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]

A Cuddle With Dad

Reid decided to cooperate and remain stable yesterday, which meant that he was able come out for another cuddle, and that I was able to keep my word on Matt's big afternoon surprise.  Unlike his sister, who is a bonafide cuddle hog, Reid hasn't been able to get many snuggles yet because of his reliance on the big jet ventilator.  I was lucky enough to nab the first two for myself, but today was the day he'd finally get to cuddle in with his dad.  An almost-two-hour lovefest ensued.

In other exciting news, I received a call from the hospital this morning to let me know that they have decided to extubate Reid and give him a try off of the ventilator!  This is great news for him, as it will mark a big step forward in his process if he decides he's up for the challenge.  Hoping all goes well - watch this space for updates!

Babies' First Shots

Today, Madeleine and Reid received their first shots for RSV.  While this may not have been such great news for the babies and their scrawny little thighs, it was good news for me and my newly-developed paranoia of germs and their ability to potentially kill my precious children.  Unfortunately, poor Reid had his shot while I was tied up kangaroo-ing with his sister (guilt trip commence!), and poor Madeleine had her shot after she had been lulled into a false sense of security in her mother's embrace (guilt! guilt!).  It's always fun when you manage to ruin both your tiny babies' lives at approximately the same time.  In any case, Reid and Madeleine will both continue to get their RSV shots every few weeks from now on, giving them a little immunity boost against a potentially very nasty virus should they happen to contract it.

Madeleine had a new ultrasound completed on her head today, and she will now start having them every Thursday.  It has only been a few days since her last test, so I wasn't exactly expecting anything earth-shatteringly new, but thankfully we are still seeing a decrease in all of her measurements (slight decreases, but decreases nonetheless).  Her scans have now been sent to Sick Kids so that she is on their radar, but it sounds like everyone is still hopeful that she will continue to move in the right direction and not need any intervention.

Reid's lungs are still an issue, and his latest x-ray suggests that he could maybe potentially have pneumonia.  The good news is that each new test looks better than the one before (making me wonder if maybe he just needs a little extra time to sort this out on his own), but since he is still on the jet ventilator, and since his lungs do technically still look kind of bad on the x-ray, he may be put on antibiotics for treatment.  We are crossing our fingers that Reid's lungs are able to pull it together soon, as it is definitely time for him to break up with the ventilator and give breathing a proper go.

Matt has the day off tomorrow, meaning we will finally be able to go to visit the babies together again (it feels like it's been so long).  And if all goes well, Matt should be on the receiving end of a little surprise around 4pm tomorrow (it may or may not involve a sling, a cuddle, and a little man named Reid!).

More About Madeleine

Although I was over the moon to hear from Matt that the results from Madeleine's head ultrasound were good, I was eager to speak to her doctor myself to get the whole story first-hand.  And it looks like the whole story is basically that everything we were hoping for is pretty much happening.

Based on the head circumference measurements that had been taken by Madeleine's nurses prior to her test, we were kind of expecting to hear at best that the ventricles were staying more or less the same size.  According to the ultrasound though, not only have they actually decreased, but they have decreased fairly significantly!  As a result, it is looking like Madeleine's brain may indeed be in the process of breaking down the clot on its own - the best case scenario option by far.  According to Madeleine's doctor, this means that the ventricles will most likely continue to decrease with each weekly ultrasound, and that chances are good that she won't be requiring a shunt after all!  While I suppose that technically we won't know exactly how her brain is doing until much later on when any developmental delays would start to become apparent, it is a massive relief to know that my little girl has likely avoided surgery.  (Romains 1, Blood Clot 0).

In other exciting Madeleine news, our tiny warrior has finally surpassed the kilo mark!  To celebrate, she took the opportunity to show off her impressive breathing skills to her very proud mother.  Throughout the day, Madeleine's nurses take off her CPAP gear for a few minutes to clean her up and give her head and face and break.  I hadn't actually seen this happen before, and it was a huge shock to see her whole, unobstructed face!  There she was, eyes wide open, no breathing tubes or masks, using her lungs to breathe on her own.  It was pretty amazing!  In fact, it was the first time she really started to look like a "normal" baby, without all the wires and tubes and medical paraphernalia.  While I stood there in awe at my little girl, taking breaths on her own like it's no big deal, Madeleine's nurse wisely suggested I grab my camera and take a picture.

