Comparing

Last year not-smiling

Parenting rule #2:  Don't compare. Just don't. Unless you're comparing your own child to themselves.

Granted, no parent actually FOLLOWS this rule, but we know we should. And that is at least something.

JAM weighs a hefty 18 lbs 4 oz at two years old. We're not thrilled because that's a horrible gain in the last year. (See? I'm only comparing him to himself! What a good parent I am.) I'm not concerned any more, though, since the amazing nephrologist just recently figured out all that "failure to thrive" stuff.

This year not-smiling (see mom, I grew THIS much)

There are a few plus sides to being small. T-shirts last longer.The pictures below are from his first birthday AND his second birthday -- same shirt. And, at least he's behaving developmentally appropriately (he's advanced even) for his appearance.  He looks like about a 12 month old now, don't you think? That's what our neighbor guessed when we told her it was his birthday today.

Last year's smiles: part 1

He deserves an extra year. At birth he was 4 months behind his peers. Then he had six surgeries before discharge. I figure every surgery puts me around a month behind -- so there's another six months. Well, we'll say five, since one was "merely" eye surgery, and he's a kid, so he heals faster than us adults. Add two more major surgeries before he was one, each requiring about a month of healing, and you've got a total of eleven months of disadvantaged environments in his first twelve months of life. Ugh. Math only leaves him one good month in that first year. (I'm guessing that was the month of May.)

Okay, so that's rough. Then add to that that in his second year of life he spent most of the time undernourished and exhausted, with his body stealing from his muscles and bones to keep his pH closer to balanced -- and you'd expect to see a kid who is just barely hanging in there.

But that's not the kid we see. (Anymore.) Our child is doing so remarkably well considering it all. There were moments in the last few months where we were really really concerned, where I cried tears of frustration and hurt at the small tired baby that lay staring at the light because his energy reserves were gone. But then, even then,  he'd bounce back up again, moments later, and trot around the room on all fours, his head high like he was showing off for the world. His spirit was not crushed. Perhaps this babe has figured out the secret of how to live on love alone.

Next year, bud, next year we'll add good-old-fashion nutrition to all that love friends and family have poured on you. Next year is going to be amazing. You'll finally outgrow that shirt.

Last year's smiles: part 2

This year's fuzzy smiles

Last year: awkward pose

This year: awkward pose part 1

This year: awkward pose part 2

Bonus picture. (This year.) I love this kid.

Becoming the patient - How being a preemie parent changed my perspective on healthcare.

Being a preemie parent -- or the parent of any medically fragile, medically complex child -- changes your perspective on things.

As of yesterday morning we'd been to the ER (emergency room) a total of three times this summer. Twice for J's severe illnesses, once for his older sister's broken arm.  That's more than the previous three years combined.

Yesterday we added one more ER visit and I became the patient. It was a dumb injury. I tripped on an uneven sidewalk. I was carrying JAM. I protected his head and body with my arms, so I didn't have anything to stop my fall. My knee fell on another piece of uneven concrete that acted like a knife, cutting a 5 cm gap in my knee. I knew immediately that J was scared and I was more badly injured than just a scrape I could walk off. Thankfully, my brother had just turned the corner down the same street and saw us fall. He acted as a first responder and took me to the ER, my sister-in-law took the other kids home, including an utterly unharmed Jonathan. I did my job well. My baby was safe. (I will wear my scar as a badge of honor.)

The admitting nurse asked to look at the injury. I lifted the towel. She looked shocked and immediately covered up my wound again. Yes, I know, that there is nearly entirely exposed kneecap. That's how I knew I needed to go to the ER. That one isn't going to heal itself. She told me it was one of the worst lacerations she'd seen. I thought "no, this isn't THAT bad. Looks pretty clean to me. Besides, I'm not in any danger here. It just hurts."

Yep, being a preemie parent changed me. I'm a bit tougher. After all, it's a knee. It's not NEC.

Ways being a preemie parent changed my experience in the ER:

1. They asked me my date of birth at registration. I gave Jonathan's DoB and then realized I was older than two.

2. It ain't a "medical emergency" unless you need to be sedated or put on oxygen. This here was just an inconvenience.

3. I automatically interpret numbers on the machines, it's second nature now. "Oh good. My blood pressure is pretty close to normal and my blood oxygen only a little lower than usual, but still in a normal range, so I am actually handling this fall pretty well. Guess I'm not going into much shock."

4. I understand the medical wards better. I knew why they got me in fast - I was the scariest one in the waiting room - and I suspected that if the child with burns had come in ten seconds earlier, my wait would have been about eight minutes longer. And I wouldn't have minded a bit.

5. In general I have a lot more patience and am a lot less demanding -- I know what to expect now.  They're not going to give me sprite until they see if I need surgery, so there's no sense in asking until I'm no longer NPO.

6. At the same time, I also know when I need to ask questions and how to answer their questions.  I feel like I'm part of the medical team now, from the moment I walk in. Being dramatic doesn't do anyone good. Unless you are afraid you're bleeding out on the sidewalk with only your infant around. Then, by all means, one should scream as loud as possible (and I did). But once they're attending to you? Keep to the facts and be honest about how you're feeling.

7. I notice cleanliness. Yes, nurses, I saw when you didn't put on hand sanitizer as you walked in the room. I also notice when nurses put on gloves and then rummage around opening and shutting eight different drawers trying to get the bandage for my hand ready. Yes, I know you're protecting yourself -- but if you'd first gotten out the bandage and set it aside and THEN put on the gloves, you'd be helping protect ME, too. I don't think I would have noticed before. Yes, I know this isn't a sterile procedure, but we're in the ER, and there are lots of germs around. And this here is an open wound. (They were a lot more careful and absolutely sterile when dealing with my knee -- as that was a surgery and not just a band-aid.)

8. I've seen a lot of medical procedures over the last two years. And the short of it is, I'm used to blood and needles. As such, I thought it was kinda fun to watch myself get stitched up with two layers of stitches. It's all super interesting, once you get over the shock.

The one thing that hasn't changed: I still make really bad jokes when I'm in pain. I inherited that from my father.

"This wound is 5 cm."
"Oh, good, I'm half way to having this baby then."

...

Really?  I really thought THAT was an appropriate response?

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For those of you with medically complex kids: how has parenting changed your perspective on medicine and doctor's offices?

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.

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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.

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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.