Thursday, October 31, 2013

Halloween this year


 Halloween saw SuperJAM at three different appointments.

Receptionist: Who is this?
Steve (Dad): SuperBaby is here!
...
Steve (whispering): He goes by Jonathan, but don't tell, he doesn't want people to know who he really is.




This year
Last year

Wednesday, October 30, 2013

The NICU is not a roller coaster. The roller coaster ride starts AFTER the NICU.

NICU nurses, take note. The NICU ride is NOT a roller coaster. Roller coasters are fun, even while they're scary. And you know more or less that, chances are, all will be all right in the end. You're in for a ride, but at the end of it all, you strap in and hold on, confident that you'll get back off where you started and be able to look back at it all and laugh.

There is no such assurance in the NICU. While there are accomplishments, when you have a baby in critical condition, dangerous even to hold, there are no great moments of excited fun, no great uphill climbs. Not at first, at least. You try to enjoy every moment with your child, but this isn't a ride you enjoy. Small successes are followed by another surgery, another organ failed. And to top it off, you're not even sure where you're going.

It started to get fun for us just before our child was cleared from critical condition and became a "feeder/grower." It took over two months to believe he might live. Maybe that's when the roller coaster of "when do we get to go home?" begins. But until that day hit, we were not sure we'd ever be taking the baby home. It's not a roller coaster.

The funny thing is it was always on the bad days that you'd tell me this was "all just part of the roller coaster." I never heard this on the good days. Just the bad.

I don't remember waiting in a long line for this ride.

[NICU nurses: I KNOW you put this in the parent charts, "don't call it a roller coaster to the mom," I know this because for a solid two to three weeks I went from hearing that nearly daily to not hearing that analogy at all. THANK YOU for those solid two to three weeks. I was able to save a lot of eye-daggers by your notes to each other.]

No, no, a NICU is not a roller coaster. (I'm not the only one who thinks so. See? Some preemie mom even named her blog aintnorollercoaster.)

What is it then?  To me it feels more like being a part of a gigantic yo-yo. We're jerked around, at danger of loosing steam and ceasing to move altogether, dizzy with confusion, and not really sure which way is up or where we're headed.

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

THIS, though, THIS life after the NICU?  THIS is when the roller coaster ride begins. And in the ups-and-downs of life after the NICU, the ride is worth it. No, you really don't know what you're in for, and, yes, you wait with baited breath for the next corner, but you can breath. You're pretty sure you know where the ride will take you, you get comfortable and are all strapped in. You have a mostly healthy child. You cheer for the exciting big moments, like the first time he takes a bottle by mouth, or when he finally sits unassisted or gives that big toothless grin. You hold on for dear life at the drops, because they are still a little scary, but they don't last long, and you know you won't totally crash. Not likely, at least.  Besides, there is a joyous baby steering the ride, and that makes it all worth it. Sometimes, just as you start to relax, there are curves and turns and unexpected drops. Even with all that, THIS is a ride worth the wait.

Yes, I'd take this roller coaster of special needs to the NICU any day. It's manageable. And the NICU put it in perspective. Things aren't as scary here, so even the harder days aren't so bad.

Yesterday was one of those unexpected turns with a quick drop that followed.

"Stones?" I said to the nurse on the phone, "I thought that's what I was seeing... yes, I could see them. I didn't know they were anything until the ultrasound technician started to measure them, but yes, they were visible. ... They didn't look TOO big. And they can pass, right?  I hope it doesn't hurt him too much." And in my head, I was thinking: "No big deal, I think. I mean, it's not renal failure again."

JAM's big exciting appointment this week was with nephrology. Those are the kidney guys. The appointment had started off so well. The doctor was astonished at how bright and happy my fifteen-month-old was, how healthy since last year's kidney failure. All the pre-appointment labs looked good. "This is why I love treating children," he said, "they can heal so completely."

Then he went in for the renal ultrasound, just to be sure we weren't missing anything. That's when I saw black spots of hydronephrosis and white spots of kidney stones. I guess we weren't out of the woods yet. Not that I knew what they were at the time. I didn't suspect they were anything until I asked the ultrasound technition (who had cheerily pointed out the kidney and liver already, and so I thought might be in the mood to point out other parts of his anatomy) and she responded, "I can't give you results, you will have to consult with your doctor." I'd heard that before.

On the phone the next day the nurse confirmed that those spots were something. I don't know what kidney stones mean. I didn't know a little baby could get them. So we will consult with someone (likely his kidney doctor again) in the next few days to find out how to go forward.

In truth, my heart crashed a bit, and I wished more than the just the nurse had been on the phone, so that I could have had our questions answered immediately. Instead I will have to wait. I sighed. I had hoped all this was over. I'd hoped we were leaving the medically complex world behind, day by day. I guess not. It's not a big bump, I know. But it still jerks you around a bit. "I wonder if that'll be an ER appointment when they pass? Hopefully they'll explain to me what to do... Oh, poor baby. This may hurt a lot."

Poor little one. But alive little one. You are loved, baby JAM. And know that this world is so worth the ride, be it on a jerky yo-yo or an unending roller coaster. I'm glad you got to this point, baby boy, and I'm holding on with you. It's not so bad, you'll see.

[Okay, easy for me to say, I know. I don't have to pass a stone. Here's hoping it's an easy stone to pass!]

Of Today: Shared sorrow & changed perspective

You know what's difficult?  Realizing Jonathan wasn't the only one.

A year ago I would have said the opposite -- feeling that he was all alone in his journey.

But since then I've come to know so many more, and been introduced to people through friends.  People whose children are also complex medical cases. People whose children have nearly died or have passed. People close to my friends have had young children with renal failure, who became dependent on feeding tubes, who have had NEC and retinopathy of prematurity.

And my heart breaks. I know they'll now understand our story, and I'm sorry about that.  It's not so much that I wish I couldn't relate to them, I wish THEY couldn't relate to us.

Sometimes I can tell what searches bring people to this blog, and that breaks my heart, too. It means another parent somewhere out there just found out their baby was to be born at 23 weeks, or had NEC or ROP or a PDA or any of a number of acronyms I wish I didn't now know.

And I can't tell them it will be okay. And I know the heartache that comes. And I wish we were the only ones that had to have faced it. I wish the rest of this world could now be done with this, that there weren't parents living at their child's bedside, there as often as possible, wishing and hoping that she or he would fight through another day, hearts on the line.

It makes me more empathetic, yes. But I wish there was nothing driving that empathy.

Life is put in perspective, yes. Another preemie mom brought that up this week. But somehow I wish we didn't have to learn perspective in such difficult ways.

