vent now.  We hope he responds well to it and that he's in good shape for surgery tomorrow.

We were hoping he'd hit 1 kilo last night, but he still sits at a weight of 975 grams (or 2 lbs, 2 oz).  Perhaps we'll have a 1 kilo baby by tonight?

On a lighter note, he was introduced to a pacifier on Sunday and he LOVES it.  I have NO idea how he manages to get that thing in his mouth, what with the feeding and breathing tube already in his mouth, but he finds a way. Yes, it's a standard sized pacifier.  It's the kind that easily comes OUT of the mouth (the green kind you see in the hospital often) but that just gives me an excuse to help him hold it in.  Since holding him won't be an option for a while (until he's off the oscillating vent), I'm grateful for this one small thing I can do to help calm him.

Thanks for your thoughts and prayers, thank you for walking with us in this, for mourning with our mourning and rejoicing with our rejoicing. The ups have so far outnumbered the downs, and we feel blessed.

---------------------------------------------

TODAY (2013)

At physical therapy J was not interested in practicing his sitting. We think his belly was hurting him. Every time we'd try to sit him down, he'd refuse to bend at the hips. We thus spent a lot of time working on bringing hands to mid-line, rolling, and grabbing feet. Then, since our focus at PT is getting him to be mobile, we made a bit of lemonade out of his stubborn lemons. and J got to WALK. BY HIMSELF!  Okay, so with a fancy walker that was set to the absolutely shortest setting (because how many four month old sized babies walk?) The walker barely fit him, he seemed to think that the handle bars were his goal, and kept staring at them and taking steps to bring himself closer to the bars (which were about 1/2 a centimeter too far away for him to reach) but then when he figured out what he was doing, he had a blast. Since (while physically small) he's cognitively somewhere around a year, THIS is just the sort of thing he's been dying to do.

ZOOOM!  Ready for take off!

Day 33 - Failed kangaroo care

A year ago today I went to church. My new pastor's wife asked me how I was doing. "Great!" I exclaimed, "I've just entered my third trimester!" I did a little twist to the side to show off my slacks and shirt, nearly back to my pre-pregnancy size.

For a moment she looked a little shocked at my flippant statement. Then she laughed. And then we both laughed. An awkward sort of laugh.  It lasted too long and ended in tears, and the whole time we weren't either of us sure if we really should be laughing. But there we were, thick in the reality of it all. Too exhausted and too worn, and yearning for an escape - I couldn't relive the hurt any more, so I chose a point of absurdity to focus on instead.

I was grateful for her friendship, that she understood my need to laugh. It's the sort of thing one would never say to someone who had delivered early. "Look! You're in your third trimester, you look great!" -- Oh, daggers would have shot out of my eyes at the insensitivity of the statement. But coming from me, somehow it was okay. It was an escape, a plea -- please let there be something else to talk about but the pain of the past month. It's too hard.

The pastor asked Steve how things were going. Steve shared our concerns about Jonathan's heart and lungs and bowels and kidneys (and liver, just to throw another organ in there).  "I am looking forward to the day when all we have to worry about is whether or not he'll be blind," Steve said. It sounded absurd enough that I think the pastor chuckled a bit. Steve spoke for both of us. The day that retinopothy of prematurity was our only concern - that was the day we pushed on toward.

After church I went to the hospital. Steve went home with the girls. It seems that they, like me and perhaps Steve, had caught the sillies and desired the bizarre. I came home to find these pictures on Steve's phone:

 

At the hospital I tried to do kangaroo care (otherwise called "skin to skin care" with Jonathan. Kangaroo care is skin-on-skin cuddling that helps a baby to relax and has been proven to lead to better outcomes for these little neonatal ICU patients. They breath better, they relax better, they grow better. Since Jonathan's little body was all in all in decline (retaining water, poor kidney function, heart murmur growing, etc.) I thought some time being held might do him some good.  I planned to spend the rest of the day with him.

