What is a miracle?

We are still in the throws of preparing to move. It's just enough of a messy process that we hope this is it - both that our home has finally sold (we have an offer on the table) AND that we don't ever.have.to.do.this.again. [Punctuation placed liberally to tell you just.how.done.with.this.I.feel.]

Jonathan is doing very well. He is a trickster and today's trick was standing, by himself, for one whole second. He was so proud.  Maybe he'll be walking by himself before this last season of quarantine is over. Maybe we'll surprise everyone when we reemerge from our winter hibernation.

In the mean time, take a look at my post on the Hand to Hold blog, where I discuss coming to term with the term "miracle" that is used liberally by doctors and friends alike to describe my son. You might be surprised, but I don't like the term. Read here to find out why.

It doesn't take a preemie to be given "a miracle."
You're just more aware of what a miracle life is when you've got a preemie.

18 months old - Cognitive Dissonance

My son is a year and a half old today.

I look at pictures of him just after birth, and then pictures of him after coming home, and I cannot reconcile the two. The son on the right and the son on the left in the picture below are the same son -- but in my mind they are from two different worlds, with two different sets of hopes and dreams.

You weren't that pretty when you were born, but you've come a long way, dear boy.

Welcome to your toddler years!

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.

Day 20 - A matter of heart.

A year ago we'd discovered that Jonathan's PDA, which had initially responded well to the drug therapy but not entirely closed, had now reopened.

The doctors were split about what to do. About half the team suggested letting him grow bigger and then assessing the need to repair. Bigger babies have an easier time with surgeries. The other half worried that not repairing it would compromise his blood flow and make it harder to sustain his life.

We were glad for a team approach to medicine. So glad.

Looking back I see that, for one, it meant our doctor would not try to determine Jonathan's worth and pressure us to make decisions we weren't comfortable with. Not that I had that on my mind at the time, nor did he ever pressure us in this way, but I watched this documentary called "Little Man" a long time after J's birth, and the doctor in THAT film was so horrid about what the parents should do (or not do) for their son. I was so glad that my neonatoligsts weren't like that doctor.

A year ago today I didn't really know what Jonathan's primary doctor was like. I had pictures of him resuscitating my son, pictures that Steve had hastily snapped while trying to remain unobtrusive while I was being sewn up after surgery, but I had little data about him. Oh, I knew a little. When the social worker took me to pick out a quilt for Jonathan, donated by sweet sewing souls in our area, she mentioned that he had a sense of humor. And liked trains and cars. I was sure to pick a quilt with trains and cars. But that's about it.

He hadn't really been present since Jonathan's birth. It was mostly due to poor timing. He'd gone on vacation three or four days after J's birth, and hadn't returned. We hadn't really seen him before he left, either, though, other than at delivery and a glimpse a day later of him charting outside our room. He never came in. Not while we were there. I wondered at his distance. Did he purposefully remain away those first few days before vacation because he knew the likelihood of J's sustained life after his time away was slim?  He had seen a lot of babies not make it. Did he not want us to ask if our son would live? We knew better. But he didn't know that.

The team approach meant J didn't have one doctor, he had six or seven. And many of them were present (and not on vacation. They made a point to come in and warmly greet us and comment on his size or personality or preferences. They seemed to care.

With a split team, though, we weren't going to do anything about Jonathan's heart. When the situation presented itself better, they would then make a decision about closed heart surgery to fix the PDA. Maybe new information days or weeks later would tip the scale. For the time, though, all we knew was that his heart wasn't working as well as it could. Maybe that's part of why his lungs weren't working as well, too.

But he was still alive.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Not sure I'm happy with this, mom

TODAY - 2013

J finally got to meet his other male cousin, JB, today.  JB is a four year old who has been praying for him since birth.  Who can blame little JB for praying?  I mean, he has EIGHT other cousins, all girls. In some sense, it probably felt like J was his only chance of playing guy games.  That's at least a year off yet, but it'll come.

J himself was crabby yesterday and today. Unusually so.  He smiled once for his uncle, but then threw up on him a minute later. So I'm not sure what that smile REALLY meant.

This afternoon he cut his first tooth. Teeth, actually.  Two ragged edges poking up from his lower jaw.