Monday, October 28, 2013

Day 103 & 104: The best place for preemie Halloween costumes.

Day 103 & 104: October 28 & 29, 2012

JAM was being weaned from oxygen. By day 104 he was off oxygen altogether and still managing to saturate high. I spent much of Sunday afternoon with him. He slept most of the afternoon, so I made him a personalized plastic pumpkin out of craft supplies the NICU nurses had on hand. I brought him a surprise, too. I practically waltzed in with it. It hung on a cute little hanger that I placed on his isolette and showed nearly every nurse that walked in. 

You see, the night before, October 27, the rest of his family had gone to a family-friendly trick-or-treating event. During the event I felt sad. We didn't have a costume for Jonathan. How could we?  All the overstuffed pumpkins and pea pods started at size 0-3 months. He was too small.

I'd joked with a colleague that I'd dress him up in tinfoil and call him a Chipotle burrito. "He's about the right size," I said.

The colleague usually has a sense of humor, but this time just stared at me in shock. I guess it wasn't funny, after all.

I also thought about finding red boxers and boxing gloves for my little fighter. But I was having a terrible time finding gloves.

So I was out of ideas. I think I'd read somewhere that Build-A-Bear bears were about the size of a three pound baby. Maybe there was my answer.

So, in a fit of holiday spirit, after gathering the girls and all their candy back into the car, we headed 20 minutes away to the nearest Build-A-Bear workshop. The sun had gone down and we were half-expecting the store to be closed. But it was still open. Open and nearly empty.

As I walked into the room, my heart started to soar.

Forget the pumpkins and pea pod costumes, or all the cute animal baby Halloween costumes. I had just walked in to the best Halloween store ever.

A store filled wall-to-wall with Jonathan sized clothes.

It took a little creativity to find ones that opened fully in the back or front, or that had comfortable-enough seams for his sensitive skin. And then there was the problem of his central line and ostomy bag. But we'd gotten pretty good about creative dressing in the NICU (the key is to put the head hole in through the feet, not over the head, by the way) and so we were confident we could get this to work.

The question was, WHICH outfit?  Superman and the Hulk were good ideas.  The green scrubs were probably most fitting -- that was the color scrub that the respiratory therapists wore, and I could think of nothing scarier for a NICU baby than the respiratory therapists with their suctioning machines. (Respiratory therapists - I mean you no harm. I think you're amazing people. And you saved my son's life more than once. Just trying to think like a preemie here.) He could have been Woody from Toy Story or any branch of the military. And then there was the tuxedo. What could be cooler than a James Bond baby?  We had so many choices. In the end, this is what we chose:

Sith babies have red pacifiers
Jedi babies have blue pacifiers.

Yes, somehow we settled for only one costume. Not by my design, but by Steve's prudent insistence. (He was right, of course -- although I DO still wish we'd gotten the tux as well.)

Our son already had fantastic mind powers. He could get nurses running just by holding his breath.  This costume celebrated all that.

Our son was a jedi knight.

Coincidentally, he was deemed a jedi knight the same day that Disney bought the rights to the Lucas Film line.



This is what he had to say about that:

NOOO! I am NOT a Disney character!!!


It's okay, baby.
This outfit was bought when you were still
Disney free.

Sunday, October 27, 2013

100th day - becoming a baby

In many parts of Asia, your 100th day of life is worth celebrating. We received 100 day shoes from friends in China. They were much too big for him, so we didn't even try them on, but we DID have much to celebrate.

Little JAM was becoming a real baby.

His accomplishments over his 14th week of life were as follows:
Comfy PJs and my favorite hat (Says "sparrow" in ancient Greek)

He grew. At just shy of 14 weeks, he weighed in at 3 pounds 11 oz.  The hospital had just changed their policies, allowing a baby to try to retain their own heat at 1.6 kilos (previously 1.8 kilos) and so they popped the top on his isolette and we got to dress him in comfy fleece pajamas for warmth.

He began therapy sessions with both a physical therapist and an occupational therapist. His occupation is, of course, being a baby. So he needed to learn how to be a baby. This included (primarily) learning how to eat from a bottle.

Steve went in as usual the morning of his 99th day and met with the occupational therapist for his first session. And Jonathan ate from a bottle. Only 2 or 3 ccs, or 1/10th of his normal meal, but it felt like a huge success. There was much to celebrate.

That evening I came in and found Jonathan cranky. He was hungry. He was on a strict feeding schedule, so I couldn't give him food, but I could give him love. For the first time since his birth, I simply picked him up and held him, without the help of nurses or respiratory therapists.  To top it off, as he was dressed in a comfy baby outfit, not one of the small gauze-sized gowns that he'd been wearing for the last three months, he felt more like a real baby.  A normal baby, clothed and hungry, being comforted by his parent.
Sleep smiles.

On his 100th day he weighed 3 lbs and 13 oz.  This is two ounces higher than his highest weight in September, when he was so severely swollen from edema likely because of kidney failure and NEC. This time, though, all the weight was GOOD weight, and we rejoiced.

Things continued to look up the rest of that week. Steve fed him and he ate 1/4 of his dinner by bottle on his 102nd night. On his 103 day, he pretended to nurse. It wasn't successful, but it wasn't an entire failure, either. A year ago today, at 103 days old, he weighed 3 pounds and 14 ounces. The doctors were discussing scheduling his ostomy reversal as soon as he hit two kilos. They had dialed up his IV lipid intake just a little bit as a way to get him there. Cheating a bit, yet, but he was so close.

He was still on nasal cannula, but requiring less and less help each day.

On the home front, a hero from church realized that Steve and I weren't seeing each other any more, and that we hardly ever got a chance to talk. He volunteered to set up a babysitting schedule for us. He said he could get someone to babysit our kids nearly every night, but we knew the girls needed us too, so we settled for a twice a week date night. This hero handled everything, coordinated schedules, and then simply told us who was coming over. The dates invariably brought us to the hospital. Sometimes we'd go out to eat before hand and talk about our days. Unhurried talk. It was hard to get used to at first. Then with bellies full and blood pressure down, we'd stroll into the hospital to do Jonathan's evening cares together.

I mentioned my own exhaustion in an earlier post, but I think Steve felt it more than me. He felt the drain of being a full time parent, full time teacher, NICU dad, and the pressures of finishing up the research projects he'd started the summer before. He never had enough time in the day. In our exhaustion we hadn't seen each other, and our pelting conversations turned into misunderstandings and added tensions. These dates were essential for learning how to renew a healthy relationship.

