World Prematurity Day

Statistically, Das Big Boy is 100% enamored of the tractor, and 100% awesome.

Today, I have learned, is World Prematurity Day, and November is Prematurity Awareness Month. I’m not sure that I knew about this remembrance in previous years, but it seems a fitting choice of month given that in November of 2010 I was the mother of an incredibly sick preemie, and in November of 2012 I’m trying to avoid birthing a preemie. It’s become a month during which I, at least, am very aware of prematurity whether it’s commemorated by a day or not.

I could spend time telling you lots of prematurity statistics, but you can find those on myriad websites, some comforting, most anxiety inducing in anyone who’s had a preemie. But rather than spout off statistics or show off my alarming array of preemie and high risk pregnancy specific medical knowledge (seriously, not to get all smugsby on you, but doctors and nurses ask me all the time if I work in healthcare), I’d like to try to share some things about what it’s like to be a preemie parent.

Or at least what it’s like to be this preemie parent.

Das Baby, four days old. Also pictured: ventilator tube, excessive tape to prevent Das Baby from yanking out ventilator tube, pulse oximetry sensor, heart monitor, temperature sensor, chest tube, feeding tube, peripheral IV line. On this day, Das Baby would be tube fed his first cc of breast milk (colostrum, more accurately).

1) Preemie parents have had their children almost die. They have received that phone call telling them their baby might not make it. They didn’t get a chance to say goodbye. They barely got a chance to say hello. They were told they would receive a phone call again in half an hour with an update, but that they couldn’t come see the baby yet. Fifty minutes later, they were told their baby had stabilized. Having your baby almost die makes you a different parent.

2) Preemie parents have seen their children turn blue because they forget to breathe. Preemie parents get used to seeing their children turn blue because they forget to breathe. Preemie parents learn to calmly rub their babies’ backs to remind them that, in the words of one of Das Baby’s nurses, “Breathing is fundamental.”

3) Preemie parents may not take minor bumps, bruises, and illnesses as seriously as other parents, because when you’ve had a kid turn blue or almost die, that stuff seems pretty minor.

4) Preemie parents feel like they’ve failed. Like their bodies have failed, like somehow they are worse parents because this happened to their child. This feeling fades, but never fully goes away.

5) Preemie parents feel like they’re slightly better parents than other parents, because they’ve had to go through more. They appreciate the smallest things about their children.

6) Preemie parents feel like they have so many reasons to be proud of their children, who have overcome so much.

7) Preemie parents have to leave their children in the hospital every night, and this is a heartbreak from which it’s hard to recover, whether it’s for one day or 114 (note: I had to double check that number, which I used to know like my birth date). Preemie parents therefore promise themselves that they will never resent having to get up in the middle of the night with their children. But sometimes, when they still do resent them (because waking up eight times in one night is enough to make anyone resentful), they try to remind themselves of when they couldn’t comfort their babies.

8) Preemie parents don’t get to hold their children right away. They might have to wait a week or more. They might love holding the tiny being–light and clingy as a kitten–but be almost afraid to breathe for fear of harming him. Later they might become the type of parents who never put their baby down.

9) Preemie parents might not be able to touch their child on the day he is born. They are lucky to get a quick glimpse of a tiny purplish baby before he is whisked away. Preemie parents have to be taught how to touch their children–no gentle stroking, as their skin is fragile and they are hypersensitive. Firm, static touch.

10) Preemie parents think their children are the most beautiful thing ever from the moment they are born, even when they are stuffed full of medical equipment that triples their body weight. It hurts them and makes them angry when anyone suggests otherwise.

11) Preemie parents sometimes lack patience when typical parents complain about how hard it is having kids. They don’t mean to be judgy; they’ve just been through a lot, and sometimes it seems like other people have it easy.  Preemie parents also know this isn’t fair of them, and they try not to do it.

We still have that shirt. It’s the smallest preemie shirt we ever found. And it is TINY. And so flippin’ cute.

