“Today”

A mom post today….

We were driving to the zoo on Sunday morning and Jess turned to me

“Do you know what today is?  It’s today.”

Such simple words but ones with so much meaning between the two of us – it’s almost like a secret language.  “Today” was the day that we almost lost Lily; the day that our lives stopped in an instant and we got caught up in a vortex where the rest of the world ceased to exist.

We’ve talked about it, ad naseaum, I’m sure.  It’s hard not to when a day just sends your life in the total opposite direction of where it was headed.  But the truth is, the direction spinning really started the day of Lily’s surgery.  It was being pulled into a room by her surgeon and being told about her PVS: laying out the two possible outcomes (that the surgery would solve everything and she would show no other symptoms – which he didn’t think was realistic, or the disease would eventually be fatal).  We stood, against the barrier looking out into the Sick Kids atrium, in shock and crying.  It seemed so unfair – she had only been ours for a week and now we were in danger of losing her.  At that time we didn’t know that the disease was progressive and doesn’t work on any sort of timeline, we didn’t know that a heart-lung transplant was an option, we didn’t know that we have one of the most amazing cardiologist teams in the world, we were just heartbroken.  The next few weeks were filled with so many unknowns – words like chylothorax, pleural effusion and pulmonary embolism became part of our regular vocabulary, and we learned about seizure medications, g-tubes and Cortical Visual Impairments.  Those 66 days changed our lives in ways that we probably don’t even know.

And even now, looking back, there’s no way to describe that time and get it right: the fear, the hopelessness and the anger at the situation that are mixed in with the love, pride and amazement at such an incredible little girl.   Sometimes words can’t do it, but sometimes photos can.

We (I) took tonnes of photos during those 66 days, because I wanted Lily, when she was older, to see the physical evidence of how strong and incredible she is.  But these photos have become my own personal therapy – when I get overwhelmed at the possibilities in front of us, I look at these photos and I can see for myself how bad it was and how far she’s come.

But we’re here, 2 years later.  We’ve learned more words and more therapies and our life is nothing like what we had expected when we first brought home that little girl named Natalia.   It’s might be a crazy life – but it’s our life (ten points to the geeks who can identify that quote).

This week, we’re also asking you to send some health, good transplant thoughts to our friend Alexa.  Alexa is a pretty amazing girl, who has something called a UCD (Urea Cycle Disorder) and she is having a liver transplant to help her get super healthy and strong.  We know that life is going to be a bit tough for her for a while, but we want her to know that we’re thinking about her and rooting her on – she’s totally one of Lily’s heroes!

Pre-Surgery Echo & Lily's first overnight visit

Pre-Surgery Echo & Lily’s first overnight visit

Initials in place - waiting for surgery.

Initials in place – waiting for surgery.

They had to keep her fully sedated to keep all of those tubes in place.

They had to keep her fully sedated to keep all of those tubes in place.

In the CICU - the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

In the CICU – the surgeon had to leave her sternum open for 3 days to allow the swelling to go down.

Our home away from home...a comfy chair & footstool in the CICU/CCU parent lounge

Our home away from home…a comfy chair & footstool in the CICU/CCU parent lounge

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Chest tubes finally removed and we were allowed to walk around the 4th Floor

Taking in the view on our first escape from the room

Taking in the view on our first escape from the room

Post cardiac arrest - the nurses always made sure she was snuggled up tight

Post cardiac arrest – the nurses always made sure she was snuggled up tight

Constantly monitoring her O2 saturations

Constantly monitoring her O2 saturations

First smile post cardiac arrest

First smile post cardiac arrest

Pensive at 2 years

Pensive at 2 years

Monster Lily

Monster Lily

We've come a long way Bugaloo

We’ve come a long way Bugaloo

Advertisements

A Great December

Guys, it’s a good thing that it’s almost the new year, because I totally need to make a resolution that I’m going to update you all a lot more often.  Lately I’ve just been so busy that by the time I can sit down and write a post so many things have happened and I’m scared I’m going to forget something.

jessandlily

First – it was my birthday and now I’m 2! That meant it was totally time to party.  The mom’s planned a fun afternoon for me and my friends – there was a slide and a ball pit, cars to drive, lots of food and then cake! Can I tell you that I’m seriously digging cake.  My Theresa made the most delicious cake ever (because that’s what she does) and it was so good that I actually tried to eat the plate!

lilycake

I got to see so many cool people – my birthday twin and my BFF (Daniele & Shanelle) came, even though they’re so much older and they brought their friends Sarah and Cameron, who were so much fun, and they even let Rachel and Tammy come along too.  I got to spend a lot of time with my friend Caleigh too, who is the same age as me but knows how to run and walk.  Even still, she slows down so that we can play together – she’s awesome! Mostly, it was just the best birthday ever! I can’t wait until next year.