 These dates did something else for us, too. We started to learn how to parent this baby together. It had been so long since we were both in the hospital, able to look after Jonathan as a couple, that we'd developed our own routines for Jonathan care, and we weren't really too aware of how it could be done differently. On these dates I learned how Steve liked to feed Jonathan, how he changed his diaper, etc. In fact, Steve got to teach me how to feed our son, a switch from life with our older two children. I saw how much we'd each grown in confidence with this little baby. And most importantly, I learned from the doctors and therapists that though our ways of doing things were slightly different, they were both correct. I'm so grateful to have figured that out BEFORE we took Jonathan home and fought about proper holding techniques.

Mimi shows off the blanket I knitted for her
while in the NICU.
Ella cuddles under her own 5 year old baby blanket.
Meanwhile at home our girls got the fun of a game night or trip to the park with someone who wasn't utterly exhausted. These babysitters were heroes. They'd spoil our children. Sometimes those kind souls would even wash our dishes, giving us a greater sense of calm when we returned home. (Note to all NICU parents out there: invest in a dishwasher. We now really really wish we had.)





A year ago we were feeling blessed, on all fronts.  Yes, the journey was long. But we were not alone in that journey.

We were celebrating JAM's 100th day.







BONUS CLIP:


JAM and Steve discuss the cost of milk. (A glimpse of Steve's parenting style?)

Friday, October 25, 2013

Day 97: When the NICU race gets long and a full-term baby is only 3 pounds.

About a year ago, October 22nd, we were exhausted. Mimi, our four-year-old who had been potty trained two years earlier, had reverted to bed-wetting and having daytime accidents again. Ella, our five-year-old, explained to us that she understood she wasn't in swim classes this year because of Jonathan. We told her it wouldn't always be like this, and that if she were in the hospital, we'd be doing the same for her. We cuddled. That helped her understand.

On our better days we dosed out extra cuddles for our girls to help get them through. While we couldn't be there for them like we used to, we tried hard to have the time we were there be quality parenting time. Other days, I retreated to my bedroom, closed the door, and claimed privacy for pumping. I was strangely grateful for the excuse to sit by myself. I'd stare at a dumb game on my smart phone or read a book on my kindle. Sometimes I would pump in what would someday be Jonathan's room -- my old bedrest room -- where the hospital bed has been removed, but a TV and chairs are still set up -- and I'd watch something mindless on TV. It wasn't that I was trying to get away from the girls, I was trying to get away from the mess of dishes piling up in the kitchen or the cluttered corners and the noise. Yes, it was the girls creating the noise, but on a different day where life wasn't so completely out of control, I would have been fine with the auditory chaos. In this world, though, I had a hard enough time processing the essentials. So while Steve cooked and the girls created imaginary worlds out of blankets and couch cushions, I hid.

I was exhausted. Although I'd finally stopped waking up at 3 am to pump, I was staying late at the hospital, working full time during the day, and only guaranteed to see my children in those brief and hectic hours first thing in the morning and at dinner time. Those were also the only times that I'd see my spouse, unless we managed to sneak in a lunch date. Conversation had disintegrated into pelleting each other with words.  When I finished pumping and rejoined the family in the main area of the house, conversation would be anything but fluid.


"Are you going in tonight or me?"
"I'm not sure how are you..."
"Mommy, can we go rollerskating toni..?"
"Sh. Talking."
"But mommy, but mommy, um, but mommy, what can we..."
"SH!"
"I'm not sure if I should go in. I've still got a little bit of a tickle in my throat. I think it's allergies, but..."
"NO, Mimi, do NOT draw on my paper!  That's MY coloring book!  Mommy... I got this coloring book from Johnny B for my birthday. And now Mimi is coloring all over it!"
"But mommy, it was...it was... um, but mommy, it was..."
"NO! You're going to RIP it!"
"... just to be sure, maybe you should go in. I'd hate to give him a cold."
[Tears] "Mimi HIT me!"
"But, um, ELLA! but, Ella pulled the book..."
"Did you call the NICU today?"
"...pulled the book out of my hands. And. And. She hurt me!"
"But this is MY coloring book, Mimi."
[High pitched Mimi screams]
"Yes, they had to put him on nassal cannula for only a couple of hours."
[Screams turn to shrill cries]
"Ella, go to your room. Mimi, go sit on the couch. I am SICK of you girls fighting with each other. We are trying to talk here. If you can't behave, I'm taking away the coloring book for good."
"But, can we go rollerskating still?"

Life at home was anything but calm. We weren't thriving, we were surviving. The hospital routine, the "new normal" as I tried to call it, hit us all hard. Ella had taken on all my bad survival habits.  She had forgotten that good people wait for others to respond and ask in kind voices with pleases and thank-yous. She took on my snippy attitude along with my short fuse. And then, like all children do, she characterized it. She became like a blown-up, exaggerated version of myself, but in a  five year old form. In short, she became an early teenager, complete with the rolling of the eyes and self-assurance that I just didn't get it and never listened.

In her defense, she was probably right. I probably didn't listen. As you'll see, their dad, my spouse, was much kinder.

If you didn't catch it in the early conversation, the girls were asking to go rollerskating with school friends. The event was free, sponsored by the school. The guilt of Eleanor's earlier comment about swimming hung heavy. I'd be able to get them home before Jonathan's care time if I rushed, and maybe then Steve would get a rest in and not get sick.  Rollerskating was a disaster. Ella spent the whole time learning how to fall while Mimi, younger but in more stable skates, zipped around like a pro, only falling when I took the camera out.

That said, Steve got a chance to rest. It wasn't long enough for the girls. "We want to skate LONGER" they protested as I pulled them out of the rink about an hour and a half after we arrived. I reminded them that I had to go take care of Jonathan. I dropped the girls off with Steve and rushed off to the hospital, grateful for the break.

Steve then exercised his great kindness. He carried the girls over a minefield of toys and dirty clothes, and tucked them in to half-made beds. Then he pulled up their desk chair, the plush blue that I'd had as a child, and he read them a Bible story. On nights like this, they'd end in prayers, which would invariably both be too long -- almost like a narrative or story when Mimi would pray -- and also would invariably lead them all to remember me and their baby brother in the hospital. Steve would eventually cut them off, remind them that they could keep praying SILENTLY, kiss their foreheads, give them hugs, and turn out the lights.

-----
37.5 weeks gestational age, 3 and a quarter pounds.
At the hospital I found a little calm. Jonathan was alert and happy. He was finally a full term baby, less than three weeks away from his due date. He knew it and he showed it. He was awake for longer periods, missed us when we weren't there, was hungry by care times and would let out small cries for food. These cries were becoming more and more audible each week as his vocal chords healed from intubation.  It became harder and harder to not be with him during the day. I was grateful that Steve could work from Jonathan's bedside a few days a week.

