November

Hi everyone... things are still going well. I thought I would share a few pictures with you. Monique is still loving hockey! I am so glad because I love bringing her and watching her on the ice.

Christmas is coming... she has a very long list as do most children. I just hope we are all healthy and happy.

October

Hi everyone,

Monique check-up went well. We are hoping to get another few years out of her last repair. keeping my fingers crossed.

School is going well and she is learning well. She loves her new glasses.

Monique is an active little girl. She has many activities which keep her going. She does Jazz dancing, girl's hockey and swimming. I want her to be involved with as much as she can now in case she cannot later in life. I want her to have all the experiences she needs in order to heal after the next surgery; to give her something to looks forward to after she has healed.

Another school year has begun

Hi everyone... I have not posted lately because we have been so busy. We camped all summer. Monique really enjoyed the outdoors! She started the second grade this year. She is getting so big. She also got glasses. Wait til you see... they are adorable. She looks so distinguished.
Monique has a cardio check-up at the end of September. I am really hoping it goes well. Keeping my fingers crossed.

Tea Party

What an amazing event! Monique had so much fun. She looked like a little Snow White. The events consisted of tea, cupcakes, singing, magic show, ballerinas, hip hop dancers and a belly dancer. Then there were arts and crafts and a ballon guy making balloon animals for the kids. Monique was the centre of attention... she will never forget the event I am sure of it.

The highlight of the day was seeing her face when she saw the Disney Princesses. Her face froze. Her feet froze... she squeezed my hand tight... "mom... look!" Too precious! Tink was her favourite!

Here are a few pictures...

Easter

Here come Peter Cottontail...

So Easter falls on my birthday for the 1st time this year. I think it's kinda cool.

Monique has been fabulous!! She is super excited for the princess tea party the Children's wish foundation is organizing as a fundraiser. She is super excited to wear her Snow White costume and is a beauty in it!! As you can see!

She wants a pink iPod for Easter... she is growing up fast and wants all the new 'cool' toys that come along with knowing they exist i guess...

Happy Easter to all!

Update!

Hey everyone!
Monique went for a check-up this week. Her cardiologist said that he was happy with what he saw on echo however her aortic valve is leaking a little. He said that it was because they had to tighten her valve so much to repair it, that it made the opening smaller, therefore there is more pressure going through that smaller space.

There is no way to predict how long the repair will last and she must be watched for signs of failure always just in case it lets go. It could be months or years.

Monique got her Sleeping beauty dress for the Princess Tea party. She is going to a photo shoot in her dress for the program. She is excited and the dress is beautiful and fits her perfectly!

Princess for a day

Hi everyone... I would like to take this opportunity to thank you all for following my blog. It warms my heart when you can stop me and mention it, to know that so many people care and are rooting for Monique is amazing.

Monique is back in school full time. She has also started at a new babysitters. She is doing amazing.

Monique has been invited to be an honorary Princess at the 1st annual Princess Tea Party at a local hotel on April 18th. This is a fundraiser for Children's Wish. She will be presented as a wish child at the event. I have also been invited to speak as a wish parent. It will be an amazing experience for all of us. :)

School

Monique started school this week. She went for a few hours yesterday morning. She would not let me leave though! Which was so completely OK. She took the bus this morning and went to school until noon all by herself. She was excited and I could tell a little nervous too. I think she did fine though. When I picked her up she was happy so... she is tired though. I am planning on sending her for a full day tomorrow and see how she copes. I am hoping it will be fine. I have to go back to work.

Monique's incision is all healed! Looks beautiful. She is so proud. She only has pain when she hick-ups or sneezes. She is hesitant to cough too. We go in for her post-op check-up on March 15th.

Healing

The healing process is well on it's way. Monique's incision stitch tape is all off. Her scar is a little raised right now but it is new (well new old scar) it will go down. She is having a little trouble with the top stitch. It has not dissolved yet and surrounded by red so... I am bringing her in to see our family physician tomorrow. She was a little nervous going to bed about the whole thing but I think she will do great.

Tomorrow is my mother's birthday. We are bringing her out for supper. Monique was slightly excited to be going out in public. She looked at me with a puzzled look on her face and was all like... it's ok? but i can't... Poor thing.

As I was talking to mom tonight. I realized I had completely forgotten Monique's other grandmother's birthday (Mique's father's mother). I have never forgotten before, in the whole 11 years I have known her. I feel super bad, so I invited her too.

The plan is to bring Mique to school Friday afternoon for their Valentine's day party. I hope all will be ok. I am staying with her though. We went to pick up work yesterday at school and she was very shy, didn't talk much. She did show her incision scar to all her friends though. Right up with the shirt. Sorry to all those parents who would rather not their children to have seen that. She is proud of her battle scar. It is the reason she is alive.

Energy

Just a little note to let you all know that Monique is still doing fantastic. One of her stitch tape strips fell off and she was slightly excited! Her incision looks fantastic, a little raised but not dark at all. I did end up taking her to the pediatrician to get checked out. He was pleased and said that all was still ok.

