Memories....

Today I was cleaning out my sewing room and trying to get it organized.  I found I had alot of material and no time to sew.  So I divided it up and labeled totes so I can find it when I have the time.  In cleaning out I ran across the material I used to make blankets for Gracie and found my grandma's brag book for her.  I found a piece of material of the last blanket she was wrapped in and I cut a piece of it and placed in her memory box that the hospital gave us.   

Hopefully soon I will be able to make more blankets for the children at Mott - it makes me feel good to do that.  I feel  like I am doing something good for others and honoring her at the same time. 

Easter is next weekend and the family will be here - Gracie will be in our thoughts and in our hearts!!

Another Day

Went shopping for my grandchildren today - I always buy summer clothes for them at Easter.  I couldn't help but think about last year and all the little clothes I bought for Gracie...... ones she never wore.   I have a hard time going in to the girls department to buy for my other granddaughter Izabel.  I buy for the 2 boys and I know I should be buying for 2 girls. 

I watched 3 babies last weekend in church - I think they were all 3 months or under - I find myself looking for her in the faces of other babies... pretty silly I know, but I do - I think because I often wonder what she would be doing now or how she would look.    That is really different from when an adult dies - you don't think about them getting older - but with children you do, especially when they are so young. 

I wish I understood why the loss seems so raw again - maybe it is the grieving process - Your mind and body only take so much at a time, so I guess it is time for more grieving and I just need to not fight it.  

So Gracie - I hope you feel my love for you this night and know you are always and forever with me - just like I promised you.

A letter on her 15 month birthday

Well in my haste to post the letter I wrote - I found some errors in it but I know anyone would still understand it.  Actually it was pretty cathartic to write it and it just flowed out.   I hope it does some good and I hope that the world hears the pleas of all the children who have been born with CHD. 

Looking at some of the pictures again - were yes painful but I could feel the deep love for all that she went through and for all my daughter went through and continues to do so. 

Today she would have been 15 months old - so hard to imagine what she would look like now.  I know her bright blue eyes would be shining and although she wouldn't have a toothless grin - her smile would still light up the world. 

I know Gracie has been close because within in a 24 hour period - I  couldn't stop thinking about her and Katie was feeling her too and then my boss said she opened a book and it totally brought Gracie to mind - out of the blue for her.   All of us having this feeling at the same time.... silly maybe - but I believe in it. 

Love, Grammie

Heart Letter to Washington

There will soon be a documentary on PBS for CHD and they are willing to take our letters to Washington to see if we can get awareness  for CHD. 

Here is my letter - (Pictures aren't all happy ones)   The letter printed better

Gracie Lou Lavoie


Born – December 19, 2008

All seemed perfect that day! This beautiful child entered our lives and hearts forever.



We were told she was perfect, everything was fine. Even though she was breathing and sounding congested, we were told she was fine. Her 2 week checkup we were told he was fine – she was perfect.

February, 4, 2009 – she became very congested and wouldn’t eat. She was taken ito the E.R. and admitted for RSV. She was intubated to help her breathe because she could no longer do it all by herself. For the next 17 days she was in ICU in a coma and we waited hour by hour to see if she would survive. Every day they took x-rays and monitored her – finally she turned the corner and began to recover.

She had a hard time holding her oxygen levels for several days after being moved to regular care and we were told she was fine – she would recover fully – nothing else wrong and she went home 22 days later. She was perfect.



Three and half weeks later she seemed to have some breathing issues again and she was rushed back to the hospital and she was tested for RSV and it was negative. They said don’t worry – she is fine, give breathing treatments if you feel she needs them. She is perfect.

Then at 4 ½ months, at a check up, they discovered a heart murmur and low oxygen levels and she was rushed back to the hospital and they couldn’t understand what was wrong. Finally they did an echogram and discovered she had two holes in heart (ASD) a was missing her right pulmonary artery, pulmonary stenosis in her left lung and pulmonary hypertension – she was rushed down to U of M - Mott Children’s hospital . She was born we these defects – her heart and lungs were NEVER perfect and it went totally undiagnosed until it was too late

This was the LAST day we saw her awake, smiling and laughing and we prayed that her heart & lungs could be made perfect.

Why is CHD awareness important?

So NO parent, grandparent, brother or sister have to see their loved one like this.

So they don’t have to be told there is no hope.

So parents aren’t being asked to make impossible decisions that mean life & death for their child.

So they don’t have to be told it’s too late – maybe if it had been discovered sooner.

So all medical professionals are trained on what to look for - CHD is the #1 Birth Defect and the medical profession isn’t aware enough to know what to look for!
So beautiful , innocent children have a chance to live the life they deserve.


So families never have to say good-bye this way

Gracie Lou Lavoie

Earned her Wings

June 7th, 2009

She is now a PERFECT Angel

I pray that some one hears the hearts of these children and  the sounds of all the tears that have been shed.

9 MONTHS....

I am having a hard time right now - not sure why.  I guess because we  are coming closer to the 1 yr. anniversary - I know it is 3 months away - maybe because it is after February's memories.  I don't know but she sure has been on my mind much more then usual - having a hard looking at baby girl clothes and thinking about upcoming Easter - which was our last holiday with her.  I have a video of her and I can't bring myself to watch it. 

