The second Christmas

This was our second Christmas without Gracie - it is a "double" dose of grief as her birthday and Christmas are so close together.  It was a good day with all the grandkids - but we are always aware of who is missing.  I had some time to talk w/my daughter today about what she was feeling - I am glad we talked - it helps.  This grief is something that will always be with us  - it won't end.  It has evolved to where I now think it will always be... we will always miss her and wish she were here.  We will always wonder what she would be like now and we will imagine it for awhile and then we will tuck her back inside our hearts  - our forever angel. 

Thinking of You with Love


We thought of you with love today,

but that is nothing new.

We thought about you yesterday,

and days before that too.

We think of you in silence,

we often speak your name.

All we have are memories,

and your picture in a frame.

Your memory is our keepsake,

with which we will never part.

God has you in His keeping,

we have you in our hearts.

A million times we`ve wanted you.

A million times we cried.

If love could only have saved you,

you never would have died.

It broke our hearts to lose you.

But you didn`t go alone.

For a part of us went with you...

the day God called you Home.

~Author Unknown

Merry Christmas in heaven Gracie - we love you - forever and always!!!

Her Second Birthday

Two years ago this night, my daughter and I were at the hospital awaiting the birth of Gracie.  I was excited and yet nervous since this was the first time I was going to be at the birth of one of my grandchildren - it was an amazing experience which I will never forget and always be forever grateful that my daughter asked me to be there. 

These past few months I found myself thinking of things to write in this blog and yet resisting the actual writing of them.  I am not sure why exactly - maybe because no one else reads this anyway.  I have been struggling to find something that would honor Gracie and allow me to feel it was an expression of love.  I still haven't found yet.  I love making the blankets - but have been working so much I have hardly sewed anything in a very very long time.  I have tons of material and no time to get it done. 

Today I accidentally called Izabel, Gracie twice - I have never done that and I am glad that she didn't really catch on when I did it.   

Christmas will probably always bring out the loss more - some of the Christmas songs really make me tear up.  Seeing the little outfits in stores and remembering buying her outfit always brings a little twinge to my heart. 

At my Christmas party one of my co-workers came with her 5 1/2 month old little girl Ella Grace - She was very content to be with me and even liked my husband - it was a joy to be able to hold a little one.  She is the age that Gracie was when she died.    Then my boss's grandson was in the other day and he was born 2 weeks before Gracie and I looked at him and thought WOW - she could have been that big and walking, talking etc.  Of course when I think of what she might be like - I think of her being totally  healthy with no issues.  I have to remind myself that her life would not have been the same as a healthy child. 

So Gracie - I wish you a very happy birthday - I wish you were here to blow out your candle and open up your gifts.   I wish you could feel how much we love and miss you.  I know you are in a better place, but some days my human selfish side wants you here with us. 

Celebrate your birthday with Jesus and fly high with the angels and know that I will always love you always and forever my precious baby granddaughter. 

As time goes by.......

I know it has been a long time and I have written so many blogs in my mind on the way to and from work.  I have been in a state of "flux" - Gracie changed our lives and I am no longer the same person - I find myself wondering and searching for what I can do for others who are experiencing the same things.  I don't know what that is = I have made blankets for the hospital through a program started by another CHD Mom.  I need to make some now - but have not had time for any sewing at all.   

I have encountered 3  people who have very sick children and I have been there to hear their stories and cry with them and give them understanding.  Heaven knows I am not an educated counselor - but I know I can listen and they don't feel so isolated talking to someone who has experienced similar issues with a child of their own.  I have another opportunity to talk to a family who have lost their child and the grandparents too - and I want to - but I don't want anyone thinking I have any more answers then  another person - I just understand how to listen and have a story to share too. 

I often hear the name Gracie being spoken in strangers conversations as I pass them - it used to throw me in to a tail spin - but now I smile and look up and tell her I love her too.   I choose to believe that I hear it for a reason and I now cherish those moments. 

I am finally realizing how lost I was at this time last year - I was really in a different  and dark and lonely place, deep in grief and depression and for a long time I was scared I would go back there - but I no longer fear that.  My love for Gracie is eternal,, sweet and pure and it often warms me from the same place that I used to feel a hole in the center of my chest.  Holding other baby girls is always special - but it never feels like Gracie and although that is probably  healthy,  sometimes it feels like such a let down - silly probably but I guess I will always want to experience little piece of her again.  

