Thursday, May 30, 2013

Thursday May 30th

I feel like I don't have much to report because every day seems to be pretty much the same... Lily plays at the beach which she LOVES.  And fights off nurses and medicines...most of the time I feel I can keep it together and I do, then sometimes when I am leaving Lily the stress of the day just hits me like a wall and I feel overwhelmed and shed a few tears...  the same old same old...
Sad face! The beach is closed!

Yesterday Lily continued to have way too much fluid draining... and I feared we'd be back at square one going back to nothing to eat.  That was the reality we were given today during rounds, I obviously wasn't surprised but almost wished they had never allowed her to try eating for the last two days because we are now back at square one as far as chylothorax treatment goes.  If she hadn't eaten we'd already be 5 days into treatment which usually is 2 weeks without food.

Yesterday she came off her oxygen which is a great step.  When I came in the morning (grandma gibb was with her last night) Lily told me to take off her oxygen tubes (they had tape holding it down and she wouldn't let the nurses do it) so I got the pleasure of ripping tape off her face first thing :(  she cried after I did the first one, so I asked if she wanted to wait to do the other side and she said "no take if off" poor girl.  Later that night she was scolding me for ripping it off and as she pointed her finger at me with an angry face she said "Don't take that off again! not nice!" haha she's hilarious. I didn't want to do it in the first place Lily!

Tonight she hardly put up a fight while getting her heparin shot (blood thinner) I was so proud of her. When she gets upset because nurses are flushing lines etc we've been doing breathing exercises to help with her O2 sats and she does them quite well and I am finding that it is really helping her to be a little calmer.  Whatever works right!?
Connect the dots anyone?? You have two legs to choose from :(

When I came back to the hospital last night she was probably the happiest I've seen her yet! Very much herself!! Today she was also very happy and comfortable.  While at the beach today the nurses had to come and tinker around with her IV's (they try and keep any treatment out of the beach so the kids know it's a safe place to be and play) as consolation Lily got to take the car out on loan for the night! she was so excited she got to drive it back to the room!   We picked up Flynn Rider and Tinkerbell for a ride to pick out some movies.

One noteworthy update is I have tamed the beast!!!!!! Lily's hair was beyond atrocious!  She had a rats nest on the back of her head that looked like steel wool.  I seriously thought there was no way of untangling it!  She hadn't had to hair done since the day of surgery.. I know gross, it still hasn't been washed as we can't get her wet yet.  I spent what seemed like an hour with detangler spray working at getting it out while she played.  It was a miracle it came out! haha  I have a dry shampoo package I'm going to try doing to her it's in a shower cap thing? I don't know how she'll react to it.  Hopefully in a few days after she gets her subclavian IV out and it heals over they'll let me lie her down on the counter and wash her hair out at the sink.  Right now it's sponge baths/bath wipes to clean her, she doesn't seem to mind.
This does not even come close to capturing just how bad it was! 

Tonight she got her IV taken out of her left hand.  I am sooooo glad because it was disgusting! so much tape and arm board to keep her hand flat etc it was starting to smell.  Once they took it off lily made a face and then did a little spitting face (she does that when she smells something gross) haha I couldn't help but laugh.  I was happy to give that arm/hand a good wash!

Lily is getting somewhat used to some of the procedures that happen a lot around here.  She even likes to help plug in some of her monitoring wires when she gets back from playing.  She's practically her own nurse!! ;)

The make a wish foundation supplied dinner tonight at the Ronald McDonald house and Lily got a "magic wand" it was so cute to hear her saying Bibbity Bobbity BOO!

I really feel like I'm missing out on a lot with Hannah! I only see her a few precious hours a day and when I do I'm usually helping Lily and not paying her much attention :(  So glad my mom could be here and Justin's mom too to help us out!! It would be impossible to do without them to watch Hannah! I couldn't bear to ever leave Lily alone at the hospital!

Last night in Lily's prayers she again said she was grateful for dr's but after that she said "but not for medicine" I had to laugh a little at that one.
Lily still LOVES to play Dr.  She is very gentle with her patients and shows them lots of love, giving them kisses and telling them it's going to be okay.

