What I Know Now

Tomorrow, November 17th, is World Prematurity Day, a day focused on raising awareness about premature birth around the world.  Before I got pregnant, I never imagined I'd end up giving birth at twenty-five weeks, but it happens far more often than anyone realizes.  To learn more about World Prematurity Day, visit the World Prematurity Day Facebook Page, or follow along on Twitter with the hashtag #worldprematurityday.

One of the things I love most about writing this blog is hearing from other preemie mothers who hear their own stories in my words.  To everyone who has ever written me since I started writing about my twins, please know that I so very much appreciate you taking the time to share a bit about your own journey.  The more mothers I hear from, the clearer it becomes - preemie stories matter.  All of them.    No matter how easy or hard a course we had in the NICU, no matter how long we were there, these stories have become part of who we are as mothers, and they deserve to be honoured.  And, of course, our amazing, tiny, warrior babies deserve to be honoured too, whether or not they are still living, whether or not they are meeting their milestones, whatever their situations look like.  And no one will understand that like another preemie parent.

Sharing Our Stories: Maja & Alexis

The more I hear from other preemie moms, both in person and through this blog, the more I am struck by the similarity of our experiences.  Each path is different, every journey is significant, but the moment you hear yourself in another mom's story - your thoughts, your fears, your feelings - is the moment you realize that you are not alone.  NICUs are filled with families fighting the same kind of fight, and yet it can feel so isolating so much of the time .  Not only do we need to hear these stories, the stories that sound just like ours, we need to tell them, too. We need to speak of our own pain, of the close calls and the sleepless nights and the magical moments our endless prayers were answered (and the moments when they weren't).  And we need to hear them, to know that, no matter how lonely it can seem, there actually are others out there who understand.

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.

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.

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.

Sunnybrook

One of my recent posts, Milestones, is up on the Sunnybrook NICU blog today.  I can't possibly ever say enough about what the amazing people at Sunnybrook have done for us, how important that place is, and will always be, to Matt and I.  The Sunnybrook NICU was Reid and Madeleine's "home" before we ever got to think about bringing them to ours - where I saw them for the first time, where we had our first cuddle, where they took their first unassisted breaths, where we became a little family. We received such wonderful care and support from everyone there, had such incredible nurses helping us and teaching us and rooting for us, and for that we will be forever grateful.

(Thank you, Kate Robson, for sharing my words on the blog!)

Milestones

One aspect of parenting I had never considered prior to having kids is how preoccupied I would become with their development.  When I was pregnant, I thought (hoped?) that I would have this wonderful relaxed attitude towards the twins' growth, that I would just trust the idea that all babies have their own schedule and that they would eventually get there in their own time.  And then I gave birth at twenty-five weeks.  (Funny how that changes things.)

When you go into labour that early, one of the first things you are told during that scary blur of time before your babies arrive, is that premature babies are often developmentally delayed, even if nothing else happens to them.  It's a consequence of missing all of that extra time in utero, and it's totally reasonable.  Then, your babies come out, and everyone reminds you about the chance of delays, and you say, yes, yes, of course, delays, no big deal.  But in your head, you think....I really, really hope we will be the exception.

Eventually, the other women in your life with due dates around yours give birth to full-term babies, and you are happy for them, but also sad for you.  It's a reminder of what you never had, a reminder of all the awful stuff you had to go through because you never made it that far, and you start to become a little bit obsessed with the milestones.  Her little boy is making lots of cooing noises, why isn't Reid?  Her little girl is rolling over already, why isn't Madeleine?  You ask lots and lots of questions.  How much does your little one weigh now?  How much does she take at her feedings?  Is your baby doing lots of tummy time?  Is he smiling or giggling?  Does she reach for her toys?

It is of course, completely relevant and irrelevant at the exact same time.  Every baby is different, and every baby will approach these tasks in their own way.  Reaching a developmental marker late does not mean your baby has a problem.  Except when it does.  Whenever Madeleine sleeps a lot more than Reid (which is most of the time), or vomits, or is grumpy and cries, I worry that her shunt is malfunctioning (and never that she maybe just likes sleep/ate too much/is just grumpy).  When other babies show more progress with motor development, my brain automatically screams CEREBRAL PALSY.  When Reid fails to coo or make noise when he tries to giggle, I wonder if maybe his vocal cords were damaged by his ventilator.