While Jonathan acted like a full term baby, but he still didn't look like one. At 37.5 weeks gestation, he weighed a mere 3.25 pounds.

JAM waves.
He wasn't growing well. It was a catch-22.  The doctors knew why he wasn't growing. It was the ostomy. His small intestines weren't hooked to his large intestines, so he couldn't absorb my milk as fully as he would be able to once surgery was done to "hook up his plumbing the right way," as I'd put it. But they wouldn't do surgery until he hit two kilos. He was on a mix of TPN (like an IV gator-aide), lipids (yep, IV fats) and fortified breast milk from me. We were trying to pack on the pounds, but at this rate, he wouldn't top four pounds until well after his due date. The longer we had to wait for that surgery, the longer he'd be in the NICU. The road stretched long before us.

That small size hindered us in other ways, too.  It meant no baby toys. Most full-term NICU babies start to get toys in their cribs to keep them entertained while they're awake. But in order to have toys - or go in a swing - he needed to be able to hold his own heat. He was still in an incubator because heat-holding was one thing he couldn't do yet. He needed more weight first.  Then they could "pop the top" and see if he was ready for a big boy crib.  Then they'd bring in a swing and mobile for him.

"He looks so wise," a NICU nurse said looking in on him through his isolette. "Look at him looking at us, holding in that pacifier. He's really thinking about things."
"He's a full term baby now" I said.
"It's hard to believe, he's so small that we forget sometimes that he's that old," she said. "You should bring in pictures for the side of his isolette.  That way he has something to look at while you're gone.

I pulled off a picture from Jonathan's magnet board in his room. It is one Ella had drawn on lined yellow paper. It showed off the fireworks we'd seen from the hospital room while I was on bed rest. Scribbled spheres in an explosion of colors.

I grabbed another one, too.  This was one Mimi had drawn. It showed a big box with a tiny baby inside. Then a bed with a squiggly-faced mom with frazzled hair. And off to the side, in the upper right, three smaller figures, one slightly larger than the other. The smaller ones had triangles for skirts and two stick legs coming out beneath them. The larger of the small figures was wearing pants and had glasses. This was our family photo, Mimi style.

I didn't want Jonathan to know the truth, so I put Mimi's picture back on the magnet board, out of his sight, and grabbed Mimi's rendition of the fireworks -- just as colorful as Ella's -- and taped them both to the side of JAM's isolette.

See?  The world is exciting. Colorful.  There will be less squiggly smiles someday. Soon, maybe.

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

Now a year later, the world is more colorful and exciting. JAM loves to smile and LOVES his sisters. Giggling with them is a favorite past time. Weight and height are still an issue.  He is wearing 3-6 month clothes as a 15-month-old. Our other kids as 12 to 15-month-olds were wearing 18 to 24 month clothing. We discovered that a zinc deficiency, possibly from the loss of 1/3 of his large intestine, is partially to blame. We've started him on a once a week zinc supplement to see if that might not help. The doctors have now ruled out all the scary possibilities, so we are hopeful that this is our solution. We are aware that this growth fight might be long and hard, but in the end, how much does it matter?

Like a year ago, because of his small size people believe him to be younger than he is.  Thus he looks very mature and thoughtful for his perceived age. A little gentleman.

A year later I've learned to listen more. Ella is relearning to be kind. Mimi is starting to lose her stutter.  Perhaps soon we shall become like ladies.


Thursday, October 24, 2013

Unusually sunny days - when things in the NICU start to look up.

It was a cold and dreary, snowy (!) day in my town yesterday, October 23, 2013. So let's look back a year, shall we?
An unusually sunny day
Written Oct 16, 2012 2:46pm by Laura M
The high today was a sunny 62, beautiful for mid-October.
I suppose you're not here to hear about the temperature, but it beautifully illustrates the day.

As I talked to the nurse last night, I mentioned that I might try to get in to see Jonathan before work the next morning, maybe get an extra chance to hold him, if I woke up on time.  That's all my body needed to hear and I was up every hour from 1:30 until 4:30 fearing that I'd slept in.  It's as if my eyes knew today we'd open to something amazing.  It's Christmas morning.  I really wanted to hold that little kiddo.

I got to the hospital around 5:20 a.m. and held Jonathan for an hour.  He didn't really like his cpap pushing against my shoulder and pushing the prongs out of his nose, so he went to a cradle hold for the last 20 minutes.  They gave him eye drops and fed him (through a tube still) while I held him.

At 6:45 the eye doctor came in to examine his eyes.  He talked about how fast they were healing, how unusually fast they were healing.  He talked about how the retina was completely flat.  On both sides there were no curled edges, no sign of it pulling or being removed even in the slightest..  He's now being moved to weekly instead of twice weekly eye exams.

I practically waltzed in to work.  It was like I was on a cloud.  My son will probably not have to go to Detroit.  My son probably would no go blind.  I knew the odds were in his favor, but this all seemed too good to be true.  I keep bracing myself for the next disappointment.  It can't all be THIS good, can it?

Then I got a call at 1:00.  I was at work and missed it.  It wasn't until 2 that I noticed I'd missed a call.  It was the doctor, telling me that Jonathan was off of CPAP.  I called back right away. "Is he still off CPAP?" blurted out as soon as I'd identified myself and given J's security code. Yes.  For how long?  An hour and a half now.  I checked again a minute ago (before posting this good news).  He is still off CPAP.  That's four hours with no respiratory support, no breathing tubes, no face blasted with air.  Just. normal. baby. breathing.

It was hard to work the last hour and a half.  I shredded things, paced a bit, ran errands, anything that didn't require much thinking but that could make the time go faster.  It only sort of helped.  The only reason I'm not driving to the hospital THIS MINUTE is because I am waiting for his oldest sister to get home on the bus.  I think she'll be as delighted as me.  I think we might make this into a family outing.  Let's hope he can hold strong until we get all the troops assembled.  It's not uncommon for kids to go back on some respiratory support part way in, as they get tired.

So you see, it has been a sunny day.  Unusually so.  Warm fall-scented air and bright colors.  Bright colors that in all likelihood Jonathan will get to see next year.  He won't only feel the crispy autumn leaves, he'll see the beautiful bright colors of the season. Did I mention the day is bright?
Thank you for all the prayers that you've given that have taken us out of the bad times and brought us to today, the beginning of Jonathan's 14th week of life.

