A Letter to Parents of Micro Preemies

(This is just a rough draft of something I might say to a parent who’s about to deliver a micro-preemie)
Dear Parent,

My twin boys were born at Alta Bates at just 25 weeks’ 3 days’ gestation. Prior to that, I spent 8 days in the antepartum unit. During that time, my obstetrician asked the doctors who care for premature babies to talk to me.

My husband and I had very different attitudes about how we wanted to receive information. I wanted information on a “need to know” basis, based on what was happening with my particular babies, not what might happen to a baby similar to mine.

I don’t know what you’re going through, but I know what I went through.

If you’re a parent of a preemie, this is what I want you to know:
I want you to know that they have perfectly shaped fingernails.

I want you to know that it is possible to feel love for something that doesn’t look like a baby.

I want you to know that when they cry, it squeaks and it breaks your heart.

That sometimes they grab your finger like they know who you are.

That sometimes they look like they’re in pain.

That sometimes they look like they’ll never get better.

That sometimes they are more resilient than you can ever imagine is humanly possible.


If you’re a parent of a preemie, this is what you need to know:
You need to know that you might have to hear the same information 4 or 5 times before it sinks in.

You need to know that you might have to make work sacrifices that you didn’t think were possible.

You need to know what kind of things will help you during stressful situations.

You need to know that your mental well being can affect your physical well being and even the well being of your baby.

You need to know that sometimes more information makes you feel even worse.

You need to know that sometimes ignoring information can leave you unprepared.

You need to know that, whatever happens, this experience will change your life forever. Now that I am on the other side, I feel that I have a wisdom, a patience, a reverence for life, and intense feeling of happiness and gratitude that I never imagined were possible.

You need to know that not everyone feels this way.

Toddler Math

Oops.  So much for posting once a week.

My sister was here last week. On the first day she babysat, following the twins from room to room as they systematically pulled books off of shelves, clothes out of drawers, and Tupperware out of cupboards. At first she took pictures because baby messes are cute if it’s the kind of thing you see less often than Halley’s Comet. But quickly my sister discovered that in the time it took for her to straighten up one room, they had already messed up four others. And with the head start they had gotten with the impromptu photo shoot, she’d never catch up unless she strapped them down.

Of course, this is just because my sister cannot do Toddler Math.

Toddler Math is the ability to determine things like the number of snacks plus grown-up breakfasts yielded by 2/3 of a box of Cheerios. Or the ability to divine how many errands (including looking for parking) one can fit between the morning nap and the afternoon nap.*

Other kinds of Toddler Math include knowing how many wipes you need to last until Wednesday, how many times your baby will scream bloody murder before he means really means it, and knowing when to feed your kid so that his first poo happens on the babysitter’s watch.

On the day my sister babysat, she was faced with the kind of Toddler Math parents knows as Clean Up Factorization: the amount of time it takes to make a mess divided by the time it takes to clean it up. Obviously we’re shooting for a 1 or higher. Throwing a sippy cup from the highchair is a .93 whereas opening a jar of honey is a number in the billions. Some messes vary depending on the context and circumstance. For example, giving a child a bath can be any number between .12 and 28, depending on the length of the bath and your tolerance for wet spots that will eventually dry on their own. A laundry basket full of clean clothes is pretty close to 1 unless the clothes are folded. In that case, it’s like dividing by zero—the time it takes to empty it a basket of clean clothes is 2.6 seconds; the time to finish filling it up again with folded clothes can sometimes span decades. That’s why moms with kids under the age of 26 don’t bother to fold clean clothes.

* Answer: Exactly 1 errand. Unless you have twins, in which case the number errands is .3895. (Taking into consideration that the errand likely involves a minivan double load-up to start, a minivan-to-stroller double unload/load arriving at the destination with a stroller-to-minivan double unload/load to head back home, and closing with a minivan double unload, plus looking for parking on either end.) If it’s a walking errand involving one stroller double load and one stroller double unload, you can complete exactly 1 errand between the morning and afternoon naps.

Sharing as a Family

Today we had our first Family Advisory Council meeting.  Alta Bates, our hospital in Berkeley, practices what is known in the medical world as “Family Centered Care” (sometimes also known as Patient Centered Care).  It means that rather than treating conditions and diseases, the doctors and nurses treat patients and families.  In the old days, doctors learned specialty: stomachs or livers or cancers or birthin’ babies.  They learned about ideal cases and exception cases and various treatments, etc.  And of course, they still do.  But it turns out that people get better faster when they understand what’s going on.  This does not necessarily mean more information; it means better communication.  And that’s what Patient Centered Care is all about.

