Christmas

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?

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

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!

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...

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

Surgery

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...

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

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

SCARE!!

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...

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 !!

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

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

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

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

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

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?

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

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

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...

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

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