Monday, September 30, 2013

Retinopathy of Prematurity & believing he would live.

A year ago, on September 25, Jonathan was diagnosed with stage two and three Retnopothy of Prematurity (ROP). Suddenly all his care centers around preserving his eyesight. His red blood cells were low. Normally they'd give him more blood. Now they hope he's strong enough to make his own red blood cells because more blood parts means a change in blood pressure. A change in blood pressure might make worse his ROP.  Without the red blood cells, Jonathan looked pale and weak. Since red blood carries oxygen, he required more assistance with his CPAP.  Whereas his pressure and oxygenation needs had been steadily declining, they now began to rise again.

At home Steve and I both battle infections. Mine is so severe that they put me back on an antibiotic that Jonathan can't have, which means I was back to "pumping and dumping" again. On top of this, I'd broken out in stress-induced eczema. I had no idea such a thing existed! It seems unfair, doesn't it? Just as I'd thought I'd gotten my stuff together, we'd made a "new normal" and weren't even accepting food any more -- just as I thought things were getting better, my body decides to tell me differently. Hives covered my legs and arms and torso. Thick, raised hives.  I was put on predinsone to calm it. To me this particular steroid feels a bit like a freight train running through my veins. I was jittery. I was itchy. My body was rebelling. And then, on top of my skin deciding I'd had enough, I got sick. And then on top of that, Steve got whatever I was fighting.

Neither of us could go visit Jonathan. Our "every day he'll see one of us" rule was broken. Thankfully not for more than a day or two, and then I started feeling better, but it was broken nonetheless. We didn't want to chance him getting our bug. Not when he was finally doing okay. I didn't want to see a vent on him again. Never. Never again.

On our caring bridge site I write "In more than one way, we are all investing in the future, even if it means temporary discouragement." On my facebook page I wrote "So tired. Bone tired."

But in a way, it was okay. The retinopathy of prematurity and our illnesses. We were only worried about Jonathan's eyesight. We could tweak the blood parts he received to help preserve his eyes. We were only worried about his eyesight. And, while I missed him, I knew I'd be seeing him again soon. As soon as I kicked the nasty cold. We'd have many more days.

I believed he would live.

At home I started to think about nannies. If he came home, what would we do while I was at work? The daycare we'd planned to use, the one that had saved a spot for him, it was out of the question. Too many germs for a baby like Jonathan. If Jonathan came home...

In a fit of spontaneous optimism, the girls and I set up a baby registry. Not that we had need of one, I wouldn't be having a shower - this was the third child after all, and that's not how things are done - but I thought it'd be nice to put one together, because that's what people do in their third trimester. And here I was, third trimester.

I became frustrated that I couldn't register for a baby who had already been born. I put in his due date, but only one friend could find him by that date. So, in the end, our registry may have been not-so-useful for gift giving, but it was TERRIBLY useful for our sense of hope. I'd be having this baby. Really, truly, having and holding my two month old. He might be six months old or more before I could do it, but I'd be bringing him home. The giraffe prints and cuddly pajamas and mahogany cribs on the floor of the baby store told us so. And at home, he'd teethe. He'd need bottles. He'd need a cozy blanket or cloth carrier. He'd need a high chair, since I'd given away the girls'. Ella and Mimi loved the gun that they could point at things they thought Jonathan would want. (I limited them to two baby toys.) I enjoyed the hope, the chance to finally dream.

He'd be coming home.

Saturday, September 28, 2013

Mourning, reflecting, & lessons learned through JAM.

A year ago I gave a talk in chapel at my college. My college has a campus-wide bible study each year, and this year's study was on the beatitudes. Steve and I planned to lead a bible study in our home, as we do every year, and so over the summer I re-read the beatitudes while on bed rest.

There was a piece that stuck out to me.
"Blessed are those who mourn, for they will be comforted."

While on bed rest, I heard too much of "God won't give you more than you can handle" (actually, ahem, it's God won't TEMPT you more than you can handle."  See?)

Notice I didn't say I heard a lot of these statements, they didn't come at me too often (a testimony to how fantastic my friends are), but I heard them enough.  I even heard it on the radio on my way into the NICU in August, through this song.

And you know what I screamed silently at the radio (actually, okay, I might have screamed this out loud) when I heard this song? -- "Guess what?!  I think He gave us more than we can take!  THIS IS TOUGH."

And you know what else? Jonathan was on the brink of breaking. So the promise that we wouldn't break? It didn't fit. And that's why, instead of clinging to the song or misquoted scripture, I clung to two truths. God was with us (that part of the song is spot-on, see here and here) and it WAS okay to mourn. In fact, when I allowed myself to give up and said "God, I can't do this any more, this child is yours" -- when I truly crumbled in front of my King, THAT is when I felt closest to God, carried by him.  (For more on this theme, see a piece written just this month by Michael Hidalgo called, "Yes, God Will Give You More Than You Can Handle." It is probably more worth reading than this blog, frankly.)

So I approached the chaplain and said I wanted to say a few words when it came time to talk about blessed are those who mourn in chapel. This was in August, over a month before I would actually speak. Jonathan was still alive, but I didn't know if he'd live. In fact, a year ago today, we still weren't sure -- although we were starting to believe we could breathe a bit.

Here are a few snippets of the chapel talk.

I come from an American subculture where, if we were to write the beatitudes, we would have written "Blessed are those who buck up and bear it, for they will see that this too shall pass." [Here I give a brief bit of his story] 
There would be times... when I would not know if things would be okay for [my son]. I had faith in God, and I knew His will would be done, but as I looked at my son, struggling to live, I could not have told you what His will would be. I could only pray. And scream. And hope. And pray some more.
Blessed are those who mourn, for they will be comforted.
This summer, I let myself learn to mourn. 
The odds of long term life and health were against [Jonathan]... Over and over again, I continued to cry, "your will be done." And my cries were not cries of me carrying forth with strength and faith. I had no strength. And my "your will be done," at times would barely come out of my throat, because I was afraid of what his will might be.So I wept. It was foolish to try to stay strong in front of God. He knew my heart. I told him how afraid I was for our son.
I mourned for many things with Jonathan over the summer, and it was in my mourning that, strangely enough, I was comforted.
The comfort came from two places. The first, and strongest, was God's peace and presence. His spirit infused the situation. He didn't tell me what would happen, I didn't know how it would all turn out, and I still don't, but I knew that he was there. That he knew me, that he knew our baby Jonathan, that he loved us all, and that he cared.
The second place that we found comfort was from people: family, friends, and even strangers across the globe... Most days I didn't have the strength to pray, I didn't have the words to know how to pray, but I could see and feel God working. I was being carried by those prayers. [And so was Jonathan.]  ...   [Then I briefly tell this story, and this story.]
When we didn't have the strength, we learned to surrender. When we surrendered, when I learned to give up my outward appearance of having it all together, and when I learned to weep, there was comfort. We found those who could mourn with us. We found ourselves being carried by God, even as he carried our son.
If you think you have to buck up and bear it, if you think you have to stay strong and carry on when things get tough, you're missing something.  Giving it over is harder, but it is better.  Blessed are those who mourn, for they will be comforted.
And if you know someone who is mourning, mourn with them. Join in the cries out to God. It may not always be comfortable, but it is good.
Thank you to all who mourned with us, prayed for us, hoped with us, and ultimately helped carry us through the last two and a half months. The road ahead is long, but in our weakness, in our mourning, we find strength and comfort.


