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:

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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.

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(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!

Of spiritual support on the cusp between new life and death

July 8, 2013

Prayers.

A year ago today July 8, 2012, I really began to appreciate prayer in a new way.  And over the next few months, that appreciation would only grow. It seemed that representatives from most of Christendom had me and my little baby upheld with their prayers.

My brother's in-law in Bulgaria was lighting candles in the Orthodox church.  My Catholic friends shared our story with their parish, and we were prayed for. At least one Coptic Christian had us on his prayer list.  Our old and new protestant churches were praying. We had representatives in Asia, Africa, Europe, North America and (strangely enough) an African in India all asking for updates and praying for us.

That's a little intimidating. And awesome. We coveted those prayers.

My son had made it through the weekend.  I was still pregnant.  Things had not "presented themselves" as the doctor had thought they might. Indeed, since things had been so quiet, a week ago today I was given wheelchair privileges.

A few Sunday afternoons a month, we would go to eat with friends of ours after church. I hadn't been able to see them for a few weeks, so, a year ago today, with my new privileges, I went downstairs to the food court and they joined me with all our kids.  The lunch didn't last more than half an hour.  I had a contraction and so I couldn't linger, but the outing was nice.  I'd missed my pastor's last sermon. He was leaving for Canada in a few days to start pastoring another church. They caught me up on what I'd missed.  Sounds like the sermon was a good one.

I was now 22 weeks 1 day pregnant.  Still too early to deliver, still two weeks until viability, but we had made it through the weekend and I had great hope I'd be pregnant for a lot longer. I was mentally preparing for long-term bedrest. Despite how bad things had looked just a few days ago, now it looked like I'd be pregnant for a while. I was optimistic.

This would not be the first time when things looked really bad for JAM, and then somehow we squeaked by. Just watch. It happens again about a half a dozen times over the next few months.

I appreciated the prayers so much. I appreciated the notes and cards and well-wishes. I loved the phone-calls.

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There was something that didn't sit well, though, with about a fifth of the cards or instant messages I'd receive.  I couldn't name it, so I couldn't explain it. I gathered it was my fault. No one said anything wrong or off color. But I knew I wasn't seeing their words, the bible verse references they sent, the way they wanted me to see them. And I felt a little bad about that.

That afternoon about a year ago another friend from graduate school stopped by.  Brian had an MDiv and a gift for speaking truth in no-nonsense terms. He and his wife had moved to our area the same time as us, which was a blessing that went both ways. Our families had stayed good friends. He was in the hospital visiting someone who had had recent heart issues as part of his pastoral duties to his church.  He dropped by my room to say "hi."

"Why does this bother me?" I asked him, "Why am I upset when people quote verses out of context about how everything will be okay? I know they're trying to help lift my spirits."

"They are spiritual incantations" he said, "it's what people want for you, so they 'claim' it hoping that will make it be so."  And thus, I had a word, a phrase, for what bothered me so much. Spiritual incantations. Wave a wand, things will have to be okay, right? That's what it felt like. 

But it might not be so, and what then? What if my spirits weren't lifted by the verses they claimed for me, and furthermore, what if they claimed the wrong verses?

Brian assured me that I wasn't completely off my rocker, which was good, because I was pretty sure my soul was as hard as a rock for not rejoicing with every one of God's good promises.

Now, before I go any further, I want to say something to those of you thinking, "Oh no, she's talking about me!  I did this a year ago! I sent her a hopeful Bible verse. But I was just trying to help."

First, I actually have no recollection about who did this, just a general memory of hearing and reading lots of Bible verses that were meant to encourage and having them fall on the hard concrete of my heart. Second, I recognized even in the moment that this was not the intent, that the verses were from people trying desperately to hold out some light in a dark situation. Third, it probably wasn't you. Most verses and well-wishes fell on a softer part of my soul. This was especially when they came from people who were trying their hardest to walk with me on this path.

Source: Photobucket.com

"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, 'move from here to there,' and it will move. Nothing will be impossible for you." (Matthew 17:20) If I have faith I can move mountains. Jesus said it, and looking back now, it's an inspiration, because He also did it.

But a year ago -- a year ago I'd worked so hard to give up my desires on this one and follow God's lead on this one. "Trust in the Lord with all your heart and lean not on your own understanding" (Proverbs 3:5-6). I wanted Him to direct the path, even if it didn't make sense to me. So I had a hard time getting that mountain to move. "Keep me pregnant for a month longer -- or maybe until I'm full term" was the desire of my heart.  But what if it wasn't His plan? (Actually, turns out that wasn't how things turned out.)

By His grace, I wanted my son to live. I had wrestled with him on this one. I knew that he knew my son. I knew that he knew my son before I was even pregnant. I didn't know if that meant that my son would live, though. But God was with us in this, and God was good. At that point, that's all I could cling to. I wasn't ready to think beyond that to specifics. That seemed risky territory.

Besides, what would happen when he didn't live?  What would I say to those who had hoped so hard? What did that say about me and my faith?  My faith was about as small as a mustard seed most days. Maybe they'd look at me and say that a mustard-seed faith just wasn't enough, that I should have faithed harder. How do you faith, anyway?  It's not a verb.

