The Problem With Early Intervention

As with most preemie parents, we take Madeleine and Reid to a lot of appointments.  They currently see a paediatrician, physiotherapist, occupational therapist, neurosurgeon, and ophthalmologist, and probably will continue to for a while.  The list may grow longer as we discover other issues and needs.  When babies are born very small and very early, things tend to go wrong, they tend to need extra help, so these appointments are put in place at discharge (sometimes they even begin during their NICU stay), with the intention of providing as much help and assistance to these little ones as early as possible.  You get a team of people on your side, a reassurance that you won't be alone in advocating for your children.  It's a good thing.

Your Children Are Not Your Children

Today, the babies turned seven months corrected.  As many mamas before me can attest to, time is speeding by faster and faster.  It seems like every week brings with it a new skill, a new favourite food, a new aspect of their ever-evolving personalities that I get to discover.  Of course, some of those new aspects are less than wonderful - the newly-developed whining, the constant teething pain, the screaming for fun, the throwing of food during meal times, the all-out nap strikes - but every day I look at Madeleine and Reid, these amazing little people who have come so, so far in seven months, and think how lucky I am to get to be the one who sees it all.

Kicked

I was folding the babies' laundry when I felt it, a quick little thump in my tummy, likely an indigestion side effect from the copious amounts of Thanksgiving turkey I'd consumed the day before.  But there was a brief moment between feeling it and identifying its cause that my mind strayed and I thought, a kick.  It hadn't yet clicked in that, no, that certainly wasn't what it was.  Instead, I thought of Reid, the baby that used to kick me the same way in that same spot.  I instinctively put my hand over it, trying to "catch" it the way I always used to when I was pregnant, in that brief window of time when I got to feel my babies move.  And then, of course, I remembered that, nope, that's over now, and my heart sank a little.

Thankful

This time a year ago, I was four months pregnant.  I was sick - really, constantly, all-the-time sick - so Matt and I opted to stay home and cook our own mini Thanksgiving dinner, just the two of us.  We had no idea what lied ahead, that I'd be giving birth in a scary blur only two months later.  We cooked and laughed and set off smoke alarms and talked about baby names and where in the world we'd move if we didn't have to worry about finding paying work.  It was one of my most favourite days.

Today, we're also cooking Thanksgiving dinner together at home, although there will be two more people at the table.  Getting to this point has meant a lot of stress and tears and sadness, a lot of sleepless nights.  But it's also been about love, a new kind of love I didn't even realize existed, for these new little humans I get to call my children.  And a new kind of love for Matt too, for both the incredible father he's become as well as for the person who shared that terrifying journey with me, whose heart broke along with mine, who never left my side.

I had no idea a year ago what lied ahead for us, couldn't have possibly imagined it even if I'd tried.  But I also had no idea either just how wonderful it would be, and just how much I would have to be thankful for.

Happy Thanksgiving to you and yours xx

What NOT To Say To A Twin Mom

One thing I've learned as a mom of twins is that, well, people LOVE twins.  Any time we're out in public, we will inevitably be stopped by someone who wants to sneak a peak at my children, and I'm usually happy to oblige.  I understand the fascination — two babies!  Two babies at once! — and I always appreciate hearing from other twin moms or from people who were twins themselves.  But I also hear a lot of other stuff.  And that other stuff tends to get repeated.  A LOT.  I've been lucky that all the questions and comments I get have all been well-intentioned, but there are a few things I wish people knew about what it's like to have twins.

WHAT NOT TO SAY:  "A boy and a girl?  Are they identical?"

This is by far the question I am asked the most, and it always baffles me!  Identical twins are two babies formed from an egg that split into two - actual clones of one another.  Not only do my babies hardly look alike, they are DIFFERENT GENDERS.  They are about as identical as any brother and sister can be - which is not at all!  Two eggs, two sacs, two placentas.  Having fraternal twins is pretty much just having two normally-related siblings that happened to be born at the same time.

