December appointment

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

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

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

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

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

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...

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?

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

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

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.