The first item on our agenda was to get to know each other’s stories.  We went around the room, giving each parent as much time as he or she needed (there are five of us).  The designated speaker was usually the one holding the Kleenex box.  Many of our stories started way before the birth, sometimes even before the pregnancy.  We told it all.  We unburdened ourselves: our guilt, our regrets, our gratitude.  The frequent scares and unexpected joys.  Then and now. 

Then: the moment when we all thought, “Oh my God.  My baby is going to die.” 

Now: the profound debt of gratitude we feel toward all the other people in the room: doctors, nurses, the hospital staff that thought it was important to have a council like this to begin with.

Which reminds me, a year ago today we brought Wagner home from the hospital. 

Tales from the Teeth

Wagner said his first word, “hi,” (old news) and he waves when he says it.  It’s really cute because he says it in a higher pitch than his normal speaking—er, uh, babbling voice, presumably because when we say “hi-i!” we also say it in a higher-than-usual voice.  Michael waves at “hi,” too, but hasn’t really said anything yet.  Wagner has also said “peek-a-boo” (breaking news).  It came out “eek-boo.”  The wheels are really starting to turn for Wagner regarding language.  I think it will still be slow going, but we’re starting to get there. 

And now the bad news—the boys are missing quite a bit of enamel on their top teeth.  Enamel is something that forms in the third trimester of pregnancy and while the Internet estimates that 80% of preemies born this young have enamel hypoplasia (fancy tooth talk for “not enough enamel to go around”), we don’t know of anyone in our small circle of preemie friends that suffer from this condition.

It literally looks like a coat of paint is missing on their top teeth.  It’s white on the sides and near the gum, but the center of the tooth is yellowish and a little mealy looking.  The enamel on the sides of the teeth is a little raised.  It reminds me of a halved section of garlic that has sprouted.

I noticed it last Friday (March 18) and on Monday we made an appointment with the dentist who fit us in on Tuesday (there happened to be a cancellation). 

Yes, the boys have enamel hypoplasia.  No, the enamel won’t grow back.  Yes, their permanent teeth will be similarly affected.  The most we can do is aggressively work to prevent cavities.  When they are older they can get sealant, and if they get cavities before then we can get crowns, but it doesn’t make a lot of sense to apply sealant now when they have only 3 and half top teeth apiece.

The pediatric dentist showed us how to brush their teeth (with a little finger glove that has bristles) and how to floss their teeth (with a little plastic flosser called “Mr. Flossman).  She told us all about xylitol, a natural sugar that kills bacteria (“Why didn’t you tell me!” you are thinking) and gives you diarrhea if you have too much (“Thanks for telling me!” you are thinking).  Oh – and don’t give it to dogs.

Then she gave the boys an iodine rinse and a fluoride varnish.  We go back in three months for more of the same.

We went home armed with xlylitol toothpaste gel called “Xlyitots” for twice a day brushing, xylitol drops called “Xyliteeth” for twice a day rinsing and little antibacterial tooth wipes called “Spiffies” for twice a day tooth wiping. 

Next up:  Brushing Your Toddler’s Teeth

Speak, Boy!

Nearly a month has passed since I first noticed what the boys weren’t noticing—their names, our names, simple commands such as “Come here,” “Look!” and “No!”  Since then folks have given me some great anecdotes about someone in their family (always an uncle, strangely enough) who never said a word until they were 3 or 4 or 5, at which point they spoke in complete sentences.

Perhaps if the families of these uncles had fish eye lenses installed in every nook and cranny like this guy, they’d be able to determine just what their kids were communicating, even though they weren’t using words to do it.

One of the great reliefs of our early intervention playgroup, particularly the one with the speech therapist, was that, while the boys only say unintelligible things, it doesn’t mean they only think unintelligible things.  The playgroup facilitator (for lack of a better title) and the speech therapist were able to point out many efforts that the boys make to communicate—Wagner in particular.  They were able to conclude this after “a dialog” with Wagner that involved patting. 