A few things strike me looking back at this. First, it seems like so much of this is about our mourning, our pain -- and not Jonathan's. That seems strange. His pain was there too, and it was what was causing our pain. He, too, was being carried by God, and we saw that over and over again.  I think this betrays something about my mindset. For two months we had seen him so close to death's door. A year ago, I think I still saw him as near death's door. The mourning was still so much about the mourning of the loss of our son, and the needle pokes and incisions and morphine -- those were not what caused him (and us) pain, those are the things that gave us hope. Now, looking back, we are saddened by all he has to go through, but at the time we were stuck in a weird in-between. We were trying hard to celebrate every moment, to celebrate the life he had, while also realizing that that life may not last long.  I'd had to tell his oldest sister he might die. (Again, I am so grateful for her strength in all this.) I think I still felt like an extension of him. Like he and me were still connected, still together fighting for that third trimester. Still waiting to see what kind of baby we had in two more months, when his due date finally came. What a strange spot to be in.

The second is how important corporate prayer was, corporate mourning. This still carries with me. But even after last year I am not as good at it as I wish.

Sometimes I am struck, though. A few days ago I was sobbing like an idiot, curled in a fetal position on the floor with the sort of cries that don't come out smoothly, but in fits and jerks, mostly in barely audible grunts.

I had read the care page update of an old classmate I barely remembered. A mutual friend had referred me to the page because she knew of Jonathan's story. His child is sick like Jonathan was sick. She thought I could give some help or understanding. Instead, I just gave tears. I doubt they will ever know.  I doubled over and I mourned with them.

I really really wished I could say something. Something like, "hey, Jonathan made it, everything's going to be okay."

The truth is, it doesn't work like that. Plus, I got that kind of statement when Jonathan was in the hospital, and it didn't help. Over and over again last year, I'd hear about preemie success stories, but I didn't know that that meant my son would survive. Inevitably their stories were just enough different -- a baby born at 28 weeks, a full month later than Jonathan -- or a baby born larger or stronger -- enough different that I didn't know what all this would mean for MY child. I would feel even more lost and alone when people tried to give hope.

It makes me wonder sometimes. Why do I blog? I mean, can I give hope? I doubt it. I can't really use this as proof to another parent that things will be okayfor their child. In fact, I would NOT recommend this blog to a current NICU parent. It's too raw to read someone else's story.

I think that while I blog for me, as a release for postpartum anxiety and PTSD, I also blog for friends of NICU families.

 I know I wouldn't have known how to walk with someone like Jonathan or like us before we'd been through it ourself. I still feel like a bumbling idiot when I meet a parent with a very sick child, and I've been there, I should have some sense of what to say.

I think I learned from last year that it's less about what you say, and more about how you walk. Are you walking slowly with them, treading the hard road?  Are you asking them to tell you a bit, so that you can help carry their load?  In the end, I think that's why we're so blessed when we mourn. When we start to tear up, we realize that God is there beside us.

Jonathan's like me now. He doesn't like to cry out. He is fourteen months old. He won't call out for us to get him out of bed in the morning. We have to have the monitor on an ultra-sensitive volume so that we can hear him stirring. Otherwise he'll sit there for fifteen minutes. When we come in, be it right away or fifteen minutes later, if we ask him how he's doing, he'll stop staring at his hand (his favorite past time when he is uncomfortable) stare up at us, and his face will melt into tears. "I'm hungry mom."  And I look back at him, "Babe, I've got food for you." I say, "I have been right here all along. You should have told me sooner. I WANT to hear you."

I remember that God wants to hear from us too. And tonight those prayers go to an old classmate I barely remember and his family of5.

Wednesday, September 25, 2013

Week 32 (gestational) - FINALLY a good week.

One of his last days on a conventional vent - and finally
he's lost all that water weight.
Looking so much better.
One of his last days of showing off his beautiful brown hair
before it was covered with a CPAP hat.

September 15 through September 22, 2012 (A year ago) - Things were looking up for Jonathan. We'd finally gotten a good breeze, crisp fall air filled our lungs after a summer of unusually high and suffocating heat.  At least that's how I felt. There was a bit more spring in my step as the weather turned.  We were nine weeks into this NICU thing, and finally we'd found our stride. It was still rough, yes, but he was still alive, and that was enough.

My girls were both at school -- Ella thriving in kindergarten and Mimi enjoying preschool.  I was back at work, and while it was tough to catch up from eight weeks of maternity leave, I was so glad to see the students and my coworkers again. We were all adjusting to this new and busy normal.  Steve was taking the mornings he wasn't teaching (Tuesdays and Thursdays) to sit in the hospital room and work on his computer from Jonathan's bedside. He'd sanitize the computer before he'd start to work, and he'd scrub in again before he'd touch Jonathan, but the ability to answer emails in J's hospital room allowed him to be around when the doctors came by.  Also, when the nurses had a moment, he could get two or three to help him manipulate the vents so that he could cuddle with the little guy.

One of his first days on CPAP
Reports from the NICU were positive. I'd call Steve or the nurses every other time I pumped, so a few times a work day.  After his NEC/bowel surgery, things had been rough for a bit. He kept retaining fluid, and once they did start him on my milk again, it took him a while to digest it, leading me to be so afraid of another occurrence of NEC. Dilating the bowels helped get things going again, and ever since that first overly celebrated poop, three weeks after his first NEC surgery and about three or four days after we started him on food, things had been going great.  His ostomy site looked good, his central line looked good, and I was able to hold him nearly every time I went in. To me, that was worth the world.  Except, of course, that I had a cold, so I didn't go in as much, and when I was in, I was wary to hold him. But STEVE could hold him, and again, THAT was something.