The only concern right now is Jonathan's weight.  He isn't growing very fast.  He is still only 3 lbs and 3 oz.  The doctors have tried a few tricks to bulk him up, but it isn't happening.  The ostomy is part of the problem, but they don't want to reverse that yet (introduce his large intestines back into the digestive process) because he's so small.  See the catch?
-------------------------

Clearly, from the pictures, we made it in on time to see him without CPAP. Everyone came, all the sisters, dad, and me. We had a HUGE celebration. We spent a lot of time in the NICU. Steve graciously let me hold Jonathan. (We both really wanted to.)  And it was so freeing, just TAKING him out of the crib, only the monitor wires and central line attached. This was a HUGE day. While I began the day holding a baby in a cradle hold because his CPAP machine made it too uncomfortable for him to do skin-to-skin care, wondering what his eyes were up to, I ended the day like this (see the last picture). Knowing his eyes had healed unusually well. I was in heaven.

Tuesday, October 22, 2013

RSV season has begun

That's right. In our household, we are declaring the beginning of RSV season.

We now move back into our second and last season of isolation. Until May we will have no unnecessary outings, no church, no grocery stores, and no restaurants for JAM. All in the name of his lung development and our desire NOT to see the inside of the hospital.

Our visit as a family to church last week, despite precautions, had JAM coming home with a cough, rattly lungs, and higher respirations. He's ok, but it is a good warning. Snow(!) is in the forecast for later this week. People's windows are closed and I predict RSV will start to hit soon.
Thus, a week earlier than aanticipated, we go into hiding.

He is happy about the new sign on his car seat. A reminder for doctors' offices.

Monday, October 21, 2013

A snapshot: Life a year after having a "23 weeker"

A week ago (on October 14) my little JAM and I packed up and headed off for our usual morning physical therapy session.  What I knew, but he didn't, is that this Monday would be a bigger day than usual.

After he was encouraged to walk and stand, and pushed into all sorts of trunk-turning positions on an exercise ball -- that is to say, after we'd worn him out entirely -- he grabbed a cat nap, I grabbed a coffee, and we drove down the road to another office.  The Developmental Pediatrician.

This was our BIG appointment. We were told to expect it to take two to three hours. For us it took four hours.  It would be a snapshot for our doctor of where EXACTLY our son was now. This would help her catch anything that might otherwise be overlooked. This is also where a couple of studies that are following Jonathan get a chance to check in with us.

A psychologist came in and measured JAM's receptive, expressive, problem solving, fine motor, and gross motor skills.  JAM did a terrific job. He's on track or above (for his adjusted age) for nearly everything. He's got a long way to go to catch up to his actual age, but I'm still mighty proud of him.  His performance was true to what we are seeing at home.

He's significantly behind in gross motor skills (measuring as a seven month old would -- he should be more like an eleven month old or higher). We expected that with his multiple abdominal surgeries, though. And his tummy is often in pain, so he's not very willing to turn his trunk and learn to move from sitting to playing on the ground.  This is a known issue, and this is why we have him in PT.

He's a month behind in receptive skills (measuring as a ten month old), but part of that is because he doesn't yet respond to "no." THAT, in turn, is because (since he doesn't move around yet), I've never had to TELL him "no."

So, in short, we're pleased.

Want to see what a baby born at the cusp of viability looks like as a 15 month old / 11 month old (adjusted age)?

JAMin' with the sisters.
DARN CUTE, that's what.

Take note, nay-sayers.  These kids are so worth the fight.

The last two hours of the appointment, JAM finally got to take a catnap on the sheet they'd laid out for him, and I spent time talking to dietitians and nurses about his weight and height. That deserves another blog. In short, though, we have started a series of tests to discover why he is not growing well.

Frankly, I think it all comes down to JAM's dad, Steve.  For one, he nibbles at Jonathan's neck and feet all the time, tickling him with his stubbly beard and making Jonathan roll in fits of laughter. How can we expect him to grow when we're continuously nibbling at him?

And then, also, there's Steve's direct command.

 "Don't grow," Steve says to all our children, "You're not allowed to grow up! You have to stay cute and little forever."

Ella is particularly disobedient in this regard. As a six year old she is quickly outgrowing clothes made for an eight year old. She'll glare and roll her eyes when Steve gives this command and say, "But daddy! I HAVE to grow."  Her height, like her attitude, is quickly growing to that of a young teen. In her determined defiance we would not be surprised if her final size tops six feet.

Mimi laughs and giggles and promptly forgets Steve's command not to grow, as she frits around the room stuffing home-made crowns on all her dolls and on her father's head. She can get away with much, including growing a little bit. Her cute demeanor makes us forget her disobedience.

Yep, dad, I'll stay small. Whatever you say!
Frankly, Jonathan has been the only obedient child of the three. He really loves the world and wants so much to just soak it all up. If daddy says don't grow, he won't grow. (I should have used this as an example to the psychologist of how he really DOES understand the word "no.")

Okay, like all kids he pushes the limit.  He rebelled a little last weekend, stretching his size three month onsies and giving us an excuse to pull out his six month outfits. He heard that babies a year younger than him might soon be giving us hand-me-downs, and decided to stay just ahead of that curve. I don't blame him. At this point, it's a matter of pride. Stay cute and little, but not SO little that the other kids can beat you up. I get it.

Anyway, all this nonsense and utter obedience worried the developmental pediatrician, and no less than four preliminary tests were ordered. The biggest scariest one happens tomorrow.

I am grateful that the pediatrician takes all this so seriously, perhaps it's not just obstinate obedience. In either case, I have asked Steve to stop giving his command on "no growth." We knew Jonathan was good natured and easy going, and now it seems that all this obedience is causing no end of trouble.




Monday, October 14, 2013

Blessings and a Plea

Blessings
A year ago my mom would sometimes look at me in wonder and say, "imagine if you'd gone into labor in Europe."

You see, it was a near thing. I touched down back home from a visit to see my brother and his wife in Bulgaria a mere DAY before I went into labor the first time, and less than three weeks before my son was born.

Whenever she said that, I'd get something close to physically ill. I'd mentally sit down and take a brain-breath. "Don't get faint," I'd say, "it didn't happen."  Finally I asked my mom to stop wondering in awe about that timing. It hurt too much to consider the other options.

So many "almost"s and near misses with my son.

Looking back, we were always very very blessed (I admit, a full-term pregnancy would have been a BIGGER blessing; but then again, I might not have realized just what a miracle full-term pregnancies are if not for JAM). We had friends surrounding us, doctors that were kind and forthright, nurses that listened to our needs and encouraged us to take a big part in Jonathan's life as early as was possible without risking his health. We had a strong church uplifting us in prayer, and coworkers bringing us food -- we even had people learning to cook vegan so that everyone could enjoy their feasts.