Cathy, the most wonderful early intervention specialist ever (also known as the playgroup facilitator) started a game with Wags.  Securing eye contact with Wagner (it’s called joint attention), she patted her leg.  Wagner watched her and then he patted her leg.  She nodded and smiled and said something to him and patted her leg again.  He responded by smiling and patting her leg again.  It sounds simplistic and non-deterministic, but this is turn-taking.  These are the real building blocks of communication. 

Before you and I can have a conversation, I have to know that you are listening to me.  If you look me in the eye and nod (or cock your head to the side), I know you are listening.  I say something and when I’m done, I pause and it’s your turn to say something.  This is established in the patting game.  It’s an interchange that’s easy take for granted until you see another baby how doesn’t get the game—like Michael. 

When we went back the next week, Wagner remembered the patting game with Cathy and they repeated it.  Michael was still uninterested in the patting game, but he had other signs of budding intelligence.  He was appropriately startled by and curious about the hungry cries of the one-month old who was also in attendance.  And he and Wagner engage in their own form of “conversing” with each other—joint attention and taking turns patting and squealing.

That’s why you go to the experts (good experts, not just degreed ones).  They can point out this or that gesture which is actually meaningful—not just in your imagination.  And once you know what to look for, you can repeat it and reinforce it.

Other things the speech therapist recommended to help with speech production.  Lose the bottle, push the sippy cup.  Sucking is easy (that’s why newborns can do it).  Drinking from a cup is hard.  It involves a more sophisticated coordination of motor patterns.  Trying to get them to drink from a regular cup will help, too.  Michael’s been drinking from a cup for a while (with assistance, of course).  He insisted on it (more communication!!!!) ever since an ear infection made bottle sucking impossible.  But for some weird reason, the sippy cup just mystifies and frustrates him.  Wagner’s better with the sippy cup.  We are also trying to be better with the sippy cup, since the bottle is easier for us, too.  Just fill and serve and put ‘em to bed. 

But bed bottles are bad for their teeth, so we’ve got to lose the bedtime bottle (or at least brush their teeth afterwards, which defeats the purpose of bottle feeding as a means of sedation).  Tomorrow we go to the dentist for the first time, and we’ll get better information then.  It turns out that the boys have some enamel problems—such as, it’s not forming on some of their teeth—a condition that according to the all-knowing Internet, affects 80% of preemies born at their weight and gestational age.  (Younger than 28 weeks and less than 1500 grams.  The boys were 25 weeks and 860 g & 720 g).   Stay tuned, gentle readers!

OH MY GOODNESS!  I ALMOST FORGOT!!!!  WAGNER SAID “HI” TODAY!  COMPLETE WITH WAVE!  There I go again, burying the lead. 

When Experts Speak

I haven’t yet written about my current work with the hospital, but part of it involves looking pamphlets and brochures and explaining why this or that phrase will not resonate with the intended audience.

For example, my most recent work involves a flyer on breastmilk. The NICU hosts two different kinds of Moms: the Moms who envisioned nursing their newborns every two hours while a choir of angels sang in the background, and the Moms who think, “Euuuuuuuuuuewwwwwwww.” One group pumps diligently, the other group needs a little prompting.

Breastmilk is better than formula for all babies, but for healthy babies, the difference between babies who are nursed and babies who are fed formula is negligible. Repeat: negligible. You may have to read that sentence twice, because the La Leche League would have you believe that formula is poison, but formula is nutrition. But if you want a baby that healthy, strong, and smart, it’s better to be rich than to be nursed. So if you’re stressed out because you have to go back to work and pumping is making you so crazy that you’re losing hair in patches, pull out the powder instead; your baby will be no worse off because of it. Really.

If, on the other hand, your baby is a NICU baby, suck it up and pump, Mom. Your baby needs you. Breastmilk has amazing properties that modern medicine can barely identify, let alone replicate. The best it can do is to invent ways to get the milk out more efficiently in the event that your baby cannot.

Spending forty-five minutes tethered to a hospital grade pump is a real drag, especially if you have to do it eight times a day. I know. I bribed myself with candy bars to make myself wake up in the middle of the night to pump. I took a prescription drug that made me depressed, panicked, and exhausted (I sleepwalked through six weeks of last year’s winter) just to improve milk supply. It sucked. But sick babies need breastmilk and Moms are the only ones who make it. Breastmilk improves digestion and decreases risk of terrible diseases such as NEC. (Diseases to which preemies are susceptible. Healthy babies need never even know that these things exist.)

