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.



A Regular Kind of Week

My life has suddenly become very busy.  On Wednesday mornings I go to a sign language class and on Thursday mornings I go to a music class.  Both of these are at Surrey Place, which is close to Sick Kids but just a place where kids who are like me, mostly with Down Syndrome but some with some other quirks too, can go and play and learn with other kids who like to learn things at own pace.  Mommy and I have been going for 2 weeks and starting this week Mama C is going to take me to the sign language class so that she can learn too.  I’m happy about that because then I’ll have at least one morning a week to hang out with Mama C.  Have I mentioned that I miss her while she’s at work.  We’ve been trying to get up together in the mornings so that she can feed me a bottle, get me dressed and put my hair in pigtails before Mommy has to get up.  I don’t know why we didn’t start this before but I really like it – it’s just our time.

Last week was Thanksgiving and this is a holiday that I can totally get behind.  On Sunday we went to Gramma and Pa’s house and there were sooooo many people there! Everyone was happy to see how well I was doing and so I put on a good show for them.  I was barely cranky at all and I just kept smiling and smiling my big squishy face smile and won everyone over.  The mom’s were really happy because I’ve had a cold and I can get cranky pretty quickly.  I also got to see Kristy and Tia and Deana who live next door to Gramma and Pa.  It was nice to hang out at their house for a little bit because they have 2 dogs that just love sniffing my toes and they let me pet their fur without getting mad.  Tia also made me a sock monkey, which I love so much and now it’s sitting on my shelf that has all of my favourite toys.

On Monday, we spent the day with Grandma and Grandpa at Uncle Jeff’s house.  I got to spend so much time snuggling with Uncle Jeff and Grandpa.  But I was really tricky with Grandma.  She had been helping Mama C in the kitchen so I didn’t get to spend as much time cuddling with her, but the two times that she finally got to snatch me for a bit, I managed to wiggle around and open the port to my g-tube and leak all over her! The first time was really really messy, but then I thought it would be funny to do it again!

In other news, we saw my regular doctor this week and she is super super happy with how well I’m gaining weight and growing.  She’s so happy in fact that she stopped one of my reflux medications completely AND she told Mommy that they can stop getting up in the middle of the night to feed me! During the day I still have to eat every 3 hours, but we’re just going to do a little more during the day to make up for not doing any eating at night.  The mom’s seemed a little excited about this news but I can’t figure out why.  It’s not like the night feeding was a lot of work – I slept right through it!

Looking Up

After the CNE last week, the mom’s and I had a very lazy weekend.  There were a lot of afternoon naps and snuggling on the couch while the mom’s watched some bad TV (I’m only a baby and even I know that 30 year old women should probably not be watching Degrassi Goes Hollywood, right Uncle Jeff?)  I had some fun time with Grandma and Grandpa Elliott and Uncle Jeff and Auntie Marina on Monday, which was excellent because then Uncle Jeff and Auntie Marina stayed ALL day and we just got to keep hanging out. Today was a big day in my life.  It’s not everyday you know, that a girl turns 9 months! That’s almost one whole year! And to show how awesome I am at 9 months, I decided to start LOVING being on my tummy (especially if I’m lying on Mama C) and remembering how to push my head up again.  Today I did it for so long while lying on Mama C that my muscles actually got all shaky afterwards and I couldn’t hold it up anymore.  Mama C says that I’m especially cute when I lift my head up, smile really big and then snuggle right back down.  She thinks that I did this just to make her feel bad about having to go back to work so soon.

We had a very busy day on my 9 month birthday.  We started by going to see Mama C teaching swimming lessons to my Thor and Darshan.  I can’t swim yet (I don’t even technically know what swimming is) but I know that those 2 boys are really good and they make Mama C laugh a whole lot.  When the swimming was done, the mom’s stood around chatting with Auntie CC and Darshan’s mom Jenna, while I rolled around on my purple Grandma quilt.  Finally everyone decided to leave and the mom’s put me back in my stroller so that we could walk down to Sick Kids.

Don’t worry people – we were only going for a quick visit to say hello to my friends on 4D (the cardiology floor).  When I had my chylothorax, the mom’s had to get special formula and they found out that it was pretty expensive.  But because I went back into the hospital so quickly, I ended up using almost none of the 11 cans that we had so the mom’s decided that they could give back a little bit by giving it to the dietician’s on 4D (since Chylothorax is pretty common with heart surgeries) in case there’s another family who needs it and might have trouble paying for it without being all stressed out.  The mom’s understand that it’s really hard sometimes to leave the hospital without feeling scared and overwhelmed already, and no one should have to worry about money for the right food too.   So, we stopped by the nurses station and I got to see a bunch of my old nurses, who were really happy to see me dressed in real clothes and much much happier then when I was hanging out with them all of the time.  Some of them even said that I looked bigger and we found out this afternoon that they were right! Once we were done at Sick Kids, it was time to go and see my regular old pediatrician.  She was very happy to see me because in just 2 weeks I gained a whole pound and I grew another centimeter – so now I’m 12.5 pounds and 64cm long! I’m totally a little string bean.  The doctor was also happy because I’m still doing really well drinking from a bottle and my reflux seems to have gotten much better (the mom’s say to knock on wood).  It’s actually so much better that I’m able to stop taking so much of one of my medicines and she hopes that next time we’ll be able to start slowing down my other one too.    Obviously this means that getting the g-tube was the absolute right decision for me!