And then, just like that, Reid will start gooing and gahhing when you are talking to him like he's been doing it all along.  Madeleine will easily roll onto her side on her play mat like it was nothing, even though she never expressed any interest in doing it the day before.  And, just when you least expect it, Reid will let out a big, enthusiastic laugh on the change table before he is put down for bed, and your heart will skip a beat.

It is a reminder that, while I did get premature babies, while they had to come out into the world before they were ready, they are still fully-formed, capable little people who have managed to make it through things that even adults would struggle with.  Even though I'll probably never stop worrying, I owe it to them to be patient and trust their own abilities.  They are really, really good at showing us what they are made of.

Follow-Up

When you give birth at twenty-five weeks, you receive a lot of frightening warnings about what might lie ahead.  Developmental delays, complications, surgeries, infections - it all gets thrown out there at one point or another, because the likelihood of something bad happening is uncomfortably high.  But then, probably in an attempt to temper those scary possibilities, they always mention the follow-up clinic.  When babies are born early and small, they are followed long after discharge - until age six - by a great team of people who help those babies meet the developmental milestones that are so important to their growth.  For us as parents, it felt like a bit of a silver lining - yes, all these bad things might be happening, but there are people who will try and help you minimize their effects.  We wouldn't just be waiting to see what the outcome would be, we would be taught how to be proactive about helping our babies.  But at the same time, in many ways, it would be a six-year-long reminder that, while we may be out of the NICU, we are certainly not out of the woods.

Madeleine and Reid had their first follow-up appointment today, with the physiotherapist and neonatologist who followed them (particularly Madeleine) so closely during their hospital stay.  We had heard many times already to expect that there will always be lots to work on - that even if they were doing phenomenally, you would never leave follow-up without homework.  And yet, even though I knew they would find stuff, even though I knew myself what some of those things would be, I couldn't help but feel a little sad when our appointment had finished.

Just before the babies were discharged, I worried about what it would be like to have preemies at home instead of the hospital, where it had started to feel almost like they belonged.  I didn't know how to be a "normal" mother, and in any case, I didn't exactly have "normal" babies to take home.  And then, the twins were discharged.  After a day or two passed, it started to seem so strange to think of them as the same hospitalized prems we had spent months visiting every day.  Everyday they appeared in our eyes to be more and more like every other full-term newborn out there.  I started to forget their actual chronological age (if you ask, I will reflexively tell you that my babies are seven weeks old), started not to notice their misshapen preemie heads, or their general sprawled out floppiness.  They seemed just enough like normal babies - normal, perfect little babies - to forget, just a little, what we had been through for a couple of months before.

Today, I remembered.  Nothing bad was said at follow-up, there were no major issues (in fact, I do think we were told that the babies were doing great), but it was a reminder that there is still a lot to work on.  The past few weeks, we have been such typical new parents - dealing with crying jags and projectile pukes and explosive poops and diaper rashes non-stop eating - that we forgot we also had to deal with atypical parent stuff, like physiotherapy exercises and rounding out heads and shunts and eye contact and lots and lots (and lots!) of tummy time to build up those weak preemie muscles.  We were too busy trying to get Madeleine to smile to notice that she only likes to sleep on the side opposite to her shunt, too preoccupied admiring Reid's head control to realize that it was stemming from his overcompensating back muscles.  Again, not entirely a big deal - they are still completely amazing, thriving babies - but a reminder that they are still a little bit different, that some of the things we will have to think about aren't things that most parents do.

We will go back in two months and hopefully will have incorporated enough of the suggestions we got today to see a bit of a difference.  And then, we will inevitably have a new set of things to work on.  It is difficult to consider that we might never get to a point where being a premature isn't at least a small part of who they are (at least, not while they are still children).  But I also hope that we will be able to maintain our unique parent perspective that, even with their special preemie differences, they are still whole and perfect, with no missing pieces, just as they are.

[caption id="attachment_640" align="aligncenter" width="576"] Don't be silly Mom, you know we're awesome.[/caption]

For Reid

When I finally arrived at the hospital to visit you today after a few days of staying home with your sister, I felt pretty bad.  I don't necessarily think anyone would have faulted me for not having it together enough to be spending time at the hospital with you while also figuring out how to have Madeleine at home, but at the same time, there was no question that you were getting the short end of the stick.  It wouldn't be the first time either, since I'd had to leave you before while Maddie was at Sick Kids.  But when I got there, feeling all mom-guilty about it, the nurse handed you over to me and you burrowed in immediately like usual, ready to eat like nothing happened, as if to say, meh, no hard feelings.  It was, for lack of a better term, so very Reid of you.