[caption id="" align="aligncenter" width="870"] CPAP free. No big deal.[/caption]

As if that weren't enough to make my entire day, Madeleine and I got to have another cuddle!  It makes me a little sad that Madeleine has been able to have so many snuggles while her brother has only had two, but at the same time, I am so grateful to have the chance to spend so much time holding my girl and getting to know her.  When it became clear during bed rest that the babies would likely be born very early, part of me worried about whether we'd be able to bond the same way that most mums and babes do.  Their birth was quick and scary, it was a few hours before I could see them for the first time, and much longer before I could touch them.  Once I was discharged, it broke my heart to think of all the hours we'd be spending apart, all the times they would cry that I wouldn't be there to comfort them, or even know that it was happening.

It still makes me sad to think about, but cuddling with Madeleine gives me hope that maybe I don't have to worry too much.  Even though I wish I could do more for the babies, even though I wish they were at home like normal newborns, there is always that moment when the nurse places Madeleine on my chest and she snuggles right in, as if to say, "oh good, there you are." I thought it might take time for us to feel comfortable together, that it might feel awkward at first the way I always feel kind of awkward holding other people's babies, but sitting with Madeleine and Reid, feeling them settle and watching the numbers on their monitors stabilize, feels so different.  What I thought would be getting acquainted is really a reunion.  My babies and I, together again.

A Boy And His Sling

The thing about having babies at twenty-five weeks gestation is that you aren't at all ready.  Not ready to give birth, not ready to have your little humans living on the outside, and not ready for the strange reality of being someone's mama without really getting to do mama-like things.  I hadn't given too much thought to what life might be like with a little one prior to getting pregnant, didn't know too much about newborn care (and still don't really, if I'm being honest), but I did like to imagine myself one day wrapping a juicy, full-term chubster into a sling and hanging out together, exploring his little world.

I may not be able to do much exploring (and I certainly don't have a juicy, full-term chubster), but today, I did get to wrap Reid into a sling!  It was finally time to get another kangaroo cuddle with Reid today (our second since his birth), and this time we did it by wrapping him in a little blue baby hammock contraption, which then got tied onto me.  It meant we could still have the usual awesome skin-to-skin cuddle, but that he was super snug and supported, and that I also had more freedom to adjust my position without messing with all the wires and tubes.

To say Reid and I enjoyed his sling time is a huge understatement - we spent the first little while making googly eyes at each other, and then he settled in for a nice two-hour snooze.  He loved being wrapped up and cozy, and I of course loved to be able to get to snuggle in with my boy.  There aren't many moment yet in our lives where we get to feel like real, proper parents, but cuddle time like this is about as close as it gets.

[caption id="attachment_146" align="aligncenter" width="870"] Enjoying a cuddle with my tiny human burrito.[/caption]

Monday Updates

Today was, of course, the big day of double-whammy tests for Madeleine and Reid, which meant that Matt and I have naturally been complete and total nervous wrecks.  It was also the first day I've attempted to drive myself for a solo hospital visit (it has been a few months now since I've been able to do that, thanks to bed rest), which meant that I had no one else in the car to keep me from crying for the majority of the drive (can't help it).  Little did I know though that, today, I didn't have to.

The two issues we have been watching for Reid have been his lungs (he has yet to come off the ventilator, and his x-rays have not been looking too great), along with his heart - specifically his PDA (or patent ductus arteriosus in medical talky-speak).  The simplified explanation is that his lungs are underdeveloped and are keeping him from breathing properly, and there is also a duct in his heart that should have closed when he was born that never did.  Reid was given medication to try and close the duct, but since it was fairly large, it's been looking like he would be needing surgery to close it.

Today he saw the cardiologist, who did a test on his heart to determine what's happening.  Lucky for all of us, the test showed that the PDA was closing!  It is still open somewhat (my understanding is that it is closing off at each end, with an opening still in the middle), but the takeaway from the results is that not only is this an improvement, but it's enough of an improvement that they have decided he does not have to be added to the waiting list for the ligation surgery!  (Hooray!!)

The other exciting development for Reid is that his crummy-looking lungs are actually not so crummy-looking anymore!  His latest chest x-ray showed that his left lung is actually looking pretty good (more inflated), and the right lung is maybe still not looking super fabulous, but at least it looks better than it did on the last scan.  The lung damage that Reid has developed will still always be there, but the good news is that as he grows bigger and stronger, he will develop new, healthy lung tissue that will hopefully end up compensating for the damage of being a tiny micropreemie on a ventilator.  (Hooray again!)