We finally got to come home after all of that and I had a small nap.  My daytime napping isn’t going super well, but since I don’t get really cranky and I sleep really really well at night, the mom’s are just letting this ride out for a bit – plus, they’re still just liking the fact that we’re all at home together so I’m getting a bit spoiled.  They say that has to stop soon but I think I can pull it off for a little bit longer.   I am pretty cute you know.

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.

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 Gtube 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!

Missed Me, Missed Me, Now You Have to Kiss Me…

It’s been a few days and I’ve heard some rumblings that people are missing me and my posts.  I’m really sorry for the delay, but I have been really really busy getting all settled back at home! It’s true – on Saturday morning the awesome nurse practitioner, Erica, woke me up early and sent me downstairs for one last chest x-ray.  After the surgeon had a chance to look at it, they decided that my effusion looked small enough (finally) that my body could probably just absorb the remaining fluid because it obviously wasn’t coming out of my drains anymore (there was just a teeny tiny bit coming out of both tubes).   The mom’s were a bit nervous because they weren’t really expecting it to happen so suddenly.  It turns out that the information they had gotten before was a little mixed up: instead of starting on steroids right away, the doctors decided to see how I reacted to having food in my tummy – to see if the fluid would stay down or would start collecting again – before trying the steroids.  In the end, they were really happy with me and that meant letting me go home.

I obviously had to get my chest tubes taken out first, but after all I had been through, I handled it like a total and complete champ.  They gave me a little morphine and my little pink bunny and went to work.  The only time I even cried a little was when a little skin was stuck to one of the stitches holding the tubes in place, but as soon as that was figured out, I stopped crying and out the tubes came in just under a minute.  It was the best feeling in the whole entire world! Mama C looked so so happy the whole time (and the nurses were very impressed that she even stayed in the room).  Mommy had decided to go for a walk and get the rest of my bravery beads (I have a lot of them now) but when she came back, they both got me dressed in my pretty white dress and purple headband from Natalie (because everyone needs to look they’re best when they’re making an exit) and we only had to wait 20 more minutes before I said goodbye to Erica and Vari and we walked out the door (but not before the mom’s got one last starbucks).

The mom’s were a little worried that it would take me a while to get settled at home again but they really should have known that I’m the most impressive little girl and so far it’s been okay.  I had a bad night sleep on Sunday night; I was awake from 2am until 6:30am and just wanted to hang out with Mama C, but last night I was back to sleeping through the night.  I’ve had 2 bath’s with my all fixed heart and I like it so much better than before.  Before my heart was all fixed, I got cold very easily but now it’s easier for me and as long as I stay wet I don’t cry at all.  My hair got longer while I was in the hospital (I think it’s because I was sleeping so much and growing while I slept) and now Mama C can put it into pigtails….I don’t know how I feel about that yet, but I’ll let her play for now and get her fix in before I’m older and can tell her to stop.

I’m still a little bit weak from all of the lying around that I did for 23 days (the mom’s say that’s a long time) and so I’m having some trouble holding my head up and my arms are weak too, but the mom’s are working with me to try and build up my muscles again.  I’m also not eating as much as before because 8 days with no food means that my tummy shrank and shrank and they need to build it back up slowly.  So, right now I’m eating 75mL every 3 hours (which makes it feel like I’m eating all day long) but hopefully soon I’ll be able to go back up.  I haven’t even puked yet since I came home and I think that’s a really good sign.  Before we left the hospital, a new OT came and met with the Mom’s and taught them how to start giving me food in my mouth.  We’ve started small – I tried a bottle but I didn’t really understand what to do with it and it made me choke a lot, so the OT said that it was okay if I didn’t get the bottle and we started working with some apple sauce or rice cereal and lots of different ways for me to get it in my mouth.  The mom’s sometimes put some on their fingers or my thumb and I suck on them (it’s messy and fun), and sometimes they use a spoon and kiss my lips and the insides of my cheeks so that I get used to the feeling of food being in my mouth.  They know that it makes me very nervous and I gag a lot, so they’re not putting any pressure on me and as soon as I start to get upset, they stop and we try again when I’m ready.  The mom’s also understand that it’s probably going to take me a long time to learn how to eat food AND to get enough food in my tummy to give me all of the nutrients that I need to grow big and strong, so I will still need a G-tube for at least a little while until I master this eating thing.  I’ll see the G-tube people in about a month and then it will take another 2ish months before I can have that surgery, but I’m not really in a big rush to go back to Sick Kids for an overnight stay.  Until then, after seeing the hearts that the nurses made at the hospital, Mommy had decided to start making different shapes for my face tape – so far I’ve had a hippo, a butterfly and the Batman signal.  From what I hear, there’s already an elephant, a crocodile and something called a Harry Potter symbol still to try out.

So, in the end I’m home now and it’s summer and we have some big big plans! The mom’s keep talking about places like: Ontario Place, Centre Island, Marineland, Riverdale Farm, the beach and the wading pools, so I’m excited to figure out exactly what all of those words mean.  I think we’re going to have a lot of fun!