Also, while the previous week he'd fluctuated between needing and not needing the conventional vent, this new week brought new strength to Jonathan's tiny lungs. He was placed on NIPPV, a CPAP machine that gives continuous positive airway pressure as well as puffs of additional pressure to stimulate breathing. After a few days, he graduated from that and was breathing with only the support of a CPAP (Continuous Positive Airway Pressure, in case you missed that the first time) machine. A CPAP is what is worn to bed for those with sleep apnea. It seemed like "no big deal," a step in the right direction. He was breathing on his own.  The machine was a quiet bubbler that, unlike most NICU machines, actually provided a bit of ambiance to the room. On top of that, we'd started being able to put Jonathan in clothes. A friend had knitted a sweater that worked perfect to cover up his ostomy while still providing easy nursing access to his central line (nurses had to observe that on a regular basis) and ostomy site.  If you want to make a NICU baby a cute, cuddly, humanizing outfit that also works well (for most everything except arm IVs) I recommend this pattern.

On the 19th of September I went in to help with Jonathan's evening cares. He was two months and two days old. And I got him mad.  For the first time since the day he was born (when he squeaked upon entering the world), Jonathan cried an audible cry. He had opinions and he was voicing them. I couldn't have been prouder.  Yes, he was mad at me for pulling a cord. But he was well enough to BE mad. My heart was a bit lighter that day. I'm sure I smiled at everyone as I left the NICU. "My son was mad at me. He was screaming these little squeeky screams!" I'd have said, if they'd asked about the silly grin. "Isn't life wonderful?"

A year ago he also finally lost all his water weight. He got down to 2 lbs 6 oz. His highest weight had been 3 lbs 11 oz. He was carrying over a pound and a quarter of water on a two and a quarter pound frame. Poor kid!  And then, just to add to my delight, after we started feeding him milk again, he started gaining. By a year ago, he was twice his birth weight at a hefty 2 pounds, 10 ounces.


Tinkerbell's fourth birthday
A year ago we took a break from the NICU the weekend of Mimi's fourth birthday. We drove to the hospital, visited baby J, then drove up to great grandma's house several hours away for an over night. Grandma joined us at her mom's house, too. We'd only go over night, we told her. We couldn't stay for a weekend as usual, because we HAD to see Jonathan once each day. It was all we could do, it was our duty.

Great Grandma's house is near a lake. It's one of the great lakes, so it feels more like an ocean. Add the cool fall air and the warm sun, and it's nearly perfect.  Or it would have been. I slept in the basement most of the time, trying to rid myself of the cold.  Steve and the girls went to look at the lighthouses and stones along the beach. Mimi talked about that birthday with her two grandmas for the whole next year. How she'd gotten to see Grandma and Grandma, and how she'd dressed like a tinkerbell.

Thursday, September 19, 2013

A YouTube video

This video was created for our church, for Jonathan's baptism about 10 months after his birthday.

It give you a look at our full NICU experience in about seven minutes. If you're journeying with me for the first time through this blog, we're just a few weeks from half-way through the five month ordeal, and this gives a good overview of that experience.

I thought it was overly emotional, it is definitely raw, but then I watched a documentary on prematurity called Little Man, and I decided my youtube video was NOTHING compared to that documentary. (Leave it to a professional to add in all the creepy minimalist music and such to make the experience even more horrific feeling than the feeling the beeps of the monitors alone produce.) 

By the way, this isn't a recommendation to watch Little Man, ESPECIALLY if you have recently had a NICU baby. That'd be a very, very bad idea. It'll make you physically a wreck, because it's just a bit too good at describing the emotional yo-yo. (By the way, I refuse to call it an emotional "roller coaster" -- the NICU has nearly nothing fun about it, you never know where you'll end up, you don't wait in line for it, but there's LOTS of being jerked around).

It's also a little too good at describing just how raw the experience can be on the full family, not just the baby that was born. So, wait a long long time after you've gotten through the experience to watch it.  I liked it well enough, but I'm a pretty tough cookie, and even I had to take it in small chunks long after Jonathan was safely back home with us.  Steve's never had any desire to brave that two hour journey. And as I don't think I ever want to watch it again, he probably never will brave it.

A year ago the documentary DID prompt my sister (who recommended the film to me in the first place) to ask us how our lives were going, apart from Jonathan. And, hopefully the "after he came home from the hospital" part of Little Man will give her a bit of forgiveness for the state of our house when she visits tomorrow.  (Right, sis? Because, Mimi successfully got her toys out of the guest room, and Ella promises to make your bed, and made me promise I'd let her make it, which means there's a 50% chance you have a made-bed tomorrow night. It's all cool, though, right?)

Monday, September 16, 2013

Week 8 (31 weeks gestational age). NICU ups and downs. (Mostly ups for a change)

An unconventional post, I know, but I'm going to just copy down the care pages from a week ago last year (the 7th through the 14th of 2012) so that you can see a bit of the ups and downs of the NICU. Thankfully a year ago, it was mostly ups. Then again, he'd fallen so far that he couldn't take many more downs.

Remember that as of the 6th Jonathan was carrying about a pound and a half of water weight (3 lbs 11 oz total) on a two and a quarter pound frame, and was recovering from his third surgery. Not the typical way for a baby to endure his third trimester.  His gestational age was 31 weeks.

Written September 7, 2012 10:07pm by mom
J is starting to shrink! Just little bits. He was down to 3 lbs 9 oz today. Since his estimated dry weight is about 2.5 lbs, this is good. He "only" has a little under a pound of water left to lose. His output has improved since last night when they gave extra IV liquids to hydrate him a bit better (prime the pump so to speak) so his body would be better at pulling liquids from his "third space." That, along with the renal/blood pressure meds seems to have helped.

He is resting peacefully and requiring less pain killer.

Also, my dad has made it through surgery. [for prostate cancer]


compare this picture to the one at the end of the week
to see how much he shrank
Written September 8, 2012 8:57pm by mom
1. Weight is the same as yesterday. We are grateful it hasn't gone up. We hope he sheds the water over the next week or two. He seems to be because...

2. Urine output remains up! Diapers in the teens to 30s range rather than less than 10. And a record 44 yesterday.

3. Still touchy and on morphine, but acting a bit less touchy today, needing less pain meds.

4. On room air (21% oxygen) being given through a conventional vent!!! That's right, they switched him back to his older vent tonight. This is a good sign. This also means that once he is stable enough we can start holding him again. Best breathing by him ever. You go boy!

