“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.

 

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.

 

Lily – the (Ng) Tubeless Wonder!

I have had a really great week.  I was worried about saying that because it seems that I sometimes manage to jinx myself and say that things are going well and then something happens and then I’m stuck telling you about something crappy.  But so far this week is pretty good – I mean it is only Tuesday, but we take the good things as they come.

I had my heart catheter last week to try and patch up my tiny pulmonary vein.  In the end, the surgeon was not able to put a stent in because it’s made of metal and it would have blocked another vessel (which kind of defeats the point of putting the stent in).  That was not ideal because the stent really was the best option for my last left vein.  In the end, they were able to open a tiny little bit of my vein and it’s helping because my oxygen levels are sitting much higher but it wasn’t really a lot.  Now my left lung is only doing about 2% of the work, and my right lung is doing 98%.  It’s a lot of pressure on that one lung but hopefully this catheter. procedure will help to keep the pressures in my lungs lower than they were before I went to the catheter lab.  Now we just have to hope that it works for way longer than 6 weeks this time.  I get to see my cardiologist in 6 weeks and we’ll have a better idea then on how we move forward from here: how they’re going to monitor my veins and what other treatment options there are if my right lung decides that it doesn’t want to do as much work as we’re asking it to do.  My cardiologist did say that as long as my heart is good, she has kids who are 6 and 7 years old who just have one working lung so that’s what I’m aiming for!

The doctor’s were so impressed with how I was doing that they decided that I could come off of the ECG monitors completely and off of the oxygen monitor while the mom’s were awake (it goes back on when they’re sleeping so the nurses can track me).  I think that’s what made it the best week ever.  On Sunday, I had lots of visitors because it was Grandma’s birthday, so she and Grandpa and Uncle Jeff and Auntie Marina came to have something called birthday cake.  I got to try a little bit of this icing stuff and I really liked it.  But mostly, I liked being able to cuddle with Grandma – she’s so comfy that I went right to sleep.  I would have slept for Uncle Jeff but he kept sticking his tongue out at me and trying to make me laugh.  I decided then that I like Auntie Marina better.

Then on Monday, I got to eat from my bottle and I did really well.  Just as Mama C was attaching my Ng tube to top off my dinner, Auntie CC, Uncle Rico and my Thor came to have their dinner with me!! (And bring Mama C some dinner too).  I had so much fun! Mama C put the mat down on the floor for me and my Thor and we hung out and played for so long.  He cuddled me and called me his “sweet sweet baby”, and he patted my tummy, sang me songs and then tried to teach me how to hold my feet in the air.  I’m not quite strong enough to do it, but if Thor just waits a little bit I bet that I’ll catch up soon.

Then today was G-tube day! Finally, after all of these months of having this stinking Ng tube in my nose, the doctor’s took me to the operating room this morning and put in my Gtube.  I still have a temporary Ng tube in, just in case we run into any problems and they need to feed me or give me medicine, but later tonight (12 hours later), the nurse will give me some clear fluids and I’ll start using my new tube! The mom’s are really happy that they’re going to be able to see my gorgeous face all of the time now but they were a little sad when they had to go to the Specialty Food Shop and buy my new G-tube pump, feeding bags, extenders, clamps, clips and doo dads.  I don’t know what any of this stuff means, but if it means that I get to eat without throwing up, then I’m all for it.  Plus it did come with a cool backpack that made Mama C happy – she says that it’s the perfect size to throw on my stroller.

So, I’m in some pain tonight, because the G-tube does hurt a little bit at first.  They gave me some morphine earlier but now I seem to be doing okay just on Tylenol.  Mama C asked the nurse to give me a little more morphine around midnight so that I sleep really well and the pain doesn’t wake me up, but hopefully tomorrow it will be even less and I can go back to being the happy, smiley girl that I usually am.  Then the doctor’s say that if everything heals well from my G-tube, I could possibly be home before the weekend! I’m not counting on it, but a girl can dream….