In the beginning you can't imagine how you can live without this child and it is all unfair and wrong and horribly painful.  Then I thought OK, I will get through it like I have all other losses in my life, but I was so very wrong!!  This loss is always there, but you can learn to live again..  As I have read other parents stories of loss and grief, I realized it always there for them, some days are harder then others.  Even years after, there are still tough hours or days for various reasons that trigger it again.  When I first realized this - I thought, how can anyone live through this... there is no "through it"..... it just is there....  I really resisted that for sometime because it seemed unbearable to think of experiencing it over and over.  I struggled with this for a long time.    Ever so slowly I have come to understand how life goes on and yes, the loss is always there because nothing can make it right, change it or take it away.  You can't reason it away, when you lose a child because there is no good reason good enough.  But then I realized that the love never dies - you always feel love for this child. That has given me some peace - I can still experience here through love.   I choose to take the moments like hearing her name spoken by strangers or seeing it printed or hear it onTV and I embrace those moments and the feelings that come and I honor her.  She is more then a memory and she is never forgotten.  

Some days I miss her so much and it is more difficult then others.  I will always wonder what she would look like today, how big would she be, what would her voice sound like and what kind of life would she be living?   Those questions will always be there, unanswered.   Some days the tears are there again and it is OK to let them fall.   I believe I have "accepted" it as much as anyone can accept something like this. 

Gracie's life has forever changed our lives and she will always be with us.  I will continue to look for ways to honor her life and have her spirit allow me to help others.  I still struggle trying to find it, but I think it will show itself to me one day, when God thinks I am ready.  Having faith in God helps in many ways, I don't know how I would have gotten this far without it.  However the loss is always there and I will carry her w/me forever. 

I love you Gracie - Always and Forever,
Grammie

She became an Angel 1 year ago today

The day we have all been dreading has arrived - we said our final goodbye to Gracie at 8:38pm one year ago. 

I got to spend some time with Katie this weekend and she was able to share with me some of her grief and what she thinks and feels.  It is heart breaking to watch and hear her pain and all I can do is keep encouraging her talk about it.  I now know and understand that keeping it all inside your head only allows the wounds to seep and burn but never heal. 

Don't get me wrong - I don't think you get over losing your child - I think you come to accept it even though you don't want to and it is the hardest thing  for someone to accept.  It is not right or normal to have to learn to accept a loss such as this.   There is no timeline - today is not a magic wand that takes it all away and life suddenly turns back to "normal".    Acceptance means you live with it everyday, for the rest of your life and yet not allow it to rule your life - at least that is my definition, the best I can articulate at this time. 

Today I wanted to honor my granddaughter's life and be with my daughter to give her support and love.  We spoke of a few things we could do, and I promised myself that however the day went was the way it was supposed to be. 

Signs...  Some may believe in them and some may not - I know we attach meaning to things every day.  However the approach of this day has brought many "signs" for me.... 
1.  I have a pink rose bush that is 7 years old and blooms every year at this time  - about a 1 week ago I noticed there was one branch that was growing wildly - like a climbing rose  and I picked it up and wound it around a trellis - it bloomed a deep crimson red - a different kind of rose then the bush I planted.  I keep looking to see where it grew from and it comes from inside the original rose bush - 1 long vine.  The regular rose bush bloomed it's first rose and it is a beautiful pink rose - it is not cross pollination. 
2.  I put a basket of flowers in the corner of my house along with an angel statue I got from a neighbor and a statue (plaque) with wind chimes by the flowers.    I then also have 2 wind catchers (like pin wheels) by the flowers...    The first 5 days, I would come home and the Plaque had fallen over  and I kept putting in a different position and  the next day it would tipped over.    On Saturday I laughing said to Katie, as I was resetting the plaque yet once again, I said Gracie keeps kicking this over and we giggled.     The next day I went out and the pin wheel was all laying down fully apart on the lawn  (another one was untouched)  The plague was not tipped over.   I came in the house and said you won't believe what happened now - and Katie asked if it was tipped over and I said no.  Katie said good because I yelled at her and told her stop doing that.  I said well the pin wheel was all torn apart and on the lawn - just like a kid??? 

