Monique's Heart

CHD awareness month - February

2012-02-01T11:07:00.000-08:00

Hey all!

I am happy to announce that out trip along with MANY magical activities are planned and booked for our week at the Wonderful place that is Disney. Monique is VERY excited, as we all are very much looking forward to some fun!

February is CHD awareness month. Before Monique was born I had not a clue what CHD was, I had never seen that acronym in my life. So many people have no idea this condition even exists! Image all the wonderful things that could be done for our children if only more people knew about our children who are born with broken hearts. Even though it is the #1 killer of infants why is it that this condition is not more known, publicized, researched.

When our kids are sick, the flu, a cold... it is NOT just another common illness.
When our kids go to the dentist... it's NOT just a check-up.

:) ...

Welcome 2012

2012-01-14T11:18:00.000-08:00

It has been a while since I last posted... most people probably have stopped looking for updates. No news is good news right. Many things have been happening but I didn't feel the need to vent online. A new year means a new beginning and a new outlook on life. I have learned many lessons in 2011.

Life is too short to live for anyone but yourself, your children and your family.
Don't sweat the small stuff.
If your house is a mess it's ok... kids are having fun!
Stand up for what you believe in, make sure you are heard the way you want to be.
Smile.
Love.
Laugh.
Give and receive all the hugs and kisses you can.
Say "I love you" to all the people you love, including yourself.
Don't be embarrassed by who you are or choices you make.

2012 will also bring many new things to the table I am sure.

Monique's wish will be granted this year. We are planning it right now and our week is completely booked! This wish means so much to me. Monique is being granted a wish for all her rough times past and future. But in a way, this wish is a dream come true for me too. I have been there, watching without being able to take any pain away or make any procedure easier.

Watching her experience the joys of a magical place such as Disney will be the highlight of my life. There is nothing more in this world that I want more than for Monique to live life to the fullest without having to worry about her medical condition tying her down. To many, she looks "normal"... and I am sure there are a few people who do not understand. That is ok. I can accept that because they do not see the times when she is not "normal". These times are not for everyone to see. I will proudly post pictures of the times when her face is full of joy, not the times when they are full of pain and fear. These are private times.

If there were any way possible for her not to qualify for this wish that would be ultimate. But that is not the case. So we will take this opportunity to celebrate Monique and her life together as a family so we can look back at them when our lives are not all that much fun.

ox... Faith

busy... questions...

2011-05-18T04:55:00.000-07:00

The school year is winding down again. I regret to announce that the planning didn't fall into place for us to go on Monique's wish trip this March break but she is looking forward to going very soon. I will make sure to let you know how everything turns out.

There has been a few changes in life lately which are a little difficult to absorb and explain. Monique now attends the school where I teach. I find this much easier as I can see for myself how her daily routine is going and how she is feeling.

Our last appointment at the Heart centre was o.k. The news we receive is never 100% positive but always optimistic. The measurements for Monique's aorta seem a little large and concerning. Her cardiologist wants an MRI done in the fall in order to get a better look. She had MANY questions this last visit. She watch her echo and asked what all the different parts and sounds were. When she met with her cardiologist he assured her that she should not worry about her heart. She said she did sometimes. She was in the hospital twice this past winter with the flu and chest pains. We spent March break in the hospital.

What will next year bring for Monique? I am unsure! I don't know. I wish I did. I wish I could tell her she never has to go through so much pain again. But I can't. As a mother it tears me apart. I feel as if I did something wrong to cause her to have to live this life. She does not know ay other life. But I know the difference. This is not the life you want your children to have. Parents who do not have sick children like we do say they understand but, they don't. I can appreciate them trying to imagine what it would be like. But nobody understands quite like other CHD parents.

PLANNING!!

2011-01-11T07:31:00.000-08:00

Hi everyone...

No news is good news right? It has been a while so i thought I would post a little update. Christmas was fabulous as was New Years. We spent it surrounded by friends and family which we love. It was wonderful!

Monique is doing great. She is growing and is now SUPER excited for her wish trip to Disney. She talks about it ALL the time now. Her mère mère got her the barbie glamour jet plane for Christmas and she has gotten over her fear of getting on an airplane. Now it's all she talks about.

Before I continue planning however, I have to sit and wait for her passport to arrive. I wasn't pressed for time with her passport because she didn't want to go yet. But since she has gotten over her fear of getting on a plane she wants to go March break. I am hoping it is not too late to plan once I get her passport. It will be a shame if we cannot go because of that technicality! So for now I am researching all the fun stuff we will do.