Biggest issue remains water retention. I put a little hat on him (with matching booties -- thanks Sarah S.) and 15 min later when I removed the hat the indentation in his head was so great that I decided not to put it on again. All because of water.
Written September 10, 2012 8:45pm by mom
Jonathan has had a good few days. We have a few concerns for this next week, laid out below, but otherwise

are nearly giddy with the strides he's made over the past few days.

Today he started doing baby things again.  He was stable enough that I could hold him for the first time in three weeks.  He had the best transfer yet to my shoulder, enjoyed his time being held, and even cried an appropriate silent (tube down throat and all) baby cry when we put him back in his bed. The last few weeks he hasn't had the energy to give a good wail when he hasn't liked something.  Instead he would merely wince and had fidgety arms and legs when he was in extreme pain.  Today's cry was definitely a cry of "I was really happy where I was, this bed is cold, and why did you take me off my momma?" sort of cry.  (It probably didn't help that the surgery team started poking at him as soon as he got put back in bed. More on that later.)

Once he was settled back in his isolette, I gave him a pacifier.  For the next 20 minutes he sucked on it and every now and again would open his eyes to look my way.  Again, little baby doing little baby things.  It's been a long time since he was "with it" enough to suck on a pacifier.  It is hard to get the paci in his mouth with the two other tubes in his mouth, but he is pretty persistent and usually works with me to make it happen.

Today he urinated well and showed other signs of digestive progress.  His edema has come down significantly. He is a lot more like a cute little baby and a lot less like a cute little baby covered in memory foam.  If I put my hand on his chest, I still do get an imprint of my fingers on his torso, but his head has mostly lost the memory foam feel, so I'm hopeful that the water weight will eventually be shed.

His breathing deserves a paragraph of its own because he's ROCKIN' this.  He's been mostly on room air for the last few days.  He has continued to be weaned on the new vent, and if his blood gasses this evening are good enough, they may try him on a nasal canula or CPAP.  That is to say, they will take out the tube that goes from his mouth to his lungs, and will give him a much less invasive form of respiratory support.  The doctor said this might cause some bloating, but they do not believe this will negatively impact his digestive tract.  It is quite possible that he will have to get the vent back again, but he is doing so well that this is worth a try.

On to eyes.  Tomorrow Jonathan has his first eye exam.  They are looking for retnopathy of prematurity (ROP).  Generally they do not see ROP in these early eye exams, but they will follow up with him every two weeks until discharge to see if it develops.  Given his early gestational age, we fully expect it to develop to some degree. Sometimes (often) it requires little to no treatment.  

And finally,digestion.  The surgery team confirmed today that Jonathan is looking good, they are happy with how his ostomy looks and have cleared him to start receiving milk again this week.  The neonatologists agree and will probably start him on very small feedings on Wednesday or Thursday.  We are cautiously hopeful about this process.  We do not want NEC to come back (it is rare, but a possibility).  The disease is very scary, and I do not want to see him in that much pain again.  All this said we recognize the importance of my milk to his development and we are grateful that he has enough small intestines left to start digesting while he still has an ostomy.  So all in all, this is a very scary good thing.

On another note, Jonathan is being weaned off the renal (kidney) medications.  His urine output has been good and we are hopeful that the rest of the edema will fall off without the help of meds.

I will be back in the office in nine hours.  I am so grateful that I was able to hold Jonathan on this last day of maternity leave and so very glad that he had such a good day.


Written September 11, 2012 8:28pm by mom
3 lbs 2 oz and very stable. Still retaining a little fluid but nothing compared to the 3 lb 11 oz of last week. He has lost nearly half a kilo of water weight. I can move his ear lobes again. All are very impressed. Thanks for your prayers.


2 lbs 12 oz and no more breathing tube.

Written September 13, 2012 11:35am by mom
rockin the cpap - for a few hours.
J is now down about a pound from a week or so ago. This is good, as I think he has now probably lost all or most of his water weight. [SIDE NOTE: He hadn't. He still had half a pound to go.]

He is taking breaths on his own with the assistance of CPAP. This started last night around 5. I am hopeful that tonight by the time Steve gets to go in he will still be on CPAP, but he has started to realize how difficult this breathing is, and has required increased pressure and oxygen throughout the day, so he may require a breathing tube again. We'd like him to stay this way and not go back to the more invasive breathing machine.

He won't start on milk until he is breathing with less cpap pressure. The CPAP puts some extra air into the belly, and we don't want to irritate his digestion. One thing at a time.

So he won't reach 3 lbs again any time soon, but we are hopeful that when he does, it will all be good weight.

And he's back on the vent.

Written September 13, 2012 5:55pm by mom
Breathing is hard! J got tired out, so after about a day on CPAP, he is back on the conventional vent.

That's ok. He'll be able to try again later. His vocalizations over the past day have been quiet squeeks. Not much for crying yet anyway.

The doctors want to see more evidence that J's digestive system is working & nothing is clogged (more BMs) before they will let him start on milk again. But they hope that'll come in a day or two.

Guys day out
baby loves his paci!
Written September 14, 2012 7:16pm by dad
Maikata was not up to visiting the hospital for the last two days, so it has been just the guys, and what a party it has been!

This morning we had a visitor, and then the nurses let Jonathan out of his box for a nap on my shoulder.  For the next hour and twenty minutes, they nurses had to keep lowering his oxygen, down almost to room air because he was quite happy.

and... back down to normal size (nearly)
This evening now I am back in, and Jonathan was wide awake - they say it is not because of the caffeine, but I know he got a good dose this afternoon. He was busy sucking on his fingers until I gave him his pacifier. Once he realized there as an upgrade available, he grabbed the pacifier with one hand and started gnawing away at that thing with an eagerness that makes me think that two weeks without food is starting to get to the little fellow. The pacifier lasted about 15 minutes before I had to cut him off.

All the medical stuff has been good so far today, the doctors might have to do a little work to see if he is ready for food.  Hopefully they will do so soon.

Monday, September 9, 2013

At nearly 14 months old. Of Early Intervention / Early On

This post takes a break from reliving last year's preemie adventure.

Today was an unexpectedly hard day. Yesterday I'd shared Jonathan's story with a roomful of people. And someone had asked about future prospects for him. And I said something like we couldn't be sure, but perhaps by two or three we'd find that he was going to be relatively normal. And that at this point, there were delays, but no major red flags.

