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

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.

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.

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?)

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.

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.