No wonder the poor guy was crabby.

Okay, happy now!

After that, he was all smiles and showed off for his grandparents. He rolled all over the floor, grabbed his feet, passed teething biscuits from one hand to the other and then stuffed them in his face (gotta use those teeth after all), and all in all charmed everyone he met.
--------------------
Tonight before blogging, I read this article.

I've written about our choice to resuscitate and the difficult decision that can be, so you can probably guess my response.  I thought, "Wow, she makes the temporary seem so grim."

She sees only the smallest part of a portrait. She needs to re-frame the image and see a larger picture. Does she not remember that this is life we are talking about? Potential for life -- good, full life?

Yes, parents must know that there may be disabilities. Yes, we SHOULD be well-informed. But this article is so horrific. It forgets about the hope each day of life brings. It almost makes it sound like parents aren't ready and would make a different decision if they really understood.

We weren't ready. No. Who could be?  But we were well informed. Now, a year later, we would not have changed our minds with any more information. You'll see, if you keep reading or if you know us, it wasn't a walk in a park of a year, either.

J won't remember his pricks or the pain he went through. How much do you remember of your first three to five months of life?  J's dad was a preemie, too (for unrelated reasons) and has some similar scars. He doesn't remember getting any of them. He carried his prematurity through his early childhood (and in some ways into adulthood), but he still enjoyed being a kid. He's a doctor now. Dependent on a med or two as a  yes, but he's had a really good life.

The PT told mommy I had to experience different textures.
I'm like a scientist, figuring out the world.

She forgets that in this article, that the pain is temporary. The disabilities, if they come, may continue for years or a life time, but the pain doesn't usually last. She forgets or doesn't know  that the disabled among us are not without great worth.

If all goes well some day that micro preemie will be a four year old, sitting in the sun on a beach, enjoying the breeze. He might even be doing so with eyes that see and feet that run and arms that swim. But even if not, he'll be alive, and the same breeze that floats across my brow will hit his. And he may giggle. And the fight - it is hard, yes. She describes me and my son perfectly. Brain bleeds (only one, and small), bowel perforation, yep, post traumatic stress, yes. All of that. But the fight - the fight is worth it.

We think this, and we're only 7.5 months out of the NICU. Scars fade. Hope remains.

Thanks, docs, for giving the choice to us.

Chil'axing, with arms flying like only preemies can!
I love having my arms out to the side.
Mr. Jason, the physical therapist, says it's a preemie thing.

Day 8 - Of babies, plants, and Ph levels: growing in hard conditions

When we bought our first house (our only house), we bought it for the spacious back yard. It was February. The house we were renting had had a patch of raspberries in the back yard, and fertile soil all around.  But the yard was small. We figured we'd have the same good soil at our new house only a few miles away, and lots more of it. After all, the land it was on had been farm country not too many decades before.

Except that they'd sold off the top soil.  We discovered this in May when we went to plant. We lived on clay.  A nice large lot of clay.

So I've spent the last four and a half years amending that clay. We built a raised bed and added soil. We invested in a composter and have slowly turned our kitchen scraps into more soil.  We have bought hardy plants like raspberry bushes and mint that will grow anywhere. We've learned to make it work.

And we've made some mistakes.

Like me mistakenly thinking that blueberry bushes would be very nice along the side of the house, they'd give such a nice red foliage in the fall and berries in the spring.

Foliage, yes, but berries, no. Blueberries don't like clay.  I'd known that much and dug them a pit of peat moss. They also like acidic soil. You know, like the kind of soil you'd get in a pine forest. Not the alkaline soil that surrounds a house due to the lime in the foundation.

After two years of amending the soil in the bed by the house to make it more acidic and less alkaline, but with no berries to show for it, my daughters and I decided to do a science experiment and see how acidic the soil was.

The answer: not at all acidic. The measures we'd taken hadn't lowered the alkaline levels at all.

