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.

Being a Preemie Mom

I don't leave the house much these days.  It takes so much coordination just to get out the door, and then, if I finally make it to my destination, I actually have to...be there.  Do things.  Feed the babies and change their diapers and pray that they don't cry, and oh, it's just so much harder when I'm not at home with all the STUFF.  Home has such a nice, familiar routine to it, and taking two babies out just feels like asking for trouble.

Thankfully though (and like most things with parenting, I think), when we do leave, it's usually never as bad as I think it's going to be.  I am getting fairly skilled at getting the twins in and out of the stroller, I've made it through one massive, in-public poo blowout, and I've managed to feed both screaming babies in a random school parking lot without having an anxiety attack.  WIN.

Finally beginning to do these things - going out in public like a regular mom - was a big deal, and something I'm pretty proud of.  But it's about so much more than just having it together enough to leave the house.  Even though we knew when the twins were born that the goal was to leave the hospital eventually and live a normal life, the fact that we did that, that we are doing that, still feels jarring to me.  I know how to exist with my babies at home, but taking them out into the world feels so foreign.  We are doing something totally normal and completely abnormal at the same time.  Nobody looks at us and sees it, nobody senses how much of an accomplishment it is to do this normal stuff.  Nobody realizes that being out in the world like this is something that was never guaranteed to us when our babies were born fifteen weeks too soon.

Out in the world, at the doctor's office or the deli counter, I feel really, really proud of these little babies.  These little babies, who lived in a hospital for the first three-and-a-half months of their lives.  These little babies who never looked like everyone else's babies, who never seemed like they belonged out in the world where the 'normal' babies lived.  My babies are PREEMIES.  They hang out in the NICU with the nurses, not at the grocery store to be cooed at by the checkout girl.  My daughter has a shunt!  She sees a neurosurgeon!  SHE HAD A GRADE III INTRAVENTRICULAR HEMORRHAGE!  She's not a normal baby.    

People are fascinated by twins, and they love to stop and ask questions when they see a second baby hiding away at the bottom of the stroller.  "Yes, yes, twins," I want to say, "but look at my babies!  Aren't they beautiful?!  They could have died but they didn't and now here we are in the grocery store!  Isn't it amazing?!"

When we were still in the hospital, I remember thinking that I didn't want to become a 'preemie mom'.  I was a mom of preemies, sure, but I didn't want that to be who I was.  I didn't want my experience as a mother to be limited by the abnormal circumstances of my children's entrance into the world.  And while I do still feel like I can find common ground with moms of full-term, typical babies, there is still a very large part of me that feels so very different.  A large part that can't let go of what happened.  A large part that doesn't want to just yet.

I know one day this will matter less.  Madeleine and Reid will grow up and our lives will progress and change, and their prematurity won't be such a defining aspect of who they are.  One day, hopefully, it won't be such a definitely aspect of who I am either.  But, for now at least, it really, really is.

[gallery type="square" columns="1" link="none" ids="1089,1088"]

Having dinner at an actual restaurant.  No big deal.

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.

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.

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.