Naptime and Soccer and Bubbles….Oh My!

I had a really really really great day today.  It started early, around 6:45am.  This is the second morning in a row that I`ve chosen to wake the mom`s up with my beautiful voice just cooing into the monitor that they so nicely put above my face (so Mommy can hear me breathing).  I think it`s a great way to wake up but the mom`s are starting to look a little groggy.  I think they were used to the Lily who slept until at least 8am everyday.  Mommy and I spent some quiet time together before we got my dog Ellie ready and we had to take her to the vet.  The mom`s had noticed that Ellie had been limping and so they had cancelled the dog walker and made Ellie rest for 2 weeks, but the limp was only getting worse and Ellie had stopped eating too and dropped weight really quickly (we`re a lot alike, me and Ellie).  So, it was off to the vet for Ellie so that she could be sedated and given an x-ray.

Once we got back from the vet, Mommy and I went into the mom`s bedroom and we ended up crawling back into bed with Mama C and we all settled in for a nice family nap (a far cry from the mom`s who said that I would only sleep in a crib – I fooled them!).  It turns out that Mama C didn`t actually sleep that much but it was still really nice and before we knew it I was a little bit late for lunch and the mom`s had to hurry us out the door so that we could go and have lunch with Roxann.  Roxann works with Mama C and they like to have lunch together and talk about all the stuff that`s going on that Mama C shouldn`t care about right now because all of her attention should be focused directly on me.  But it was pretty fun and I let Roxann hold me without fussing which is more than I had given her before.  I guess I have to get used to the idea of Mama C being with Roxann all day instead of me, but no one said that I had to like it.

We got home from that outing and it was only a short time later that the mom`s got me dressed so that we could go out again! This time we were going to meet up with Auntie CC, Uncle Rico and Thor, plus Gramma and Pa, and Dale and Heather (this was actually my first time meeting Heather, but I know why Mama C likes her so much now.  She`s very nice and has great hair – I`m going to get tips from her one day).  We met at a park and watched my Thor play in his last soccer game of the summer.  He was very nice to me and gave me a kiss everytime that he came over to get some water.  Once his game was over, all the grown-up`s decided to walk to get ice cream.  I was pretty tired at that poing, but Uncle Rico carried me and my gtube back-pack, and by the time we got to the ice cream place I was happy again. 

After ice cream, and after saying goodnight to Gramma, Pa, Heather and Dale.  The rest of us packed up to walk back to our cars when we noticed the fountain at Danforth and Jones was doing something funny….it was spitting out bubbles!! Someone (someone wonderful) had put soap in the fountain and it was filled with huge amounts of bubbles and foam.  The grown-up`s took us over to see it and before I knew what was happening, Thor and Mama C had climbed right in and were splashing all around! And then, with no warning at all, Uncle Rico scooped me up and handed me to Mama C so that I could join in on the action! I was happy for a little bit, but then realized that this was essentially a giant bathtub and I hate baths, so it was time for me to be done.  But Thor and Mama C just kept playing.  Finally, Auntie CC saw how close it was to bedtime and we wrapped up our adventure for the day.  It was pretty fun all around and I think that if this is what life is like outside of Sick Kids, that I really will try and stay out of that place!

Staying Put

I’m home again.  I’m hoping to stay here for quite some time because as much as I love Sick Kids when I have to be there, after 66 days I was ready to be back at my real home with just me, the mom’s and my dog Ellie.

The doctor’s finally decided to let me go last Saturday, when they saw that I was eating really well after my G-tube surgery.  They were really happy with how much and how fast I’m eatting and they even said that the mom’s could keep trying to feed me more during the day so that they could cut out an overnight feed, which means more sleep for everyone (Mama C is especially glad to hear that!).

You would think that after all that time in the hospital, that the mom’s would want to take it easy when we first got home, but we’ve been moving and grooving since Saturday afternoon.  We were barely home for 2 hours, when the mom’s decided that we were going to meet Mommy’s friends Issac and Jodi for lunch in the park.  We spent some time there and then the mom’s took me for a walk on the Danforth – they picked up some dinner and I had a really great nap. On Sunday we had visitors Grandma and Grandpa Elliott, Uncle Jeff and Auntie Marina, and new relatives from a place called New Brunswick, my Great Aunt Maureen and Great Uncle Jon (who was really nice and told me that a bunch of people in Perth-Andover were praying for me too!).  There was also a blackout that day, which was fine until 8pm when Mama C started freaking out a bit because there was no water to warm my formula AND one of my medications has to be in the refrigerator and gets really unstable if it gets warm.  Luckily, very shortly after Mama C started to get all frantic, the lights came on again and we had a very nice night at home together.