Today we got a new Early Intervention (EI) physical therapist (PT). In each state it's different, but in our state these are public school employees who come to our home once per week and help assess Jonathan and give tips for how to help him develop better, as he is at risk for long-term disability as a result of his prematurity.

I applaud Early On (or Early Intervention). I have worked with two sets of adults with disabilities. Both sets had similar disabilities. One set was from an earlier generation where there was less early intervention, one set was from my generation, where all children were encouraged to develop and pushed to learn new skills at a young age, regardless of ability level. The differences were striking.

So as a mom of a preemie, even while I still hope for a perfectly happy and fairly normal four year old, I drag him to every PT and OT appointment that the specialists seem to think is necessary. I trust their judgement. And their judgement seems to be, so far, that he's doing remarkably well for a 23 weeker, but he still needs to get on track.

I've been blaming his many surgeries for his set backs. And I'm probably right, in part, at least.

All preemie parents worry. Steve worries, many many of the preemie blogs I've read are scattered with parental worries. It makes sense. Our kids have fought so hard to be where they are, and we wonder, are we doing right by them now?

What makes it worse is that every preemie is so very different. It's not like I can go onto a mom board somewhere and find someone whose child has lived through the same exact things as Jonathan and is now responding to the world exactly as Jonathan is. He's unique. There are similarities, but also lots of questions.

I had just gotten myself convinced that he'd be small but healthy, that he'd be running around in no time and that he was relatively okay.

I think most of that is still true. But I got a good dose of reality from this morning's physical therapy session as well.

She started noticing things immediately. I loved her for that.

"Is he constipated?" she asked. I said no. I said he had been chronically constipated before his hernia had been repaired, but since that time five months ago that he was having the opposite problem, if anything.

Mom says I have a big head?
Can I really help it that I'm this AWESOME!
"I worry about his nutrition" she said. So did I, I expressed.  But after months and months of having people tell me that they thought he looked good, chubby even, I'd decided to stop worrying. Yes, he was falling off the growth curve, putting himself in a lower and lower percentage (now he's at .000001% I think), but he was still growing, and he didn't look malnourished.

"His trunk and face look great, but his arms and hands and legs and feet -- his hands and feet are so small," she said, "and that makes me worry about whether or not he's absorbing all his nutrition well. He may be taking in enough food, but if he's not metabolizing it right, that can cause issues. If he's not absorbing the right kind of fat, that will hinder his neurological development."

She asked if I'd seen a nutritionist about this. I had. But that's before we'd had to change formulas for a potential milk allergy. We had just switched off the preemie formula onto a new formula. And would I be seeing the developmental doctor soon?  I would. Next month.

And then she noticed his eyes. I hadn't noticed them. I'd stopped worrying about them a while ago. "They're not moving in tandem" she told me. "And they're not focusing well. Also, his head tilts when he tries to see something, as if he's got astigmatism.  This is going to start impacting his next phase of development when hand-eye coordination is so important."

I hadn't noticed any of that before.

"How does he do with grasping things?"
"Great!" I said. "He grasps puffs with his two fingers and then stares at them for a really long time. He won't put anything in his mouth unless it's a teething biscuit or a spoon. He doesn't like other textures, it seems."

"But look at how he looks at this light," she showed me, "his eyes aren't moving together.  You can see it in where the light reflects off his eyes. It should be reflecting off the same part of both eyes. He sees, he tracks, but I'm not sure how well he's seeing small objects."

She put candy sprinkles on a piece of felt.
He just stared at them.

"Most kids try to grab them," she said.

"It's almost like he can't decide where they are," I said, "if they keep moving on him, maybe that's why he's staring so hard, concentrating so hard. Maybe you're right about the astigmatism thing."

"When do you see his eye doctor next?"
"I think that they didn't have the calendar up while we were there -- we were supposed to call back for an appointment, but we never did."
"Since it's the 9th, and they open their calendars for three months out on the 1st, you'll not get an appointment" she said, "They'll be full. But they'll probably put you on the waiting list."

And she was right. I called before her car was even out of the driveway. They're booked through the year. I gave them three different numbers to call in case of cancellation. I mentioned all the issues the therapist had seen.

I know, all of this is a far cry from the worry about his bowels last year (with NEC) or his eyes last year (with ROP -- that story will come to you in a few weeks) but it still stung a bit. We're not out of the woods yet.
Straight as a board means I can STAND
with something behind me! Even if my form
isn't right, it impresses people, see?
- Long Jon in his Long Johns.

But that wasn't it. She also noticed his legs. Thankfully, this problem I was at least a bit aware of. Feet won't face forward. Knees won't bend. He always wants to be as straight as a board. In his trunk, too. He has a hard time turning just half his body to grab at something. He'll actively circumvent twisting by moving the object to a place where he can see it without half-turning his body.

"He has low muscle tone," she said, "that explains some of the issues."

I noticed his head was shaking. Just a little bit of a tremor.

"Is that from low muscle tone, too?" I asked. "I mean, it's not a seizure. I've seen those."

She said I was right, it wasn't a seizure. It could be low tone. It could be cerebral.

I don't want him to have cerebral issues.

She said it was too early to decide this now, but he might need orthotics. And if he had to get orthotics, they'd have to be custom designed. They don't make them for feet his size. That's not surprising, they don't make walking shoes for feet his size, either.

She heard his tummy. "That's awfully loud," she said.
"You should have heard it before he was switched to a milk-allergy friendly formula!" I said, "and it's strange, but you can see his belly ripple, too, when he has loud stomach noises like that. It's the weirdest thing."

She seemed to think this might indicate something.

Which brought us back to where our conversation had started. His nervous system is still developing, but it seems he's not getting the nutrients he needs, and we don't know why.

This has been my concern for months. And in about two minutes flat, his new Early On physical therapist had seen this.

I told her that the physical therapist at the hospital wanted Jonathan seen by an occupational therapist for fine motor skills. Earlier she'd talked about how she hoped to help minimize his appointments, so I'd expected her to say that she didn't think that was necessary, but instead she heartily agreed. My heart sunk a bit. That's three appointments per week again.

I reminded myself of those two generations of adults with disabilities. Of the difference early intervention had made.  She was right. He needed this. I thought about his locked knees, his unwillingness to rotate his torso, his prone feet... At this age, if we could get him on track, things would be so much better for him for the rest of his life.

But this means I won't be spending my days at home organizing closets or making pumpkin pies, like I'd dreamed. I'll be back to working half-time as Jonathan's therapy coordinator and half-time in my pay job.

