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.

Six Months

Yesterday, Madeleine and Reid turned six months old based on their corrected age.  This felt like a pretty big deal, as it means that we have now officially entered the realm of solid food, (almost) independent sitting, and teeth (two on the bottom for each of them!).  Even though these things are totally natural and had nothing whatsoever to do with me at all, I still feel so very proud ("My kids have teeth!  They are obviously super genius miracles!!!").

As with the eight month (chronological) milestone, the closer we get to their first birthday (again chronological...they won't "really" be one until March), the more I start to feel amazed - and slightly overwhelmed - by just how far we've come.  It is really quite mind boggling, something I struggle constantly to wrap my head around.  With two little ones, you spend so much time just thinking day-to-day, which I think is a wonderful, healthy thing (nothing like a baby to teach you how to live in the moment!).  But every now and then, I see or hear something and think, "wow, this really has been a long, rough road".

Truth be told, I still struggle with it quite a bit.  I struggle with my memories, the lingering sadness for myself and the babies that I wasn't even sort of able to process while it was happening.  I struggle with the flashbacks that I always feel unprepared for, the forgotten details that always seem to catch me off guard.  I struggle with the stories that I hear of other families that weren't as lucky as ours, and with learning previously-unknown information about the babies' hospital stay that reminds us how close we came to being one of those less-fortunate families ourselves.  And, of course, I struggle with the unknowns ahead of us, the appointments and the therapies that remind us that maybe we aren't doing as well as I like to think we are.

All of these things are still here, still as pressing as ever, six months from their due date and nine months from their birth.  They'll probably be here for a while.  But even so, here we are, with two amazing solid-food-eating, giggling, rolling, babbling, squirming babies, who bring us more joy than I ever thought possible.  And THAT is definitely worth celebrating.

[caption id="attachment_1216" align="aligncenter" width="590"] Reid at two days old, finally home at one month corrected, and showing off his teeth at six months corrected.[/caption]

[caption id="attachment_1218" align="aligncenter" width="590"] Madeleine at two days old, going home at two weeks corrected, and having a snack at six months corrected.[/caption]

Getting Out, Moving On

This past July, Matt and I celebrated our fourth wedding anniversary.  Our lovely friend Heather had very generously given us a gift card to a swanky restaurant when the twins were born, and we decided our anniversary would be the perfect time to use it.  Add in a night in an also-swanky hotel, and it was pretty much a new-parents'-first-night-out dream.

We left the twins with my mom for the night, which marked the first time we'd been away from the babies overnight since they came home in April.  I'd heard a few mom friends say that they were so worried to leave their babies for a night out, that they called home multiple times, that the dinner conversation always came back to the baby.  And I'd probably have been that way too if I'd been with Madeleine and Reid since the moment they were born.  But the strange and sad reality is that when your children spend the first three months of their lives in the hospital, you get used to not having them around all the time.  You get used to leaving them behind.

I often think that having an early preemie means that you start out learning to be a mother in the most artificial, unnatural way possible.  It's nobody's fault, of course - it's what needs to happen for your child to survive - but it's a tough adjustment.  You don't hold your baby right away.  You may not even hold your baby for days or weeks after her or she is born (we didn't get to hold Reid for almost two weeks after his birth).  Instead of breastfeeding immediately, you attach yourself to an awkward, gurgling machine for months on end.  You don't dress up your newborn in her going-home outfit and drive off.  She doesn't even wear clothes.  And when she finally does, all those weeks later, you stand in her room and cry at the strangeness of it all.

But the hardest, most abnormal part is the leaving.  The routine you have to follow, where your days consist of visiting your children and then going home at night.  Dropping off frozen breast milk.  Putting on a hospital gown and sitting with your baby against your naked chest for hours until your arms and legs have gone numb.  Falling asleep from the whirring sound of the CPAP machine and the warmth of your little one, and being woken up again by the monitor alarming when his oxygen saturation drops.  Watching the nurses updating each other as the shifts change, and hoping the night nurse will be someone you like, someone who is kind and calm and who you hope will be a good motherly stand-in once you've left for the day.  And then packing up your things and saying goodbye, blocking it out of your mind as you leave that your babies are there alone when they should be going with you.

I found that when it came time to leave the babies for our anniversary - this time on our own terms - I was just as able to block it out as I'd been in the hospital.  It had, for better or worse, become a familiar habit, a well-worn path in my brain.  In fact, our night out, a night that resembled so many wonderful nights out during our pre-baby days, mostly saw us stopping to remind ourselves that yes, we are parents, and yes, all of that really did happen to us.  "Can you believe we have kids?"  "No seriously, we have two kids."  "Our kids are at home right now.  The kids that are ours that we had."

It always astounds me how well our minds can compartmentalize when they need to.  I look back on our experience and think, how on earth did we manage that?  How did we go through that every day for so long?  But the answer is just that we had to.  And seeing how easy we found it to adjust to leaving the babies again, all these months later when our lives look so normal, I realize that no matter how much time passes from those days, no matter how well the babies develop, those early experiences will always be a part of us.  Maybe all we can hope for is that we think about it a little less.

Progress

On Tuesday, the babies and I woke up far too early and headed out to Sick Kids Hospital for Madeleine's usual three-month checkup with her neurosurgeon.  He's seen her four times now since February, and thankfully, we haven't yet had any issues to worry about as far as her shunt function goes.  He asked a few questions about Madeleine's motor development and about potential issues, like having a preference for one side of her body over the other.  No, I told him, no problems yet that we can see.