On Monday I got to see my Jason and Theresa and I saw them again today too (but this time with Joey, so it was super fun!).  We also went and spent some time with Gramma and Pa this afternoon, which I liked a lot because Pa got to hold me and he’s never really done that before.  Tomorrow I’m going to the Scarborough Town Centre with Mommy and Telly and I have no idea what the mom’s have planned for the rest of the week, but it looks like it will all be fun!

A Rare Face…

A mom post tonight.  They were able to pull the temporary Ng tube yesterday because our Lily is doing so well with her G-tube feeds.  It’s a gorgeous face that’s been lurking behind that tube.  A tube, that we’re now seeing must have been far more irritating and uncomfortable then we had ever thought because the personality change we have seen in the last 24 hours is remarkable.  Lily has always been a happy, content baby but now she’s smiling all of the time, she let me brush her hair (getting all of the tangles out) and put in the pigtails without a peep and even let the nurse and I do her dressing change (which normally causes a total breakdown) without a single tear.  Between stretching out her vein and getting rid of the Ng tube, it feels like we’re bringing home an entirely new kid.  She’s amazing.

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….  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!

Around and Around and Around

I know that we’ve laughed at what a trickster I am before, but it really is true.  In order for me to get to go home, cardiology wanted to make sure that everything about my heart and lungs were working fine.  They were a little concerned about some of my earlier test results and wanted to do another Echo to see if I had pulmonary hypertension (high blood pressure, but between my lungs and my heart, not like the normal blood pressure).  So, yesterday morning I got to put on my pretty (and comfy) scrubs and I got wheeled down to the Echo lab, where Mama C and I saw Jane (who was my nurse the first time that Mama C and Mommy came for an echo with me before my first overnight visit) who came over to make sure we were all okay because she had heard about my arrest.  My nurse for yesterday was Rita, who was really kind and made sure I got weight and height checked (5.13kg and 63cm) and then she gave me some medication to make me sleepy (because it’s easier to get a clear picture if I’m sleeping) and I drifted off for a really great nap.











Mama C, on the other hand, hung out beside me until it was over.  She says that she knew something wasn’t right because the radiologist walked away and went right to the phone to call someone.  It turns out that he was calling my cardiologist because there was something a little surprising happening inside of me.  My cardiologist came downstairs right away to talk to Mama C and explained what was going on.  The heart is made up of 4 chambers: the left and right atrium and the left and right ventricles.  The blood moves between the atrium and ventricles through tiny doors that open and close when the heart beats.  It turns out that I have a blood clot that is right on the door between my right atrium and ventricle and it`s only being held in place by a little thin arm.  This is dangerous because every time the door opens and closes, it puts pressure on that thin arm and it increases the chances of the clot coming lose and moving to my lungs (that`s called a pulmonary embolism and it`s really bad).  So, they’ve loaded me up with blood thinners to decrease the work my heart has to do and the goal is that the longer the clot doesn’t move, the more likely that it won’t move – that hopefully it will calcify and stay exactly where it is.  The good(ish) news is that it`s possible that this is what caused my cardiac arrest in the first place – maybe a small piece of is got dislodged earlier – so they’ve scheduled an MRI for Tuesday, to look at my heart and my brain more closely to see if they can figure out if there was damage done earlier.  But for now, the doctor’s have hooked me back up to the heart and oxygen monitors and are constantly checking the level of blood thinners in my system so that they can keep me safe.  When my cardiologist came upstairs to explain everything to Mommy (because Mama C wasn’t sure she could explain it as well as an actual doctor) she said that while they have seen this happen before, it`s actually really rare, which mostly made the mom’s laugh because of course I`m going to develop the thing that’s rare – I do every single time!











It also means that my nurses are coming in to check on me way more often, which isn’t so bad because they all think that I`m so adorable – especially with my pigtails.  One nurse took one look at me and said that I looked like Boo from Monsters Inc and then she called me that all night long.  I’m lucky their so nice to me, because I can certainly be quite cranky – I really don’t like getting my blood pressure taken and I scream horribly when they come to do blood work.  But most of the time I try and be extra charming to make up for the times that I`m not such a great patient.