So we made a new trench of peat moss in the back yard, under where a pine tree had been just a few years before. We replanted the blueberries. The first year after the replanting we had a few handful of berries to show. This year the rabbits thought it would be helpful to trim the bushes for us over the winter, so we have no berries to show. But the plants (even with the trimming) are healthier. And next year, I am hopeful that we'll finally bring in a crop of berries.

~~~~~~~~~~~~~~~~~~~~~~

Hang in there buddy! J at 8 days old.

About a year ago I learned we have Ph levels too. And Jonathan's were off. In the NICU they'd test the levels in his blood.  They then design his total perenteral nutrition (TPN) to help keep the levels where they wanted them. TPN was like Jonathan's IV version of Gatorade. And without it, he wouldn't have grown.

The girls and I had had a little tablet, soil, and a small vial to test the soil. I don't know how they tested his blood, but the results were the same: the conditions weren't great for growing, so we needed to find a way to help improve growing conditions.

And for both my berries and my bitty baby -- it has taken time. Longer than if they'd started out in an ideal environment.

But both have proven to be hardy.

I guess we are more like plants than I thought. I am amazed by modern medicine. I am amazed by science.

=====================
July 2013 -- a year later

Ella is my 6 year old. She coped with the insanity of last year by educating herself. She used all available resources to figure out as much as she could about Jonathan's life and care.

The result was one sturdy six year old who is terribly interested in medicine and science.

We saw a "Squishy Human Body" at a specialty store last weekend. That got Ella and her twelve year old cousin to talking. Ella wanted that squishy human body SOOO bad, so that she could learn all about anatomy and practice doing surgery. Bec thought it was a disgusting proposition. "Ewww" she said.

"What?" Ella replied, "It's just blood! Everybody has blood. Some people think it's disgusting, but we need it to live, so I don't think there's anything wrong with it. It doesn't bother me!"

Today she asked if she could watch a YouTube video with me on how to change his feeding tube. I said no.  Not because I am afraid of exposing her to that sort of thing, but because I'm afraid that if she watches the video, she'll think she can change her brother's feeding tube herself. Thing is, she probably could. But let's not chance it.

Day 7- One week old and looking good!

A year ago today Jonathan had made it a week!  That means that by every account, he was official. And it meant maybe he would live. He had had a week of milk, off and on, and hadn't gotten that terrible bowel thing that kills preemies. (For those just tuning in -- I'd read a blog about a baby born at 23 weeks when I was just about to deliver my baby. That baby had died shortly after they'd introduced milk to his diet so this was my biggest fear for my son.  I'd find out later that that bowel thing was called Necrotizing Enterocolitis.)

The breathing machine had his lungs. His heart had always been able to beat -- and ever since they got his blood pressure under control, that was working. And he was eating. And starting, after falling to 485 grams (1 lb 1oz), finally starting to gain weight again.  His blood ph levels had been a little off, but had gone back to normal. He had had a brain ultrasound and it had revealed no brain b
leeds.

Things were looking good.

His umblilical line had closed.  Up until this point, they'd been able to use his umbilical cord as a sort of port, so he hadn't had to be stuck with a needle to administer the perenteral nutrition into his blood that was necessary to sustain him.  So they'd first given him a small IV and then within a few days (when it was clear he wasn't getting the nasty infection I had) he would be given a more stable PICC line to get him IV nutrition.  They were even talking about moving him to a less invasive breathing machine.  Maybe he'd come off the vent.

J is awake here. You can't tell 'cause his eyes are still fused shut.

We got to be a part of his care time for the first time a year ago today. I never thought I'd be so excited to change a diaper. He'd been alive a week and I'd never gotten to try.  His preemie diapers were the smallest size possible, but we still had to fold them down to make them fit.  My wedding band is a small size (less than a six) but it fit his upper arm.

My mom took our girls for the night, and Steve and I celebrated our eighth anniversary at his bedside.

J after care time, tucked in for the night.

Choice

July 16, 2012 

 A neonatologist came in. He sat down with Steve and I and started to explain what having a baby at 23 weeks meant.

He told us that for a 23 week baby, the doctors consult with the parents to decide what should be done.  We had to decide if he was to be resuscitated and put in a NICU or if we let him pass in our arms after birth.  But we needed to understand what our choice meant. A week earlier, and he would have been named a still birth. A week later, and the medical profession resuscitates. We were in a gray period.  That is why the neonatologist was in my hospital room.

He told us that at his hospital, a little under 50% of these 23 weekers survived.

"Just under 50%?!?" I exclaimed, "That's FANTASTIC."

He looked a bit taken back. "Everything I've read says more like 20% on the high end of things," I said.

He also explained that the risk of disability was very high. Something like 75% would have severe disabilities that they took through life with them.  Around 20% might have glasses or asthma. Maybe the top 2 to 5 % would outgrow the difficulties of prematurity by the time they were two or three years old.  

"I've worked with adults with severe disabilities," I said, looking up at Steve for confirmation that I was going the right way with this, "If he ends up non-verbal and non-ambulatory, I still want him to have life." Steve nodded.

Life, that's what we wanted. If he would be happy, we would be okay -- even if his happiness came with severe mental or physical disability (or both).  I pictured my old friend Lester, a 40 year old non-ambulatory, non-verbal adult. He liked to swim. He loved to watch the shadows dance. He'd even throw his hands in front of his face and wave them like a mad man to see the show.  He laughed, a lot. He liked animals.  He loved any joke that involved bodily functions. He loved life.

And he taught me how to love life better, too.

I pictured my son, seven years old, reclined in a wheelchair and watching the leaves dance in front of his eyes on a breezy summer day.  If there was a chance at that, even a less-than-50% chance, I was taking it. For him.

After the doctor left, I chatted with Steve some more. There was no doubt, in either of our minds, we wanted this child to be resuscitated after birth.