I'm not sure if I'm supposed to admit this, but when I found out I was pregnant, I really wanted a girl.  Then, when we learned it was twins, I thought, "I really hope at least one of them is a girl".  In fact, I was completely terrified I would end up with two boys.  What would I do with two boys??!  But then, of course, you were born.  And ever since that day, I have been so, so incredibly grateful that nobody listened to my original request.

You are just one big love ball.  You weren't able to be cuddled for a while in the beginning because you needed so much help to breathe, and then when we finally did it, you soaked it all up and never looked back.  When we snuggle now you get right into every possible nook, and open your arms out wide as though you are trying to hug me back.  Even though I am more than happy to give all the love in one direction (yours), there's something that always somehow feels reciprocal.  I like to nuzzle against your face just to get you to nuzzle back, and when my hands are close by, you grab onto them.  Now that you have developed super pro star neck and head strength, you use it to pull away and stare right at me.

At the same time, you are so very impatient.  You want everything yesterday, and there is no reasoning with you if it doesn't happen.  Not only do you cry about it, but you cry about it in such a heartwrenching way - your lip quivers and your face scrunches right up - that it becomes so hard for me to remember that it's entirely okay for me to let you be upset sometimes.

Probably my favourite example of these two traits - your loveliness and impatience - is seen when you feed.  Breastfeeding is hard when your babies are born far too small to eat, but even if that hadn't happened, it wasn't something I ever envisioned enjoying.  But you are so enthusiastic - you want to eat all the time and you want it nownownowgo! - that I cannot imagine trying to take that away from you.  You get grunty and wide-eyed, and you hold on like your life depended on it.  It is pretty much the best thing ever.

I learned early on in your life, when you were taking longer than expected to come off the ventilator, that you have your own schedule.  As much as it worries and frustrates me when you have setbacks, I try to remember that it doesn't mean you are incapable - you always, always get there - but that you just need a chance to do it in your own time.  I am glad I have already been able to learn that about you, and hope that I will be able to keep it in mind as you grow (I apologize already though for the times I will forget - I think you might just get your impatience from your mother).

I am pretty sad right now that we are experiencing Madeleine's homecoming without you, because you are such an important member of our new little family.  You bring me so much joy I can hardly stand it, and there is so much love and sweetness inside of you.  I'm not quite sure how I got so lucky, but I am so glad that I did.

Come home already, would you?

Home, Part One

Since I last posted an update, an awful lot has happened.  We hit the 100 day mark in the NICU.  My due date came and went.  I turned 27.  We had meltdowns and felt like the babies would never come home.  And then, one day, just like that, we packed Madeleine into her car seat and drove home.

Truth be told, I am still adjusting to the idea that we are full-time, full-on parents.  Madeleine is home to stay, she lives here now and always will.  At the same time, Reid is still in the hospital.

Only a little while ago it looked like Reid would actually be the one to come home first.  Madeleine had always been one step ahead of Reid in terms of development, but then her surgery levelled the playing field a bit and allowed him to not only catch up, but surpass his sister.  He took off like a bolt when it came to oral feeds, but then he failed his car seat test (three times!)  Add to that a mysterious rash and a suspected tummy bug, and his discharge date got pushed back at least a week or two.  Since Madeleine was no longer in need of hospital care, she came home on her own.

Having Madeleine home has been, like everything thus far, the best and worst thing simultaneously.  But this time at least, it is the best and worst thing the way it normally is for new parents and not the way it has been under our unique NICU circumstances.  We are tired in a way that we never thought possible, anxious, snappy, and, no really, seriously, mega tired, but at the same time, it is incredible.  It is everything we'd hoped it would be, but never really thought we could have after what felt like a never-ending NICU stay.  There have been rocky moments, but in such a normal, 'all parents experience this' kind of way that even the bad parts don't seem so bad.  It is what we envisioned when we first got pregnant many moons ago.  (Although…did I mention we are really, really tired?)

When we first brought Maddie home, I started to wonder if maybe it was actually better to only have one baby home at first until we figure out what we're doing (it turns out one baby on its own is a lot of work too!).  Now though, I'm thinking that it is actually much, much worse to have one baby left in the NICU than it was to have two.  Not only is it a logistical nightmare - all the back and forth of before without actually having any free time or energy - but you also know exactly what you're missing.  I cannot wait to have Reid at home with us where he belongs.