Busy Busy Busy

I’m very popular here at Sick Kids and it keeps me very busy.  Everyday someone called “transport” comes and wheels me away in my bed, with Mama C trailing after us, to take me to see a new part of the hospital.  Sometimes, they get confused and don’t realize that I’ve already been to Ultrasound or Xray, but it’s still nice to get out of my room, so I don’t complain too much.  Plus, usually while Mama C and I are waiting for Ultrasound or Xray, people like to stop and talk to me – mostly about my hair.  Some little kids like to look at me because I’m just a baby and then they ask questions about my Ng tube, but it’s fun to meet new people so I don’t mind at all.  Plus, I understand why they’re checking me out, I am pretty cute.











All of these tests are trying to figure out the different things about me that like to play tricks.  I’ve had some ECG’s to look at my heart and lungs, an ultrasound to look at what the doctors were afraid was a hernia (it’s not, just a weak muscle), they’ve checked my ears (I hear really well), and they’ve checked out my eyes.  This was where we thought we had come across a problem.  They checked my eyes pretty soon after I got moved out of PICU and the tests showed that I wasn’t seeing things anymore.  While there was nothing actually wrong with my eyes, part of my brain that got injured didn’t know how to interpret what my eyes were seeing, so my eyes wouldn’t focus on anything and I couldn’t track things that you moved in front of me.  The only thing I was doing was moving my eyes if I heard a sound but even then I wouldn’t always do that.  So, the doctors gave the mom’s that news and of course, they were pretty upset.  But then, something happened! It’s officially not true, because we haven’t seen any more eye doctors yet, but everyone (and my everyone I mean the mom’s and my OT Lisa) think that I might be seeing more than the tests were showing.   I try really hard to look people in the eye when they’re talking to me and I’ve started moving my head to look at my butterfly mobile again.  Then, best of all, when I was in a dark room yesterday, Lisa put some moving pictures on the wall of bright coloured birds and as soon as she turned them on, my eyes got really big and I stopped crying.  Lisa’s pretty sure that even if the tests are saying one thing, I’m actually tricking the tests! The mom’s will never know for sure though because I don’t speak english yet.  They say that the person who figures out how to translate “baby” will make more money than anyone else in the whole wide world.

I’m still having a little trouble eating with my Ng tube, but it looks like that will be a good thing.  The mom’s talked to the G-tube nurse and then went to a class to teach them all about G-tubes and how to take care of mine when I get it.  Then, when we saw my doctors during rounds today, they said that I will probably get mine put in next week! The mom’s are really really happy about that because it means that they don’t have to be so worried about me aspirating food from my Ng tube anymore. It means that I won’t get to go home for at least another 2 weeks, but everyone thinks it’s for the best.   The G-tube is especially good because I decided to throw the mom’s one more bone and I am starting to remember how to suck a bottle again!  Lisa has been working with me a lot to help and I started doing so well that she was able to do a feeding study on me.  This is when they take a big machine and watch where my food goes when I swallow it.  It was really cool.  It showed Lisa that if I drink thin liquid (like regular formula or water), it goes down the wrong hole right away, so that’s not safe for me.  I also can’t have thin puree but I can have a medium puree (it’s my formula mixed with a lot of rice cereal) and I swallow it really safely and I don’t aspirate on it at all, even if i take too much.  So today, after all of my hard work, Mama C was able to feed me 50ml with a bottle!! We’re only going to try it once or twice a day for now, because it’s hard work, and it’s not like feeding a little baby because I have to be sitting in a special chair for now until I really get the hang of it, but everyone is really proud of me.  It’s not enough to make me grow, but it’s enough that I can keep working on it and try some other things too.  Hopefully by December I’ll be doing well enough that I can even eat some birthday cake!











AND – I told you I’ve been busy – I’m now allowed to go for walks with the mom’s in my stroller around the hospital.  I have to still wear my oxygen monitor, because sometimes my oxygen levels drop pretty quickly, but it’s still nice to be able to go and sit with the mom’s while they get lunch.  They even let me go to the toy store!! This means that maybe the next time my Thor comes to visit me, I can meet him downstairs and we can throw coins in the fountain together!