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!

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.

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. 

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.

This is the play house, you can see how excited she is to go inside.

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.

Hannah Joy Gibb

Our greatest Christmas present came a little early. Well...early in the sense that it was before Christmas, but late if you ask Leah. She was born 4 days over due on December 19, 2012.  We are so excited she has come in time for us to celebrate Christmas with her and Lily.  Here she is... 

Ms. Hannah Joy Gibb

 When we got home and put Lily in her jammies, she was so happy that she matched baby Hannah and had the same Jammies as Hannah. When I was putting Lily to bed and we were saying our prayers before bed, she said the cutest things which melted my heart. I will help her say her prayers by saying, Dear Heavenly Father, we are grateful and thank Thee for... then I let Lily say what is on her mind.  Last night she said the following:

1. That her Nu-Nu was washed (he little bunny blanket - she is always so grateful whenever we wash her bed sheets, clothes, or her Nu-Nu)
2. That Baby Hannah came home out of Mommy's Tummy
3. That she matched baby Hannah (her jammies - it took me a second to understand what she meant at first when she said that one.

So a cute story on how we decided to name Hannah.  A few months ago, we asked Lily what we should name the baby, and without skipping a beat she said "baby Hannah".  Ever since then, even though we were not sure on a name, Lily would continually refer to the baby in mommy's tummy as Baby Hannah. One day when we asked again what we should name her, to see if she would still say Hannah, Lily blurted out, "Hannah, come home, she my friend, yeah!" and began clapping. How could we not call the new baby Hannah, as Lily already seamed to know this baby as Hannah and was excited to have her as her friend.

When we first drove into the Garage while coming home from the hospital with Hannah, Lily was right there at the house door waiting for us. She bent over with her hands on her knees peaking into the car seat at Hannah and says, "Baby Hannah? You Home, oh...come" and grabbed the car seat and pulled it through the door while saying. "Hannah, I gotch you"

Although Lily is being a bit jealous whenever I hold her Hannah, she still loves her little sister so much and has been so excited for Hannah to come out of mommy's tummy and to come home.

Here is a glamour shot of Lily, just because she brings so much joy to our lives. The other day, I curled her hair one saturday morning for fun and then took some pictures of her dancing around our bedroom with her Lamby.

Merry Christmas to All. May you have a wonderful time with those you love.

Family Pictures

Leah really wanted some new family pictures, so we went out one sunday and had my sister take a few shots. These are my two favourites.