Even though I am struggling having my son in the hospital while we get to enjoy Madeleine at home all day, it is worth remembering that the fact that she is home in the first place means that we are almost completely over the incredible hurdle that is a long-term NICU stay.  Until Madeleine came home, it still felt like we would be there forever.  Now, we know that we won't, and furthermore that this is really just the beginning of what it was always supposed to be like.  A big milestone, to say the least.

Thirty-Nine Weeks

Well, it is clear at this point that I've become a little bit useless at keeping this blog updated!  But since so much has happened in the past month (and since I currently have more than five minutes at home to sit down and actually write about it), I definitely wanted to get it all up here.

Big Things That Have Happened Since A Month Ago:

- Madeleine had a second surgery, to remove the temporary shunt and insert a permanent shunt that drains into her belly

- Reid has joined his sister off of breathing support, and they are now breathing normal room air with their lungs like proper full term babies

- Reid and Madeleine have begun to work on oral feeds, which is one of the last big steps before coming home

- We have been moved into one big twin room, which means we no longer have to go back and forth between two separate rooms

- The twins are now one day short of 39 weeks gestation, and are practically gigantic given their birth weights as their official due date (March 24) nears.

The real major difference however is just how 'normal' the babies have become.  When we started on our NICU journey at 25 weeks, it felt impossible that Reid and Madeleine would ever not be teeny, tiny, odd-looking prems lying in incubators and hooked up to ventilators.  Now we are at the point in the babies' development where they are big, alert, breathing, and not really requiring much direct medical care at all.  They cry loudly, are hungry all the time, make funny faces, have big poops in their diapers, wear cute outfits, and snuggle in for cuddles.  In other words, they're basically just...babies.

As we transition into to last stage of their NICU journey, the demands being placed on us are also starting to increase.  Since the babies need to learn to take their feeds orally in order to come home (as opposed to getting their feeds from their feeding tubes like they've been doing), and since I am hoping to breastfeed the twins as much as possible once they come home, I need to be at the hospital pretty much all the time.  Right now, I aim to arrive around 10:30am to prepare for Reid's 11am feed, and try to leave after Madeleine's 9pm feed at night.  It is a long day to say the least, and I am chomping at the bit to be able to do all of this from the comfort of our own home instead of the hospital!  But while we are starting to slowly see the light at the end of the tunnel, it will still probably be at least another month before coming home becomes a reality.

The other big change is the difference in the way we are thinking about the babies' progress.  We are so glad to be coming out of the stage where everything was so much more precarious - when we were more worried about their breathing or when we contemplating what would happen if Madeleine needed surgery.  Day-to-day the updates are pretty much happy and uneventful now, but what lies ahead for us is still a giant question mark.  The answer to the often-asked, "How are the babies?" is "Ok...ish".  They're well right now, but they might not be in the future.  Good and bad.  Who knows?

Ultimately though, even with all the stressful bad stuff, and the infinite what-ifs (especially for Madeleine), I can't help but feel that I must be the luckiest mom that ever existed.  I don't know what it's going to be like to take them home, I don't know if I'll ever not be exhausted again for the rest of my life, I don't know if I'll end up with one (or two?) mildly/moderately/severely disabled child/children, if everything might end up being one big forever-long struggle.  But what I do know for sure is that no one else in the world gets to be Madeleine and Reid's mom.  And being their mom is pretty much the best thing ever.

Two Months Old

The babies are now two months old, and boy have they grown.  So much has happened in the past little while - good and bad - that I think our heads are spinning a little bit.

Some updates (in point form, because my brain is too mushy for fully formed paragraphs):

- Reid is back on high flow and doing pretty well (when he stops trying to pull the prongs out of his nose at least).  He's giving cycling a little go, which is when he takes a break from breathing assistance for a few hours at a time.  In Reid's usual style, he's taking his own sweet time adjusting to this, which as far as I'm concerned is completely fine.  Slowly, but surely...

- Madeleine and Reid are both done with their incubators and have moved into cribs!  This is a very exciting update, as it means they are capable of regulating their own temperatures without the help of the incubator.  It also means they are wearing clothes, which is super adorable.  Seeing the twins in clothes and cribs makes them look more like 'normal' babies than they ever have before.  So great.

