“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

New Year and New Adventures

I hope you haven’t missed me too much.  I’ve been very busy blossoming into a new little girl over the past few weeks and it’s taken up most of my time and energy.

blackwhite

Guys, did you know that you could reach for things? That you don’t just have to wait for one of the mom’s to get off the couch and bring the toy back to you, you can actually just move and get things yourself? I can’t believe I didn’t figure this out before, but I know now and there’s now stopping me! I reach for everything – things I shouldn’t even be allowed to have but the mom’s get so excited that they let me have whatever I want….even the cat!

lovingmorse

I’ve also been working hard with my OT Kristen.  I’ve decided that 2013 is going to be the year when I grow in leaps and bounds and abilities! Kristen came in to our first session of the year, took one look at me and started to laugh.  She told Mama C that she had been worried before Christmas that I had started to plateau again and she was going to have to start working out some new techniques to get me moving forward again.  But then she came in and saw all of my reaching and babbling and knew that we were going to be okay! So we’re back to working on great things like turning pages and stacking blocks and eating! The mom’s keep letting me try really great things – so far I like Sugar Donuts the best, but sweet potato and tomato sauce are pretty good too.

kristin

sugardonut

I’m also working hard to make my eyesight better.  My brain injury caused something called a Cortical Visual Impairment (you can read more about it here, because it’s a a long thing to explain).  If you read the description, you’ll see that a lot of the symptoms are things that you may see me doing.  One of my big symptoms is strabismus, which causes my right eye to turn in towards my left eye.  Clearly this is not good in the long run, so for the next 6 months, for 2 hours a day, I have to wear a patch over my left eye to remind my brain to pay attention to my right eye.  It was a bit confusing at first because my brain injury also caused the left side of my body to be a bit weak so we kept thinking that it was my left eye that needed work, but we just have to keep remembering that the injury switches above my neck.  Bodies are crazy crazy things.

patchy

Clearly this was the mom’s first attempt – wrong eye AND wrong direction. They need help!

Lastly, I just need to clear up a little rumour: I am NOT on the cover of Today’s Parent (although I don’t know why I’m not, I think that someone should really inform them that I would make an amazing cover model).   Today’s Parent knows that parents love to see their children everywhere and so they allow anyone with a subscription to upload a photo and it will be used as the “cover” for the December issue.  The mom’s ordered an extra copy for Gramma and Pa and somewhere they got confused and thought that it was real.  I wasn’t trying to trick all of you – but it was pretty funny!

magazine

Push Hard

A mom post tonight…

I love my job. I really and truly do. Like becoming a mother, it was the one thing I always knew that I wanted to do. I would spend my childhood summers planted at the pool and when asked I would tell everyone that I wanted to be a lifeguard. To take that childhood passion and actually be able to parlay it into a career has been one of my most joyous accomplishments. I get a satisfaction and fulfillment from work that I don’t get anywhere else

Only recently have I discovered a downfall to this job. Since Lily’s cardiac arrest I have struggled with PTSD (post traumatic stress disorder) – especially at work. I’m in an environment where our main goal is to ensure that our staff are ready to react in a moments notice and to react to the highest standard. It’s what I’ve been doing since I was 15 years old, as a lifeguard myself, a trainer or a programmer.  And every once in a while (and more often than I would like), we end up talking/hearing about situations that have happened at one of our sites – we come together and talk about how it went and what could be learned and taken away. These moments now fill me with dread. As soon as people start talking I can feel myself get clammy and cold and my hands start to shake. I try to take deep breaths and calm myself down, I even leave the room to try and keep it at bay,  but I’m always brought back to the moment of Lily’s arrest and knowing that I failed her – and myself. When someone stands in the front of a room and tells us that EMS says that we can “never push hard enough” (during CPR) I’m filled with guilt – knowing that I couldn’t push at all. And even though I know, in my head, that I’m the only one thinking it, I can’t help but feel as though If I were to repeat my story to this group of co-workers, who all share the same common work goal, all they would see is failure.

PS – I know that it’s one day after Adoption Day and I should still just be reeling from happiness but sometimes that’s the downfall for sharing this journey with us – there are ups and down’s and they come whether we like it or not.

Cookie Monster….I mean, Master….

A mom post tonight….

Although we try not to dwell on it too much, there are certainly some aspects of Lily’s diagnosis(s) that can be challenging as her parents.  It can be really hard to see her work so hard and not make the gains that you want her to be making.  It can get frustrating when you finally reach a long awaited milestone (sitting for example) and realize that there’s no real time to celebrate, you just have to jump back in to keep working on the next skill (transitioning between lying down and sitting – she can get down, but getting up is proving to be a pretty tough skill).

But then, then there are days like today, where all of the work pays off and you end up amazed at such a simple thing – like eating a cookie….