The NICU staff’s hands are tied, in a way, because the last thing they want to do is pressure a stressed-out NICU mom into pumping breastmilk for her baby and at the same time, they need that breastmilk more than anything. (They can use banked breast milk. Our boys were on breastmilk when my supply was inadequate, but it’s not the same. In fact, the constitution of a mother’s milk changes as her baby grows. The milk of a mom whose babies are twenty-five weeks’ gestation is different from her milk when her babies are twenty-eight weeks’ gestation.)

In an effort to gently get all Moms pumping, the NICU staff put together this flyer informing parents about the benefits of breastmilk.

And that’s where I come in. I look at the flyer and tell them why it doesn’t say what they think it says.

The breastmilk flyer that outlines 10 major benefits to providing breastmilk to babies ranging from decreased risks and increased benefits for the baby to decreased risks and increased benefits for the mom. (They can’t say “breastfeed” because in most cases, these babies are unable to nurse yet).

The trouble is, the flyer’s list of risks and benefits list multisyllabic medical terms that make even my eyes glaze over—and I know to what these terms refer. I can’t imagine an uneducated mom (the target audience) hanging in there past the second sentence.

The flyer makes a number of fatal assumptions, but one that stands out is that the flyer assumes that 1) mothers know that breastmilk is powerful and 2) mothers know that they are the only ones who can provide the breastmilk. To this end, one of the changes we made to the flyer is to call breastmilk “medicine.” Comparing breastmilk to medicine introduces an aspect of the liquid that these moms might not be familiar with. Now it doesn’t matter if she doesn’t know what necrotizing enterocolititis is. She understands that it’s a medical condition that can be treated through the medicine of breastmilk.

The gist of the recent breastmilk brochure is the recurring problem of education and communication. If you believed what I have to say to you, I wouldn’t have to say it. Given that you don’t believe it, then I have to say it a different way. In other words, those moms who already pump milk morning, noon, and night (along with early morning, late morning, early afternoon, late afternoon, late night and wee hours) know that the constitution of milk has special properties that can treat specific conditions. Skipping over that fact and listing just risks and benefits doesn’t the moms who may just think of milk as milk.

I know that information is only understood within contexts and that to change minds, you have to find the right context.

So I was very surprised to find myself resisting the advice of the speech therapist who told us that we must bombard our language-delayed babies with words and gestures. I looked at her, nodded at her dutifully, and decided that I know better.

Me—who has had one semester of Language Acquisition. What do I know that she doesn’t?

My Name is Nobody

So just to recap, the boys are showing multiple signs of language delays, starting with the fact that they make no inferences about the world around them and ending with the fact that at 10 ½ months adjusted, they still do not know their names.

Granted, twins in general are usually slower at learning their names. This is not surprising, since identical twins are so often confused with each other. Our house is no different. Half the time Chiara calls Michael, “Wagner” and Wagner, “Michael.” The other half she calls Michael, “Isabel” and Wagner, “Jack.”

I’m no help, either. I call the boys “Sweetie,” “Buddy,” Dude,” and “Puppy-puppy.” Sometimes the boys are “Mister Michael” and “Mister Wagner” and sometimes the boys are “Mikey” and “Waggy.” For a time Matt called Michael, “Tiny Elvis” and Wagner was simply, “Spaceman.”

This lack of consistency no doubt adds to their name confusion. In fact, if Michael were to go on probabilities alone, he would assume that his Christian name is “Owbegentle,” as that is the utterance that is most frequently directed at him.

I’m starting to get concerned. I haven’t yet been able to talk to the speech therapist from our NICU Early Intervention playgroup because the boys have not been healthy enough to attend since November. They haven’t been that sick (except for this week—this week three out of four ears are infected and we have just been given a fancy 3-day second line antibiotic. Last night Mister Jack Wagner ran a 104.5 temperature). It’s just that the playgroup is all NICU grads—in other words, babies with fragile immune systems. To even think of attending when all three of us are less than 100% healthy isn’t just bad form; it’s dangerous for the other babies.

I talked to the speech therapist that is associated with our new developmental playgroup (one run by Chiara’s daycare). She’s very nice and very respected but had never met our babies before two Fridays ago. Her suggestion was to “bombard them with language” and she previewed for me a storm of sounds and “power signs” to help jumpstart our wordless tots.

And I decided that I didn’t want to take her advice.