- Madeleine is back to her old room next to Reid's, which is great news for Matt and I!  It was absolutely awful having the babies in separate hospitals, but still a bit frustrating when Madeleine came back to Sunnybrook and had to stay in a different pod than her brother.  It is so, so, so much easier to have them back in adjoining rooms with a door between them that we can leave open.  Makes it much easier to feel like we are spending a fair amount of time with both babies when we visit.

- Things are still up and down with Madeleine's head.  Her MRI didn't look great, but thankfully Sick Kids decided that it wasn't bad enough to send her back just yet.  Her ultrasounds have been increased to bi-weekly (which means bi-weekly anxiety attacks for mom and dad).  She has had two ultrasounds since the MRI, and the results have suggested that maybe things aren't super bad just yet, but also not super great.  Still holding our breath for some good news.

- Matt's car accident has meant that we are (hopefully temporarily) a one-car family.  It has made things even crazier for us, but the one good thing has been that Matt had the chance to spend last week with the babies since he was unable to work.  It was kangaroo cuddle galore!  We've seen in the past how much those cuddles can help (Reid especially seemed to respond to them), so I can only hope that somehow it will work some magic on Madeleine's ventricles as well.

- Now that Madeleine is breathing on her own and doing great, we were able to try breastfeeding!  I wasn't at all sure how that was going to go, but she did really well.  I have heard that teaching a prem to breastfeed is a long and arduous process, but I am still looking forward to it (at the very least, I'll be happy to spend a little bit less time with that pump!).  Since Reid is still on high-flow, he can't clock any boob time just yet, which is a little bit sad as he roots like crazy when you hold him.  He's even tried to suction himself onto Matt's chest while they cuddle, which must have been rather disappointing...

- Not exactly baby-related, but Penny and Rosie will be coming home mid-March.  They've been living up in Orillia having what I'm sure has been the time of their lives while we deal with all the stuff happening with the twins, but it's time to think about getting them back and adjusted to our new family life.  I am a little nervous about how this will go, since there's still so much that has to happen before the babies can come home and our life will settle down in that way, but then of course we will also have to figure out how to have two babies and two dogs at home full time.  Madness!  (But we still can't wait for it to happen and have our whole family under one roof)

- The babies are growing like weeds!  Madeleine now weighs 4lbs 11oz, and Reid weighs just over 5lbs.

[caption id="attachment_504" align="aligncenter" width="478"] Five pounds![/caption]

[caption id="attachment_506" align="aligncenter" width="482"] This is her sweet face.[/caption]

[caption id="attachment_507" align="aligncenter" width="480"] Wearing clothes. Like a boss.[/caption]

[caption id="attachment_508" align="aligncenter" width="482"] Yeah, strawberry hat![/caption]

[caption id="attachment_510" align="aligncenter" width="480"] Hanging out, having a bath...[/caption]

 

Momento

Bad News/Good News

Bad News:  Madeleine's most recent head ultrasound showed that she has developed a new bleed in one of her ventricles and in part of her brain tissue.  Possibly a result of the shunt surgery, possibly a result of the pressure change in the blood vessels now that the swelling is going down.  Not quite sure what this all means yet, but Madeleine had an MRI this morning and we should find out the results tomorrow.  Very sad and frustrating.

Good News:  Madeleine no longer needs any assistance to breathe.  This was a big shock, since she had only recently transitioned on high-flow oxygen (oxygen plus pressure, but less pressure than CPAP).  I assumed she'd still need to be on high flow for a while, but Madeleine had other ideas and let everyone know that she was so over the breathing machines.  Can't believe my little girl is breathing like a normal baby now.

Good News:  Reid also decided to ditch his CPAP and give high-flow a try.

Bad News:  He only lasted a few hours.  I felt so bad for Reid when the respiratory therapist decided it was time to put his CPAP helmet back on - Reid is so big now (4lbs 9oz) that he gets very frustrated having all that equipment on his head.  It's pretty clear that he really wants to be done with CPAP, but for now, he still needs a little extra help.

Good News Best Ever News:  We were finally able to get the twins together for a cuddle!  We knew all along that this could only happen once at least one baby was off their breathing apparatus, so once I heard that Madeleine was breathing on her own, I knew we had to try and make it happen.  Even though Matt and I had always been looking forward to the day we could have both babies together, it was obvious that neither of us was quite ready for it.  Having the babies in different rooms had somehow made it feel like we only really ever had one baby - we've only really ever had to think about or care for one baby at a time.  Holding them both made it sink in that there really are two of them, and we really will have two babies at all times for the rest of our lives.