~~~~~~~~~~~~~

TODAY, July 14, 2013
It looks like Jonathan won't be wheel-chair bound. Cerebral palsy seems not to be his road. And while we can't be absolutely certain, he's meeting all his social and emotional milestones, so even cognitively he is more on track than we expected a year ago.

He still reminds me of Lester, though, and that makes me smile.  Like Lester, he loves his hands.  He stares at them all the time. Two days ago Jonathan stared out the window. A breeze came by. He started laughing. 

The sunlight was shining through the moving leaves, making shadows. He and Lester would get along well.

It is good to be alive.

For more on the complexity and various opinions of resuscitating a 23 weeker, please see my earlier post here.

For other posts about the difficult choices people have made, please visit ellenstumbo.com and read responses to her writing prompt "choice."

By way of introduction

There are times in your life when you realize this might just be the last chance you have to do something -- so you go for it.  Even if it doesn't make exact sense, you rationalize that this is the last chance you'll get, so you might as well try to follow the dream.

Bulgaria - 20 weeks pregnant, 6 days before bed rest.

 That was me a year ago, June 25, 2012.  I was in Europe, enjoying the mountains of Bulgaria with my brother and his family. This trip was my crazy dream. My husband had just finished up a conference in Scotland and had joined us.

I wasn't going to join him in this business trip overseas, not initially.  When his paper was accepted to the Scotland conference, I assumed I'd be jealously staring at the pictures on a computer screen with my daughters in the heartland of America.  This was not for Steve's lack of trying.  He was accepted six months before the conference, and within a week he had approached my parents to see if they'd like to have Grandparent Camp at their house for a week so we could tag a spousal vacation to the end of the conference.  I had pointed practically at the bottom line of our bank account -- which wasn't very large -- and said that maybe we should save our money until we had a little more.  Maybe next time.

In late February my period was late.  In early March, I received a positive pregnancy test.  I looked at my adorable two daughters, Ella my five year old and Mimi my three year old, and I realized that one more added to this mix would be one too many for Grandparent Camp.  Plus, it would be years before this third child was old enough for a week-long sleepover, and with a child on the way it would be even more years before we could afford to bring all the kids with us on an overseas adventure.  It was take a vacation together now, or wait until the kids all graduate.  And once we'd jumped the pond, it only made sense to take a relatively short flight to see my brother's family on the other side of Europe.  So I went.

Steve's Scotland conference fell on the 19th week of my pregnancy.  The timing couldn't have been better.  Morning sickness passed about a month earlier, and I was feeling good.  My OBGYN gave me her blessing and admitted she was a little jealous.  The second trimester was a great time to go, and this pregnancy looked good.  I debated waiting until after the trip to get my 20 week ultrasound done, but there was a slot opened the day before our departure, so I snuck it in.  Thus, I was in Bulgaria with a roll full of pictures of my  baby-to-be, sharing them not only with my brother and his family, but with his in-laws in his wife's former village. It's a boy, I proclaimed. A perfect, healthy baby boy. And then I had an extra helping of shopska salad. I wasn't a pig, the ultrasound justified it.