I love that whenever I do something for her, without asking for her to say it she'll tell me thank you or I love you sooooooo much.  It's adorable!  Even after having unpleasant things done she'll say "thank you mom thank you I love you."  She is just sooo loving even when she's going through something awful!  She has the sweetest spirit.

Tomorrow they will be putting her under to get a PIC line placed.  That is a long term IV.  It will be used to give her all her nutrients now that she'll be NPO (no food by mouth) for a week or two.

Wednesday, May 29, 2013

Tuesday May 28th..

Because her fluid drainage had significantly decreased in the days before, the dr's had decided Lily could start a low fat diet.  The low fat diet will challenge her body to see if she starts producing more drainage or not.  Once rounds were over I asked her if she wanted some milk or juice, she opted for some skim milk.  Immediately after she happily asks "I have food now?" I was happy to finally say yes.  She was such a patient little girl going without for 3 days and not complaining! (wish I could do the same, then I might loose this baby weight!)

I absolutely love the look on her face in this picture!!! It's like she's saying I'm free!!! And get to play! 

We went to the beach twice and she walked the whole way there! Doing all that walking was a big accomplishment for her! At some points she was speed walking and I had to tell her to slow down so the IV pole and I could keep up! (plus she's still a little unsteady on her feet)  She played in the water station, made a craft, drove the car, played kitchen, and played with a tool set.  In the afternoon there was a one man band that came to perform ( kind of like the guy from Mary Poppins) She sat through one song because I made her, and then was inching off her chair.  I can't blame her, this is her short opportunity for play time without being nagged by nurses and doctors, a time to forget she's stuck in the hospital!  She did not want to leave and was trying to negotiate with me so she could stay a bit longer.. How could I say no??? But she was getting so tired so I scooped her up and walked her back to her room so she could have a well earned rest.

Lily put some pixie dust on her bird so it could fly! haha 

She watched a few movies throughout the day and played some games.  She didn't really eat much, which I can't blame her I wouldn't feel up to it if I had been through what she had been!

Hannah came by for a few visits, which I think is one of the biggest highlight of her day.  She is so sweet with her!!! She loves that baby so much and tells her over and over again.  

We sure miss our daddy up here this week and can't wait to see him friday night!!  I know Lily will be soo excited to see him!

Tuesday, May 28, 2013

"Sometimes I don't like Dr's.."

Really quick update for yesterday.. she was up from 1-4 which really sucked!!! I tried to just put movies on for her so I could get back to sleep but I feel like I was crawling out of bed ever few minutes still.  needless to say I was exhausted and by the evening I could tell my patience was starting to ween.

Lily had just about every test/procedure in the book yesterday poor thing.. A really busy day of not fun activities for this little one.  blood work, IV flushes, an echo, ECG, chest x-ray.. the the usual meds, needle pokes and tubes being drained.   Luckily there was almost no drainage so those were done just twice.

We haven't been able to get an echo done on her while being unsedated in over a year! so I was really worried this would go horribly wrong! We've been practicing at home on each other and with her toys.. I suppose it made a little difference.  Judy from Child Life came in to help distract her and it helped alot!  There was still a lot of fighting but there were long moments of calm.

Lily didn't want the ECG tech touching her so I put on all the stickers and hooked up the leads.  It felt pretty natural, I've only seen a few hundred of these done ;)  I'm just glad Lily allowed me to do it, and stayed still!

Her last big test was the chest x-ray.  I had gone home for a shower/lunch and my mom was with her.  I came back within an hour and she wasn't in her room.   I had assumed she'd gone to the beach but she wasn't there either.  When they told me she went down to radiation,  I was kind of bummed that I wasn't with her.  Instead of waiting for her in her room I decided to go down and torture myself by listening to her scream out for me from outside the room.  She had already gone in and was in the process of getting into the "torture device" so I couldn't just walk in.  I went in as soon as they were finished and she was back in the stroller.  As we were walking back to the room she said "I was a little bit scared" :( I told her it's okay to be scared sometimes.  Poor kiddo.  I felt bad for my mom that she had to go in there with her.  I asked her if she'd ever seen that device and she said no, it can be a shock to see it for the first time as I think it was for my mom.