Whatever your beliefs - I choose to believe she was letting us know she was near and OK - After Katie left - nothing more has happened.,

3.  This morning I walked in to the Bank and there was an elderly person behind me.... The teller called out... Hi Grace - how are you doing today?    I just smiled.

Today - I watched the DVD that was made by the photographer the hospital called that night.  They took pictures until Katie asked them to stop before Gracie was taken off support.  The DVD is put to incredible moving music and I again cried and cried.... I am still amazed because through all of it - you can SEE love in those pictures.    It was the most loving, precious, amazing, heart wrenching - time in my life - so hard to put in to words. 

Today - Katie and I along with Wayne spent the day together - She wanted to stay at home and try to forget the day, and I was afraid she would back out - but she didn't.    We got balloons and wrote our messages on them and released them to the sky, outside the Children's zoo.  We had a picnic at a park w/Wayne and then took him to the zoo after the balloon release.  Katie wasn't sure she could take being around the kids - but all went well and Wayne enjoyed it immensely.  He got a balloon to keep for himself.  

I thought is was great way to honor Gracie - we spent it together, with her brother, we sent her our love and messages and we took her w/us in our hearts and minds to places an 18 month child would have loved.  I have asked Katie that we create this day as a day we take her someplace special with us every year and Katie has agreed.   It will be a special day for us and we will honor her life and the gift it was to us even if only for a short time. 

As for may daughter -  whose pain I can not erase, I found this poem for her and I hope it helps a little.......

Letter to Mom
    Author:  Joy Curnutt

Mom please don't feel guilty
It was my time to go.
I see you are still feeling sad
And the tears just seem to flow.

We all come to earth for our lifetime
And for some it is not many years.
I don't want you to keep crying,
You are shedding so many tears.

I haven't really left you,
Even though it may seem so.
I have just gone to my heavenly home
And I am closer to you then you know.

Just believe that when you say my name
I am standing next to you.
I know you long to see me,
But there is nothing I can do.

But I'll still send you messages
And  hope you understand.
That when your time comes to "cross over"
I'll be there to take your hand.


I thought I would blog today about her last day and all that happened and hows she was - but just like the day  - it happened like it was supposed to and so this blog flowed from me, like it needed to. 

Gracie - We will always love you  - "Always & forever"  and we will take you with us in hearts and thoughts for the rest of our lives.    Keep sending us signs!!

Love, Grammie

Is there a Reason this happened?

Recently there were a few more anti-depressant drugs listed as causing pulmonary hypertension in babies - there is a class action law suit.  One of these drugs was prescribed by the OB to Katie, who took it for 1 month and then stopped it.  Now they say she didn't take it soon enough  - she took it in her 3rd. month. 

I don't know that I believe that, as there is no history or reason for this to have been caused.  I know many birth defects happen w/out history or specific cause -but this is just too coincidental  - I believe it.  Katie asked Gracie's U of M DR and received the statement that he couldn't say whether it was or was not.  What I do know is - if he thought it was not or could not be caused by this drug - he would have said it.  So he may not know for sure or at all - but he definitely couldn't say it was not. 

I know my daughter is struggling with this - feels like no one cares about her daughter's life and once again, I can't make her pain go away.  I also know that even if this drug caused it - it is a hollow victory because it wont change where we are at today - Gracie is gone - almost a year now and we miss her everyday and nothing or no one else can change that cold, hard fact. 

It would give us peace of mind of course if we knew it were true and knew it wasn't hereditary.  The only silver lining in this whole ordeal. 

So I guess the lesson is to always question your doctors decisions and really challenge them if what they prescribe or give you,  is the right decision for you.

I am struggling as I approach the 1 year mark - I have seen where some mom's call it the "angelversary".  Which is better then anniversary which is associated with good things.  It seems like a lifetime ago and at the same time it feels like yesterday.    Driving to work I realized  that for as much as I have been reliving it all this past year - I had not thought much about the last week of her life - it was very stressful as she was having so many episodes.  I remember walking in and they had all the needles lined up on the bed right beside her and a pacemaker taped to the middle of her chest for quick access.  She would just DSAT so quickly and was having a hard time coming out of them, they had to give "epee-spritzers" as they called them,  she was having a hard time w/her temperature, lung collapsing and infection was beginning.  They tried turning her and they put in tubes in her side, but she couldn't handle being turned and the tubes were only another source of infection to hide out it. 