As excited as we were to hold both babies at once, we were equally as excited to see how they would react to each other.  Up until two months ago, Reid and Madeleine had spent all their time cramped up against each other in my belly.  At the same time, and unlike most twins, they had also spent the last eight weeks completely separated.  I guess Reid didn't exactly mind the alone time though, as the first thing he did when his sister came in the room was turn his head away!  Madeleine promptly grabbed a hold of Reid's hand once we snuggled her in with us though, which we'd like to consider was a deliberate sign of love and goodwill towards her brother (though it was probably much more a product of her infant reflexes).  That was pretty much the end of their interaction however, as both babies promptly conked out for the next hour before we had to put them back in their beds.

Getting Older

Apparently, my babies are getting older.  We are aware of this, of course, but I feel like it has suddenly become A Thing.  For example, my precious little boy is starting formula today ("He's getting older!" says the nurse.  "Can't stay on donor milk forever!").  They're considering transitioning him to high-flow oxygen ("He's getting older!  Can't send him home on CPAP!").  Both babies have started crying and thrashing around, frustrated in their incubators ("They're getting older!  They're not just going to lie there and sleep all day!").  While this means that we're getting closer to taking these two home, having it suddenly happen in the blink of an eye one day makes for one shocked mama.

One way I have irrationally attempted to cope with this development is by attempting to spend my days pumping fast and furious like a crazy lady.  "NO BABY OF MINE WILL HAVE FORMULA!" I proclaim in my head.  But of course, both of my babies will most definitely end up on a fairly substantial amount of formula if I want them to eat and grow and live.  And, despite all the encouragement from our lactation consultants, I am fairly sure that by this point in my (older!) babies' lives, there isn't a whole lot I can do about my pathetic milk supply, but that doesn't stop me from trying to stop the process of my little ones growing faster than I am prepared for.

Of particular concern is the frustrated thrashing.  I have tried my best to mentally prepare myself for having two babies at home that cry and scream and freak out like babies do, but I guess I assumed that wouldn't happen until I, you know, took them home.  I see it already beginning though, as both Madeleine and Reid will wake up suddenly to realize that something is wrong, and cry and thrash in the hopes that that something will resolve.  Unfortunately, I happen to have no idea what that something is, so I just sit there feeling useless until they figure out a way to settle themselves.  In my imaginary 'two babies at home' mental scenario, I would  try to do something helpful like pick them up and give them a cuddle, but you can't really do that when your baby lives in a little plastic box.  So instead I just sit there and try to offer them some unhelpful reassuring words while watching their heart rates climb on the monitor because, c'mon Mom, do something already.

In any case, I am still aware that being here with my already-seven-week-and-change babies is a big accomplishment.  Reid is well over 4lbs now, and both babies are finally starting to pack on some fat rolls which are so wonderful to see.  And even though it hurts me when they cry, their cries now are actually starting to sound like real baby cries instead of sad little lamb cries.  I know that not all mamas get to see their babies grow when they were born at only 25 weeks, and that it was never guaranteed to us either.    At the same time, with still so many weeks of NICU life ahead of us, it will be a challenge to to watch Madeleine and Reid continue to get bigger and stronger while still being stuck in incubators and attached to machines.

Surgery Number One

Hard to believe it's only been a week since my last post, because boy has that week been eventful.  Having Madeleine at Sick Kids has been very challenging for a number of reasons - another hospital visit to cram into the day, more travel time, a completely different facility with completely different ways of doing things that we don't always feel comfortable with, generally feeling out of the loop when it comes to Madeleine's care and having to walk the line of being an advocate while not being pushy.  But mostly the hard part was that she needed surgery, and will probably need another one in a few weeks time.

The neurosurgery team here saw Madeleine's MRI results and decided that she most definitely needed a shunt in order to relieve the pressure and swelling in her ventricles that has resulted from the blocked flow of fluid.  We knew of course that this was happening based on her head circumference measurements and her weekly ultrasounds, but until we got to Sick Kids I didn't know just how bad it was.  They went ahead and placed a temporary subgaleal shunt in Madeleine's head to start the process of draining the fluid, and will they likely also have to insert a permanent shunt in a few weeks once Madeleine has had a chance to gain more weight and put on some more subcutaneous fat.