This is what the device looks like... Lily's never looked that calm in there before! That baby must be drugged!  haha


On the bright side, since she was hooked up for an "outing" we stopped at the beach on the way back to our room for some play time!  She played with the water toys for a long while and even stood up on her own for that time.  She also decorated a gingerbread cut out paper.  I love the smile she gave it!

Also good news today the Dr's let her have ice chips! So every hour or two she could have a few spoonfuls, which she enjoyed.  Amazingly for the 3rd day of no food she again did not ask for anything to eat.  It's usually just water she asks for and when I tell her she can't she just says "oh okay mom"

Judy from Child Life also gave Lily a cute quilt! Made and donated by volunteers.  It's purple and pink Lily's favourite colours!

Before bed we skyped with Justin.  Lily wanted to play with her tea set and play food, so Daddy went up to Lily's room at home and got out her tea set and they had a long distance tea party.  Her smile told me that it was definitely the highlight of her day!  She has the best dad!

I guess that wasn't so quick after all...
Here's a few pics of Hannah.. she loves to stick out her tongue and jump!

Sunday, May 26, 2013


Today was a good day!  Yesterday Lily came off of morphine and so she had a few smiles and laughs, but today was awesome! she had tons of smiles all day long! (except of course when dr's came in or nurses had to flush her IV lines.  I give her all her medicines which isn't too much of a problem (she won't let the nurses) she doesn't put up much of a fight with me because I tell her it's either me or the nurse.. Today she had some sparkle back in her smile, which I had missed!

That smile melts my heart!

Our day today consisted mostly of playing together! Well, we all took turns.. We each had some one on one time throughout the day and took turns going to church.  Justin and I went with Hannah while my mom stayed with Lily.  Today she liked playing with Bubbles that one of the nurses gave her, Mr potato head, puzzles and a new fishing game with princess jewels.

So here's an awesome mom moment (not)... I went to the toy room to find something for her to play with and saw a box of play food and tea cups etc.. I thought AWESOME! she LOVES to play kitchen at home she will love this! So I brought it to her and of course she did love it... but as I'm taking the food out I'm like what am I thinking!!!!! She isn't even allowed to eat food and hasn't for 2 days now and I'm putting a bunch of plastic food in front of her!! she grabbed it and started to pretend eat it, except she put it right in her mouth and was bitting it! I had to remind her it's just pretend.   When she was done playing I put it all away including the basket she had put 3 pancakes into, when she saw they were gone she said "Hey!! give me back my food!" and insisted on keeping those pancakes by her side for hours! haha poor girl.   Miraculously she hasn't even asked for food or said she was hungry in 2 days (except 5 min ago after I brushed her teeth she asked for soup and I said"I'm sorry you aren't allowed to have anything to eat" and she says "that's okay" she amazes me.

We got her up and moving a couple times today.  It was like watching her take her first steps all over again.  Shaky and holding on to us for help, I would point to a foot and tell her to move that one and she would walk back and forth between Justin and I.  She only walked about 3 feet back and forth about 6 or 7 times, then I would tell her to bend her knees a couple times.  She had had it after that and was starting to cry and whine so we put her back in bed.  Tomorrow I'm going to have her do it at least 3 times and hopefully we can take another trip to "the beach" to play.

So today her JP tubes have drained significantly less fluid!!!! This is fantastic news!  Yesterday one tube drained 400mls and today it only drained 40!! This is fluid that is collecting around her lungs.  Hopefully it's just a few more days before they can pull the tubes out!! This is what we have been praying for!  Yesterday after I had gone home from the hospital I was just thinking about her drainage and the whole process of getting rid of chylothorax and I just felt like I needed to have more faith.  Don't get me wrong, I have faith but I felt like I wasn't having 100% faith.  I thought to myself I KNOW that she is going to  improve and she's going to do it fast, I don't need to have any doubt about it.  I felt like something clicked in me like I was taking action! haha When I got to the hospital I was talking about it with Justin, he told me he had thought the exact same thing.  It was so great to see that faith take action today!
               I need to post a picture of Hannah! She is 5 months old already and getting so big!