Monique wants to see a Cirque du Soleil show, meet princesses, see animals, see Cinderella's castle, Minnie and Mickey, Buzz Lightyear... (she loves the Toy Story 3 movie!!)... but the big things are the princesses. She loves them... especially Rapunzel and Tink! I cannot wait to see her eyes looking at all the magical things there. - I am excited too, I have always wanted to go to Disney. But this trip is about her and what she wants to do... so, maybe someday I will go as an adult trip and do all of the adult fun things there too!

November

2010-11-16T06:22:00.000-08:00

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

2010-10-13T09:11:00.000-07:00

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

2010-09-19T07:44:00.001-07:00

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

2010-04-23T14:58:00.000-07:00

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

2010-03-28T17:42:00.001-07:00

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!

2010-03-17T18:18:00.000-07:00

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

2010-02-23T15:54:00.001-08:00

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

2010-02-16T09:40:00.000-08:00

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

2010-02-09T17:45:00.000-08:00

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

2010-02-07T17:36:00.000-08:00

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

2010-02-04T18:10:00.000-08:00

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

2010-02-03T17:55:00.000-08:00

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!

2010-02-02T04:48:00.000-08:00

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

2010-01-31T11:54:00.000-08:00

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

2010-01-30T04:37:00.000-08:00

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

2010-01-29T18:31:00.000-08:00

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

2010-01-29T03:07:00.000-08:00

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

2010-01-28T09:23:00.000-08:00

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

2010-01-27T15:29:00.000-08:00

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!!

2010-01-26T07:42:00.000-08:00

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...

2010-01-26T06:07:00.000-08:00

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

2010-01-20T06:12:00.000-08:00

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

2010-01-14T18:57:00.000-08:00

. . . 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

2010-01-08T09:35:00.000-08:00

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.

Christmas

2009-12-26T17:12:00.000-08:00

Christmas 2009 is over... the gifts are all opened and the mess is almost all cleaned up. Drums are already dented... she loves them and wants to "rock it" all the time! (her words exactly) Monique had a wonderful time. She adores having family around her. Last night while I was snuggling her into bed, she asked is we could have a party tomorrow night, and the next night and then again.

What a beautiful girl... what a beautiful spirit she has in her little heart. We are December 26th.. boxing day... one month exactly from today, Monique will be in intensive care. Hopefully everything will have gone without complication.

This Christmas was very hard. I tried to smile and laugh with the rest. But I felt like crying. I feel like crying. I wish I could bottle all the magic of Christmas and bring it with us into the hospital. I would put it in an empty sprinkles bottle and shake it all over her before and after surgery.

ox... Dear Santa... if you have any magic left, could you please mail it to me

love Faith

Mom, what does it mean?

2009-12-19T18:16:00.000-08:00

Well. Monique asked me the inevitable question this morning... "Mom, what does it mean... they are going to fix my heart."
What do I say? I completely went numb. This is how the conversation went:
Um, Um... it means they are going to open the zipper where your scar is and fix it so you can run again.
ok.. are they going to cut me?
I don't know... I am not your doctor.
Will it hurt (while her lip is shaking)
A little yes... but like a blood test, it hurts for a little and then it gets better.
ok (with an extremely pensive look on her face)

wow... a heavy morning
Half hour later she showed up in the kitchen in her panties doing a hoola dance! silly girl. She is going to be quite a little personality!

Save the date

2009-12-15T11:55:00.000-08:00

Monique's surgery will be January 26th and her pre-op will be January 18th 2010. I desperately hope that the pre-op doesn't scare her too much for what will be to come. Please pray that her symptoms do not worsten until then.

I cannot wait until she can run and play as she wants without worrying it is too much. I can't wait to let her be active again.

SNOW!

2009-12-09T13:31:00.000-08:00

I have never seen such excitement for snow. Monique announced that Santa was coming now that there was snow... ha ha ha. When I showed her how many more days before he came it was too funny. She asked why it was snowing then. I replied that the ground had to get ready for Santa too! It was decorating itself like we decorate inside.

Monique was exausted when she got home from school today. She cuddled up on the couch and was falling alseep. She said she was going to have a nap. I told her she should go in her bed. She agreed and went, got snuggled in all by herself and slept for about 45 minutes. Now, for those of you who know Monique, that is completely not in her "normal" behaviour. Poor babe. I think it is time to start picking her up early from school if she is this tired when she gets home. No need to tire her out more then needed.