I put a little hat on him to keep him warm. The NICU nurse said that my body heat alone should keep him warm, and that she'd prefer I not put the hat on him.  So I took the hat off and we bundled him with blankets over me instead. The first twenty minutes were great. I thought he felt a little cold, so the NICU nurse got another blanket. Otherwise things were fine. And then they weren't.  Here is what I wrote:

-------------------------

After hearing bad news about his kidneys and BM output, I was anxious to get in to see him.  When I got there he was having far more bradycardia (slow heartbeat) events than usual.  Normally his heart rate will drop once or twice a day for a short period of time. In a five minute span I saw it drop twice.  Also, his blood oxygen levels were all over the map, saturating low one minute and high the next. I thought that perhaps holding him would help him feel better and help regulate some of his numbers that were off. So we change him, suctioned him, and got him ready for comfy mommy time.

Things went well for the first 20 minutes, and then he bradied (had a bradycardia event) -- and bradied again.  His oxygen went dangerously low.  His skin became grey and he became super still in my arms. The nurse rushed in, two other nurses rushed in. They described him as "dusky" in color.  His heart rate had dropped from 130 bpm (beats per minute) to 40 bpm and his blood oxygen levels were dangerously low.  They re-positioned his vent tube, suctioned him several times, and gave him manual breaths of air through a small hand pump that is always connected to his breathing tubes.  His lowered heart rate lasted for around 5 minutes.  He stayed on me for an additional 45 minutes to stabilize before being put back in his isolette.  (The last thing we needed was another big change to throw him off.)

When he was returned to his isolette, his body temperature was VERY low (about 95.7 degrees F or 35.4 degrees C).  He normally has a temperature of 37 degrees C / 98.6 degrees F. We put a hat on him and a blanket on him and turned his isolette temperature up to 38 Celsius to try to warm things up quickly.  It still took him a while to bounce back. Usually during skin-to-skin time he gets his warmth from me and is able to maintain his own body temperature, so this is an unusual occurrence.

That night they changed some things with his vent (For the two medical professionals that read this and might know what this means: they changed it to give him a constant pressure rather than asking him to maintain a certain tidal volume). After this change was made, he seemed MUCH happier. His blood gasses last night were a little high, but I'm not too surprised by that.

-----------------------------------

Shortly after I had my premature baby, I had lots and lots of friends tell me that they hoped I was doing kangaroo care with him, that they hoped I was holding him a few times a day, for his development and well-being.

These friends had had preemie babies or had known people who had preemie babies.  This is what they knew about preemies. Hold them close to your skin, close to your heart. That will help them thrive.

But my baby was too premature, even for that. For the first three weeks, I wasn't allowed to hold him. Holding him would be too stressful on his underdeveloped nervous system, like nails on a chalk board. He wasn't ready for touch yet. He wasn't supposed to be touched yet.

We'd finally gotten passed that stage, finally gotten to the point where my touch was supposed to be good, was supposed to be what helped keep him going.

And then this happened.

It was the closest to the grave I'd seen him since the day he was born.

And it happened while I had him nestled close to my heart.

Maybe I'd readjusted myself at a wrong time and interfered with his breathing tube. Maybe I wasn't wearing enough blankets for him. Maybe I wasn't warm enough. My husband always says he's the cold blooded one, being an economist and all. I guess I always assumed I was thus the warm blooded one in the family.

Five minutes. Five minutes was too long to go with a heart that didn't work well and air that didn't circulate well. Dusky skin. Grey skin was scary.

He'd survived, but the experience left me a bit shaken.  Not in the moment, mind you. At the time, I followed protocol. I called the nurse, I told her he was cold. When he kept getting colder, I called her again. I pointed out the bradies (they had been keeping an eye on them too), I held still while they fussed. I didn't cry out, I didn't do anything but stay calm. Because that's what he needed. He need me to be calm and warm.

But afterward, afterward I sat in a chair a few feet from his crib and folded my legs under me and put my head in my hand. My baby. My poor baby. My heart ached.

Needless to say, I wouldn't be holding my son for a while. He was deemed too unstable. I was back to being able only to watch from the other side of his plastic box. I could change his diaper, I could put my hand on his head, and I could hold him up for his nightly sheet change. But that was it.