Some cute things Lily said today... "sometimes I don't like Dr's"  "fey you mom, fey you so much!" (lily thanking me for putting a blanket on her) she is so quick to thank everyone for everything and tell you how much she loves you over and over!  Tonight in her prayers she said she was gratefull for nu-nu(her bunny) Dr's, her flowers, her toys, her big bed (we switched her out of the hospital crib) her home, her happy meal toy her aunt rachel gave her haha it was so cute.  I love that after all she has been through she is giving thanks for the Dr's.  Goodnight.

Saturday, May 25, 2013

Post op day 4 may 25

I thought we were off to a good start the morning, she ate some Cheerios and didn't put up huge fights with the nurses. .the the drs on rounds decided that they would start treating lily for chylothorax because she continues to have large amounts of  fluid draining.  So the first step in this treatment will be no food by mouth for about two weeks :(  she will receive all her nutrition by IV.

We took lily to the "beach" today.  The beach is like a large play room with different activities to do.  She went there once before while waiting for surgery, and liked playing Dr. with a big doll they had and she liked painting.  This time When I asked her what she wanted to do when she got there the first thing she said was play dr.  Which kind of surprised me,  I thought she would be sick of dr.s by now!   It broke my heart a little bit, as each time she went to a new activity she was excited, but appeared defeated and would say I'm done now after a minute or two.  She quickly lost Interest in each activity because it was difficult for her to play, as she was in a stroller and only had use of one hand.  She had the most fun playing at the water station.  We fed the creatures tea and gave them baths it was nice to see her smiling.  

Near the end of our stay there Justin went to take the camera back to our room and I was playing a super large version of connect four with her.  I saw her making faces and thought she's going to puke! I frantically looked around to see if there was anything I could grab to put infant of her face but to no avail.  The started to get sick and I just turned her head and tried to catch it.  Gross I know but at that moment I did not even care.  I looked around for someone that could help me (as there are hospital workers in there at all times) but all I could see we're telus volunteers (it was telus day of giving and there were like 20 of them in there, the place was packed, but that is not who I needed to help). Miraculously I remembered the name of the girl working in there at the time and just yelled for her.  Then I had a full on melt down. Allison and another woman came over and helped clean us up enough so we could get going back to our room and they took care of the mess we left.  I guess that was my breaking point today.

Miraculously Lily did not once say she was hungry or ask for something to eat,  and very rarely asked for something to drink.  She spent the rest of the day paying mr. potato head, doing puzzles, watching movies and even attempted standing up for the first time.  Standing didn't work out so well, she was extremely wobbley on her feet and wanted to get back in bed.  I made her do some leg exercises to get her legs moving at least, Lily thought it was a fun game.

Friday, May 24, 2013

Post op day 3 may 24

The mornings seem to always be rough on lily.  It's when the drs do their rounds and the nurses need to do their assessments.   Lots of the drs want to check things out too, so lily gets pretty upset which is always hard to see.

This morning her external pacing wires were taken out.  These are wires that are connected to her heart and then stitched to her tummy, then hooked up to the pacemaker machine.  She hasn't needed them for a few days so that means they can go.  Her morphine will start to be weened today and Labs were sent to check her drained fluid for chylothorax.  During rounds they said it looked like chyle so she will probably start a low fat diet today.   (Labs again came back with only one out of 3 markers so still not chylothorax, but still ALOT of fluid draining from around the lungs)

We were moved out of the intermediate care room today because they are pushing pts out of the PICU I'm not really happy about this because nurse to pt ratio goes up to I think 1:4 vs 1:2.  Lily doesn't require a ton of attention, Justin or I are with her at all times so if she ever needs anything we can take care of that for her.  It breaks my heart being here and seeing other babies in here all alone almost all day! I want to go and cuddle them when they cry and let them know they're not alone.  It's really hard to see.

Some more dogs came to visit today.  Lily gets really excited to see them, but once they bring them up so she can see she usually turns her head and sticks her nose in the air haha.