While things were looking up, while I was truly optimistic and thought I might even carry this baby to term, he wasn't viable yet. Maybe the days ahead would be harder than I could manage. (They would.) We were walking a fine line between new life and death.  Turns out we'd be on that tightrope for another two months, in one form or another, and I needed friends who would be with me in that, who were open to the possibility of death.

By God's grace my child would live. I'll take all the verses, the ones that fell on the soft soil of my heart and the ones that fell on the concrete edges, now, because we're in a different spot. Слава Богу.

Thank you for walking with me back then. Thanks for sending your notes of encouragement and your phone calls. Thanks for dropping by unexpectedly and telling me I wasn't insane to hold strangely to a mix of hope and fear. Even if I tossed your note aside at that time, even the notes that fell on concrete showed me that I wasn't alone. Even then they encouraged.

So, I guess what I'm saying a year out is not only thank you for sustaining us, but also forgive my hard heart. Thank you for journeying with us, despite ourselves. It is a hard road, walking between possible life and possible death. Knowing what words to say -- it's almost impossible. To those who sat with us and encouraged us with your presence, thank you. Looking back, I'd rather have words that felt like spiritual incantations than no words at all. The words said that you were holding out hope. And that's what I needed.

P.S. To those who somehow always had the right words (your initials are S.S., R.M., B.M., & V.L., among others -- there are quite a few wordsmiths among you), thank you. Thank you so much. Words are such powerful gifts.

Painless contractions and wordless groaning

A year ago today, July 1, 2012 my OBGYN walked into my hospital room.  It was good to see a familiar face.  "I can't believe you're here" she said, as she sat at the foot of my bed, "I was sure that they wouldn't need to admit you."

"So was I," I replied, "I thought this was just like last pregnancy."  The last pregnancy I had  had to be checked no less than a half dozen times due to false labor.  I'd come to believe that all labor before 36 weeks, in my body at least, was false.  Seems I'm really good at faking myself out.

"I heard you chose to go for the circlage" she said, "A risky choice, but I would have done the same thing."

She explained to me how things would work from here on out, how I'd be followed by the MFM (maternal fetal medicine) doctors and by her office, and how she would defer to the MFM doctors.  They were the experts on high risk pregnancies, so they were now running the show.

She left and, even though it was Sunday, I started notifying work and family of my situation via email. I was on bed-rest now. I didn't know for how long. No one had really talked about that. I didn't know of anyone who had been in my situation and then was allowed to walk around a week later like all was normal.  I assumed I was in this for the long haul, for a few months at least. "We won't keep you past delivery." the MFM doctor had said when I asked him about it, "We'll take it a day at a time."  An obvious statement, but maybe it was to give me some hope. I was stuck for a bit, but this would end, eventually. Later was better than earlier.

Despite being on bed-rest, things weren't boring. Doctors and nurses came in to check on me regularly. I was still contracting off and on. I was monitored carefully and so was the baby. I pressed a button every time I felt a contraction as my uterus was still too small for the machine to pick them up most of the time. Sometimes I wasn't quite sure if it was a contraction or not. We went for ultrasounds regularly to check the cervix and make sure the baby was okay.

At one ultrasound, the technician said, "are you feeling anything right now?"

"It's a maybe-contraction," I said, "I don't think I'd count it if I were counting."

"No," she said, "it's a real contraction.  Look at what your body is doing."

I looked at the screen and watched as the top half of my cervix, the part that wasn't sewn shut, grew perceptibly with the barely perceptible ache.  That little tiny contraction produced THAT dramatic of a shift? "The top is four centimeters dilated when you contract."

And that was a contraction that I thought didn't count.  Wow.  This was the groaning of childbirth?  My soul groaned more than my body with each contraction.  This is not the birth experience I wanted.

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TODAY, a year later, I spend much of the morning praying for another family.  Their child was born a micro-preemie, like mine. That child is still in the hospital almost six months after delivery, with no "go home" date in sight, and they're on my heart.  I do not give much detail on purpose. Their story is not mine to share.

All that said, I learned something this year. I learned that though I had ideas of what my child needed, God gave to praying friends details of unseen needs.  So many times I'd have a friend send me a note that said, "I'm praying for his heart" or "I'm praying for his lungs" and I'd think, "Why his heart?  It's his kidneys I'm worried about" or "Why his lungs?  He's doing great on the vent, I just want to know if he's going to be able to digest food!"  And then a few days later it was clear that the very organ that had been put on that person's heart was truly what needed work at that time.

So, without knowing more details, please pray for this micro-preemie that is still in the hospital.  God leads, surrounds us, and works through prayers.

This was one of many lessons I learned through my micro-preemie.

We know that the whole creation has been groaning as in the pains of childbirth right up to the present time. Not only so, but we ourselves, who have the firstfruits of the Spirit, groan inwardly as we wait eagerly for our adoption to sonship, the redemption of our bodies. For in this hope we were saved. But hope that is seen is no hope at all. Who hopes for what they already have? But if we hope for what we do not yet have, we wait for it patiently.

In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.  - Romans 8:22-27