Things were so stressful for Katie and Michael.  We had one doctor (who we didn't care for) who was pushing for Katie to sign a DNR form - the doctor talked to me and wanted ME to understand how ill Gracie was and to convince my daughter how ill she was.  He implied that she was probably brain dead or damaged - but that wasn't the case as the brain scan proved.  He wanted us to stop treatment - but we weren't ready - He really had no idea how difficult it is for a parent to make that decision.  It may have made perfect medical logic - but there is no logic when a parent is faced with this type of decision.   Nothing about losing a child is logical.    Other doctors were more supportive, they told us the odds were extremely slim that she could recover, but they also said that we should not lose hope.  And so a few more days came and went - it was good day when she only had 2 or 3 episodes.... but it was really a never a good day for Gracie.   Although you could feel the time was soon - you still hoped something, anything would happen to STOP what was happening.    I fully understood how you become so willing to do anything to save her - you will accept anything if it will give her 1 more day or hour - everything you have inside is willing this child to live and yet deep down you know you are fighting a losing battle... but you know for this moment it isn't lost yet.    It is amazing what our hearts and minds do during these times - you think and say things that you can't even believe it is coming from you.    You pray for a miracle and feel guilty because all the children there needed one too. 

Hard to believe almost a year and life continued for everyone - even though a part of us died with her.  Sometimes I wish I would dream about her, so I could see her again and hold her again - even if it is only a dream - I would love see her again without  the tubes and hold her close to me.   

Fly high with all the Angels Gracie - You are not forgotten, You are loved everyday!!

Mother's Day

Yes Gracie you were on minds today -both mine and your Mother's.  Last year was her first Mother's Day with you and this is the first without you.  Last year on Mother's day you were in the hospital - I bought you some toys since you were a little bored  - we suspect you were teething also.  You ate like a little piggy - we laughed at the amount of formula you drank.   Then you relaxed and went to sleep - Then I took Katie and Michael out to dinner, thought it would be good to get them away for a little bit...finally found a restaurant after wandering through the town we didn't know. 

When we got back you were resting but woke up some - you were having the MRI the next day.   You wanted more to eat but they wouldn't let us feed you because of the test, so you were a little fussy and making the one nurse a little nervous since you were upset and getting a little clammy feeling.  But we finally got you calmed down, I rocked you to sleep.   The next morning was your test and we held you for the last time, while you were wake.  When you returned from the MRI you were on a ventilator and your heart/lung was in great distress - that test took so much out of you. 

I have always regretted not spending every minute with you that day - we just didn't think it was our last chance at seeing you awake, happy & smiling - We labeled you the princess of the ICU since the nurses had been taking you for walks in a stroller and putting ribbons in your hair and stopping by to talk with you.  All of the other babies there were very small and not in a condition to be able to do that.   I am so sorry we left you for awhile that day and have wished so many times for those few hours and minutes back - even if only to watch you sleep, waiting for you to wake.  I would never have given up that precious time with you if I had known.  I have always felt guilty about that. 

We watched all the other Moms that day come and spend time with their babies and my heart was saddened for all of them.  It was extremely humbling to know that everyone there needed a miracle and you prayed for all of them even though you did not know there names.  One of the mom's said goodbye to her baby that day and another child was brought in w/brain cancer, but miraculously survived 19+ hr. surgery and recovered.

It was a heartbreaking place and a miraculous place and those that work there have my utmost respect and admiration. 
                                                                                   Mom (Katie) & Gracie on Mother's Day 2009
Your Mom, brother, Papa and I went out for dinner today.... we brought you with us in our hearts and minds.

We love you Gracie...always and forever!!                                

11 Months....

Tomorrow Gracie will have been angel for 11 months -   One year ago today Gracie was rushed to the hospital from her doctor's office - she was in for a regular checkup and they heard a heart murmur and she had low oxygen.  We were scared and confused and had no idea how life was going to change.  They couldn't hear her heart murmur at the hospital and they said that was "normal" with babies - but they sure didn't know why her oxygen levels were low......  We wouldn't know until the following day.... Gracie did not want to be in bed, she wanted to be held - she was bigger now and wanted to be moving  or a minimum be held- this was a big difference then when she was in for RSV -   We sure didn't any answers on this day - so I went home and looked up on WEBMD - low oxygen for infants and it immediately indicated a heart issue - that quick and the hospital wasn't sure?  