I am so so grateful for someone who notices so well. His old PT would spend most of the time with us writing goals or testing his abilities in this or that. Does he grab his feet yet? Does he sit up yet? I saw her as a resource that would refer us to help when things got bad, but she didn't spend much time helping his body move. Not the way the PT at the hospital did.

This new EI PT had a very different approach. The entire time she talked to me, she was also pushing Jonathan, asking him to bear weight on one hand and reach with the other, asking him to turn his torso or grab a toy. Pushing him and watching him, finding out where his limits were and encouraging him to go one or two steps farther. And maybe it's too early to tell, but I think I like it.

That said, whereas the last PT would leave and I would go about my normal daily routine of cleaning or feeding Jonathan, this PT has left me a bit shell-shocked.

So many issues. My concerns were valid. We're not out of the woods yet. And my girls won't be coming home to peanut butter cookies on my days off.  My half-made new garden, stripped of sod but still not planted, will have to stay clay and rocks for another season.

I sigh. I want to cry a little. This road seems too long.

But then again, we wouldn't have it any other way, would we? I mean, yes, healthy, full-term baby -- we'd take that. Even if it meant stretch marks and sleepless nights.  But if we had to have him when we did, we'd rather be walking this road than nearly any other.

It's just a long one, that's all.

Of the end of maternity leave.

September 6, 2012. Jonathan had come out of the surgery to place his central line. It had been put in successfully.  Then he had gotten really sick. Lethargic, barely moving, continuing to retain fluid, and with an elevated blood cell count. He wasn't even willing to hold my hand any more. We were worried.

He was put with a new nurse who could give him one-on-one care. That seems like a good thing, but I so desperately wanted someone who knew him. I was growing weary of all the new names and faces, of having to try to look and stay strong when I was anything but. I wanted nurses that knew me and knew my son. I started opting to stay home with the girls in the evenings while Steve went in. I didn't have the energy to meet a new face, not when my son was doing so poorly and I was so worried about him.  I'd met one new nurse that morning. And another new one the morning before that... and on and  on. All this at a time when I couldn't even consistently recall the names of my close friends any more.

I wanted to ask the nurses to be my primary, any nurse, really, but I was too exhausted emotionally for that, too. I felt like the process of getting  a primary nurse was some sort of elaborate dating game. I ask, they accept, we tell the head nurse. But nearly every time, they were unable to be primaries for one reason or another. And I worried -- what if they don't like me or my baby? Then they have to make excuses on the spot, or they take us, but I don't want someone to primary for us that doesn't like us.

 Or there'd be that awkward moment when a nurse I didn't get along well with would keep hinting that having a primary was a really really good thing -- as if she wanted me to ask her to be our primary, when I didn't think I could handle her bubbly personality every day.  So I guess I didn't want just any nurse. But almost any nurse would have done. I wish I could have written down my top five nurses so that they couldn't see who recommended them. And they in turn could write down their top five kiddos, and the scheduler could see if there was a match without any feelings being hurt. But that wasn't the system.

And meeting new nurses was exhausting. One day when I came in one of the new nurses had asked how I was doing. "Fine," I'd said, "Tell me about Jonathan."  "NO," she responded, "really, how are YOU doing?  You're important in this, too."

I didn't want to talk about me. I was a basket case. But explaining that to a stranger that I'd maybe never see again that this NICU thing was really really hard wouldn't help. It wouldn't help me get information about my son. And I wanted information, that's how I cope. Look overwhelmed, and they'll sensor their information, trying to be kind. Look inquisitive, and they'll continue to explain. That's what I'd learned. So I pushed the conversation back toward my son again.

A few days later I came in for the evening shift and helped get my son ready for bed, lifting him so the nurse could change the sheet. "And how did that feel?" she asked with a broad and enthusiastic grin as I set him back on his bed, "wasn't it so nice to be able to do some little things for him? To hold him up?"  I think I glared at her. He was seven weeks old. I'd been doing this nearly every night for almost two months. It felt the same as it always felt. It's why I came in every evening. She was acting like this was my first time, like he'd just been born. Maybe he looked that small, but he was nearly two months old.  I wanted my old nurse back. The one that would joke with me and be straight with me, and NOT ask me to emote. I didn't want to emote. That took too much energy.

So I stopped going in at night, or taking only every third evening, and sent Steve in instead. "If you like the nurse," I said, "ask him or her to be Jonathan's primary."

And Steve did. But it didn't seem to be getting us anywhere.

On top of all the new nurses, my eight weeks of maternity leave was just about over. That meant going back to work. Going back to work and leaving my son in the rotating hands of strange nurses. I wasn't thrilled.

At a staff party a coworker offered that maybe this would be nice, going back to work full-time. Maybe it would help take my mind off things. This coworker was right, in part. The NICU was becoming all encompassing and exhausting. I was burning out, and school would force my brain into another realm, maybe help me not to worry constantly. But what if he needed me? I was Jonathan's only mom. Yes, the nurses were competent and caring, but (since he wasn't getting consistent care) they didn't know him. I did. So instead of giving a "yeah, you're right," my coworker (I'm afraid) got a glare. Or maybe I was more charitable and gave a nod and walked away. Honestly, I can't remember that day too well.

There was sunshine at the staff party, I remember that. Rippling on a lake where some folks had taken out a paddle boat. I'm not sure if I swam, or even went on the boat.  There was good food. I remember being allowed to sit and bask and eat caramelized peanuts on the deck, with coworkers who purposefully did not ask for details about Jonathan or how I was feeling. Instead they just let me sit.

Steve was a trooper. He and another friend watched to be sure my girls weren't drowning as they looked for shells in the shallow end of the lake. He also just let me sit. As if things weren't so bad for him. But I knew they were. Perhaps playing with the kids was his way of relieving stress.  Either way, I was allowed to sit. And some of the worry melted away for a few moments. My nerves felt less fried. I do remember that. The sunshine, the good food, it was what I needed. That's all I can remember from that day.

After I went back, the nurses passed on to each other, every shift, why I wasn't there. "They both work full-time," they'd say, "and they have two other kids at home." They'd excuse me from not being there, try to tell each other "no, this one is cared for, his parents just can't make it during the day, only every night."

I guess NICU abandonment is an issue. I guess they were saving us from a social work call?  I never quite figured out how those politics worked. But one of us was there for two to four hours every evening. That was our requirement, our promise to ourselves and Jonathan. We'd be there. Every day.