WHAT TO SAY INSTEAD:  Next time you see boy/girl twins out and about and want to say something about it, try, "fraternal twins!  How lovely!"  Not only will mom appreciate the sentiment, but you'll get bonus points for knowing the difference.

WHAT NOT TO SAY:  "I always wanted twins!"

When I first got pregnant, it didn't even factor into my brain that there could be more than one baby in there.  So needless to say, when I found out, it was a pretty big shock.  One big, terrifying shock.  Two babies at once!  Twice the crying and feeding and dirty diapers.  I would already be outnumbered!  Will I ever sleep again?!

I love my babies more than I ever thought I could love anything, but taking care of two at once is not easy, and sometimes (especially when the babies first came home) I thought it would have been better to only have one.  Even though I know that it is meant to be a compliment, when someone says this to me, what I hear is, "If I had twins, I'd think it was so lovely and wonderful all of the time!"  Which is to say that I should think so too.

WHAT TO SAY INSTEAD:  "Fraternal twins!  How lovely!"  Expressing your love of twins without implying any judgment.  Win.

WHAT NOT TO SAY:  "Oh my goodness, I can't even imagine having two babies at once!"

Ok, I totally get it.  In fact, if I didn't have twins myself, I'd probably say it too!  Two babies is a lot of babies.  Even one baby is hard, so I understand your shock and horror when you consider that you could have had more than that.  But you're also basically telling me that I got stuck with something you'd never want (even if you don't mean to).  That kind of makes me feel bad - like no other mother in the world would want to be me!  I understand that it's not personal, but hey, I'm a sensitive new mama here, I can't help it.

WHAT TO SAY INSTEAD:  "Fraternal twins!  How lovely!"  (Are we sensing a theme?)

WHAT NOT TO SAY:  "You're a saint/super mom/warrior/etc."

Thanks.  Except, I'm not any of those things!  I didn't choose to have two babies, it could happen to anyone.  And when it does, you just figure it out the same way any mom figures it out.  You could do it too!  (Besides, some moms have triplets!  Or quads!  Some even have six or (gulp!) eight babies at once!  Two babies is nothing.)

WHAT TO SAY INSTEAD:  "Fraternal twins!  How lovely!"  Works every time, I swear.

WHAT NOT TO SAY:  "Two at once! Now you never have to do it again!"

This one is personally hard for me, because my pregnancy and delivery were such a colossal disaster.  I couldn't carry even close to term, and a still feel a profound sense of loss about it.  I didn't even reach the third trimester!  I didn't get a big belly, I didn't get to feel them moving around a lot, I didn't get to wait until my water broke to rush to the hospital in an excited frenzy.  I didn't even get to hear my babies cry when they were born - because they couldn't.

Nobody would ever know this from looking at me, and I definitely wouldn't hold it against you if you said this (I usually just smile and agree), but the truth is that there is a part of me that dreams of doing it again, dreams of being able to do the thing my body was meant to do, dreams of having it go like it was supposed to.  And I don't know if I'll ever be able to.  I don't even know if I want more children.  But I do know that I'd love a do-over with Madeleine and Reid.  I would love to do it again if I knew nothing would go wrong.

(Besides, how do you know I don't really have my heart set on three or five or seventeen children?!  And one baby is plenty for some parents!  Two is not a magic number.)

WHAT TO SAY INSTEAD:  Say it with me now...."Fraternal twins!  How lovely!"

WHAT NOT TO SAY:  "Are they natural twins?"

No.  Just, no.  Don't say this!  As opposed to what?  Artificial?  Yes, fertility treatments can often result in multiples, but asking about anyone's reproductive history is never a good idea.  It's a sensitive topic, and also, nobody else's business.  It's also implying that natural twins (or ‘spontaneous twins’ to use the more accurate term) are somehow better, which is unfair.  Unless I personally volunteer information about my children's conception (which, uh, I won't ever do), please don't ask.  Like, anyone.  Don't ask anyone ever.

WHAT TO SAY INSTEAD.  Nothing.  Walk away.  (Okay, "Fraternal twins!  How lovely!" works here too.)