They did a ecocardiogram the following afternoon.... Gracie did not like being still...finally after singing and rubbing her head she fell asleep and after 90 minutes - they asked us to go in to a different room... I knew then it was serious, but still clueless as to how serious it would be.  What I remember is just before the Dr. came in - I went back in to Gracie's room and I heard an intern turn to the cardiologist and say - how did we miss this when she was here before?  My fear increased at that moment and when I went back to the other room I took my daughter's hand...and waited.   

I remember that the 2 doctors came in and then then the nurse with a Kleenex box - the lump in my throat grew.    The doctor drew a heart and explained that she had 2 holes between the upper chambers - I knew this could be fixed and waited for more news.  Then he said - I am not concerned with the 2 holes, actually it is helping her right now.  The arteries in her left lung are extremely small and she has sever pulmonary hypertension -  and then he said, there is some medicine, but it is very severe and there is no cure....  We will send her to Uof M - Mott children's hospital.  I am sorry but it doesn't look good.    We didn't even know what questions to ask - we simply held on the heart drawing, cried, held on to each other  - We were in SHOCK - speechless.   Then we walked back in to Gracie's room and looked at this sweet baby and wondered how, why.  We wanted to grab her and run - like that would make a difference.  How could this happen.  I had to have hope and I had to give hope to my daughter. 

This was the beginning of our journey to say goodbye.  I am amazed that 1 year later and I can still feel it like it was this minute - the shock and disbelief.   I fully understand that people can only take in so much during these types of situations - we just didn't ask a lot of questions and felt dumb at not knowing what to ask or say.  Hoping they were wrong - this could not be happening - these horrible things are the things you read about and they happen to other people - but now it was our journey to take.   


The 1 year anniversary is approaching fast and I find myself resisting it as much as I did her 6 month anniversary and birthday.  Amazing how raw the pain can still be at times and I am always left with that it feels like forever and it feels like yesterday at the same time. 

Most people think it is morose to relive these memories - but you can't help yourself and it would feel very dismissive/disloyal/ etc. to not remember.   But the truth is that you don't have to work to remember you just do - it is always there and will be always.

Gracie you are loved and missed daily - always and forever.  Fly with the angels.

Time....

Time is a funny thing - sometimes it goes by slowly, almost never ending or so it seems.
Then time can go so fast, that events, life and people are gone way before you are ready for it to end.
There was a time when we held you in our arms and kissed your sweet face.
Now we hold you our hearts and look at pictures of you. 
There will be a time, when we be together again and then we will really have all the time we need.

So the question has been asked - why do always say   "always and forever"  -  I whispered this to Gracie every day while she was in the hospital and promised that we would love her and remember her... always and forever!!

10 months ago

Well Gracie was with us this weekend and I believe God sent us (Katie & I ) messages.   I watched the video from last Easter - watched Gracie about 10 times -  a simple 3-4 minute segment and then another quick 20 seconds and I could hear her coo.  I think it will be great for Wayne some day to see a little "blip" at least of his sister smiling and happy.   Amazing that only 7 weeks later - she was gone. 

This Easter there were several surmmons on losing a child as Mary watched her son crucified and waited at the bottom of the cross until he took his last breath.  How she had to watch as he was scourged and nailed to a cross - I felt that way as we kept learning there was no hope for Gracie.  I  however could never have given her up for the sake of others... I am just too selfish.  

Easter brought beautiful weather and we were able to play outdoors with all the grandkids.  At one point when it was a little crazy with all of them - someone said - aren't you glad you don't have 5 more .....  all I could think of was  NO - I should have 1 more here right now - toddling around and wondering what those eggs are for.  I tried so hard to imagine it and couldn't create her image - but I did feel the warm spot in the center of my chest... she was there - but not the way I wanted her to be.    She has been gone 10 months tomorrow - 10 very long months and yet the pain feels like it was yesterday at times.

The month of May will bring about all the memories of the time we spent at Mott and the countdown to the end.   Sometimes it is still so incredibly unbelieveable that this smiling, happy baby entered there and 3 days later was on a vent after an MRI and never could recover and the surgery afterwards, although successful in an of itself, couldn't save her.  Nothing they did worked.  