On top of that, the federal government had our back. I know, I know... shut down and all that. It's not popular in the blogosphere to say GOOD things about this government, especially not our government and healthcare, but in this case, they got it right. There was an extremely vulnerable (albeit very small) member of their society who needed assistance and medical aide.  When insurance told us they'd pay no more, the government footed the bill.  Thank you, government. I pay my taxes with pride knowing that you, in turn, help care for the unfortunate in our society -- the disabled, the poor, and the micro-preemie fighting for his life.

There were other costs -- lost wages as I went down to half-time to attend to doctors appointments after discharge, extra gas costs, etc -- but even here we saw God's hand at work. When we didn't know how we'd make it, there was a check we'd forgotten to cash, or an unexpected gift from a friend, or an oversight in bureaucracy that was remedied in our favor.

In short, we could turn our attention completely to Jonathan because we didn't have a huge financial burden hanging over us. If you've ever been in a spot as grim as us, you'll know how needed that is.  You understand what a huge blessing that can be.
------------------------------------------
A Plea.

I knew a guy in school over a decade ago. Since I last saw him, he's gotten married and had a daughter. He's walked closely with God and cared well for his family. Unexpectedly, a month and a half ago, he delivered twins at 26 weeks gestation, on the earliest end of prematurity that doctors in that country were able to treat. (Sound familiar?)  Thing is, yes, I said "in that country." Unlike me, they didn't make it home for delivery. They were in a land foreign to both of them. They are not under the umbrella of Medicaid and all the special services that helped carry our family through.

This hits home. Reading their care page takes me back a year. I didn't have twins, but I did feel the pull between my home kids and my hospital kid.  His one son is struggling to get off the vent and struggling to gain weight. (Sound familiar?)

His other son fought hard for over a month, Then his kidneys stopped working. He, like Jonathan, retained so much fluid that in the end he couldn't open his eyes from all the swelling. Best as I can tell, he, like Jonathan, developed NEC. (They never named it, but the symptoms fit. I'm not really sure if the doctors call it NEC -- I assume that Spanish would use the same Latin/Greek terms as English, but I'm not sure.)  After aggressively treating the "NEC" with antibiotic, this little boy's bowels ruptured. He still fought hard. For something like two weeks that little baby tried hard to make it. But his body couldn't take it, and so God, in his mercy, took him home.

I've almost been there.  For so much of their story, I've almost been there.  I remember looking down on a swollen Jonathan and tearfully finally understanding why God could let babies die. I understood how a loving God would save us, when all else failed, save us from the unbearable pain of life. I prayed he wouldn't. I told Jonathan to hang in there, promised him that life got better than the tubes and swelling, but I understood that death might happen. So as I've read their newly arrived and newly departed son's story, I've wept hard.
I never had to ask for money to help cover JAM's costs. I'm so grateful for that. So so many of you that knew me well asked if you could help, and I said you could just pray. Or watch my girls. Or hug us hard. But I didn't have to ask for funds.

If you still wish you could have done more for us back then, will you consider giving to this family instead?  Enough individuals check this blog regularly that I think if everyone who followed faithfully gave $20 USD, or the equivalent of taking a family out for fast food, we'd raise over a grand -- maybe two grand -- to help cover their unexpected costs. What a blessing that would be.  What a miracle we could be.
If you want to help, but feel funny giving to a family you don't know, tell them you're giving in honor of their sons, and in honor of babies like them who have had to fight.  You can even name JAM if you want to.

Here's the website for secure online giving.  Consider it, won't you?

And I promise, I won't ask again. (I MIGHT link back to this page again, though. Give updates --  like when they reach their fundraising goal. Or when they're so close that I think we can help get them over the edge.)

Tuesday, October 8, 2013

The Philosophy of Trees -- Retinopathy of Prematurity and Perception

I don't remember much about my undergraduate philosophy course, but I remember that my instructor had been dreadful.  He had assigned a half a dozen books, and I had been excited for the class. I loved philosophy. I loved thinking about what was real or false or concepts of how the world worked.

My classmates didn't feel the same way. They were taking the class because they had to. And they quickly discovered that our instructor was very easily brought along with them on unnecessary tangents. And tangents meant less material to learn and less would be on the test, because our instructor did not live by his own syllabus.

So we started with Rene Descarte's Meditations. A good place to start. And it was the only book we really read.  By the second or third meditation, our class had discovered the aforementioned secret, and they were all about continuing class discussions on topics long after they were dead.

Don't have a picture to illustrate this, so here's a picture
of JAM with a famous philosopher.

Bonus points if you can recognize the philosopher.
(Don't worry, not the philosopher who taught me.)
And so we spent somewhere between three and five class periods -- that's OVER A WEEK -- on whether the color I see as red is the same as the color you see as red, or if what I see as red you would perceive as green or blue or purple.

It was dumb.

I would not be majoring in philosophy.

But a year ago I decided I knew the answer to this ridiculous question from a decade earlier.

Yes. Yes. The color orange you see is different from the color orange I see. I know this, because the color orange I see is different from the color orange I see. At least, it was that afternoon. I was driving home from the NICU. The trees had all turned into a fantastic display of reds, oranges, greens and deep purples and browns. The landscape was a fireworks display. And the display had gotten brighter.  It wasn't because things were sunny.  On the contrary, things were back to uncertain. But these colors -- they were so alive. More alive because I was noticing them. I didn't take sight for granted any more. I wondered if my son would ever be able to indulge in the autumnal feast of colors.

Jonathan a year ago, recovering from eye surgery.
My perception of the world had changed.  And it wasn't just the leaves on the trees.  When the leaves fell off, the very trunks of the trees became not wood, but living vessels.  Some were ROP trees, like the thick gnarly wood of crab apple and oak trees.  Others, like the tall slender lines of the elm trees or the young maple tree, represented the vessels in the eye of normal babies, full term babies.  Those trees knew how to grow into the sky.  They grew straight, with many new twigs coming off each branch. The apple trees tried hard but couldn't find the right path. I pictured them pulling the weight of the earth up with them, detaching themselves because they couldn't grow, couldn't push to the sun.  They'd never be able to see.  You could tell by the lower branches. Dead, if not trimmed. Dying because they saw only shade.

Jonathan was now post-op from his eye surgery. The surgeon had said he'd done a very thorough job, zapping as much of the protein in the sky of Jonathan's eyes so that the branches of the vessels could grow tall and healthy, filling his eye and keeping his retina firmly planted at the base of it all.  They'd be dilating his eyes at least two times a week for a few weeks to see how those vessels grew, to look out for stage four or five of ROP+.