I didn't want to leave my son. But what choice did I have? Even if my family didn't depend on two incomes, if I quit my job, I'd still have to care for my three year old (as we'd not be able to afford her childcare). I couldn't go into the NICU for a full day with a three year old, so it wouldn't do Jonathan any good. And then there was the issue of viability. We still weren't sure he'd make it. His life was hanging in the balance. To lose a job I loved and a child I loved both in the same year -- it would be too much.  One step at a time. And I couldn't ask for an extended or unpaid maternity leave. They could only grant me another month, and he'd still be in the hospital long after that. No, I wanted to save the unpaid portion of my three month leave for when he came home. THAT is when I'd want to use that.

So maternity leave was a few days from being over, my son was very sick and still like a water balloon, Steve was back to teaching, the girls were back in school or preschool, and I was preparing to go back to work. Steve and I wouldn't really ever get in good talks for a while after I returned to work. We'd either be working or caring for the girls or caring for Jonathan. That would be our lives, split except for while sleeping or hurriedly eating breakfast and managing our schedule.  But we had to make this work. This was our new normal, this was the next three to six months of our lives.

We estimated that we had another two to four months of this ahead of us. That was too long to live in crisis mode. One day at a time. Jonathan was sick, but not as sick as when he had NEC. Dad had made it out of surgery, the cancer had been removed. Now he was recovering. As far as I was concerned, that meant we weren't in crisis any more. Just really worried. I made the linguistic switch (from "crisis" to "concerned") so that I could settle. Maybe just a little. Maybe just an illusion of settled, if not actually settled. All I knew was that if I heard one more person talk about being "in crisis mode," I'd snap. This wasn't a crisis. This was our routine. This is how we'd survive. This is how we had survived for the past eight weeks. We'd make it, because we had to.

Sunday, September 8, 2013

Sept 5, 2012 - A THANKS to the OBGYNs of the world.

I had told Jonathan's OBGYN to stop by. I had given her my number at my post-operation check up, and told her that my baby was still alive, and that if she wanted to, she could come see him.

I was pretty sure she'd rarely delivered a baby that small.

I knew from the look on her face as she sort of said congratulations and sorry at the same time that this was not something she wanted to have happen.

And I needed her to see that he'd survived, that he was now over six weeks old and still alive.

As a side note, my post-op appointment itself wasn't all that great. They really need to change the forms you fill out after delivery. Here are my quick examples of how wrong that post-delivery appointment can be for NICU moms or moms in bereavement.

  1. The nurse called my name and greeted me in the waiting room. "You didn't bring your baby with you?" she asked (still in the waiting room). --> DEAR NURSES: check the charts and NEVER ask this of a mom of a baby born before 34 weeks. Please. Never.
  2. I explained he was in the NICU. Secretly I was glad that I could explain that, that I didn't have to say he hadn't made it. I also (guessing she hadn't checked my charts) explained to her that he was born at 23 weeks.
  3. The next thing that came, after the blood pressure and weight check, was a questionnaire. "Do you breast feed or bottle feed your baby?" the nurse asked, cheerily.
    "Um... I don't know how to answer." I said, "What do you mean?"
    She paused, trying to unravel my riddle of misunderstanding. How could I misunderstand?
    "I mean, neither," I said, "I mean... um... he doesn't breast feed or bottle feed. When he's fed, he's fed through an NG tube, but he's NPO [medical speak for "not eating"] right now because he's just had surgery.  Um... but when he's fed, he's fed my milk, not formula. If that's what you meant."
    There. Now I'd covered route and what sort of milk. I think I answered her question, though I still didn't know what she'd really been asking. She scribbled down my answers and proceeded with the exam.  Thankfully my OBGYN was much more gracious, understanding, and sensitive. She even offered to always be available to me if things got too tough. "I had post-partum depression with two of my three pregnancies" she told me, "it's not a sign of weakness, it's a chemical imbalance. With all that you've gone through, it would not be surprising if you had some post-partum anxiety or depression, even six months to a year out. Keep me in mind, call me if things start to feel off."  She also advised me to have Steve (loved that she knew my spouse's name well) also keep an eye on me, if I felt comfortable having him do so, and let me know if he noticed behavioral changes. She stressed the normalcy of it.

I was so grateful, so grateful at that appointment, that my son had lived. What a horrible time that necessary medical appointment would have been if he hadn't.  If you work for an OBGYN or know someone who does -- pass this along. At the very very least, nurses should check for the gestational age at birth for their clients before calling them back.

... Now, back to the Jonathan story. ...

J resting before central line placement
By September 5 of last year, Jonathan was still putting on water weight. But he was running out of IVs, so the nurses kept saying, and we all were looking forward to the time when we wouldn't have to worry about sticking him again.  So they agreed to have him go back in to surgery to try, despite the edema, to place a central line again. As a bonus, if successful, they could draw blood off the central line port, which means he wouldn't have to always get a heel stick each night to check vitals (like blood gas and the like).

Not that he minded the heel sticks.  He actually preferred them to having tape taken off his skin. Replacing his NG tube was much more invasive, as far as he was concerned, than having his heel poked.
Soon this IV would no longer be needed, and the heel pricks
would become less frequent.
(Still such tiny toes. But they'd grown so much!)

It was at this time -- as the nurses were preparing Jonathan for transport and surgery -- that my OBGYN came by.  She saw the transport vehicle and the general chaos. She looked worried.

"Oh, no" I said, "It's not a big deal, just a central line placement."

Yes, it was surgery, but to me this was a minor one.  His life wasn't hanging in the balance. Third surgery in three weeks, and first one that didn't have us afraid for his life. I guess I was getting a little too used to this.

She didn't get to see him that day. In fact, she never got to see him as anything but a  1.25 lb baby.

Post-up and not feeling great.
But he has a cute hat, thanks to
his great-grandma
We're going to remedy that next week, finally. I'll take him to my annual.  She needs to see that the baby she so carefully delivered is okay, is thriving.

And I know that to credit her with his good health now would be to imply that any baby who didn't fare as well was her fault ... and I don't want to imply that... but I do have to thank her, really truly thank her, for the care she took removing him from me. Such very careful hands opened me up, scooped him up, cradled his head, and transported him to the neonatologists in waiting.

And he had no brain bleeds.

That's nearly unheard of for a micro-preemie, with such a small skull and everything still developing.

They found one very small sign of a possible bleed at discharge, but nothing else.