  Lily got to pick another prize from the treasure chest today for taking her meds well.  All on her own she picked out a tiny stuffed dog to give to Hannah; adorable!  She was with my mom when she did this and When we came back with Hannah she was so excited to give it to her and kept saying "I got this for you Hannah" she was pretty proud of herself:)

Lily was also sent some flowers and a teddy bear from Justin's work.  I thought that was so nice of them.  Lily loved smelling the flowers over and over again.  Love to see that girl smile!

Lily has hardly eaten a thing all day, mostly just juice and water and this evening started vomiting :( hopefully she does better with food tomorrow.  They were going to start her on her new blood thinner warfarin but, she needs to be eating to be on it.  It's hard to see her like this needing all these meds and needles.  She had to take a nasty med today to help get rid of extra fluid, she spit it out the first time and so the nurse and I had to hold her down.  I braced her head and pinched her cheeks in to try and keep it in her mouth as she screamed and spit it out, it was awful I felt so bad for her.  I had talked to her for like 10 min trying to coach her to take it and she could have a yummy treat after to get rid of the taste but nothing worked:(. Poor kiddo. I really hope that's not a med we go home on.

Auntie Rachel and uncle Jesse came to visit her tonight, unfortunately instead of a nice quit visit it was full of horrible medicine attempts, multiple rounds of vomiting and crying:(. Justin and Jesse gave her a preisthood blessing which she sat still for.  overall a really rough end to the emotionally drained me.  I feel like crying myself to sleep.  I hate that most of the time I have to be the one holding her down and forcing meds into her, or restraining her while they give her needles, all the while trying to show none of my feelings so I don't make it worse for her.

Thursday, May 23, 2013

Post op day 2 may 23

Lily was up a lot of the night watching movies with her dad.  When I came in at 6:30 Justin said he had finally just gotten to sleep (sorry babe)  Justin likes to stay the night with her because he says its when he can be her hero, so sweet.   

Lily had a tough start to the day.  They needed to drain chest tubes and do another once over checking lines and flushing IV's.  these tasks do not hurt but just knowing they are touching things around her she sometimes gets very upset.  Lily was trying to ignore them by sleeping I think that she thinks if she is sleeping they won't do anything.  The nurse touched her arm and lily yells out in a mad tone "hey I'm trying to sleep and the dr is touching my arm" I find these comments so cute and entertaining they make me laugh because it is just her being her sassy self.  

Once that was done they told me they were going to need to get a weight, do a chest x-ray and an ECG (my thought was this is going to be beyond brutal). Chest x ray was first and there wasn't too much crying. they could do it bedside so she didn't have to move around a lot.  For the weight they had to lift her out of bed and sit her on a scale which she doesn't like on good days, never mind a day and a half after heart surgery and having multiple tubes and IV's coming out of her and the pain from her Sternum.  She was pretty upset at this point and just wanted a warm blanket and to get to sleep,which she did until the ECG people came.  

  When The ECG techs arrived I said good luck jokingly.  We haven't been able to get an ECG unsedated on Lily in a over a year.   They tried to get the stickers on while she slept but that didn't happen.  She was really upset now, I got Cinderella on to try and distract her, which worked to some extent.  The stickers they use have a really sticky gooey adhesive which pulls a lot at her skin.  They try to use alcohol swabs to take them off more gently however, this prolongs the process and bothers her just as much or more so I told them to just rip them off like band aids.  Lily being the sweetie that she is then repeatedly thanks them, and away they go.

I did Lily's "treasure life" bead story today.  They have a program in hospital where kids can collect beads for every procedure they go through.  I never started it when she was a baby, but I wanted to have her start it this time.   I did the short and sweet version, as it would have been impossible for me to remember exactly how many Times she got IV's, X-rays, blood work, echos, ECGs etc..the OCD part of me wants it to be exact but that just isn't going to happen.  It brought a smile to her face when I brought them to her :)

Lily had to get a poke today, and was able to pick a prize from the treasure chest.  She picked hair baubles, she's such a girly girl!  Afterwards we put them in nu-nu and Rapunzels hair haha she loved it.