Please keep praying that her condition does not worsten before her surgery. ox

Gingerbread house...

2009-12-05T17:58:00.000-08:00

My brother came over last night and helped us make a gingerbread house... :)
We had lots of fun.

Surgery

2009-12-04T04:05:00.000-08:00

I heard from Monique's cardiologist yesterday morning. Monique's surgery is booked for early January and she is on the cancellation list in the mean time to try and get her in a little earlier.

She will have to suffer another month. Every morning, she wakes up and the first thing I hear is ... Mom, I don't feel good. When she gets home from school I hear... Mom, I have a headache. Monique is not one to complain when she is sick. She is a complete trooper so I know that when she does say something she usually really means it.

So we have to sit and wait... hopefully she won't get any more symptomatic then she is.

sitting by the phone...

2009-12-02T07:53:00.000-08:00

I am sitting by the phone wondering when it will ring. I have a huge lump in my throat and a hole in my stomach. Monique will need surgery earlier then we thought. With her decreased activity tolerance, her headaches and her general "not feeling well" her cardiologist has decided that it is time to intervene.
As I sit here and write this blog surgeons are discussing my beautiful baby. They are discussing what should be done and when it should be done. Monique's cardiologist told us it could be as soon as next week.
I am walking around in circles. It takes everything not to cry. My heart stops every time the phone rings. I say hello and wait for a voice.
I pray that everything will be ok. There will be no complications. I will bring Monique home after surgery better than ever. Energetic, full of life, ready to run.
I cannot think of anything else. I cannot imagine anything else. I cannot dream of anything else. I cannot drink anything else. I cannot eat anything else. All that I am right now is Monique.
I am Monique and her heart.
I am sitting, with my whole heart, by the phone... waiting for it to ring.

... so the phone didn't ring... but I got an email. Monique's surgeon is not available until next week. I will not know more until he gets back.
I am afraid... I am afraid that the longer Monique has to wait... the more headaches she will have to endure, the less activity she will be able to participate in, the more she will suffer. I WANT IT DONE NOW! It is not fair to make her wait and suffer!
Her cardiologists assure me that she is stable. She is stable, yes, ok. But she does not feel well. Does that account for anything? Why chance her being unstable by waiting?

So , I will sit... and wait... and be the best mom I can be. I will be there when she needs me and I will back away when she feels she needs space. I will hold her tiny hand in mine and look into her deep chocolate eyes, and simply be there.

I will sit and wait and hold her hand, until she is considered sick enough to actually do something about her condition.

So sit every once in a while, and pray with me, pray for me, pray for her...

Monique today

2009-10-21T10:09:00.000-07:00

We went for a walk to get some fresh air and I grabbed the camera.

SCARE!!

2009-10-20T08:11:00.000-07:00

What a week it has been. After the news we got about Monique's heart on Wednesday. She woke up with a headache and a sore belly Thursday early morning. I thought it was nothing... i was wrong. Later that morning, she had a fever of 103.2, throwing up, pale, lethargic... not well. I brought her to the doctor and she ended up in the hospital until Sunday afternoon. She had a bad strep throat infection which made her super sick.

If I never have to hold her down for needles or tests ever again I will be the happiest woman alive. However, I know that is not possible. This is still the beginning of her journey. I hate it when those brown eyes are staring up at me while she is screaming NO! and I am holding her down so she can be poked again and again... there is no comfort that comes in that feeling.

What kind of mom am I ? I was in the bath reading Sunday night after Monique was in bed and I came upon this quote. I thought it very fitting for the situation I was in and the feelings I have been having about this whole never ending nightmare, it is as a part of me dies every time Monique needs another procedure

Let me tell you what you feel when you know you are ready to die.
You sleep a lot, and when you wake up the very first thought in your head is that you wish you could go back to bed.
You go entire days without eating because food is a commodity that keeps you here.
You read the same page a hundred times.
You rewind your life like a videocasette and see things that make you weep, things that make you pause, but nothing that makes you want to play it forward. You forget to comb your hair, to shower, to dress.
And then one day, you make the decision that you have enough energy left in you to do this one, last, monumental thing, there comes a peace. Suddenly you are counting moments like you haven't for months. Suddenly you have a secret that makes you smile, that makes people say you look wonderful, although you feel like a shell - brittle and capable of cracking into a thousand pieces.
(...)
In short, I have been there. I, of all people, should understand wanting to give up, when the ache is too great. But instead I feel myself fighting furiously, grasping at straws to keep succeeding, where i once failed.