Momma had been doing all the cookie work until now

lips can be a very big distraction – who knew?

Success!!!

And just to make it even better, she moved that cookie right to the other hand

post cookie glory

We only got about 3 full bites and then she spit them all out – that little down syndrome tongue is a great hiding place…

But speaking of new skills, Lily has mastered two other things this week: the skill of the fake cry, complete with squeezing her eyes to make the fake tears come, and the art of staying up past her bedtime by becoming the smiliest, most giggle filled girl you’ve ever met.  She’s a sneak this one…

tired eyes mean nothing

 

 

 

Parties and Brains and Zombies…oh my!

We’re having a quiet day here at home.  It’s raining outside and the mom’s say that makes people sleepy, plus I think I have this other tooth coming through and it’s making me slightly miserable.  I’m thinking about having another nap, but at the same time it’s kind of fun to watch the mom’s get so amused by me refusing to sleep and then fall asleep on the living room floor in a few hours.

It’s been a busy week for our little family.  Last weekend the mom’s threw a really big party  for me.  Originally it was called “Lily’s One Year of Ass Kicking” party, but then someone shortened it to just my “Re-Birthday” party (which frankly sounds nicer because I’m little and technically not aloud to swear yet).  We had an amazing time at MeMa’s house – swimming in the pool, playing Bocce ball in the backyard, eating delicious food and just hanging out with all of the people who were so supportive to the mom’s when I was so sick last year.  People were tricky though and brought presents, which was totally against the rules because it wasn’t technically a birthday party (don’t people follow rules anymore, geesh, kids today) but it was really kind of them.  I even heard a rumour that there were sparklers at the end of the night but someone fell asleep and missed out (okay, I’ll admit it, I fell asleep.  I’m so embarrassed).

After the party this week, I also had to go see my neurologist at Sick Kids to check and see how my brain is doing.  We got there bright and early and got my head all hooked up so they could take pictures of my brain activity while I was resting to see if I’m having any seizures.  And the happy news is, after waiting so long for me to fall asleep and then visiting my nurse Jane and getting weighed (I’m finally bigger than 20 pounds!!), I finally got to see Dr. W and she said that I look amazing! She said that my brain activity looks amazing for a kid who had infantile spasms! She said that we’ll switch to a safer medication for 1 year and then I can start to come off of it.  Fingers crossed everyone that my brain will keep being as healthy for the next year!

Lastly, I just wanted to show off my incredible new talent.  I’m getting really good at impressions – this is my version of Zombie Lily.  I’m tucking it away until next Hallowe’en…

Where I Leave Off

One last mom post tonight before Lily returns and tells you all about her “re-birthday” party, her trip to neurology this week and our big plans for the rest of the summer. But until then….

Most of you know that Jess and I are very different – sometimes as different as two people can be. While undoubtedly frustrating in certain situations, it comes back to reward us in the most unexpected ways and I realize that it’s a gift. Today, was one of those days. Today, I opened my email and read this:

July 14

I remember everything.

Every single detail of that morning.

You woke me at 4:00am. I tried to put Lily back to bed. Twice. I held her for about 20 minutes and then lay her down each time. She would last about 15 minutes before she would wake up screaming. Finally, around 5:30, I went to the washroom and you came in. You spilled Omeprazole all down my leg, and we laughed about it. I had no clean clothes, so medication-soaked clothes were what I was stuck with. I took Lily downstairs and swaddled her to put her in the stroller. Immediately, she was asleep. I walked for about an hour and a half before she awoke. She woke up screaming. I walked down Plains Rd. in front of my old elementary school holding her while she screamed. I jokingly told her, “Lily, if you don’t stop crying, I’m going to strangle you”. I would come to regret using that phrase shortly. I finally put her down in the stroller and started walking quickly home. I decided then that I would let you sleep for another couple of hours before we took Lily to Sick Kids. Something was very wrong. As we walked down our street, she fell asleep again, and I noticed a neighbour’s unusual flower in front of their house. That crazy purple one that is round and has antennae all over it. I stopped the stroller and took a photo with my phone. Stopping woke her up. I picked her up with my left arm and brought the stroller in with my right. I left the stroller downstairs and brought her upstairs. She was absolutely alive at that point.