We are a few days out from surgery now, and Madeleine is doing okay.  She is still ventilated, and was initially having trouble tolerating her feeds, but is now back to her full amount every two hours with only small amounts coming back up, and she should be extubated soon.   The other issue of concern is what this will all mean for Madeleine's long-term brain development, but since it is pretty much completely impossible to gauge that right now (or anytime soon, for that matter), we're doing our best to push that worry aside.  Yesterday she was given the green light from neurosurgery to be transferred back to Sunnybrook, and we are hoping she will be discharged soon.

Even though Madeleine's brain has become the more pressing priority as of late, we have still been visiting Reid as much as we can, and he has been getting lots of cuddles.  This is important to note because, does that boy ever like to be cuddled!!!!  Since his lungs are not as strong as Madeleine's (and also perhaps because he had the issue with his murmur), he has a tendency to struggle a little more with keeping his heart rate and oxygen saturation steady.  Take that boy out for a cuddle though, and he does so well!  It is so wonderful to know that something we absolutely love getting the chance to do is also something that makes him so much happier and stronger.  (Note to Reid:  please maintain this preference forever and ever ok thanks.)

This past week was definitely one of the toughest we've had since the babies were born, but now that Madeleine's surgery is complete and both babies are doing fairly well, it feels like we can breathe a little easier again.  I am definitely starting to understand well why they call the NICU experience a rollercoaster ride.

[caption id="attachment_454" align="aligncenter" width="611"] Madeleine, pre-surgery.  Small, but mighty (and also super cute).[/caption]

[caption id="attachment_455" align="aligncenter" width="609"] Reid showing off his breathing skills and his big blue eyes[/caption]

Visit to Sick Kids

I've shared this update with people individually here and there, but I thought I would post it here as well for anyone out of the loop.  Madeleine's ventricles have continued to grow since her last ultrasound, and the neurosurgery team at Sick Kids decided it was time to bring her in for an MRI, and to most likely place a shunt.

Madeleine was transferred yesterday afternoon, so I headed down there to be with her.  It was a difficult day for me, as it was stressful trying to adjust to a totally new hospital with a totally different way of doing things, but the good news is that Madeleine seemed completely unfazed by the entire thing (I guess that's the thing about babies!).  She is still on CPAP at Sick Kids, except they don't seem to use the big velcro helmet to hold it in place, which was nice as I was able to see so much of her face.  And I basically stared at it for two hours straight when the nurse took her out so that we could have a cuddle before her MRI.

I've said a million times now how much I love cuddling with my little ones, but we've always only ever done kangaroo cuddles (holding her up against my chest skin-to-skin).  There are a number of benefits to preemie development with that kind of snuggle, so I was a little bit confused when the nurse took Madeleine out without giving me a gown or at least expecting me to take my shirt off.  Instead she just wrapped Madeleine in a blanket and handed her to me.  I realize this is how 99% of mothers usually hold their babies - cradled in their arms, not naked on their chests - but the idea that I could just sit there in a rocking chair with a baby in my arms was so completely foreign to me!  I had to ask the nurse repeatedly if she was sure ("Really though?  With Madeleine?  You're sure??"), and then it occurred to me that Madeleine and Reid were actually full-on real babies that will eventually breathe on their own and leave their incubators and get fat and come home and cry and be held in our arms like all the other babies.  Unreal.

Our new cuddle position and Madeleine's lack of helmet meant I could get some nice, out-of-incubator photos of my girl.

I will head back down to Sick Kids today to speak with the neurosurgeons and see what they've decided to do based on the MRI results.  Yesterday it sounded like they were trying to get an OR booked for today, so I am preparing myself mentally for Madeleine having surgery at some point this afternoon.  It's not at all the outcome we were hoping for, but my main concern now is getting Madeleine's brain back the way it should be (and if that means a shunt, I guess that's what we'll do).

Please keep Madeleine in your thoughts today.  She is such an incredible little girl.

Bad News Comes In Twos

After riding a wave of 'ups' over the past week, it is now apparently time for us to go back to experiencing some 'downs'.  Though we've all been rooting for him, Reid unfortunately had to be reintubated Thursday afternoon, as he was completed tuckered out from five long days of breathing on his own.  On Wednesday during my visit, Reid stopped breathing and actually needed to be bagged manually by the nurse to get his oxygen back up, which was a clue that he was starting to have trouble.  It happened again a few more times yesterday, which led to him being put back on the ventilator .  While we knew that chances were high he would probably need to revisit the vent at some point (Madeleine also had to be reintubated for a while after she got tuckered out from her first CPAP stint), and while it is still pretty great that he was able to come off of the ventilator for a little while, it was still a rather sad setback.