Next time we run into each other at the supermarket, please come say hello!  Just please, please, don't ask me if my kids are identical.

That Baby Smell

When Madeleine and Reid were first born, we weren't really sure how to interact with them.  We couldn't hold them right away, and even when we could, it was a specific type of holding, a pre-planned activity you had to coordinate with the nurse, involving tubes and wires and undressing and sitting for as long as you possibly could so that your baby could benefit from skin-to-skin time.  Even touching them in their incubators had a protocol - no stroking or touching that could be stressful or overstimulating.  Instead, we could firmly hold their head and feet, trying to recreate what it probably felt like when they were confined inside my body.  When your baby is born very premature, nothing is spontaneous, all interactions must happen carefully.  You don't hold them the same way as normal parents, you don't have the same kinds of early experiences.  But what we did have was their smell.

I think all parents love the smell of their infants, the sweet, warm, delicious scent that emanates from their otherwise poopy, pukey humans.  I love it too, the way they smell when I nuzzle into them during a cuddle or after a bath, but in truth, I almost don't even notice it these days.  What I remember most vividly, a sharp, precise memory in what is otherwise a giant blur, is the scent of Madeleine and Reid in those first few weeks of life.  The way it made our hearts swell and helped us fall in love with them.  The way it made us parents.

When Madeleine and Reid were first born, and for a fair while afterward, they were kept in small, enclosed incubators to regulate their temperatures.  Very early preemies cannot do this very well on their own, especially at the beginning, so the temperature had to be kept pretty high.  I remember so clearly the warmth of their rooms, the way I'd be sweating sitting there in a t-shirt while a bitterly cold winter waited outside.  But those were the days when even the act of opening an incubator porthole would cause the alarm to sound - even a slight change in temperature made a big difference.

Back them, all we could do was sit by their incubators while they slept, head in one hand, and feet in the other.  A baby still has a long way to go at twenty-five weeks gestation, a lot more time left that should have been spent in the warmth and darkness of utero.  So that's what we did for hours at a time, sitting there, sweating, with our hands on their little bodies, trying not to move much, if at all.  And when it was time to stop, when we had to close the portholes and leave our little ones, the one thing we had left was the scent left by our babies on our hands.

"Here!", Matt would say, holding out his hand, and I would close my eyes and it would smell so strongly of Madeleine, whatever that meant, the incredible, unique, delicious smell of my baby girl.  I would do the same and offer my hand, the one that smelled like Reid, and we would smile at each other during this strange little ritual, understanding that the incubators and the tubes and the monitors were not who our babies were, but that those smells were our children.

We knew them so well that at night, when we came home, if we tried hard enough we could conjure them in our minds.  When the hospital gave us hug blankets - little squares of flannel that the babies heads would lie on - I would wear them eagerly inside my shirt all night long before bringing them in the next morning.  The babies couldn't really see me, couldn't really understand what was going on, but I hoped that when the nurse laid them down onto their hug blankets they would smell me, and that it might comfort them the same way their smells comforted me.

Later on, once the babies we wearing clothes, Matt and I would bring bags of the babies' laundry home with us to wash.  Once we'd get in the door we'd go through it piece by piece - "Mmm, this one smells like Madeleine!", "Oh, this one smells just like Reid!" - and envision the days when they'd be home and we wouldn't have to rely on smelling their clothes to feel closer to them.

Now that those days have arrived, it's even better than I could have hoped.  Seeing them everyday, hearing them laugh or cry, watching them eat and roll around, feeling them snuggle in when I pick them up after a nap.  But, I really don't notice their smells anymore.  I guess I don't have to.

In Good Time

At first, we were most worried about Reid.  Before we knew about Madeleine's hemorrhage, before the hydrocephalus, and the surgeries and the shunts, all we knew was that Reid wasn't doing so great.  He needed a lot of help to breathe.  He had a heart murmur and a PDA, and it might need surgery.  From the get go, we saw Madeleine pushing back against the ventilator, getting frustrated at the technology needed to keep her alive.  We saw a spark in Madeleine since the moment she came into the world much too soon - impatient from the very start.  But with Reid, we didn't really see that.  And that concerned me.

