“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

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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.

 

Silly brain

I’ve had a very eventful time lately.  The mom’s asked me not to talk about it until now because we didn’t really know for sure what was going on, but now that we have a better idea I can tell you all about it.

A few weeks ago, the mom’s started noticing that I was having these little muscle spasms.  It would mostly happen just after I had woken up and was just playing on my mat.  They were always very quick (only about a second or two) and it seemed to happen when I was grabbing my feet, so at first the mom’s thought it was just me losing balance a little bit.  But over time (and especially when my sleeping got all messed up over the Christmas break) it started happening a little more often.  Sometimes it would just be one or two spasms, but other times it would be 7 or 8 in a row and they would get a little bigger.  The mom’s made a big effort to get my sleeping routine back in order and the spasms seemed to go away a little bit but they were definitely still happening.

Finally, last week my lovely pediatrician was able to get us in for a visit to Sick Kids for an EEG.  It was on Thursday morning and I had to wake up at 5am and then stay awake until the test at 8:30am because I had to be tired.   An EEG is a test where a nice technician measured my head, drew all over it with crayons and then put all these little stickers on my scalp that were attached to pretty coloured wires.  The wires were able to send pictures of my brain activity to the technicians computer.  The test lasted about 1 hour and I had to be sleeping, and then slightly awake, then awake enough to look at flashing lights and then asleep again.  Luckily Mama C was holding me the entire time so I was pretty comfortable and only cried at the end when she and the technician were pulling all of the stickers out of my hair.  After that we waited around until we finally got to see the neurologist who was able to explain to the mom’s what’s been going on.

It turns out that I’m having something called Infantile Spasms (or West syndrome), which are a type of epilepsy/seizure disorder.  Kids with Down Syndrome are more likely to have these issues then typical kids, but also kids who have had an Hypoxic-Ischemic brain injury are also more likely to have these as well, so it shouldn’t really be a huge surprise that I’m having issues with them, but it was.  The difference between Infantile Spasms and other seizures though is that my brain activity between the physical seizures is all still all wonky (as opposed to only being wonky when I’m actual having the spasms), which means that it can cause problems with my development. (The mom’s found a really good article to help explain it to them, so if you want to understand it better you can read it too: http://www.aboutkidshealth.ca/En/HealthAZ/ConditionsandDiseases/BrainandNervousSystemDisorders/Pages/Infantile-Spasms.aspx

All of this means that the doctors have to treat it very quickly and very aggresively so that we can stop the spasms and the wonky brain activity before it causes too much damage.  Luckily I have Down Syndrome though, and even though it’s more likely that we will get West syndrome, it’s all less likely that it will affect us as badly as typical kids so it’s actually really good that I have this extra chromosome (now it’s not just my cute chromosome but it’s my protective one too).   They’ve started by putting me on a new drug called Vigabatrin and they’ll check in two weeks to see if it’s working.  If it’s not then I’ll have to start a different drug that’s given to me everyday with a needle, so I’m really hoping the Vigabatrin works.  It comes with a lot of not so nice side effects though, so until my body gets used to it, I may be having a couple of not so great weeks.  It’s supposed to make me very drowsy and tired, but will also keep me awake at night.  It may cause me to gain weight (which actually made the mom’s happy) but may also make it harder for me to poop.  The big thing that made the mom’s unhappy was that it will probably cause me to loose the muscle tone that I’ve worked so hard to build up.  So, things that I’ve been working so hard on, rolling over, sitting up may get a lot harder in the next little while.  It also means that I’ll have to just be g-tube fed for a while too because I’m going to lose the muscle tone that helps me suck and I’ll also be very drowsy, so it would be dangerous for me to try and eat because I’m so good at aspirating when I’m not at my best.

So, it was a big week and we don’t really know what it means for the future.  I’ll have to be on the medicine (whichever ones works) for at least 7 – 8 months and hopefully by that time I will have grown out of these seizures.  But the doctor’s did say that it’s probably pretty likely that I’ll have a different kind later on.  So, like my veins and my sight, we’ll just add this to the list of things that I’ll just have to figure out as we go along.

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.

 

Sticky mess and saying Thanks

This week Mama C had to google, “How to get vaseline out of my child’s hair?”  You would be surprised how many hits came up! You see, I have a little case of cradle cap that keeps rearing it’s ugly head.  A few weeks ago, Mommy tried using olive oil, but didn’t wash it out very well and Mama C didn’t notice until she and I were at Sick Kids for an appointment and she took off my hat.  She was not impressed.

So this week, when we noticed that it was getting a little worse, google told Mama C to try using vaseline for 10 minutes and then washing it out.  Well, we washed it out 3 times that night and then Mommy tried to wash it out ANOTHER 3 times in the morning and I still looked like Danny Zuko from Grease.  But this time, the joke was on Mommy because she had to take me to our music class looking all gross.  In the end, google finally helped and we ended up using olive oil again, letting it soak for 10 minutes and then washing it all out with dish soap! It worked, and after washing with regular shampoo as well, my hair is actually softer then ever!

Luckily that was the most traumatic part of my week.  In fact,  other than the vaseline fiasco, this week has been pretty fun.  On Sunday a bunch of my favourite people all got together and we trekked downtown to watch the Santa Claus parade.  Now, I don’t know a whole lot about this Santa Claus character yet.  Last year I was in the hospital over Christmas, so it was just me and the nurses, but from what Mama C has been telling me this Santa Claus guy is kind of a big deal.  She keeps talking about Christmas like it’s this magical time of year and there are lights and happiness and presents! I can totally get behind this.  However, it seems that I was a little too excited about seeing Santa Claus for the first time and I tuckered myself out and slept through the whole parade instead.  Ooops.  Maybe I’ll do better next year.

Then, on Monday I had to go and get something called my RSV vaccine.  RSV is an infection that most people get and it doesn’t cause any problems because it’s like a cold, but in babies who are born early and kids with heart issues like me, it can lead to lung infections which causes far more serious problems.  So, to make sure I don’t get this I have to get a needle once a month until March.  The good news though is that the doctor who is giving me the needle is actually the same doctor who saved my life in July! On Monday I got to see her for the first time since July and she was soo happy to see me! The mom’s brought her flowers and a card to say thanks, even though they found it was a little hard to find the right words to say thank you.  She thought that I looked fantastic and that my pigtails were adorable.  She said, and I quote, “this is the best ending to a code blue ever!”  I was happy to see her and I know it meant a lot to the mom’s to get to see her too.

I’ll leave you with one more picture for today.  The mom’s are starting to feed me some solid food, which is a little tricky because of my big tongue.  It takes me a while to get into the rhythm and the first time they tried, it made a really really big mess.  But I loved it and now I fully understand what they mean by food coma!

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!