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.

Another Week End, Another Surgical Adventure Begins…

The general consensus seems to be that I look really really good for someone who has so many things wrong with me.  I’ve been eating like a champ this week and more importantly, eating like a champ from a bottle.  My OT Lisa, says that it’s safe for me to try 3 meals a day from a bottle and at each of them I’m getting more and more confident about how I eat and I’m taking around 60mL each time.  Impressive, if I do say so myself, for a girl who couldn’t even suck a few weeks ago.

The rest of my OT exercise is coming along really well too! Lisa is very impressed with how strong my neck muscles are getting again and how strong my right arm is now, especially since it was just last week that it was laying limp beside me.  It seems that at some point this week, I not only remembered that it was there, I decided to start using it all of the time! I’m sucking my thumb again and grasping things (like the mom’s hands) and I’m even holding on to a set of jingle bells and moving them all around so they make beautiful music.  We won’t talk about how I often hit myself in the face with the jingle bells because, well, that’s just embarrassing.  My legs still need some work – I move them a lot when I’m angry or frustrated, but they don’t move around a lot more than that.  I also need to work more on my tummy time, because I really really hate it, but it seems that no one is doing anything to really make me cry these days.

On Monday, I had another Echo done so that the doctors could look at my heart and see how the blood clot was doing.  About an hour after I got back to my room, my cardiologist came upstairs to “see me with her own eyes” (her wording, not mine).  It seems that after all of that worrying we had done since Friday, the Echo showed that my blood clot was gone.  They didn’t know for sure where it seemed to be – either it had been broken down by the Heparin that they started or it had dislodged and passed into my lungs but in small enough pieces that it didn’t cause any problems.  My cardiologist was shocked and said that while this was the absolute best case scenario, she wasn’t expecting it at all because the clot was quite big in the pictures and they were pretty certain that it was going to cause way more problems.  She told the mom’s that they were still going to do the MRI that they had scheduled for Tuesday, just so they could see if it was in my lungs and to look at my brain to make sure there wasn’t any bleeding (because of my brain injury, Heparin can make bleeding in my brain more likely).

I had the MRI on Tuesday and that was a long day.  After it was all done, I really didn’t want to sleep and so I stayed up really late and even pulled out my Ng tube (I told you my hands were getting better!) just so that I could stay up late with Mama C.  The mom’s didn’t hear anything about the MRI results though until Wednesday morning.  That’s when my cardiologist came upstairs very quickly to let the mom’s know that they had decided to move me back down to the cardiac floor (my home!).  During the MRI, they were able to see my pulmonary veins (the one’s I talk about here…. http://gigglesandhugs.wordpress.com/2011/06/18/you-take-the-good-you-take-the-bad/).  It turns out that my surgeon tried to open up the veins a bit during my AVSD repair and they were hoping that this would buy me 6 months of time before it became an issue again.  In the end, that work only bought them 6 weeks of time.  On my left side, the lower pulmonary vein is completely dead and the upper one only has a tiny bit of blood flowing through it (about 10% of all the blood – my right side is filtering through the other 90%!  This isn’t fair to ask my right lung, especially without a lot of notice, so the hope is that they can fix my veins for a long enough time to allow my right lung to learn how to deal with all of that blood working it’s way through.

So, tomorrow morning at 9am, they’re going to come and take me to the catheter lab, where they will insert a catheter which will snake it’s way down to my vein and use a balloon and a stent to open it back up.  They don’t know how long this will last and they can’t even say what they would do for a “typical” child – because apparently this is incredibly incredibly rare (2 in every 10 thousand!) and so they take each case at with their own set of challenges.  The plan is to avoid a heart-lung transplant, which could be an option but only in a worst-case scenario.  Apparently the survival rate for infants/babies and transplants is pretty low, so we want to make sure, that if we get to the point where the doctor’s think a heart-lung transplant is my only option, I’m as big and strong and healthy as I can possibly be!