Sunday

Hi everyone!

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

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

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

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

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

Saturday morning

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

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

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

Friday night

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

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

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

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

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

ox Faith

Friday morning

Good morning everyone.

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

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

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

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

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

Thursday

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

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

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

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

Until next time!
ox... Faith

Update... Wednesday night

Monique is my hero.

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

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

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

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

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

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

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

afternoon!!

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

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

morning...

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

Surgery

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

Tonight

. . . sitting here watching the fire go out.

Thinking things, why do I think?

Where is the off button?

Where is the pause button?

I was crying? When did I start?

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

Countdown

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

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