I walked the mountains positively glowing. Well, besides the nasty cough from a bout of bronchitis, I was absolutely glowing. Besides the glowing and the involuntary holding of my belly, strangers probably couldn't tell I was pregnant. I just looked like an overweight American.  My neices and my sister-in-law wanted to feel the little guy, but he never kicked hard enough for them to feel. Toward the end of the trip I started to feel him more and more. He was quite the jumping bean when he got moving. I was even sure I felt his full back on the palm of my hand at one point.

"The last part of this pregnancy is going to be hard on my body, with a kid this active!" I thought.  But that was four and a half months away.  For now, I had energy, I had my appetite, and I had a buffet of Mediterranean food surrounding me daily -- a fresh fruit market around the corner and a pastry shop two blocks away.  Life was fantastic.

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

A year later and I have an 11 month old baby boy. Actually, 11 and a half months.  It's hard to believe he's that old.  He's still wearing three to six month clothing, and his feet just surpassed his sisters' newborn footprints. 

Today, June 22, we're camping.  This isn't Camp Grandma, it's a real out-doors camping trip -- except for the overnight part.  We've got to keep him away from too much smoke because of his lungs, so we went up for the day, hung out with friends, and are just about to head home.

(This isn't actually the camping trip)

We sit in a circle singing songs while the sun begins to sink over the water.  My husband is a part of the full circle of 20 or so people, my daughters are sitting in a  little-kid inner circle alternating between taking "selfie" pictures with my camera, and artistically capturing the grass.  Thank goodness for digital cameras, no film is being wasted.

I'm on a blanket with Jonathan behind the main circle, trying to hide the fact that I'm feeding him through his feeding tube.  He's getting to the point where he barely needs the tube, but the humidity of the day has impacted his lungs just enough to make him borderline tachypnic.

Tachypnic -- one of about three dozen new words I've learned over the past year.  I already had a masters in teaching English to speakers of other languages (TESOL), and over the past year I've mastered speaking Medical to doctors of many disciplines (SMDMD). Tachypnic here means 'breathing too fast to take a bottle but otherwise not really in any serious respiratory distress.'  It's a place Jonathan likes to hang out, hence the feeding tube.  But we'll get to that more in about eight months time.

================================

Welcome to my blog.  This is a look back at the past year, with occasional glances at the present time.  It is my attempt to make some sense of the past year, because making sense of it all is a sort of therapy for me.

As you see, a year ago I was half way into a picture perfect pregnancy, complete with morning sickness, baby flutters, braxton hicks contractions and just one or two first trimester scares.  It was my third pregnancy, so I knew the drill. But then suddenly I didn't.  I had a normal pregnancy up until this day a year ago.  Within a week I would be considered a high-risk pregnancy.  We don't really know why.  I started searching the internet, suddenly very interested in birth stories from early preemies.  I ran into a lot of sad stories, and desperately did not want my son to become another one of those stories.

But he came early.  [Spoiler alert.] My son was born 17 weeks early, at a gestational age of 23 weeks -- a grey period in the life of a preterm infant, where viability of the infant is at the very earliest end of "marginal viability" and where it is assumed that any infant that lives will live with disabilities that carry with them through life.  A study from 1996 states that the chances of survival for these 23 weekers is about 5%.  My NICU said their rates of survival were just under 50%.  Either way, this isn't a great way to enter the world.

My history professor in college said he knew when the Cold War was over because he found he could start writing about it.  Jonathan (or JAM) has finished his NICU journey, and has started on a new chapter of his life. I know the worst is over, because I can start writing about it. He won't remember this time, and a significant part of me is jealous of this.  That said, despite the hard times, I do not want to forget the lessons I've learned.  And so, I blog.

This is about my son, but also about how his life, even before he could open his eyes, had impacted ours.  This is Jonathan's journey.  Or, since that blog name has already been taken, welcome to JAM Sessions: Lessons Learned through a 23 Week Micro-Preemie.