caleighandlily

It was more than just my birthday party that was super cool, it was also my birthday present from the mom’s…they bought me a puppy! It’s a boy puppy and he’s black and fluffy and the mom’s say he’s going to be really big (which is better for me because then he’s kind of like a pony!).  There was some debate about his name because Mama C was telling Mommy not to be ridiculous, but I think that in the end Mommy won because we’re all calling him Sprinkles now.  Mama C looks a little embarrassed when she has to call him when we’re out for walks but Mommy just laughs and laughs so I think it’s okay.  Sprinkles and I haven’t spent too much time together yet, because he’s a little bouncy and bite-y still (the mom’s say that’s because he’s teething like I am), but sometimes he just sits nicely and lets me pet him (and by pet him I actually mean pull on his fur or try and stick my fingers up his nose).  The cat doesn’t really like him, but she’s outnumbered so too bad for her!

sprinkles

I had my latest check-up with my cardiologist at Sick Kids last week.  I had to be sedated so that they could do an ECHO and look and see how my heart is doing.  The mom’s were super happy because even while I was on the medication that makes me sleepy, my oxygen sats stayed as high as 96%, which is pretty incredible.  And it turns out that it’s because I am incredible! Dr. Dipchand says that my hearts looks amazing! She confirmed that there is no blood flow at all coming from my left lung, but I’m handling it really well and there are no signs that my pulmonary pressures are high.  All of this means that I don’t have to go back and see Dr. Dipchand for ONE WHOLE YEAR! She and the mom’s talked some more about some down the road, long term stuff, but for now, unless I start showing signs that something is going funny, then she said there is no point in coming in to take another picture to show us the same thing.   It may have been the best birthday/christmas gift ever!!

crystalandlily

Speaking of Christmas – I just wanted to tell you all that I hope you have a very very very merry time with all of your family or friends or friends who are family.  I know that I’m very very lucky to have incredible people in my life who make the holiday’s so happy and amazing and I just hope that you do too! Plus, I met this Santa guy and he seems to know what’s going on….so maybe talk to him too and he’ll sort you out…

lilyandsanta

Can You See the Difference?

Guys, do you remember what you were doing one year ago today? Because I do…well, kind of.  At this time, one whole year ago, I was actually pretty out of it because I had just come out of my second open heart surgery.  You see, when I was born there were some big time problems with my heart – I had something called an AVSD and coarctation of the aorta.  When I was just 7 days old, and still with my birth parents, the doctors at Sick Kids did my first open heart surgery to make my heart a little better so that I could get strong enough and big enough to have the second surgery and on June 16th last year, they decided that I was finally ready.  Now, I don’t remember a lot of the details (mostly because I was on a lot of drugs) but the mom’s say that today was the first day of a very scary 3 months for them.  My heart surgeon was actually really happy with how well he was able to fix my heart, but as most you know, it was during this surgery that he officially diagnosed me with Pulmonary Vein Stenosis.  He was such a great surgeon though, that he tried to fix that (as best he could) at the same time, so that I wouldn’t have to have ANOTHER surgery, but because he spent so much time playing with my heart, it was too swollen for them to close my chest and I spent 3 more days with my sternum open to let the swelling go down.  Those three days were pretty scary for the mom’s.  I hadn’t even been home with them for 3 weeks and suddenly the heart problem that they had expected from me turned out to be way worse and now they were hanging out in a CCCU room actually being able to look down and see my heart beat.  It was pretty surreal.

 

And now here we are, one whole year later, and not only is my chest closed up all nicely and my heart is amazing and healthy and my right lung is strong and working hard, but I’m also sitting and seeing and have a tooth.  And I’m playing in the sand for the first time ever, and hanging out with the mom’s and their friends at the park and trying ice cream and slushies (thanks Rachel!).  I don’t know if you guys know, but us babies do a lot of growing up in one year…..

 

 

 

 

 

 

By The Numbers

98582827495: the number of people in line at the Starbucks at Sick Kids today.

189: the number of days before I need to see my cardiologist again.

99: the highest my oxygen saturation levels were at today (does anyone else remember when we were happy when it was 77?)

30: the number of seconds it takes for the technician to actually do an ECG.

10: the number of minutes it takes the technician to set up the ECG.

 

5: the number of minutes I had to sit in the chest x-ray tube for them to see that my heart and lungs look amazing.

2: the number of naps I got woken up from today so that people could poke and prod at me.

1: the number of lungs I have that are strong enough to do the work of 2 regular working lungs.

 

Just saying, it’s been a pretty amazing day.

 

Come closer, I have a secret….

I wasn’t always this big you know? I started out pretty tiny – 1.78kg to be exact (that’s 3.9 pounds).  But over the last year, I have grown bigger and stronger with every day and every week and every month.  And now, today is my first birthday and even though there were some sad times and scary times, I think that my life is pretty amazing and I’m happy to be sharing my first birthday with all of you.

 

Quick Fast

There are so many big and wonderful things that have happened in the past few days but I only have a quick fast minute to tell you all about them!

First of all, at least according to Health Canada, my name really and finally is Lily T-E! It will take another 6-ish months before my adoption becomes finalized before the judge but this is obviously a very big step. At least it means that all of my doctors and nurses will call me by the right name!