I watch Monique as she grows. IT IS NOT FAIR! She is 6, there is no place where a 6 year old should have to endure things such as these. Why can't she be a normal kid. Run and play. No worries. No medicine. A world where she does not have to grow up before her time. I want to her to a child. It is evident that this is impossible. There is wisdom beyond her years behind those deep brown eyes. Believe me, if there was absolutely anything I could do to help her, I would.

WHY?! When will it end? Will there ever be an end? How much can we endure? Where is my cracking point? Where is hers?

People often say that I am strong. Yes, I am because I have to be. But even the strongest thing sometimes cannot endure any more weight. The weight of the world is heavy. I am not sure sometimes how much more I can take. In the quiet of the night, I silently break into millions of pieces. Far from where anyone can see. Further from Monique, who, needs me to be strong for her. If Mom is afraid, if Mom is crying, what kind of peace will that give Monique ?

So I will keep, under the cover of night, my pieces in a box, so I can find them when I need them, once all the tears that can fall have fallen.

Not good news...

2009-10-14T18:39:00.000-07:00

We went up for a check-up today. God, I was not expecting to hear what I heard. I feel like I am sceaming at the top of my lungs and someone is suffocating me with a pillow. I feel so completely helpless.

Monique is not well. Her cardiologist did not like what he saw at all. She is now on meds to help lessen the load on her heart. Her aortic valve is not working at all. It never worked well. But now, it's worse. The "good" side of her heart will have to be repaired. What I thought would be the #1 concern is not the case. It is something completely different. So now, it is a real waiting game, how bad, how fast?? Surgeons will have to go in and replace her aortic valve with a donor one (which would only last about 5 years) or a mechanical one (which would mean blood thinners for the rest of her life). Though choice!

One minute I am numb, the next I feel like screaming and then crying my eyes out. No matter how prepared you think you are for bad news it is a huge slap on the face. And it hurts like a BITCH!

Please, keep Monique in your prayers. Pray that she pulls through what is coming safely and successfully.

God Bless.

Monique is 6 !!

2009-08-05T06:39:00.000-07:00

Monique's first year in school os over. She is learning to read and to write. She is getting so big and I am amazed every day by her strength. We are now enjoying her first official summer vacation of many to come. It hasn't been very nice outside but we are trying hard to find things to do. And if all else fails there is always day camp.

Monique turned 6 on July 15 2009. Today we are August 5th, 6 years ago today I held her for the first time after her surgery. My little miracle! Now she had a lose tooth and is excited for the tooth fairy. Being a child is so magical, I think in ways we, as adults can't even remember.

This year, we will be attending the Heart Talk for the first time. She will play with children who have scars like hers. I am curious to see how she will react. If at all... nothing really phases her much.

Just a note to let you all now that all is well. Heart hugs to you all!!

Faith

May 2009

2009-05-21T04:46:00.000-07:00

Hello again... it's been a while. We have been busy I guess. Monique's last cardiology appointment went well if you have been wondering. Her cardiologist said she was stable but was worried because of her complaints and her few episodes of having to sit out of an activity because her heart "hurt". I am waiting for a phone call. An MRI of her heart or a cardio cath may be in order to find out what is really going on. I also asked him how many Truncus cases there are in NS. he told me they see about 1 new one a year - not necessarily the same type as Monique. He also told me they treat Truncus much like Tetralogy of Fallot which I didn't know. Nice to know I guess.

Summer is coming. We all can't wait. Lots on the agenda. Monique has started another season of soccer. I am not sure if it will be any better then the last. It is late - from 6:30 to 7:30, and bedtime is 7 on a school night. We will see... by 7 she is ready to go home.

I am cutting sugar out of her diet as much as I can again to see if it will make a difference in her activity level and tolerance. She did well before but I guess we have gotten slack... so i guess it is our fault that she has been a little difficult. Funny how sugar and certain foods affect some kids so differently than others. We will see... hopefully we will get her all buckled down again and able to concentrate and listen a little better.

We got 2 kittens 3 weeks ago, Edward (the girls call her Egwart - they can't pronounce Edward, it is too cute!) and Bella. The kids love them to death. Edward is a little ham, outgoing as can be and has no fear while Bella is timid and affraid of everything, she growls at everything too! Hopefully she will settle in ok.

thanks for reading! ...