9:00 pm  cares were ridiculously late for my schedule.  They often started a bit late, because the neighboring boy's cares took a long time, and then they took at least a half an hour to complete. We weighed, measured, charted, changed, and tucked Jonathan in. I discussed his numbers with the nurses and asked all my medical questions. Sometimes we even laughed together or shared stories about our other kids or life outside the NICU. It was a way to build trust. As result, though, I didn't leave the hospital until 10:15 or 10:30 most nights, and didn't get to bed until 11:30 or midnight. Then I pumped at 3 am and my girls woke me up at 6 am. But that wouldn't deter me.

Nine at night was the care time when they changed Jonathan's sheets. It was my only chance to do something like hold him, cupped in my hands, my hands only an inch apart holding his lower back to feet on one side and head and torso on the other. This was my moment to be mom without  harming my son. Now that I was able to drive to the hospital on my own, either Steve or I would be there. Every night. It was the only holding I'd have for a while.  And more and more, I worried that I was on borrowed time. He must know he's not alone. He must know how much he's loved.

Before I left that night I took a picture of him, happy, sucking on his pacifier. No longer grey.

A year ago - 1 month old.Today -13 months old. Taking down a day-dream soccer ball and letting my imagination play.

A year ago we celebrated Jonathan's first month of life with coconut sorbet and raspberries all around.  The girls sang him "Happy Birthday" into a video recorder, since they couldn't see him that day.

He was in the hospital, not doing that great. His kidney function was continuing to decline. He was no longer getting my milk because of this and was back on IV nutrition entirely (they call it "TPN").  He was spending his lunaversary getting tests and scans done in order to get a clearer picture of what was going on. (Lunaversary = my made-up-term for a month-anniversary, although apparently I'm not the only one to come up with this).

We were very very uncertain about whether or not he'd make it. In some ways, it felt like we were on borrowed time. Ella had been in school for a week, and I'd made arrangements for Mimi to start day care the next week. I was still on maternity leave for two more weeks, but I wanted to be able to spend as much time as possible of those two weeks with my son, at his bedside, hopefully holding him every day.  I had hoped, too, that maybe he'd graduate from the tube breathing to nasal cannula, so I could maybe try to nurse him.  Either way, I wanted to be near him. I wanted him to know me.

He was growing up. He was entering his third trimester.

=================

Today Jonathan is 13 months old. We didn't do anything special for the day, but Jonathan DID finally get the knack of feeding himself teething biscuits and allowing us to feed him baby food this week. This has been a long, hard struggle, so we do not take this for granted in the least.

By the looks of it, he'll have his G-tube (feeding tube) out by Christmas or before.

We couldn't be more thrilled.

Steve was reconstituting an amazing burrito meal from last night in the kitchen while Jonathan chomped on his teething biscuit, putting his two new teeth to work as best he could. I started chatting with Jonathan about food and life. Steve turned around and looked.

"If I could have had this picture last year," he said, "it would have made things so much easier."

If we could have known.

This is what we dreamed of, but most days, frankly, I didn't dare to dream, because the dream brought with it the sorrow.

I remember about a year ago the girls were playing in the front yard.  For a moment, a brief moment or half a moment, a three year old Jonathan was in the front yard with them. Under big maple tree, trying to kick a worn soccer ball. He missed, Mimi kicked, all the kids ran. Jonathan's legs were small, but he laughed and wasn't deterred. He hit the ball the next time, and it started to roll just a litt--

And then I broke off the dream. The cart was getting way ahead of the horse, here, and it was hurting my heart. "Stop, stop!" my heart screamed to my head. He might not live. Even if he lived, he might not walk or run or see. No. There would be no dreaming. Dreaming would mean lost dreams, broken dreams, failed expectations and hurt. There would be none of that. I needed to be a strong momma, a proud momma. If he lived, I needed to be able to glory in his accomplishments, whatever they were. I needed to not be sad from broken dreams. I would return now to just hoping and praying that he'd survive. The soccer ball was mentally shelved. Maybe someday. Not now. Now we'd take whatever came with that as it came. But there would be no dreaming. That would hurt too much.

...

I took the soccer ball down from that mental shelf when summer finally hit about two months ago. I played my daydream out in my head again. This time it didn't hurt. He'd have to be at least three in my day dream, that much was pretty clear. He wasn't even sitting yet at one year old. But I think he'll get there. He'll run, I think. He'll play, too.  And at the very least, he'll be there laughing with his sisters.