Lily's JP tubes have been draining a lot more fluid than normal.  One of our biggest concerns after this surgery is getting chylothorax again.  This was the complication she got after her last surgery.  It is the most common post op complication with the "fontan" (that's the name of the procedure she had). And she is at a higher risk of getting it b/c she had it before.  They did labs on the fluid last night and will do it again tomorrow.  Yesterday's labs came back with one marker of it bit that doesn't confirm it.  As the day progressed the fluid in her one drain was looking cloudy...another sign.  They are closely monitoring her for it and if she has it they can hopefully treat her with just a low fat diet vs the extreme she had last time of no food by mouth for 2 weeks and NG tube feelings for 6 weeks of no fat formula. (Which would be the same treatment this time if diet doesn't work). 

We are praying that if she has it, it's just mild so we don't have a prolonged stay in the hospital.

post op day 1

Post op day one.  May 22

    Not even 24 hours post op and they have moved her from the PICU.  One of her Chest tubes came out as well as one of her IV's and her catheter.  the Dr's say she is doing extremely well.  She is now in an intermediate care room or the step down unit to the PICU.

    She is still on oxygen and her sats are reading high 90's which is a first for her even on oxygen,  last night she was satting at 100% we had to take a picture, who knows if she ever will again in her life.   She is hooked up to an external pace maker which kicked in a few times today.  They did place internal pace maker wires when they did the surgery, but did not put in a generator.  The wires are there so that if down the road she needs them, the operation is quite minor to place the generator.

Her dose of morphine is rather low but she seems to be tolerating her pain well.  I frequently ask her if she is sore and her response is usually no.  Sometimes she points to her chest and gets sad and says that she is sick.  She takes very frequent naps, she will stay awake for about ten mins and then tell me she is sleepy.

Hannah came for two visits which really lifted Lily's spirits.  She sure loves her sister a lot.  She wanted to give her lots of hugs and kisses.  She blew Hannah about one hundred kisses.  Grandma and Hannah have been spending lots of time together so that Justin and I can tend to lily.   I feel bad being away from Hannah so much even though she won't remember.  Hannah is a very non cuddly baby which doesn't help how I feel.

Lily was able to start eating solids and has tolerated all her food well.  She is taking lots of sips of apple juice and water and frequently asks for ice cubes to eat.

I feel so greatful and lucky that she is doing so well, and pray that she will continue to make positive progress.

Wednesday, May 22, 2013

Lily is Being So Brave

Grateful doesn't even begin to express how I feel right now.  I feel like the weight of the world has been lifted off of my shoulders.  There were so many people thinking of us and praying for all of us and your prayers were heard and felt.  

Yesterday was a very long day.  We had to be at the hospital at 11 and all she had to eat was 1.5 Popsicles and a glass of juice.  Her surgery time was supposed to be at 1 o'clock so all liquids were stopped at 10am.  She didn't go into surgery until 4 and only once asked for something to eat.  I thought she was pretty understanding when I told her why she still couldn't have anything to eat, and went back to playing contently in the waiting room.  Or just took a nap.

I told Justin I would be the one taking her into the OR, I find it difficult to do but the one time I didn't I cried just as much but on top of it felt guilty for not taking her as I felt it was my duty.  This time it was like a déjà vu, being wheeled on the bed carrying her to the OR getting suited up and carrying her in, it felt like the last time I did this was just days before, not years.  They had to start an IV which she was really not happy about even after taking meds to make her drowsy...they never seem to work well on her.  I started my meltdown there in the OR, as per usual, put her on the table, and gave her a big kiss and told her how much I loved her and to be brave.

Amazingly after a few minutes I really started to feel peace which I had been praying for for weeks and I stayed composed until the surgeon came out to talk to us.  He reported everything had gone well and she would be out shortly.  Then the tears of relief came flowing.  About 30 minutes later she came rolling by on her way into the PICU, they slowed down so I could give her a kiss, then on cue, more tears started flowing.  The PICU was closed for entry for about 30 min so we waited to go in and see her.  Naturally it felt like hours.  

I was surprised how good she looked and how warm she was!  Last time she was so swollen in her face and freezing cold.  Within the hour she was already waking up, as her sedation is also much lower this time because she came out of the operating room without breathing tubes, as is optimal for this surgery.   