I was hesitant to ask the question I really wanted to ask, the only question that really matters.  "Do we know anything for sure yet?  Do we know if she's going to be okay?"

He answered in that way that doctors do sometimes, when they don't want to commit to something they can't guarantee.  "It's too early to say," he said.  "But I will say that given the severity of her bleed, I certainly didn't expect her to be doing this well."

It was just what I was hoping for, what we had been dreaming of all of these months.  But at the same time, there was still something nagging at me, still a whirl of anxiety making it's way through my chest.  Of course I'm grateful to hear that Madeleine is doing better than expected - of course!  But even though we've been watching her blow us all always this whole time, even though we had a feeling that she was doing better than she could have been, even though every little new thing she does is a big step in the right direction, I had been trying very hard to not consider the outcome I've always really been hoping for - that maybe nothing will be wrong with her.  I'm hesitant and slightly ashamed to even write those words, to let them slip out of the secret place in the back of my mind I've reserved for the best case scenario.  Best to prepare myself, I figured.  Best not to get my hopes up in case something still goes wrong.  Best to take it a day at a time and not get ahead of myself.

I'm ahead of myself.  I can't help it.  Each time Madeleine impresses her doctors, the part of me that dreams of my girl running and playing and having chatty, articulate conversations gets a little more excited.  The part of me that hopes that she'll grow up and we'll look back and say, "you had hydrocephalus, and look at you know!".  The part of me that hopes that one day we will be the people telling the scared, new preemie mom that their daughter had a grade III intraventricular hemorrhage and you'd never even know it.  And each time nothing goes wrong, that hope gets a little bit stronger.

Of course, I know that if that doesn't happen, if she has developmental impairments that are mild or moderate or crazy severe, if she ends up not being able to walk without help or talk or write or if she needs special help at school, if she has trouble seeing or hearing or whatever it is, it will be more than fine.  She has already shown us that she is perfect and incredible.  I know that even the progress we have made so far is an achievement, that many babies like Madeleine haven't done so well, that we should be counting our blessings for what we have.  I know that no matter what, our lives won't really change that much at all, and motherhood will still by far be the best thing that will ever happen to me, the most incredible, life-changing gift I've ever been given.  I know that health issues and disabilities do not at all change the heart of who a child is.  That they will not change who Madeleine is.

But then there is the part of me who dreams of Madeleine's future and wants her to have only the best, most incredible, easy, beautiful life.  The part of me who doesn't always count her blessings.  The part of me that hopes that we'll beat the odds despite everything we've been through.  That part just might end up pretty disappointed.

Eight Months Old

Today, the babies turn eight months old!  They aren't really eight months, of course - more like almost five based on their due date - but this milestone had me thinking a bit:  at what point will we stop thinking of them based on their "corrected" age?  Up until this point, I've been almost completely oblivious to the concept of their actual age, I really only ever think in corrected age.  But today, at eight months, I stopped to think.  Madeleine and Reid were born eight months ago.  Eight months ago!  We've been together for eight months now.  And what a ride it's been.

Madeleine at eight months...

... weighs 12 lbs 4 oz, which makes her a bit of a petite little lady!

... is rolling over like a champ, all day long.  Her sheer determination kind of surpasses her actual strength though, so she often thrusts herself onto her belly without quite being able to roll back before getting tired.  Frustration ensues.  (She'll get there!)

... is starting to really notice the world around her.  She loves watching everything, loves staring at her brother and reaching out to touch him and hold his hand (and sometimes to clock him in the face!).  She's even begun trying to reach out to Rosie, and is starting to really get interested in this little furry friend of hers!  So fascinating to see her become interested in things that weren't really on her radar before.

I know everyone thinks their children are the most beautiful children to ever exist, but sometimes I look at Maddie and think, "wow, I can't believe how beautiful she is." Not even just in terms of physical beauty, but everything about her, her whole being...I think she is incredible.  The way she smiles wide when she first sees you in the morning, the way she loves it when you give her kisses, her fiery determination, that spark she has that makes her so "Madeleine-y".  I think about everything she's been through, and then I think about this remarkable, beautiful little soul I get to spend my days with, and it's almost too much for my brain to handle.  It is an incredible privilege of the highest possible level to get to be her mother.

Reid at eight months...

... weighs 15 lbs!  Reid has been eating, eating, eating, and growing like a weed over the last little while.  I only just pulled out his 3-6 months clothes, and already I've had to start putting some of them away because he's outgrown them!

... has finally grown in a full head of hair after his previous balding stage.  It's gorgeous, and it's STILL BROWN, which makes Mama really happy!!!

... thinks EVERYTHING is funny, and laughs all the time!  It is wonderful.  His personal favourites are diaper changes (he thinks they're hilarious!!!), and when we ask him whether he's a funny guy ("yes I am Mama!  Look at me laugh!!!").  I don't think I will ever get tired of hearing his little giggles.

... is struggling with tummy stuff still, and more awful diaper rashes!  It's interesting having twins, because we do the same things for both babies, and yet, Reid is constantly getting rashes while Maddie has never had one!  Just goes to show how every baby is different, I think.

... continues to be his sweet, snuggly little self who just loves to be loved and held, which is great for me, as I love to love and hold him!

These days, we are getting out a lot more as a trio, which is great.  It is still a challenge, and some days we probably would have been a LOT better off if we'd stayed home, but it's still exciting to see us progressing.  Motherhood is tough at the best of times, but the payoff is so fantastic and so surprisingly beautiful that it helps keep the momentum going on days where I feel like I'm starting to sink.  Eight months in, and we are so doing this!  Go team!!!