As for Madeleine's head (the big issue we were especially worried about), the news is also good!!!  I actually didn't get the story directly, since I was on the way home from the hospital when the call came in, but from what I understand, Madeleine's ventricle measurements have indeed decreased in size as we hoped they would.  I won't know for sure what this means exactly until tomorrow when I grill her doctor for all the little details, but it is a huge relief to know at least that they haven't continued to grow!  Hopefully this will mean she will be able to avoid needing a shunt, or having any significant damage caused by the pressure in her brain.

I know that our little family has been on the receiving end of many, many prayers and well-wishes lately, especially for Madeleine.  While we will never stop worrying, and of course, are no where near to being out of the woods, today at least was a real victory for us - the first break in a string of difficult days.  We are so incredibly appreciative of the love being sent in the direction of these amazing babies, and hope that you will be celebrating these promising updates right along with us.  We definitely hope that they will continue.

Good Days

I'm not entirely sure yet if you ever truly get to have 'good days' while your babies are in the NICU - all news seems to sound like bad news, and even if things are going well at the moment you still have to worry about something going wrong in an hour, or a day or a week - but for now, I will say that today was a pretty good day.

The big news is that Madeleine was taken off of her ventilator, and given another shot at CPAP.  We were pretty surprised to walk in and see her with the signature CPAP headgear, as we were under the impression it might still be a while before they tried switching her over.  The best part of it all is that Madeleine seemed to be much happier with that annoying tube out of her windpipe.  She opened her eyes nice and big when we got there (I like to imagine she was saying "hey ma, look at me breathing on my own!"), and didn't cry or even make much of a fuss at all while we were there (part of me was secretly hoping she would cry a little though - they don't get to make any noise while on the vent, so now we'd actually get to hear her little preemie cry again!).

[caption id="attachment_53" align="aligncenter" width="870"] Madeleine modelling her CPAP helmet.[/caption]

Reid, unfortunately, is still on the ventilator, which makes me a very worried mum, as his risk for lung damage increases the longer he is on the machine.  There was still good news for him today too though, which was that he seems much more stable on the ventilator now than he has been previously, and is requiring less frequent suctioning.  He is also now up to 13ml feedings, which is always exciting news, as we want to beef that little baby up as much as possible!  His super wonderful amazing nurse Joan actually described his day as being "awesome", which is basically the best way to describe a baby's day to his mother if you happen to be wondering.

[caption id="attachment_57" align="aligncenter" width="870"] Reid being awesome.[/caption]

Tomorrow will be a fairly important day for both babies (and quite a scary day for us), as we will be awaiting the results of both Madeleine's head ultrasound, as well as Reid's most recent echocardiogram.  Hopefully tomorrow we will have more happy updates to report.

Madeleine's Brain

Despite being born super early, Madeleine has done a pretty awesome job of being alive.  Our little warrior girl came off of her ventilator at a few days old, has been eating like a champ since day one, and has generally just been spending her days being the tiny rock star that she is.  We have now learned though, that Madeleine is having some trouble with her brain.

A bleed that occurred in Madeleine's brain early on resulted in a clot that is now basically clogging up the flow of cerebrospinal fluid in the ventricles of her brain and spine.  Her ventricles are increasing in size as a result, and although her little baby head is capable of expanding somewhat to accommodate, she may require surgery if the ventricles continue to dilate.  Since she is such a tiny little one (not yet even a kilo), this is super bad news.

On Monday, Madeleine will be having a follow-up head ultrasound to see what is happening, and whether her ventricles are getting larger. Of course, we are hoping that our sweet girl will be able to avoid surgery (or any other invasive procedures).  We are trying to be as optimistic as possible, but this is her first major issue, and it feels pretty devastating.  We would appreciate your thoughts and prayers for our beautiful girl.

Three Weeks Old

My favourite tiny humans are three weeks old today!  It has definitely gone by quickly, between their fast and furious birth, adjusting to being back home after bed rest, adjusting further to the babies' new life in the NICU, complications from my Cesarean with Reid, and now Matt being back at work every day.  Of course, the more time that passes, the closer we will be to the babies actually coming home, so that makes the whirlwind a little easier.

Madeleine at three weeks...

- Weighing in at 915 grams
- Receiving 12ml at each feed, and tolerating well for the most part
- Still on the ventilator for now (after a stint on CPAP)
- A kangaroo care champ - getting lots of cuddles, and loving them
- Otherwise totally grumpy, very particular, and absolutely hilarious

Reid at three weeks...

- Weighing in at 1048 grams
- Receiving 12ml at each feed, and tolerating well for the most part
- On the jet ventilator, still needing a fair bit of breathing assistance
- PDA has closed slightly, but still an issue
- Otherwise pretty chill, and completely and totally adorable