She was very much herself when she would wake, but a slow drugged version of herself.  Her first words were "I hoe-nee" which is how she says I'm hungry, followed by asking me to please get her apple juice.  It was breaking my heart that we couldn't give her anything, she had to wait 4 hours before they could start giving her ice chips.  We swabbed her mouth with a wet sponge pop and she sucked every spec of water out of it and then she gave us a little smile, which melted my heart.  Justin told her to go back to sleep and when she woke up she could have something to drink, she turned her head and started her fake snoring sounds, we couldn't help but laugh at her when she did that!   I went back to the Ronald McDonald house and Justin stayed with her, I came back to relieve him at 6 this morning.

This morning when I came in she caressed my cheek and gave me a kiss.  She is such a sweet girl with such a tender heart.  So brave.

I love being her mom.  I am so happy to rush to her side at every movement or sound that she makes to see what she needs.  I love to hear her call for me, and being there for her.  This morning when I came in I gave her kisses and she made the effort to caress my cheek with her hand and when I told her that I loved her she said, really? In a questioning voice like she always does, and I say of course! and she smiles and says, "Oh, Thank You".  Such a sweetie. I can't get over how well she is handling everything! She listens to what we say and seems to understand and accept the explanations we give her.  

They just did some rounds and in the middle of them Lily says "see mom I'm brave." So precious .  They were just talking, but she was not putting up a fuss that they were there like she normally would. I couldn't be prouder of how well she is taking all of this, clearly prayers are being heard and answered!

Monday, May 20, 2013

Roller coaster of emotions...

I love roller coasters but this is one ride I'm ready to get off.   We have been in Edmonton for over a week now.  Before we came up here,  I was hoping to be coming home tomorrow.  Tuesday is now Lily's surgery date.  They bumped us last from Monday, to Wednesday, and then to Friday.  I'm mentally, emotionally and physically exhausted.  It is so frustrating and upsetting to have this kind of surgery be bumped over and over again.  In preparing for Lily's surgeries I go through a roller coaster of emotions to mentally prepare myself.  First I'm mostly scared.  Scared for her well being.  I feel sorry for her that she has to endure this challenge and she doesn't even know what's coming. I worry that she'll be scared when she wakes up and in pain.  There is always a part of me that fears the absolute worst outcome, which causes me to wonder if the day prior will be my last day spent with my sweet angel.  Its an awful thing to think, but I think anyone in our position with a child undergoing a major surgery like this can't help but think occasionally.  I try not to dwell on those feelings and think of something else.  I try and just savour every moment spent with her to keep my mind off the upcoming trial.  Then, when the surgery is bumped I am disappointed we have to keep waiting,  there's a part of me that is relieved she doesn't have to go through it; although I KNOW it is inevitable. It's absolutely time for her to have this surgery and I know she needs this to sustain her.  It is hard tomentally prepare oneself and then get another date for 2 days later and have to go through it all over again. Don't forget the 3 surgical soap baths you have to give her between the dates and the fasting all morning and afternoon just to be turned away.  I hope it happens tomorrow like they say, because I just need it to be over so we can return to our normal lives again!  On the bright side of things, Justin and I have been able to spend lots of quality time with Lily, and she has had soo much fun being at the Ronald McDonald house.  But even she is asking to go home now.   Even though all of this sucks,  I am beyond grateful; grateful for such a beautiful and loving daughter, and grateful that we live in a time and place that there is treatment available for Lily.  I look around at some of the other people you see in the hospitals or at the Ronald mcdonald house and i know how lucky I am.  We are lucky that Lily can live such a  "normal" life and she can express her love for me and has control of her body.  I am truly grateful for her in my life.

Sunday, May 19, 2013

Still Waiting

Well, Lily's Surgery has been pushed back again. That is five time so far. This last week she was supposed to have it on Monday, then Wednesday, then Friday, now because of the long weekend it isn't scheduled again until Tuesday afternoon.

 We have noticed that Lily has been needing her surgery as she is getting more tired easily now and taking naps again at random times. Here are a few pics of the places she has fallen asleep. 
One day Lily was playing in the basement and fell asleep while driving, good thing this car stops when the driver stops! 