And that means better cognitive chances in the future.  I know all doctors try their very best, and their very best is sometimes not enough. But in this case, it was. And I want to show her that, to thank her for that.

Thank you, doctor, thank you for your remarkable hands.

Oh, by the way, even though my OBGYN didn't successfully see Jonathan, the central line was placed successfully, up on his right torso. Now we needed to watch diligently for infection, but he no longer needed to be poked for IVs.

This week, last year, also marked another important surgery for my family. Remember how they'd found cancer in my dad the day we got back from Europe?  This is the week when they were to go in and remove that cancer surgically.

I am pretty sure, looking at how my dad talked Jonathan, that J inspired him a bit. He rarely cried, but I saw tears come to his eyes the last time he and mom visited.

"Don't cry," my mom chided dad, "you'll see him again." He's not going to die, she willed it. So there's no need to cry at goodbyes.

"I know" dad said, "That's not it. He's just such a fighter. Such a brave little guy."

Now it was my dad's time to be brave, too. And that's hard, no matter your size.

Jonathan today. Chillin' with a teether.
(Sorry, after posting all the bad pics of him so sick from a year ago,
I feel obliged to end with a happy, healthy pic of him today.)

Wednesday, September 4, 2013

7 weeks old (30 weeks gestational age) - Shout out to respiratory therapists!

The story of Jonathan a year ago (at exactly 7 weeks old, or a gestational age of 30 weeks):
J with a Labor Day duck & his duck for size comparison. 7 wks.

Edema.  He'd shed a little water weight, they'd wean his kidney medication a little, then he'd gain water weight. He got up to somewhere around 3 lbs 13 oz. When he finally shed all that water, he was back down to 2 lbs 5 oz.  Can you imagine retaining that much extra fluid?

He was so puffed up that they couldn't put in a central line.  But he'd been on IVs for a good month and a half, and with that small body, that meant he was running out of veins that could be poked.

And of course, there was the strain all this was taking on his vital organs. His lungs, his kidney, his heart. All were at risk because of the water retention. Loose water weight too fast and the heart suffers from blood pressure changes. Processing extra water weight taxes the kidneys. Too much water retention leads to poorer lung function.

The doctors and nurses were amazing. Today, though, I'd like to praise respiratory therapists. These are the folks that (in our hospital at least) come around in green scrubs and make you breath right, be it through tubes forced down your throat or by administering nebulizer treatments.

I found green scrubs at Build-A-Bear around Halloween last year. I joked that I should buy them for Jonathan for his Halloween costume, because what could be scarier to a NICU baby than a respiratory therapist?  Those were the folks who regularly came and suctioned out his lungs and poked and prodded him.

And saved his life. Over and over again.

One of his respiratory therapists was a designated problem solver. If the baby's breathing declined rapidly, she wasn't content to say it was decreased lung function. She would twist knobs, re-position breathing tubes, suction and re-suction until she found what the problem was, until the baby started breathing right again. I saw her spend a half an hour with Jonathan, only to come back an hour later and make sure her fix had really worked.

People like that amazed me.

And a year ago, that's what Jonathan needed. A respiratory therapist to trouble-shoot.  Read what happened, as told by (dad) Steve on our care page:

Written September 3, 2012 8:58am by Steve
The last few days have been a respiratory adventure for J.  About two days ago, quite suddenly, he needed much higher oxygen and lung pressure to keep stable, and that seemed to continue for a day or so.  Two nights ago, his respiratory therapist decided she was going to go all out trying to clear out his lungs and that seemed to help a lot.  He quickly dropped from having to breathe 80 to 100% oxygen to getting by on normal air 21% oxygen.  

Over the last 12 hours or so, his vent settings have improved considerably, though the doctors are still worried about his lungs and are monitoring them closely.

Over the last day, J has also gained weight, which is not good.  He should be losing weight as the water he has been retaining comes off.  So now that is the biggest concern in the short term.  His swelling/water retention is preventing them from being able to put in a PIC line like they want to, his IV's keep going bad, and the retained water is bad for his lungs.

All said though, we are happy that he has been more alert over the last day, and acting more like himself. 

THANK YOU, respiratory therapists!
I may have made fun of you and your green scrubs, but you folks are amazing.


These days (a year later):\
Jonathan is really really proud of himself for his ability to roll around to wherever he wants to go on the carpet. He loves exploring, grabbing his toes, babbling, and tickles.  He's very pleased that he moved from his blanket to my feet while I wrote this blog. He just wanted you to know that. He says "ahhhbwaahhhh aahiii," which is baby speak for "I'm amazing."

Steve looked at him a few days ago and said, "You know, buddy, I start to worry about you -- whether you'll ever play with your toes, or roll over, or push yourself up on tummy time, or sit -- and then, just like that, you do it, like 'You didn't need to worry dad.'"

We're still a bit amazed at Jonathan. Steve asked last night if we thought it would ever wear off, the novelty of him, the miracle of his existence. Some days it does. He's just a baby. We happily choose to forget the NICU.  And then it hits us -- this baby talks. He eats. He might some day walk. He sees. A year ago, we just prayed he'd survive. We assumed he might not eat until two or three years old, we were prepared for him to never walk and possibly never talk.  Had he been born before the invention of laser eye surgery, he would be legally blind now (more on that story later this month).  There's something amazing in all this.

Photo: And you, sir father, shall be my side kick.
1 yr & 7 wks old
(almost 14 months)
It's the start of a new school year, which means he gets a new "teacher."  The state we're in offers special education for 0-21. He's considered a special education child because of his early birth. He'll be enrolled in special classes until two or three. This helps him get the services he needs so that he can catch up to his actual age.  He's thirteen, almost fourteen months and still not crawling and barely sitting. His "teacher" (a physical therapist) will come to our home once a week.

He's not dealing with many other issues now. He's still ridiculously small.  Nothing like his 3 lb (or 2 lb + water weight) self from last year, but still tiny even for his adjusted age. The weather is starting to turn a little, so we put him in the same comfy sleeper (size 0-3 months) that he wore last spring.  Yep. He still fits.   Oh, and there's a problem with all this smallness, too.  He's still in size 1 shoes for babies. And he's learning to stand and walk. Do you know what size one shoes for babies are for? Decoration only. Finding ones that he can walk in that are ALSO as skinny as his little feet has proved a challenge. It's fine now, while he can still walk in booties and socks, but come winter we'll have a new challenge.

Oh well, we'll take it. We worry, all preemie parents do, but we spend more time just enjoying this kid for who he is -- for all he is.