Just feeling a little lost it seems.  Seeing pictures with babies in them even sends little pains to my heart.  We sang Amazing Grace on Sunday and I didn't cry - I sang the whole song and covered my heart with my hand at the end in her memory and of how I last held her.   The seventh of the month passed and I couldn't bring myself to write - not that I wasn't remembering, just couldn't write about it. 

When I get down for a few days, I fear I am falling backwards in the darkness - and I don't want go there again - it is a very scary place.  But I think I am just afraid of it and whenever I feel down - I get worried about it. 

So Gracie - just know I love you always and forever and you will always be in my heart.

Never far from my thoughts...

Gracie has been on mind so much more then usual this month - I already explained why.  Even with 50 hours a week of work and taking a class and having a lot of home work - she is there in my mind at least 10 x's a day. 

Last year she was now throught the worst, or so we thought, and now looked great, but had problems keeping her O2 saturations up - they didn't really know why - they blamed the RSV and then they blamed their O2 monitors not being accurate or she was kicking too much  or whatever else they could think of at the time. 

We were so relieved - thanking God multiple times a day for her recovery.  We just got a reprieve - a chance to be grateful we had her, appreciate her and see grow for a few more months.  I am grateful for that - for I have seen many parents not even get much - but some days it is hard to really feel it because the anger and sadness takes over.

I will be contacting Covenant Hospital - I got a name of  person.  I just really need to talk to them and tell them the impacts of their actions.  I am not threatening or suing or any of that - but I hope I can open some eyes so that they don't over look this in another child and will give them all the possible opportunities to live.

I sure am missing her right now more then ever - difficult day!! 

Missing you Gracie  - Always and Forever!!

Remembering Feb. 2009

It has been a long time since I have written, but she is never far from my mind  and always in my heart.  I have needed to write for sometime - but I didn't have the time to sit down and do it, so I've kept it bubbling inside me.

I recently read a blog of a woman who lost her child 5 years ago and she helps others who have experienced the same thing.  She was talking about this Christmas and pretty much things were back to "normal" but there were things that still trigger her emotions like it was yesterday.    This caught my attention because I continue to be amazed that how things can trigger such raw emotion in me - like it all happened yesterday. 

I can be perfectly fine and something comes to mind or I see something and  my emotions are there on the surface and they are very raw.  I want to talk about what happened to people and when someone is willing to listen, I can be perfectly fine talking about it and then in a split second, I am crying and feeling her loss so deep inside it hurts like I was stabbed.   It catches me off-gard - I don't even feel it coming - it happens in an instant. 

I still have issues in the baby department and I am often there looking at things for my other granddaughter and I pretend the other items aren't there - even though she wouldn't be wearing the sizes that I associate with her.    I saw a very similar outfit I bought her for Easter last year - She never wore it becase it was a little too big for her.    Today a baby was crying in the grocery store and I turned and wanted so badly to pick that baby up - I have no idea whether it was a boy or girl, I just wanted to hold it and comfort it.  Other times babies don't bother me, unless it is a little girl.  I notice Katie has a hard time with little girls too and she can't be in the baby department - she has a hard time if I show her things I have bought for her niece who is older then Gracie. 

This month was the beginning of the end for Gracie - she was fighting so hard for her life last year at this time w/RSV - I remember watching her turn blue in my arms and them doing chest compressions - I thought I was watching her die then.  It was 4 weeks of hell - she was intubated, paralyazed, swollen so much at times, she looked like an alien - watching her vitals go all over the place.   Seeing tears creep out of the corners of her closed eyes and the nurses would give her morphine because they said she was in pain - She was give so much - she was addicted and had to go through withdrawls.  I thought that was the worse thing to have her in pain an not be able to respond and let us know. 

Then I have a lot of anger - how could she go through all of this and those doctors not know something more serious was wrong - how did they miss her right lung not getting any blood supply.   When she struggled to keep her oxygen levels up even when she had gotten better - up to the day we took her home - she was struggling w/their oxygen level - but they said no it must be our monitors - she "looks" fine.     I don't know if she would have made it or not if it had been discovered earlier - U of M seemed to think she would have stood a good fighting chance - they told us that and they told us they didn't understand why they didn't look further.    They were also amazed she survived the RSV at all given its severity - but she was a fighter - she wanted to live. 

We were so grateful she pulled through.  I truly believed it was a miracle and it was due to all the prayers from our friends, family and many others I never met.  I truly saw what prayers could do - which is why I gave up on prayer after she died - but that's for a different entry.  

I told so many people that she was here/saved by the grace of God and that it was the closest I ever wanted to get to losing a child - I believed that she really had "dodged a bullet" and we were so lucky to still have her.    I now wonder if God allowed her stay with us a little longer because of all the prayers and love at that time.  Maybe all the prayers were answered and we were given the gift of time with her - I don't know what the answer is, but there was a reason she survived at that time - even the local drs were very skeptic if she would pull through.    I know we sure didn't take her for granted after that and we appreciated that time she was with us, so much so that I guess we thought nothing more could happen - we had been through the toughest part.... but we didn't know our future.  I guess this is a lesson we hear about but forget easily - appreciate today and those you have in your life today for that is all we have, right now and no promise for a tomorrow or next week.

February will always be a reminder of 28 days in the hosptal with Gracie....  28 days of praying for a miracle and getting one.   We just didn't know it had an expiration date.

I Love you Gracie - Always and Forever!! 
Love Grammie

Gracie - recovering from RSV - we were over joyed to see her with her eyes open and be able to hold her for the first time 3 weeks.