When we got upstairs I took her from my shoulder and went to put her down on the change table. Her face was white. She wasn’t moving. Her eyes were closed. I tried to shake her awake, and then tried yelling. Obviously, neither worked. I screamed for you. I said the baby wasn’t breathing and that you had to call 911. I yelled twice, and you were there, handing me your phone. I was holding Lily face-down in my hand and had slapped her back. I still didn’t know that she was dead. I told the 911 operator, “My baby is not breathing”, but I actually kind of thought that she still was. You had her on the change table when the operator asked me if we were doing CPR. I said, “We can’t do CPR, her sternum is still open”, when you corrected me and said, “Her sternum is not open, don’t tell him that.” And I told him, believing with everything that I am that I was right, “We can’t do CPR – her sternum was just closed because she just had an AVSD repair, and we are still not allowed to even pick her up by her arms.” Then I thought about what it may be and said, “The AVSD was complicated by chylothorax, and she has several plural effusions around her lungs and heart, so she’s going to need a chest tube. Can paramedics do chest tubes? There must just be too much fluid. They’re going to need to insert a chest tube”. As I was speaking, all I could imagine was you doing a chest compression and Lily’s sternum snapping and you pulling out her heart on your two fingers. I truly (although, wrongly) believed that doing CPR would do more harm than good. The dispatcher asked me to open all the doors and put the dog away, all the while repeating, “There is so much help coming. Just hang on. I have so many people coming to help you. They will be there so soon.” And they were. The firefighters arrived first, parking two trucks across O’Connor, and blocking traffic in both directions. I was outside when our nosy neighbour from across the street popped her head out of her house to ask if everything was okay. I just said, “No” and walked back inside. I couldn’t even deal with what was going on upstairs, so I did the next best thing which basically involved me hyper-ventilating at the bottom of the stairs. I quickly composed myself, and went outside, only to have you go running past me to the paramedics that had just arrived, and telling them that the firefighters needed them upstairs – now. One went up, and right after that one of the firefighters came flying outside holding Lily stretched out in front of him to the ambulance. You looked at me and said, “Go! I’ll meet you at Sick Kids”, so I did. I still didn’t think that she was dead. There was a cop blocking off the top of Northbrook at Cosburn, and we sped around the corner over to Coxwell, and down to the hospital. There were people outside to meet us – just like on ER. I got out first and when they pulled the stretcher out of the ambulance, I saw what I hadn’t been able to grasp earlier – she was dead. They pulled the stretcher out, and the paramedic was straddling her, doing those chest compressions that we had been so terrified to do. In that moment all I thought to myself was, “Oh my God. She’s dead. They don’t do chest compressions if you’re not dead. She can’t die first.” I was escorted into the hospital by a cop and as soon as we were in the room, a child life specialist was by my side. Apparently, when your baby dies, they don’t like to leave you alone, so I had this lady following me and interrupting my pacing while I was trying to phone and tell you that we weren’t at Sick Kids and to not go there. You weren’t answering your phone, which was stressing me out more, until finally the lady said to me, “Look, I am very concerned about you right now. You need to sit down – please”. So I did, and tried calling you again – and felt your phone vibrating against my leg. I had used your phone to call 911, and just put it in my pocket. The Dr. that brought Lily back to us is a marvelous woman that we had previously met, and once she had a pulse I see Dr. P. looking at her face and saying, “I know this girl. I know that I have seen her here”, before scanning the room and making eye-contact with me and saying, “I remember you – you’re the adoptive mom”, and leans back down to adjust something on Lily. One of the nurses hands me the pajamas I had put on her to take her for a walk earlier – my favourite ones with reindeer. You arrive and I tell you what the child life specialist (and now a social worker), have told me (which, is unfortunately not much). After Dr. P. has called Sick Kids and made sure that Lily is stable, she walks over and hugs me. After she leaves, I notice all the police in the room. And there are LOTS. I lean over to you and say, “Crystal, do you think that all these cops are here because they think that we did something to her”? The social worker hears me and says, “Oh, no, no, no. This is just what has to happen.” That calms me, because I can’t imagine the rage I would have if someone actually accused me of intentionally hurting Lily.

When it’s finally decided that we’re going to Sick Kids, I decide I should go home to get some stuff, let the poor dog out, and take my car to meet you and Lily at Sick Kids. When I asked the one policeman (that ended up staying with us all day) if I could leave to go home in a cab and get my car, he actually laughs at me and tells me that he will drive me home. On the way, he kept saying things like, “I can drive you guys to Sick Kids”, and, “If you need, we can give you money for a taxi home”. This is when I realized that he didn’t want me to drive, but probably also didn’t want to argue with me if I was going to disagree.