I walked across our beautifully wooded campus at work. I again admired the bright colors of the leaves. Maple leaves are my favorite. But I also loved the leaves that turned a deep purple. My foot crunched on a dried brown oak leaf, and I smiled. This. This was a gift. The trees don't just flame, they crunch.

My son may never see a burning bush. He may never see a hill side dotted with reds and greens and yellows and browns as an entire forest erupts into a symphony of color.

But he will crunch. He will feel the leaf under foot or in his hand. And he will wave that hand and crunch those leaves, and maybe even toss them into his sister's hair.  He's going to live now, you see. I was becoming more and more sure of it. And if he lived, he was going to live a GOOD life. I would see to it.  It would be colorful, even if he would not see color.

The first eye exam post-op was neither positive nor negative. The ROP had not reversed. But it hadn't gotten worse either.  We kept waiting.

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

Spoiler alert.

This picture was taken a few weeks ago.  Today Jonathan can both see the splendor and feel the crunch of the leaves. He's nearsighted and he has limited peripheral vision from the scarring of laser eye surgery, but his central vision was preserved.

Monday, October 7, 2013

What I want my Early Childhood teacher to know about my preemie toddler...

I was asked to talk to a class of undergraduates today.  All of them are aspiring to be early childhood educators. The class works through the development of a child, starting with prenatal and going into baby and up to age eight. Today was the childbirth class. I was asked to come and give a unique perspective to childbirth - what is it like to have a micropreemie? What is it like to throw your birth plan COMPLETELY out the window?

The talk went great, and after talking about early labor, a traumatic childbirth, the choice we'd had to make, and summarizing a five month NICU stay in under ten minutes, I was grateful to have a chance to go into application -- what does having a micropreemie mean for them in early childhood?  What did they miss out on in their third trimester and how does that impact them? What should the teachers of former preemies know? (Are they ever "former" preemies?  That's a question I didn't ask, but I keep wondering.)

As part of my background research for tonight's talk, I asked a bunch of NICU parents for their insights. I'm posting their responses anonymously here. There's a chance that some of the students I talked to tonight will check out this blog. Hopefully this will add to what I said.

I broke the take-away message from the talk into three themes. Here's a brief overview of those themes with quotes from parents to support my thoughts.

1. Health is still an issue for toddler and grade school kids who were preemies. (My hubby was a preemie and as a 30 year old he STILL has lung issues that are severe enough we can't have animals or many carpets in our house.) We are germ-conscious for a reason. Learn about RSV and know that your cold can hospitalize our child.  Help protect these kids with proper hygiene.  Hand sanitizer, hand washing, and cleaning of toys, etc. is essential for us, for a reason.  (I was a little shocked that no one in the room knew what RSV was. Then I realized that I hadn't before I'd had a preemie either.)

Here's what other parents said when I asked what they wanted these students to know:
  • "I wish they'd get their flu shots, and send sick kids home."
  • "We are not just paranoid about germs. We are trying to save our child from a hospital stay."
  • "Sickness in other kids maybe mild and just a "runny nose" but that runny nose may end up hospitalizing my child. Please keep that in mind when I am ranting and raving about idiots that send their kids to school sick. And, remember that when the next week my child misses all 5 days of school and comes back with neb meds and on a steroid high."
  • "Sickness happens often.... their lungs are not that of most kids their age. Missing school is going to happen. Its not that I'm lazy, or don't want them there, but they sometimes need extra time to heal!"

2. Keep lines of communication open and get to know OUR child. We are good advocates for our kids. We learned to be when they were only days old, and have had many many months of practice with specialists ever since. We know a lot about them and learned a lot about the medical and developmental world through them. Talk to us a lot.  Tell us what your concerns are, but more importantly also hear what we know. DON'T try to think you know our child because you once knew a different preemie.  The paths these kids take are very varied.

See?:
  • "I think the most important thing to stress is communication! Teachers need to know that there is nothing a parent welcomes more than feedback on their child. I once had a teacher afraid to speak to me about their concerns over my sons reading level, for fear that I might be disappointed. Little did that teacher know that I had spent the entire year previously fighting with my child's teacher trying to get him to recognize the issues I was seeing. The best thing a teacher can do is start an open dialogue early."
  • "I recommend that teachers do not tell parents about preemies they've met who have had no lingering problems. Outcomes vary so much that the title 'preemie' is just the beginning of the story... Children who struggle early on may be able to push through only to struggle again, repeatedly, when they are older. My own research led me to keep my 23-wk twins in Kindergarten for an extra year, despite my children's preschool teachers stating they were doing just fine. Educators can help parents be aware of this option and help remove the stigma of holding children back."
  • "I'm an intervention specialist myself. What educators need to know is they don't know. They might have all the education in the world but no one can possibly understand what we have been through but us."
  • "LISTEN! Preemie moms watch their babies like hawks. We know when their heart rate and o2 aren't right, which milestones they are struggling with, when something is wrong because we know the dangers of prematurity and look for the signs and symptoms that anything is wrong. If a parent comes to you and says something isn't right with my child LISTEN! We are seeing something you're not. Being "delayed but not delayed enough for intervention" IS NOT ACCEPTABLE for a preemie! They have been delayed since birth....intervene immediately if a parent has concerns."

3. Development and sensory issues. I talked about adjusted versus actual age. I talked about how the "adjusted" age sometimes (often) lasts past age two, even if we're not officially adjusting any more.  Also, our kids may not see the world the way you think they should. My son may be hyposensitive, others are hypersensitive. Reflexes aren't as you think they should be. Get to know how they work, be sensitive to the fact that they may process things differently.  Like any good teacher does with ANY child (and like I already said with #2) get to know each child well.

  • "Our kids don't take the straight line with development, usually they are all over the place. Sometimes ahead in some areas and behind in others. That many have sensory issues that can mirror other problems, but they aren't. They may need more quiet, more time,and more help than some others. They didn't get the quiet of the womb, they didn't get the pressure on their joints in the womb, so this and many other things can impact learning and attention." 
  • "I would like my educators to know that micropreemies are at high risk for learning disabilities, social issues, sensory.....and early intervention practices should not stop when children reach school age level. My daughter, a 23 weeker has to work extra hard just to be average. She is in a great school but I still struggle to get her the services she needs!"
  • "The focus with all kids needs to go back to social/emotional instead of just ABC's/123's, especially with preemies. My 23 weeker is actually really smart, but socially still struggles. She is now 9 1/2 and I think that if she had better experiences in child care, we might have overcome some of our sensory and social challenges. We had lots of negative judgement from teachers and directors."
  • "I love my 22 weekers preschool teacher..However,I do wish I could help her understand Processing Integration Disorder better. Sometimes she can get overwhelmed and nobody gets it."
  • "LOVE LOVED LOVE our preschool teachers but I wish they were more sensitive to his sensory issues. they often let him get overwhelmed to the point of shut down and all it would take is to take him out of class for a few minutes to let him chill quietly to avoid his shut down."
  • "I'm an Early Childhood Educator and a mom to two preemies. I think the most important thing for all teachers to remember is that no two children develop at the same rate. We are expected to have all students reach the same point at the same time and that isn't real life, especially with children who are already developmentally behind their classmates due to prematurity."
  • "Sometimes their prematurity can still be a impact even after they quit adjusting for it."
And then there's other things that I touched on but didn't highlight.