This day, she planned her own nap, well at least she planned on her dolls having a nap and decided to join them on the floor of her room. 

Wednesday, May 15, 2013

April and May

I preparation for Lily's third and last surgery, we have had to keep Lily isolated so she doesn't get sick. She was supposed to have her surgery in March, but when we went up to Edmonton the surgeon didn't like the sound of her cough and wouldn't proceed and delayed the surgery until April, then her date in April was bumped due to an emergency surgery for a new born baby. Needless to say, we had to make sure she didn't get sick so her surgery wouldn't get bumped again. So we had to keep lily entertained in the house as going to the park could be full of germs. Once the weather was nice enough, we were able to take Lily for walks. We enjoyed taking her down to the river in her wagon so she could through rocks which she loved.
Of course we brought Hannah too, so here is her glamour shot, with milk mouth and all
The other thing we do to entertain Lily, is let her do her nails. She loves to be like her mom and be a princess with beautiful nails. Leah decided to let Lily try and paint her own nails. This took a lot of concentration but it ended with beautiful results.

Lily also loves to play with her dolls. Here she is changing the baby "Emma's" diaper and burping it. She loves to do what Mommy does with Hannah.

Lily also likes to play doctor. We bought her this doctor set so we could practise with her what the doctors do when she goes so that she will realize that the check ups don't hurt and she won't put up such a fuss. Here, she is practising on Hannah, and it looks like she needs some more practise as I am pretty sure that is not where Hannah's heart is.
Lily has a wonderful imagination as well. She lately has a necklace full of pixy dust which she remembers to put on when she takes off her clothes and changes into her pyjamas. If she does forget it, she has to go to her room, find the last shirt she was wearing at the time and pull it off that shirt and put it on. The great thing about imaginary necklaces of pixy dust, is that if she does by chance forget to put it on then she changes clothes and we have already left to go somewhere, it can magically and conveniently be pulled out of Daddy's pocket at any moment because I luckily remembered it when Lily hasn't. 

She also loves to play with her stuffed animals and dolls and her food. She loves to feed them, and set the table to have them all eat together.  One day she decided that her little table in her room was not large enough to hold them all, so she needed a bigger table. At least the treadmill is getting used for something.

Leah has been good at coming up with things to do with Lily to keep her entertained, by building with blocks, baking and crafts.  
I also have to pose this next picture of Lily. One day as we were dancing around the kitchen, I noticed that Lily kept lifting up her skirt. It perplexed me for a while, and then I noticed the next day or so while watching Cinderella, that when she dances with the prince she holds her dress with one hand. So I had to get a picture of Lily doing it while she was dancing with me. She is such a princess.

For Mother's Day, all Leah wanted was some nice photos with her and her daughters. So we went out and took some pictures on Saturday. We haven't picked out Leah's favourites, but here are some nice ones:

I had to get a few too:
So Lily's Surgery was to happen on Monday, just after Mother's Day. So in Edmonton at the Ronald McDonald House, we woke up, gave Lily her special bath, gave her the only breakfast we were allowed to, (Popsicles and Apple Juice) the breakfast of champions...

...only to get a phone call a few minutes after that her surgery had been bumped again until Wednesday.  Lily didn't mind as this gave her some more time to play at the house. lily loves it here at the RMHouse.  There are so many toys and doll houses etc to play with.

We have also had some great help with my Mom and Leah's Mom coming to help out as we go through this surgery. Thanks Mom's we appreciate you!
I have to add the fact that we went to the Olive Garden last night for dinner. It was nice, but what everyone thought was funny was that I forgot to change into my shoes from the Ronald McDonald house and noticed when we got there I was still wearing my old man slippers. So Leah wanted me to shuffle like an old man with my old man slippers.
This next picture is at the restaurant, I post is because you can see how good Lily is getting at drawing. Look at the activity sheet she was drawing on at the table, you can see her picture she drew of Mickey Mouse. It has eyes, a mouth, and a smile, and two ears on the top. She is really good at colouring and developing her talents.