April 2009

2009-04-17T18:10:00.001-07:00

Here we are mid April... no new things to report really... Monique still has this cold that she cannot seem to get rid of as well as a nsty cough! Other then that, we really can't complain! Her last appointment with her pediatrician went well, we are now waiting to see the cardiology team in late May. I am keeping my fingers crossed... again... not sure for what... to push the inevitable a little further or to get it over with.

Monique started swimming lessons with her school this week. She was so excited!! Cutie pie.

So many things I have missed this year. I so wish I could be one of those moms who is always at everything and is a volunteer for activities at school but I can't because I work at a different school. I remember how good it used to feel when my mom was there for activities... I am missing everything. Having a hard time with that. I am glad however that Monique has many people around her that love her and that give their time to be at the activities mom can't be at, thanks Grand-mères... !!

I am hoping and praying to be transfered to her school in September. I don't think I can be away for her for another year. She asked me again today when I was going to be working at her school (last year we were in the same school). I miss out on way too much, plus I worry constantly that I could be missing something important in her condition. Not that I don't trust the staff at her school, they are completely capable and trustworthy but they aren't mom. I think any mom would understand that.

Anyhow... keep praying
ox...

March 09

2009-03-11T15:47:00.000-07:00

So.. here we are. March 2009.
Update on Monique?? She is doing great other than the cough and cold she can't seem to get rid of. her pediatrician thinks she has a tough of bronchitis... nothing to worry about and not bad enough for a puffer.

We are going to the city for a few days on vacation for march break. She is desperately asking to go stay in a hotel with a pool... ha ha ha... cutie. She deserves it! She is learning so much so fast. I am amazed on how fast they start to learn to read. Sha can read simple french words - les, sa, son, dans, la, le, un, une, des, mais, voici, vais, fais, ma etc... and she can figure out the sentence by looking at the pictures and reading the words she knows.

She had her spring concert this week at school. She was too cute! The whole class dressed in baggy clothes and crooked hats because they had a rap song. Monique, my little model, of course had the pose to go with it!

Check-up

2009-01-28T12:51:00.001-08:00

Monique's check-up went well. Her cardiologist is pleased with what he has seen. Seems I have been worrying for nothing other then a virus that's making her tired. Her cardiologist said that he understood however why I was concerned and reassured me it was ok to feel that way. What an emotional roller coaster the last week has been... punctured ear drum to not punctured ear drum.... huge change since november to no huge change since october... WOW girl... you keep me on my toes (doctors around here seem to help that along!)

Thanks to everyone for their prayers and positive vibes.

Appointment tomorrow

2009-01-26T14:47:00.000-08:00

Monique's fever is gone, but I am afraid her heart is not well.
Cardiology appointment tomorrow...

... need I say more. I will update when we get back.

What?

2009-01-22T06:09:00.000-08:00

Monique's doctor just called... she does not have pneumonia... she has little fluid in her lungs but she is still tired and has a fever. She is not one to usually have a fever for no reason. She has a little bladder infection... what?... that's what the doctor has told me. It is safe to wait until tuesday to go see her cardiologist. Ok... well... why does she have a fever? Flu?
I hope it will go away soon...

Worries

2009-01-22T03:37:00.000-08:00

Monique got the teacher to call home from school yesterday because she wasn't feeling well. Jonathan went to get her. She has been very sluggish and coughing. When he got her home he took her temperature. 101.4... yeah.. off to the doctors. Our family doctor was great. He took us right away (pediatrician is on vacation) and sent her for tests - x-ray (lungs), blood tests, and an ECG...
He also said that her right ventricle was failing - his judgment which I trust.
Our family doctor is waiting for the results and to speak with her cardiologist before he calls us today with the results.

Check-up

2009-01-21T06:31:00.000-08:00

So, I called the Children's Heart center back today. The nurse was very helpful and actually surprised me. When I told her who's mom I was she knew exactly who Monique was and what she was born with. I explained to her what has been taking place with Monique's activity level and she spoke with Monique's cardiologist for me. She phoned me right back and explained that he wanted to see her asap because there were a few things that showed up on her last echo that could change her health relatively quickly. So, Tuesday, next week, for 11am, we are off to the city for another check-up.

How things change so quickly ... I will never take anything for granted again!

Keep Monique in your thoughts and prayers please.
I don't know whether to pray for Monique to be ok for a while and for her failure to go slowly or for her surgery to be over with. Either way... she will be suffering and there will be pain. Such mixed emotions right now...