4. Size/weight. Two notes: One, many preemies are very small. They had to work hard that third trimester, they couldn't focus on growing like their in-utero peers.  Two, size does NOT equal strength. Just because a preemie ISN'T small any more and looks more like their peers doesn't mean they're healthy. Their lungs still may suffer and they may still have other preemie issues.  Being a preemie is about a lot more than just being small.

  • "One thing, her father and I get annoyed with is people's insensitivity in regards to her size, we are constantly being told how tiny she is. We have even been told that we are lying about her age, so please stress the importance of not remarking on size and scars."
  • "Even though she might look 'typical' she is not typical and her lungs will still slow her down."

Basic understanding of prematurity is important. I never got in to quarantine tonight. I didn't talk about why he wasn't in daycare like we thought he'd be, and why I hired nannies for in-home care for the first year of his life. I never got a chance to say how lucky my son was because he didn't  have a trach or oxygen, and that they shouldn't think of him as a normal case. Truth is, there IS no "normal case." There is so much else out there to learn.

I told them that the things most babies get naturally Jonathan had to learn through hours and hours of PT and OT. I told them about his airplane arms and how that had hindered him from exploring the world around him. I didn't tell them about how I put him in a sandbox early so that he'd learn to tolerate the feeling of sand -- because otherwise he may never ever be able to stand it. (See the last two pictures in this post for him in sand and him with arms out wide.) I didn't tell them that it took him eleven months to be able to take all his nutrition by mouth without a feeding tube -- and that we think that's a HUGE success.

I didn't tell them so much.

But these students, when they are teachers, they will learn like I learned. They will find themselves working with a kid who doesn't fit their mold, and they will learn to expand their horizons.





Sunday, October 6, 2013

Day 76: An unexpected surgery - Rush ROP+

October 1, 2012.  I started the morning pumping. While I pumped, I posted a few cute pictures of JAM on his care page site. I talked about how great he'd done the night before with breathing on his own and how very proud we were of him.

I then went off to work. I walked in so that Steve could take Mimi to daycare and then take the car in to the hospital and spend the morning with Jonathan. I hoped he'd be able to see his face free of CPAP, but doubted they'd remove the breathing support except for during the night cares.

I'd only been back to work for about three weeks. I was still working hard to get through the paperwork that had piled up from the summer of work I'd lost, but overall work was going well. I'd settled into a new routine, and we were making it work.

About a half an hour after I sat down at my desk, the NICU called.

"Your son has Rush ROP" the doctor said, "It's a fast progressing version of ROP, and so we want to do surgery now, today, before it gets worse."

I found out later that it's a rare form of Plus Disease, and that in this type of ROP, a child can go from stage two to stage four or five very quickly, skipping the in-between phases and becoming legally blind overnight.  Jonathan had stage two ROP in one eye, and stage three in the other.

"Steve's on his way in," I said, "He'll be there within the half hour."

I called Steve and filled him in, and then sat back at my desk and stared mindlessly at my monitor.

Steve was already driving in. If I had him pick me up, I'd be delaying the time between now and when a parent would be there. Jonathan needed us, but he only needed one of us.

And then there were the statistics. The doctor had talked us through ROP a few days earlier, he'd said that if it progressed they could do laser surgery on the eyes, and that in 80% of cases that would prevent retinal detachment.  This morning he'd changed the statistics. In babies with Rush ROP, the chances went down. Only two thirds had successfully avoided blindness with surgery. In one third of the cases, surgery was not enough.

If surgery didn't take, he'd be on his way to a bigger city, a different NICU. There he'd spend two to six weeks undergoing retinal reattachment procedures to preserve some sense of sight, even if it was only the ability to see some movement or color. He'd be blind, but some vision would be retained.

We wouldn't know right away what path he'd take.

I stared at my monitor and tried to image it.  Maybe I could work Tuesday through Thursday and take my unpaid maternity leave throughout the next two months, taking Monday and Friday off and spending the weekend in the NICU far away. I couldn't leave him alone, but I couldn't quit, and I couldn't be that far away from my girls for so long.

I calculated the hours. How many weeks would I be able to make this work?

There was no way I could take the day off to sit in a room while he had surgery. I didn't know how many surgeries were in his future.  This was the fourth in just over two months of life. Steve could be here this time. I'd have to save my days for a time when Steve wasn't available.

I contacted the care network at my church.  They'd reached out to me several times asking how they could help, and I'd never been able to find a good way.  "If this happens," I asked, "Would the church consider helping pay for the hotel or hostel stay in the city far away?" I had to figure it out. How could we make it work, with the extra gas costs and the extra expense of hotel stays every weekend?  They responded quickly. "Of course," they said. And they were praying.

I had to figure it out, because one more thing -- one more dreadful thing -- and I thought I would snap.

"If I prepare for the worse," I told a friend, "and his eyesight is preserved, then I haven't lost anything.  If I don't prepare, and he ends up being rushed to the city far away, I don't think I could take it."

And I wasn't kidding.

I considered packing a bag, just so I was ready to go.

I did all this to keep myself moving, because frankly, for the first time, I was ready to throw in the towel. This was hard. Too hard. I wanted to crumble into a ball on the floor and not move. I wanted the world to go away.

But there was no towel to throw in. Just a baby. And he needed me. He needed us. So we kept running.  The race was long and hard and every bone in our soul hurt, but there was no other choice.

I know it seems silly.  Compared to everything else he'd undergone, this was easy. This was blindness, not death. But it's like when you turn a corner, expecting to see the finish line, and only see five more miles before the next turn, without knowing what is beyond that. We were exhausted.

My mom suggested that JAM always took the road less traveled, and so she'd pray that he'd do the same in this case.

I told her she was wrong in her math. Two-thirds chance he'd be okay. Pray for the road MORE traveled.  Pray that he'd be okay.  We were ready to be done beating the odds.  We wanted to move into just being.

This post's content has not yet been edited. If there are errors, they will likely be corrected (and pictures added) in the next day or so.