I talked to her about wishes the other day. We talked about Disney, the Princesses, airplanes. She said her number one wish was to have wings. She wants wings! She wants to be able to fly. That wish scares me and amazes me all in one bundle.

She is getting her energy back although she is stil my little cuddle bunny. I love it! I am hoping to get her caught up on schoolwork this week. She will be starting school on the 15th. The day after Valentine's day.

A note to you all that this week is CHD awareness week. All week. Feb. 14th is not only Valentine's day but it is also CHD awareness day. This birth defect is the #1 birth defect that our children are born with yet it is one of the least funded research in our country. How is that? Not enough people are aware that this problem exists. Please, be aware.

Our heart warriors are heros!

Pale

Well... slow day number one. I think Monique has been overdoing it. Today, after 2 days of no naps, she was pale all day, only nibbled for breakfast and lunch, and slept for two hours this afternoon. I am now going to make her have a little nap after lunch so she does not overdo it again. Hopefully she will have a better day tomorrow. Not that today was a bad day.

Much cuddles

Monique is still doing amazing! Her incision is healing well and will be only a scar soon. A reminder of another milestone... and another little miracle.

For right now... I am soaking up the cuddles. Monique wants to cuddle all day long and must be entertained. She has changed a little bit.. I wonder how much she will change back. She randomly tells me now that she loves me which I adore. I don't know how long the cuddles will ast so I am soaking them all in... I will never refuse cuddles! (Ok... some housework has te be done!)

I figure I will bring her into school for half a day next friday and she will start half days for a few days starting Feb. 15th.. the day after Valentine's day. I showed her the day she will be going back to school the day after where the heart is on the calendar. She is excited. I am petrified!!

Now, I have to tell myself she will be ok. She will not have a big bump that will shatter her new forming sternum. Life cannot stop.

I have to go back to work ... I am thouroughly enjoying being a mom and I have very much enjoyed being nothing but a mom... I have never been that. I have always either been in school or worked along with being a mom. Even when Monique was an infant, when others have maternity leave, I was in University. I have learned so much about myself and about Monique these past few weeks.

HOME!

We were able to play in the play room yesterday morning to pass the time while we waited for Moniques travel meds. While we were there Monique received "Josh", a golden retriever teddy from students of the PEI vet college. He came with a story book about his journey with an operation. Monique loves it. Here is a link to the website http://www.joshandfriends.com/


Once we had the meds and Monique took Tylenol for the ride we headed home. Monique slept for half the 3-hour car ride. We made it home. YAY! It felt so good to walk through that door. We were all able to relax a little bit. We had a few visitors bring the balloons and toys they brought home for us on Sunday.

Now we stay home for 2 weeks until Monique heals a litte more and gradually introduce her to life after that. I am so afraid of sending her back to school!

Sunday

Hi everyone!

We are heading home tomorrow!! Yay! I.V. came out this afternoon. No more tubes, no more bandaids!

Monique's hospital journey will be over tomorrow but her healing has just begun. I think it will be a challenge over the next few weeks to get her to slow down and heal. For those of you who know her she is always flat out! She is 6. She does not realize the seriousness and fragility of her condition.

Keep praying... keep reading... I will keep posting! Thank you to all who have done so so far.

Oh... Jon made it up finally last night! YAY... I think I got the biggest, best hug ever! He is a sight for sore eyes. Nobody quite understands or supports me like he does. ox

I will let you know tomorrow night how our adventure home was.

Saturday morning

Wow... big sleeps last night. Monique only woke up at 8:15am this morning. She says her belly hurts but I think this morning it may be the incision that hurts more. She says she doesn't want to bowl and already had a drink of water... I am keeping my fingers crossed.

I went to the grocery store last night and picked her up some fruit loops... he he he ... she is excited to have them for breakfast. Although she is really calm this morning. She doesn't want to move a whole lot. (That is the reason why I think her incision is sore.)

I dreamt last night that they discharged Monique today. I had a panic attack in my dream and woke up with a nasty headache and I am sure my heart rate was way above what it should be.

Friday night

Hi ... Monique had a good day today once she stopped throwing up. We had visitors who brought lots of treats which made the day pass fast for Monique.

I have to say a special thank you to all the MacDonald Chisolm gang! Monique very much loved her surprises.

Monique had a good nap this afternoon... from 3:30 to 5:30!! All the afternoon excitement made her quite tired... me too, I slept as well as her.

Jon was not able to make it up today... hopefully tomorrow. I need him, more than I think he realizes it. I had a tired and feeling sick day today. Quite emotional too. I am afraid to go home as well. everything Monique could possibly need is here and accessible quickly. I know they won't send her home until she is ready but still...

Anyhow... goodnight. Let's pray for a puke-free morning!!

ox Faith

Friday morning

Good morning everyone.

Well... Monique is throwing up again this morning. This time she has not gotten morphine in 24 hours so it cannot be that. Something is making her sick... but only in the morning. Hopefully it will stop. It can't feel good. Hopefully it will only be the one time today like it was yesterday. At least yesterday she had somthing to throw up. This morning she had mostly dry heaves. Ouch!