12) Preemie parents keep worrying about their kids (who doesn’t?). Sometimes they forget to be amazed and grateful at how far their kids have come, and instead worry about getting to the next milestone. Preemie parents worry that some effect of prematurity might pop up and make their child’s life very difficult. They try to remember that they’ve coped with every tough thing so far and will be able to cope with anything that comes their way.

13) Preemie parents are thrilled the first time their child actually fills out a preemie outfit. They are overjoyed when their baby moves from an isolette to a crib. They can remember when their baby finally got big enough to wear Pampers Preemies instead of the brandless doll diapers he started in!

14) The roller coaster cliché about the NICU is totally true.  Babies get better, and then they take steps back.  Preemie parents try to mentally prepare themselves for this, but the fact is, it sucks.

15) The NICU is not all misery. It’s also magic. It’s the magic of a baby getting better. And it’s also the magic of a community–of nurses, of other NICU families, of doctors–that will stay with them for the rest of their lives. It becomes a world unto itself in which preemie parents can get very comfortable, even as they are eager to leave.

16) Preemie parents do not forget how to laugh. They endlessly discuss things like which hospital staff member they would most want to go to a bar with, or have to a dinner party, or which of their friends should date their favorite nurses and doctors. They play a weird version of chuck-fuck-marry in which they discuss which hospital staff member they want to bring to Boston, which they would leave at CHONY, and which they would fire.

17) Preemie parents are amazed to see their children grow up. They are amazed when they no longer have to explain that their child was a preemie, and that’s why he’s a six month old the size of a three month old. They are even more amazed when people are shocked to hear that their child was a preemie.

18) Preemie parents are, like all parents, lucky. But even luckier.

Of course, there are preemie parents whose children don’t make it, and their heartbreak is unimaginable. I want to send them all of my love and strength today. A friend wrote an amazing, direct, devastating, and beautiful book about such loss, and I’ve also discovered an incredibly honest, powerful, and loving blog about it.

Now I have many friends who face challenges with their children who weren’t premature: children who have medical problems or neurological differences. Some of the things on this list apply to them and some of them don’t. Some of their struggles are unique to them. But I felt they deserved a shout out, too, because there are so many ways in which parenting can be hard.

It’s extra miraculous when they’re sleeping. Just kidding. Actually, this sleep was not miraculous. It was the result of an unsanctioned, late-afternoon car nap.

But even more than it’s hard, it’s miraculous.

This post is perhaps sad, or serious, but I’m not necessarily feeling that way. I just wanted to honor World Prematurity Day. Today was actually a good one. I napped. Das Big boy used an adverb correctly (“I do too need a pen!”). Herr Husband and I continued one of our best bedrest traditions from my last pregnancy: a cheese and jazz picnic in bed.

And I also want to give a shout out to our wonderful neighbors: the gourmet chef neighbor cooked us dinner tonight (score! yum!), and our next door neighbor/political soul mate mowed our lawn. So happy and grateful to be part of such a loving community! Thanks, guys!


4 Comments on “World Prematurity Day”

  1. Kate says:

    I remember that picture! I gave him his first cc of EBM! Theo is all grown up now! I have taken cared of a lot of sick premies and very critical post cardiac surgery babies and I am always amazed at how well they cope and recover after being through so much. It’s really wonderful watching Theo grow up. Thanks Leda for all the updates. I enjoy reading your blogs esp. when they have Theo’s pictures!

  2. Morgan Faust says:

    What a wonderful and well-written….I want to call it an essay. You’re a beacon of inspiration to parents and non-parents across the board. Love you all.

  3. Erin says:

    Leda, I got choked up reading this. You have an amazing big boy and hopefully not too soon you’ll have an amazing baby girl. My baby woke up when I started to read (2:15am) and I hugged him and kissed him for being here and for being happy, healthy and hungry. Your beautiful Theo is a wonder…I love reading about him

  4. Thank you Leda. Have a wonderful day. November is one of my favorite months of the year. Celebrating those who face and survive and endure innumerable heart wrenching challenges seems right for November. Love always.

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