RSV season has begun

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

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

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

Thus, a week earlier than aanticipated, we go into hiding.

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

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

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

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

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

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

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

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

So, in short, we're pleased.

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

JAMin' with the sisters.

DARN CUTE, that's what.

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

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

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

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

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

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

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

Yep, dad, I'll stay small. Whatever you say!

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

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

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

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

Blessings and a Plea

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

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

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

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

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

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

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

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

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A Plea.

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

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

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

I've almost been there.  For so much of their story, I've almost been there.  I remember looking down on a swollen Jonathan and tearfully finally understanding why God could let babies die. I understood how a loving God would save us, when all else failed, save us from the unbearable pain of life. I prayed he wouldn't. I told Jonathan to hang in there, promised him that life got better than the tubes and swelling, but I understood that death might happen. So as I've read their newly arrived and newly departed son's story, I've wept hard.

I never had to ask for money to help cover JAM's costs. I'm so grateful for that. So so many of you that knew me well asked if you could help, and I said you could just pray. Or watch my girls. Or hug us hard. But I didn't have to ask for funds.

If you still wish you could have done more for us back then, will you consider giving to this family instead?  Enough individuals check this blog regularly that I think if everyone who followed faithfully gave $20 USD, or the equivalent of taking a family out for fast food, we'd raise over a grand -- maybe two grand -- to help cover their unexpected costs. What a blessing that would be.  What a miracle we could be.

If you want to help, but feel funny giving to a family you don't know, tell them you're giving in honor of their sons, and in honor of babies like them who have had to fight.  You can even name JAM if you want to.

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

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

The Philosophy of Trees -- Retinopathy of Prematurity and Perception

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

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

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

Don't have a picture to illustrate this, so here's a picture
of JAM with a famous philosopher.
Bonus points if you can recognize the philosopher.
(Don't worry, not the philosopher who taught me.)

And so we spent somewhere between three and five class periods -- that's OVER A WEEK -- on whether the color I see as red is the same as the color you see as red, or if what I see as red you would perceive as green or blue or purple.

It was dumb.

I would not be majoring in philosophy.

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

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

Jonathan a year ago, recovering from eye surgery.

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

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

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

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

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

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

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

Spoiler alert.

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

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

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

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

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

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

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

Here's what other parents said when I asked what they wanted these students to know:

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

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

See?:

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

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

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

And then there's other things that I touched on but didn't highlight.

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

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

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

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

I didn't tell them so much.

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

Day 76: An unexpected surgery - Rush ROP+

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And I wasn't kidding.

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

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

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

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

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

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

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

34 weeks - Good days - breathing on his own (for a moment) and not needing IV nutrition

Woah. Something different is happening here.

On September 30th of a year ago, by 10 weeks and five days old, or a gestational age of about 34 weeks, Jonathan finally got a break from breathing support.  For his evening cares the nurse and I gave him a sponge bath and changed his diaper, all without the help of extra air and pressure. And then we weighed him. Two pounds, 13 ounces and 15 inches long. He was growing (and this time it wasn't all water weight), and he was breathing.  I took lots of pictures. I wished Steve were with me for this. I took a picture of the monitor. Against hospital policies (no images of medical equipment) but I had to show Steve. 161 beats per minute. Oxygen at 90% and climbing, and respiration steady and full at 58 breaths per minute.  It was like this for ten minutes. Then he went back on CPAP.  It still took too much work to breath like that on his own.

Steve had promised him that if he could breathe on his on, he would be free of all the stuff on his face, so it's no surprise that when we put the CPAP back on his face, we got cries.  Still barely audible squeals as his vocal chords continued to heal from intubation, but there they were. CRIES.

My son had an opinion. He was voicing it. I discovered that a crying baby really is a gift, sometimes.

He was also taking all his nutrition from my milk. The doctors believed he was showing that he could digest it well, despite the ileostomy, and so he was off TPN and lipids, again for the first time.  This was so good, as TPN (while a necssary IV addition for nutrition in most micropreemies) can damage the liver over time.

There were small concerns that he might be ill, as he was acting a little touchy, but the nurses were keeping a vigilant eye on things, so over all his progress was very very good.

He got moved from a z-flow mattress (like a memory foam mattress for preemies) to a swaddler, as he was now old enough and stable enough for the new bed.

On days like this, I danced home.

A day later, the colors of the world would change again.