Secondly, we went to my first cardiology appointment since I was allowed to leave the hospital and everyone was super happy with how well I seem to be doing! I’ve gained more weight (14 pounds!) and gotten even taller. My oxygen levels are holding steady at 99-100% which is extra impressive with only 1 functioning lung!  It means that my right lung is kicking butt and taking names (and doing the work of 2 lungs really really well!)   They don’t want to see me again for another 2 months but at that appointment they will do an ECHO and an ECG and take a look at my veins more closely and decide what to do then. If they’re narrow again, then I’ll be booked for another heart catheter, but if              they’re the same then they’ll keep doing scans every 3 months (any shorter than that and the results all start to look the same). I even got treated like a bit of a celebrity because 1 of the doctors who was looking at me had just done a big presentation to some other doctors about PVS and he used my pictures! He was happy to meet me in person and even happier to see how great I looked (I think I surprised him a little bit!).

We also talked about the winter and it being something that the mom’s called “cold and flu” season and the doctor’s gave them some good tips called “common sense” to use for the next few months to make sure that I stay healthy and that my 1 lung doesn’t have to work any extra: make sure everyone who touches me washes their hands, the mom’s have to get a flu shot, don’t let any kids kiss or touch my face because they just might not have symptoms of being sick yet and just be smart about where I’m going and who I’m hanging around. It’s a lot of stuff, but at least it doesn’t mean any extra medicine!

A Day in the Life

Today marks my 60th day in the hospital.  I’ve come to realize that this is a really long time because even my favourite nurse, Shelly (who comes to visit and play with me whenever she’s working, even when she’s not my nurse) has told me that I really need to go home and not come back for a long time.  She says that I can visit whenever I want when I come to clinic, but that I should really get a life outside of the atrium walls.

But the thing is, my life here, minus all the poking and prodding, isn’t really so bad.  I know, in all my rambling, that it can seem like we’re not having a lot of fun and sometimes that true, but most days I’m actually feeling really well and we try and keep me as entertained as possible.

Most mornings I like to wake up around 6:30am.  I like this the best because it’s just before the nurse changeover happens, so unless something is wrong, a nurse won’t come in and bug me until at least 8am and probably closer to 8:30am.  This means that I get some serious snuggle time with the mom who has spent the night with me.  We like to sit in the rocking chair, hook up my Ng tube for some breakfast and watch tv together.  Since it takes me an hour and a half to eat, it’s a really nice way to spend the first part of my morning.  If it’s Mama C who’s stayed with me, right after breakfast means that it’s time to clean up before the day nurse comes to check my vitals.  We either have a quick bath or just a wash down before the dreaded hair time begins.  My hair has gotten very very long and since I’ve decided to take up permanent residence here, the mom’s haven’t been able to get it cut.  It also gets tangled very easily if we leave it down, so while I scream and scream, Mama C works out the tangles and then puts it my pigtails.  They’re very cute (I’ve seen the pictures) but I’ll be happy when the bottom layer is a little longer so that we can do something else.  Then the day nurse comes in, fawns over me for a bit (if I’m feeling happy, I’ll totally throw them some smiles so that they think I’m extra cute) and then I get weighed and all checked out.  By that time, I’m totally exhausted and I usually settle down for a bit of a catnap.  Mama C says that I sleep much MUCH better at home, but because I spend so much time in my bed here, short ones are okay.

When I wake up, the doctors are usually coming around to tell the mom’s and dad’s how their kids are doing.  This is Mama C’s favourite part of the day.  She says that sometimes the doctors use bigger words with each other then when they’re explaining stuff to the mom’s one on one, so she listens carefully to understand what’s really going on (and not the dumbed down version).   This is the part of the day that goes by the fastest, because the doctor’s all come back again after rounds to actually check on how I’m doing and make plans for what they’re going to do with me next.   At some point in all of this madness, the mom’s get out my seat and we work on drinking from the bottle so that my tummy can be nice and empty before my OT Lisa comes in the afternoon.  Spending time with Lisa is my absolute favourite time of the day.  She gets out the big mat and spreads my toys all around and we just get to play! She brings toys that light up and toys that make noise and she puts on music and we sing and bounce.  I’m so tired when we’re done that sometimes I fall asleep right in the middle of the exercises and Lisa and the mom’s laugh at me.  I think when we leave here, I’m going to miss her the most.

The rest of the day is a little quieter.  The mom’s and I spend some time cuddling and playing.  Today Mommy had me playing with her on the mat and we both ended up falling asleep right on the floor! Mama C was already having a nap on the bed, so we had a nice family sleep all together.  When the one mom goes home for the night, then we start to settle down.  We eat dinner and play quietly until I start to drift off.  Sadly, the night nurse always seems to come in to her check on me just as I’m about to fall asleep or just as I drifted off, so normally I wake back up again for a little bit.  Mostly the mom’s leave me alone at that point, because if they hang out at my bedside, I think that it’s time to play again and I start smiling at them and they can’t help but get sucked back in.