2009-01-18T09:41:00.000-08:00

January 2009

This week I called the Heart Center. I am waiting for a call back. I as well as my family are concerned. Monique is always tired. This week in school she told her teacher that she felt weird while they were running around in the gym. Her pediatrician seems to think everything is ok because her blood pressure is ok. But thinking back, even as a newborn, her blood pressure was never a problem.
I wish I could put her an a bubble and somehow make it all ok. I am terrified!

To top it all off, I started me master's degree this week. Am I crazy? I am hoping it will be an avenue of escape rather than a burden. I am hoping that when Monique needs surgery my profs will understand. Because now, it is not someday a possibility however it is imminent, soon, later, within a year, next month.. who knows? All i know is now I have to realize it is our reality.

ox... take care...

Welcome 2009

2009-01-04T10:22:00.001-08:00

Happy New Year

2009 has begun... hopefully it will be a not only happy but healthy one as well. Monique is getting more tired and seems pale. She LOVES!! the snow but tires easier this year then last. I am so thankful for Jonathan who enjoys the snow as much as she does. I could watch them for hours. I went outside too, to play with my baby. She is hilarious!

Monique has had a cold for about 3 weeks now. She caught a nasty sinus infection and was all proud that she could take pills like mom this time instead of amoxil. I thought it would make her less hyper, as it drives her and I crazy! But it didn't work. I guess it is the medicine itself that affects her that way.

She has a check-up this week and also starts up school again. I hope both go well. Every time it is time for a check-up I get a little more afraid and I still feel like crying. I try to stay positive still but wow.... it's hard. I know that one check-up, one day, I will have the news I knew was coming but wanted never to come. So, I guess I have to take a deep breath and like I say... Suck it up, cause it's my life.

Happy New Year 2009

December appointment

2008-12-06T05:41:00.000-08:00

Monique had her check-up this week by her pediatrician. He says she looks the same as last time. But again, he can only judge by what he can see and he can't see her heart. She liver is not enlarged and her feet don't swell, her pressures are still ok too. I have noticed a change in her activity tolerance, it may be the beginning but nothing too serious yet.

So, another month has gone by and all is still ok. I don't think too much about the surgery that is to come, that I know is inevitable. If and when I do it drives me crazy and turns me into someone I don't want to be. I have never been a pessimist and I think it is in the best interest of everyone around me that I don't start now.

Monique is starting to read simple sounds and know her letters and the sounds they make. She is learning so well it surprises me. I guess I never thought that one day she would be in school and learning the things she is. She is my baby... but it is so nice to watch her grow and I am curious to see what paths she will chose for herself. I hope she never says "I can't!" and she follows her dreams no matter what they are. Although it would be nice if she would keep the ones she has now. She says she wants to be a doctor and a mommy. Wouldn't that be nice. Oh well, as long as she is happy and healthy.

As they say... Shoot for the moon, if you miss, at least you will land among the stars!

News

2008-11-19T15:27:00.001-08:00

Monique is doing so well in school. She is learning so many things. If she could slow down, listen and calm down a little bit she would be a whiz. She has trouble sitting still and paying attention. THey have a system in their class that is like a traffic light. Green = Ok, Yellow = Strike 1, Red= Not Good. Monique comes home a usually saying she was a little in the yellow and a little in the red. When I ask her why she always says she doesn't know or that she didn't feel like listening. On the rare occasion that she does come home in the green, we celebrate!!
Are other heart kids this active? Monique's cardiologist told me when she was born that there was a good possibility she would be a very active child but holy! I didn't expect this! She's a sweetie though!
She has learned to write her name, and a few of her friends' names as well as Mom and MereMere. She has learned to read le and la. IT is wierd to see her learn all these new things but it is great too. She can learn. THe fact that she is going to be reading at the end of this school year (beginning to read anyways) scares me half to death. Is she going to succeed like allt he rest? Will she be average, above or below? I guess these are all normal questions moms and dads have about their child.
I am curious what her next check-up will be. We go the first week of December to her pediatrician. I hope all will be well. She seems tired but it could be me being paranoid I guess... can you be too paranoid about things like this or is it good to be concerned... I am sure concerned is ok, but over-concerned is a possibility too.
I guess I am full of babble tonight. It has been a while I guess. Good news though. A bunch of Heart Moms are getting together in the city soon. I am looking forward to meeting them all. I have found enormous support from them and reading their stories. Every year, our children's health centre hosts an information session for families dealing with children who were born with a CHD. It is called Heart Talk. Every year I way I am going to go. Monique is now 5 and I have not gone to one. I am making it my purpose next year to go. I think it would be a great help and source of knowledge and support.