I often think that the best part of having twins is realizing how little I actually have to do with who they are.  With one baby, I would imagine you would feel a lot of pressure to do everything perfectly, to not mess up your influence on your blank slate of a child.  That's what I expected, anyway.  But when Madeleine and Reid were born, it became clear from day one that they were very different people.  They had their own personalities, their own needs and sensitivities, their own way of experiencing the world, even though I was doing everything the same.  I realized pretty quickly that my job as a mother wouldn't be to mould or influence them at all, but just to try to stand by them and try not to get too in the way of who they were naturally going to become.

This has been easier to do with Madeleine.  She's naturally curious and talkative and pushy and determined - things that, as a mother of a child who endured fairly significant neurological trauma, make me think, thank goodness.  We need her to be all of those things.  Those things will help her try to overcome the obstacles in her way.  But with Reid, it's always been a struggle.  He's so relaxed, happy to just be held and fed and snuggled.  Happy to just lie there and watch his sister squirming and scooting and reaching for things.  This is who he is - it has always been who he is - but sometimes I think, "c'mon little guy.  Try a little harder."

Madeleine is talkative.  Reid, not so much.  Madeleine grabs her toes and sticks them in her mouth and rolls and grabs her toys.  Reid, not so much.  At our most recent follow-up appointment, we were told this was probably a bad thing.  His muscles are tight, his core is weak, he needs physiotherapy.  He's getting stuck in his patterns, it'll make it harder for him to sit and stand and progress.  He's not making clear sounds, maybe he's having trouble hearing.  It was exactly the thing the anxious mother inside of me wanted to hear.  I was right!  There's something wrong!  But I was forgetting something else very important about Reid, which is that he has his own schedule.  Reid takes his time.  Reid does things when he is ready to do them, and pushing and prodding him to go any faster makes no difference whatsoever.

Eventually, Reid did come off the ventilator.  Eventually, he began breathing room air.  Eventually, his PDA closed without surgery, and his murmur became faint.  Eventually he passed his car seat test, on his third attempt (compared to Madeleine's 'one and done').  And now, eventually, he is making sounds and grabbing his toes and laughing and screaming, and not showing any signs of caring that his sister did it first.

https://vimeo.com/76074675

 

NICU Central

When the twins entered the NICU, and the words 'apneic spells', 'bradycardia', 'PDA' and 'intraventricular hemorrhage' were starting to become part of our daily conversations, I began scouring the Internet looking for stories from other preemie moms.  I wanted to hear from people who had made it, and I desperately wanted to know what their lives looked like "on the other side".  Of particular interest to me were the few blogs I found whose children were also micro preemies, or who also had twins, or (most helpful of all) who also had brain bleeds and shunts.  I would stay up reading them late into the night huddled in my bed over my laptop screen, taking in as much as I could.  When we knew that Madeleine had a bleed in her brain, I needed to read about what could come next, the subgaleal shunt and the head ultrasounds, and the second shunt surgery later on.  I needed to read about babies coming home, I needed to read about them growing up, I needed to read about what life was like when your child was developmentally delayed, or needing a shunt revision, or living with cerebral palsy.  I just needed to read as much as I could about what my future may or may not realistically look like.  I really needed preemie blogs.

Once the babies came home and life became "normal", I started writing less for day-to-day updating purposes, and more to share my story - both for myself and for other moms.  I wanted to give something back to the small community of blogging preemie moms who didn't even know how much they had helped me, how much it made a difference in those early hours of the morning when I felt like I was the only mother in the world whose babies were struggling.  Because of this, I was so happy when Trish at the wonderful NICU Central asked to share some of my posts on her blog for other NICU families.  The further away we get from our time in the NICU, the more I realize how incredibly important it is for preemie moms and dads to share their stories, to hear the stories of others, and to be part of some kind of community - big or small, online or in real life - where they can connect with people who understand what they're going through.  And if you happen to be a mom or dad visiting from NICU Central, my sincere hope is that one of my posts might do that for you.