As if that weren't enough of a wallop, we also got news yesterday after Madeleine's weekly head ultrasound that her ventricle size has actually started increasing again by 1-2mm.  This was definitely not something we saw coming at all, given that her last ultrasound showed a decrease, which seemingly suggested that things were getting better.  We had a good chat with Madeleine's doctor today, and the current sense is that there isn't enough good data yet to figure out what's really going on.  Was the latest ultrasound incorrect in showing an increase?  Or was last week's encouraging ultrasound the incorrect one?  Could the measurements actually be fluctuating and maybe still need to level out?  Could the CPAP helmet be throwing off her head growth?  At this point, it looks like the only option is to wait and see what happens, and go back to praying that the numbers start to go down again.  If things don't improve, surgery might be on the horizon again, and either way we have to also consider what this could mean for Madeleine developmentally as she grows, given that her brain tissue may have been damaged.

Even though this is all feels pretty grim, and while we won't know for quite a while what we're really in for in terms of the twins' futures, we were reminded today by the neonatologist that there is still a lot that we can do to try and influence the babies' outcomes - and right now, that namely means lots of loving cuddles.  That was music to our ears of course, and both Reid and Madeleine came out of their incubators for snuggles today (Madeleine actually got two cuddles, but shh, don't tell Reid).  We hadn't really realized just how valuable skin-to-skin time actually is to the babies' growth and well-being, but now we will definitely be making a point to clock as much quality cuddle time as possible.

[caption id="attachment_374" align="aligncenter" width="870"] I feel the same way, little one![/caption]

One Month Old

Madeleine and Reid are one month old! To put this ridiculousness into perspective, I realized today after visiting with a friend (hi Amanda!) and her seven-month-old son, that her seemingly-ginormous baby is only six months older than my puny little peanuts.  They were born in the same year!  They will begin school at the same time!  Now, our little ones of course are not proper one-month-olds - still "minus ten weeks" if you will - but it is still pretty crazy to consider that Madeleine and Reid have already been here for an entire month.

I feel like it's almost kind of cliche to comment on how quickly your babies are growing ("they grow up so fast!"), but seriously.  Not only does it feel like I gave birth approximately five minutes ago, but it also still definitely feels like we are destined to have two tiny preemies in the NICU for the rest of all eternity.  With the babies just having passed the 30 week gestation mark this past Sunday, we do still have a while to go, but I have now made a point to suggest to Matt that, hey, maybe we should get around to finally ordering that second car seat.  I am almost entirely sure we won't be ready when the "taking the babies home" talk starts to happen (though what an exciting conversation that will be).

Madeleine at one month...

- Weighing in at 1280 grams (2lbs 13oz!)
- Receiving 16ml at each feed
- Back on CPAP and doing great
- Getting lots and lots of cuddles
- Generally doing well day-to-day, which makes for boring blog updates, but happy parents

Reid at one month...

- Weighing in at 1378 (just over the 3lb mark!) and looking positively beefy, if you ask me
- Receiving 17ml at each feed
- On CPAP finally, and hanging in there pretty well (he does still have spells, but nothing that is requiring reintubation just yet)
- Has now had his first cuddle with Dad
- Currently working on getting over a bit of a lung infection with the help of some IV antibiotics

Another reminder that these little guys are indeed getting bigger and stronger after their first month of life? Today I witnessed Madeleine and Reid's first little baby push-ups. I'm still a little unclear over what prompted this, but Madeleine got upset during her 6pm feed and proceeded to push her little body up off of the floor of her incubator by her arms in protest. Then, not too long after, Reid decided to attempt the same thing! (He wasn't as successful though, because of the IV in his arm). Naturally, I sat there wondering WHAT ON EARTH JUST HAPPENED. I tried to explain it to their nurse, who seemed fairly nonplussed by the whole thing, but obviously it means my children are super preemie geniuses, am I right?

[caption id="attachment_367" align="aligncenter" width="870"] A photo of Madeleine, because, why not.[/caption]

So Long, Ventilator

[caption id="" align="aligncenter" width="870"] Finally giving CPAP a try. Go, Reid, go![/caption]