Update to come about her check-up... please pray that all will be well.

Visit to the Pediatrician

2008-11-04T17:10:00.000-08:00

I brought Monique to see her pediatrician today. My suspicions were right on! Her mood was definitely a huge clue to what was going on. She did not complain once not did she say she hurt somewhere. Double ear infection. Her first dose of Cefzil for the season. An early start.

I feel better now that we have seen her pediatrician. He reassured me that he will keep a close eye on her with me. He wants to see her once a month to track her progression. I am a little relieved. I know some things I will pick up on but others I will miss. I can count on him to notice things that I will not necessarily notice. His wife is also fantastic. She is his receptionist. She gave me their home number and invited me to call whenever I need anything. They are great !

I started talking about Remembrance Day today at school with my students. Wow... tough! I was close to tears the whole time. Miss you Papa!

Today

2008-11-03T16:50:00.000-08:00

I am ok. Monique is and will be ok. That is what I have set my mind to. I have the best support system anyone could ever ask for. Thank God for family, friends and loved ones.
Monique has a cold. YUCK! Poor thing hardly has a voice. I hope it won't last all winter and that ear infections won't start already. It's not like I would know. She has never ever complained of hurting ears or a hurting ear every time she has had an infection. She just acts differently.
Is this common with most heart kids?... I often ask myself that question. Her tolerance to pain is ridiculously high!!! Sometimes I know I would be crying because of something or somehow she has gotten hurt but she brushes herself off and away she goes. I am always amazed. She is a quite a gal.
She has learned so much in school. Tonight she was a chatterbox at bedtime. She wanted me to lay with her for a few minutes for cuddles. Well... ha ha ha... more like a never ending chat. She's cute, she talks like a little woman. Asking questions like... So mom, what did they teach you tonight? (I had a meeting)... What did you learn? Did it help you?... She was asking me all the questions I ask her about her day on a daily basis. At least I know she is listening to me! Cutie pie...

my therapy session for the day

2008-10-29T17:24:00.000-07:00

Well... I think my blog will become my therapy. I have always loved writing and if in some way my writing can help someone else along their journey then I am glad to do so.
I stayed home from work today. Monique woke up with a headache and a tummy ache. She actually said her tummy felt funny, I know what that means, she is going to be sick. Sure enough! Puked on my bed! Nice job! But after I got mad (I felt horrible about getting mad but it worked), she learned to RUN to the bathroom to throw up. Her flu only lasted the morning so that was awesome. Today was a good day. Today was a positive day.
I e-mailed a few more doctors and did a little more research about the next surgery Monique will need. The outcomes are good. But there is always a possibility of complications.

...stay tuned

better

2008-10-28T15:32:00.000-07:00

Tonight I am feeling better. Yes, ok... I arrived home after work in tears but Jon let me cry it out on his shoulder. God love him! I have decided to try at all times to look at the positive side of things and not to worry until I have to. Right now Monique is still alright and I cannot enjoy her to the fullest if I am down.

We had God and his angels looking over us, protecting us and guiding doctors the first time we needed help. The second time, we have connections. We have two very special angels looking out for us. Grand-mere and Papa will forver be watching over us. They thought Monique was such a special child. Grand-mere knew it right from day 1. They always had a special place in their hearts for her. I truly believe they will take care of all of us. They will give us strength and guide all who need to be guided. That is what I believe.

It will not always be easy and I connot promise not to have anymore spontaneous crying fits but I will try. I will stay strong for Monique. I will stay strong for my family.

Thoughts...

2008-10-28T04:17:00.000-07:00

The more I read about other families dealing with this CHD, the luckier I think we were after Monique's first open heart surgery. We had no complications. She went in for surgery, it finished sooner then expected, yes she was on many medications and needed blood afterward but she only stayed in the PICU for 1 week. After that week we went into a normal room and we went home a week later with only Lasix and Aldactone. That was it. We had check-ups every 6 months. When she was a year and a half old she needed to have a cardio cath done. That's it!! Just check-ups and normal kid stuff.