It is giving a snow storm. II really hope Jon can still make it up. I miss him so much. He has been my rock. He is truly an amazing man. I am very lucky to have him. I count my blessings every day. He had to go fishing. There are still bills to be paid. I can't wait. I am really looking forward to him being here again.

Monique is excited about her little cousin and friend Kennedy coming to visit today. Visitors make her quite tired though. I hope they understand.

What a rollercoaster it has been. I have tried to be as strong as I can for Monique. I didn't miss a beat. I hate to leave her side. I need her as much as she needs me. As tough as it may be sometimes, I am so glad I have her as my daughter. Times like these just make that so much more obvious.

I love you babe... forever and for always.
ox... let's pray for another good day.

Thursday

Monique had a super night. She slept very well. She was super silly at 4am however but it was nice to have that quiet time alone with her.

She got up for the day at 7am. Awesome. But... she didn't feel the greatest. She threw up soon after getting her morning meds. No more morphine allowed. She will be getting Tylenol and Toradol and that is all. Hopefully she will not get sick again.

She went to the playroom this morning and brought back some paints to her room. She painted for a while as she ate her breakfast of dry cheerios. Her lungs are clear. If all keeps going well we may be going home as early as Monday! Imagine! I would still be up in ICU!

She is happy right now. What a sweetheart. She had more chicken soup for her lunch (she had 2 bowls for her supper last night) and is now having a lime popsicle. We are going to settle in for a nap I think possibly and then off to the playroom again.

Until next time!
ox... Faith

Update... Wednesday night

Monique is my hero.

She is an amazing little girl! She got out of surgery yesterday at 1:17pm. Her surgery which was supposed to last 5-6 hours and be an aortic valve replacement as well as a conduit replacement ended up being an aortic valve repair and a stretched conduit. Her surgeon went in with every intention to replace her aortic valve with a mechanical valve... he was able to repair hers!! Wow... no blood thinners... no ticking sound... amazing. This could buy us anywheres to a few years to 10 years before she will need a mechanical valve and thinners. Her surgery lasted 4 hours. WOW! A modern day miracle.

I went in to see her when I was able around 2pm and she wanted her breathing tube out... so... at 2:20pm it came out. Wow... she was very agitated when she came out of surgery. Jumpy... and the anesthesia made her sick. Once they upped her morphine and gave her a good dose of gravol last night she settled quite well and slept most of the night.

We had a few laughs... when she would wake up she was pretty silly. She told me once I even had a bad hairdo! I fell asleep around 5am at her bedside in the ICU and she got mad and told me I was not allowed to sleep.

This morning, her drainage tube came out as did both her central lines, one in her neck and one in her groin and her arterial line for bloodwork came out too. She was so brave and kept saying how much she just wanted a popsicle and to have her own room. At 11:30am she was upstairs and in her own room, not even 24 hours after her surgery was done.

This afternoon we had a great nap. We all needed it. It was quiet and we were able to relax a little bit.

She has walked to the bathroom twice. She is smiling... her smile is all I need. She just got some morphine as she was sore... so hopefully she will have a good night.

Thank you all so much for your prayers. God truly is great.

afternoon!!

Beautiful rainy day. Just got an update and her surgeon was able to repair her Aortic valve! The amazing power of prayer! Modern day miracle! no permanent blood thinners, no ticking sound... I am in shock!

First hurdle has been overcome. Wow... wow... wow!

morning...

Well... it is 10am... surgery day. Monique went in this morning as happy as can be. I brought her to Build-a-bear last night after supper and she was able to make a new bear which she named Suzy. This morning she has an OR a nurse who's name was Sue. She was more than thrilled. We got an update not too long ago and Monique never even she a tear. She was so brave. What a little trooper. She is amazing. She gave us hugs and walked right into the OR holding Sue's hand. ox
Will update again once she is out of surgery.

Surgery

Monique had all her pre-op appointments on Monday. Her surgeon has decided that he will replace her conduit with a larger one while he is putting in her new Aortic valve. YAY! one operation instead of two.
Her valve will be a carbon valve. We will hear her heart (valve) tick as it opens and closes. The blood thinners she will need to be on will not permit her to bear children but there are advances every day and I will stay hopefull for the future. The important thing right now is to keep her alive and as well as we can.

Tonight

. . . sitting here watching the fire go out.

Thinking things, why do I think?

Where is the off button?

Where is the pause button?

I was crying? When did I start?

Dear God,
Please, don't take my daughter yet. Hold her safe during her surgery. Let her
have sweet, sweet dreams and then give her back. Please, give me strength to walk,
breathe, think, give me patience and understanding and serenity. Please, hold our
hands, walk with us.
Love, Faith

Countdown

The countdown is on. Day by day.
January 18th we go in for pre-op at 9am.
January 26th we go in for surgery at 8am.

I don't even know what to say or how to tell you how I feel today. I think I just want to sleep. I want to sleep until it is all over and let it all be a dream.