When we got home, two cop cars are outside. I go upstairs and head right to Lily’s room. On the floor is the electrode pad for the AED, and the rest of her room looks like a disaster area. Her mattress is upturned, furniture is moved, and it is just a big mess of dis-array. All I can think is, “What the hell did Crystal do? Why on earth would she have moved all this crap?” On my way back downstairs I decide that I probably shouldn’t drive, and have my policeman take me back to East General. When we get there the Sick Kids transfer team is getting ready to take Lily, and you and I get into the cop car. After getting in the car, our officer goes over dispatch and says, “Good news – our baby girl is okay. Stats are stable and we are transferring her and her parents to Sick Kids now”. The dispatcher comes back on and first I hear some cheering before she says, “We are so relieved to hear that. Can we offer you any assistance?” I have no idea what this means, but he says back, “If there’s anyone in the area that can help, we would really appreciate it.” She tells him that she’ll, “see what she can do”. We lead the ambulance (both of us had lights and sirens on), south on Coxwell to make a right on Danforth. We are cruising at a good pace, until we start to hit the traffic at Broadview, and I realize the light our way is red. We end up driving on the left side of the street and all I hoped for was that people in the opposite directions would stop; however, I realized then that there was a cop standing in the middle of the intersection keeping it closed. Before we were even through it, that cop is back in his car, speeding off in front of us. This happened at every single intersection along Bloor until we hit Bay, and then all along Bay they were holding intersections. None of them even knew Lily or either of us, but here they all were wanting to make sure that she would stay alive. By the time we got to Sick Kids, there were four other cop cars around us, taking turns driving ahead to intersections that weren’t already being held. We slowed twice for jay-walkers, but not once for a car being in our way. When we arrived at Sick Kids, again we had an entourage waiting for us to whisk us up to PICU. And thus began the longest 44 days of my life (and probably yours).

I remember everything.

I will be your memory.

A Mom’s Look Back

A mom post tonight….

The pyjamas she was wearing are still in Jess’ drawer.  I don’t remember when they came off – if Jess did it before I got to the room, or if I pulled them half off to stare at her chest.  There are nights when I can’t close my eyes without seeing it – the newly sealed bones coming together to form a perfect, sharp, mountainous peak.  My mind pulls me forward, feeling my fingers trace the line between her nipples and then pausing.  Then tracing up the edge of her ribcage, placing my two fingers down and then stopping, thinking to myself that my fingers weren’t strong enough to push through this lump and get to her heart.

The memories of that day are so chaotic when they run through my mind – when I’m tossing at night, when I hear a siren drive by, when I’m sitting in a meeting talking about how we need to train our lifeguards to react.  It always starts with my hands on her chest, and then I remember the scream – I can still hear it.  Jess’ voice piercing through the sleep that I had just really settled into after being awake for so many hours – I have never jumped so fast – grabbing my phone and dialling for Jess, because I knew that it had to be me who stood beside her.  Then the memory jumps and I just see her face, and not even her face, but her eyes, those beautiful, almond shaped eyes, that I am constantly losing myself in, rolled so far back that I’m haunted by the image of them.  I can’t even picture them clearly, it’s just a flash and then my brain moves on.  It moves on to the siren, knowing that “so much help is coming, I’m sending so much help”, as the EMS operator told Jess.  I could hear it before I even registered what it was, knowing that it was coming for us.  I heard the footsteps and Jess’ voice and then I watched them take her from me.  I watched as they pulled out the defibrillator and began pulling the electrode pads off, and then I forget.  There is this blank gap in my memory.  I know that I went outside to guide the ambulance crew in, but I don’t remember getting there.  Then the rest is like a montage – short clips of information – watching the paramedics run past me, holding Lily and running faster than I had seen anyone move; Jess and I speaking in code, deciding she would be the one to go with our baby, and then another gap and I’m back upstairs, trying to get dressed and find my phone and then walking back out the door only to be greeted by 3 officers telling me that they needed to search our home.  I can see myself walking into the emergency room and there are just so many people but I couldn’t see Jess but I could see Lily and she was surrounded by bright lights and covered faces and machines.  I still couldn’t find Jess but I saw the doctor – our hero doctor –  the one who was with us on the very first night we had Lily home when we thought we had pulled the Ng tube – and in that moment I was calmed.  I finally got a good look at Lily and saw that she was trying to fight the intubation and for the first time I realized that she was alive and I almost dropped to the ground.  I was just cold and shaking and then I saw Jess and in that moment, we laughed….laughed…because she had my phone.  I remember driving on the wrong side of Bloor Street, being transferred to Sick Kids and really, truly understanding how horrible it is to be following an ambulance and not have people pull to the right.  But when we turned on to Bay Street and there were no cars, no other traffic except us and Lily in the ambulance ahead of us, that’s when I just kept thinking: if they closed Bay Street for us, then this is really bad.

There are times when I wish I could relive that day, which seems like an odd idea since it never leaves my brain.  I want to see it from someone else’s perspective – watch it as though I’m watching an episode of Grey’s Anatomy.  Because maybe, if I could see it like that, something would click and I would finally be able to realize what happened.  Right now it just feels like I’ve missed part of the story.  The main points are there but I’m missing the details – a bad dream that you’re scared of, but don’t remember exactly why. It doesn’t make sense to me that I can’t remember every single detail of the day that I never stop thinking about.  And maybe, if I could finally see how all of the pieces fit together, I could begin to let go.