I have read stories of so many complications and the more I read the more afraid I get for Monique's next OHS. So much can go wrong. So many complications could arise. Do I drive myself crazy trying to analyze everything and find all the answers. Are the answers out there? I think that because everything went so well, I somewhat shrugged Monique's condition off. Now I am realizing how very serious it is and it could be!

Yesterday Monique got her flu shot. It almost broke my heart. As she screamed before being poked with the needle i got flashbacks of the problems they had finding good veins when she was little. She had rolling veins. Before her cath she learned 2 new words - stop! and OW!, pretty sad. So last night when she did not want to go to bed i didn't force her, I rocked her. I feel as if I should be taking every opportunity to be with her and to make her feel like a princess as I can. But doing so, I am spoiling her and I would not be making things easier for the future. As I lay in bed last night I felt like she should be in bed with me and I should be enjoying all the cuddles I can get now. I am so afraid of losing her, she is my life.

But I try to tell myself everything will be ok. Everyone around me is telling me it will all be ok. I try to believe them but it is so hard. Jon tells me not to worry yet and that the doctors will tell me if and when I have to worry. I try so hard to understand and really believe that. Then I go into defensive mode and scream inside. YOU DON'T UNDERSTAND!!!

Failure? Next step?

2008-10-27T04:51:00.000-07:00

After our last visit to the Heart Center, on Tuesday I was afraid, confused and angry. I am told to start looking for signs of heart failure in my 5 year old little girl. There is too much blood going into and staying in her heart which is going to cause her heart to enlarge which in turn is going to cause heart failure. WHAT?!
I knew the day would come when Monique would need another surgery and I had accepted that fact. I never thought I would hear those words though. It was like i had accepted it but in denial of it all still.
So I am now in a desperate search for answers and information. I seem to have hit a dead end. I was content with the research I had done after Monique was born but now it is not enough. I want to know what is next? What are the procedures? What has worked in the past? What is normal for my child who now faces another surgery? Have others had the same experiences? What are the latest advances in research for Truncus Arteriosus Type 2?
I don't know where to turn. Information is so scarce. I have not met another family dealing with this particular CHD. Do they exist in my area? If so, I would love to talk with them and share...

... to be continued...

Cardio Cath

2008-10-27T04:47:00.000-07:00

In January of 2005, Monique needed a cardiac cath to dilate the artery because of scar tissue that had formed. She was only a year and a half old and oblivious to what was going on. So innocent in her johnny shirt walking down to the procedure. She had no idea what was in store for her.
All I could do was cry and ask how this was fair for a child to have to endure.
All went well and we were home in no time. Thank GOD!! Again!

Monique's Story

2008-10-27T04:30:00.000-07:00

This is Monique's story. Here are the events minus all the frustration, fear and confusion that I felt. If i were to write about me and what Monique went through, I could fill a novel.

Monique, my daughter was born on July 15th 2003. She looked like a perfect little baby with all 10 fingers and 10 toes but the problem was that I could not see inside. The day after she was born, she was sent to the IWK by life helicopter because she had a large murmur. I was told that it was probably nothing but the doctor wanted her checked just to make sure.
She flew all by herself to the IWK. I was not allowed to ride with her. I was a mess! We drove 3 hours to Halifax, not a small endeavor after giving birth 24 hours ago! When we arrived at the IWK we were escorted to the NICU. Here, all the babies looked so fragile and Monique was what looked like a healthy 6 pound 9 ounce bundle of joy in her incubator.
We met with DR Chen and he told us that it was probably nothing major and that we would be sent home the next day. That was not the case however. This was the beginning of a month long stay at the IWK.
On July 17th 2003 Monique was diagnosed with Truncus Arteriosus Type 2 with a VSD. After a long explanation of what this was and what this meant I was numb. I had so many questions but the one tht stood out was "Why did they not see this during my ultrasound? Did the technician even look properly?"
So... now what? We were admitted. I soon discovered waht heart failure was and what it looked like. Monique never turned blue but was a very sleepy little one. I was lucky to get her to feed more then an ounce and a half at a time.
She had surgeryon July 30th 2003, thanks to Dr. LeBlanc who flew in from visiting in Quebec. He was from BC but made the trip for us. Otherwise we would have needed to go to Sick Kids in Toronto for surgery. The surgeons had never operated or seen a case like Monique's so they were not comfortable operating. The surgery lasted 3 hours, 2 hours less then I had been told.
Monique spent a week in Intensive Care, then we were moved to a ward for another week.
I was finaly able to bring Monique home on August 15th, at exactly a month old.