Love you Gracie - always in our hearts and minds.

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. 

13 months

It has been a long time since I have entered a post - not that I still don't think of her every day, because I sure do. 

Gracie would have been 13 months old today - her brother's birthday is tomorrow and he will be 4 years old.    Recently he got up from his nap and didn't know that there was a neighbor's baby sleeping at his house in another room.  When the baby woke up and started to cry - Wayne said, "we got another Gracie" - I sure wish I could know and understand what goes through his little mind.   What does he think happened to her?  We've told him the truth but what is death to a 3 year old?  He still thinks of her at the hospital and that he doesn't see her anymore.    I am amazed at how often he brings up Gracie's name or relates things to her and mentions her.

Sometimes I think it is really sad he is too young to understand and then sometimes I think ignorance is bliss - but then I wonder if he will suffer any impacts from all of this.

Katie really struggled after the holidays and she keeps trying to make it better - she is going to a counselor on Monday, but not really to talk about the loss of her daughter but to get medicine for her A.D.D.  We'll see if it helps her.  She is so afraid to talk about it and let it out - she says it is because it doesn't change anything, but the build up she has inside of her will eventually need to be let out.

I made the donation to Ronald McDonald house of Ann Arbor in Gracie's name.   They were wonderful and I am grateful it was there for us for so many reasons.  I can't imagine what people would do without a place like that. 

I have so many things going through my mind but nothing I want to write about at this time. 

As always... I love you Gracie - Always and Forevr!!

2010 A New Year - Carrying 2009 with me.

As each new year comes - it seems everyone takes time to reflect on the past year and sometimes you want some of the moments back and othes you are glad they are behind you.   I can honestly say that 2009 has been the absolute hardest year of my life and I know the it is the same for my daughter.  However, a simple turn of the page of calendar doesn't take away all we have been through and I know it is not "over or behind us" - it is always with us and we continue the grieving process. 

In February we will make our annual trip to the U.P. for the Winter Carnival at my step daughters College - these kids build absolutely amazing snow sculptures.   But what keeps coming up for me is that last year on that weekend is when we got the call that Gracie wasn't feeling good, seemed like a bad cold and then she started to vomit - so I told Katie to take her in to be checked out.   Well Gracie was diagnosed with RSV and it was serious.  We headed home on Monday and went straight to the hospital - she was just shy of 6 weeks old.  Going in to that hospital room that evening, she was on oxygen and looking up at me and you could tell not feeling well.  I got to hold her but she was having a hard time breathing and they had me hold an additional O2 mask by her face and it would bring up her levels.    I was worried, but had no idea what we were in for.  The next morning Katie called and said they were putting her on the ventilator to help her breathing - I headed straight for the hospital and when I got there she was intubated.  I couldn't believe it.  The doctors kept saying it just takes time and that w/RSV you never know how long or where you are at on the roller coaster.  After awhile I sent Katie home for a bit - about 20 minutes after Katie left, Gracie turned blue, her levels dropped, heart rate dropped and they had to work on her to bring her back up - That was the scariest moment in my life to that point - I asked the nurse if she was going to make it and she said they really didn't know.  Wow - I couldn't breath - I didn't know what to say or do- I couldn't imagine her dying, it couldn't happen.    I think I sat there in shock for awhile.    Then they came in and decided to move her to ICU and there was a nurse with her at all times for the next 3 weeks.   After another "semi-crash" the doctor came in and said - I think this will get alot worse before it gets better and I think we are in for a very long haul.   Again it was like a smack across my face - worse??  how much worse for heavens sake she already has crashed twice and she is hooked up to kinds of IV's, ventilator, put in a medical coma so she remains calm and now they were talking about paralyzing her too - my mind could not comprehend it all. 

We had no idea that road we were beginning to travel would wind up where it did.  So for the next 3 weeks - we spent endless hours at the hospital and watched her struggle countless times and watched and prayed for her monitor's to show the right #'s and held our breaths that when they had to rescue that she would return to us.     In retrospec - it was nothing compared to what would follow in May.  But she fought so hard to stay alive and through it all they NEVER discovered her congenital heart & lung defect - Does anyone else think this is wrong.     How do you have a sick baby - whom you are doing daily lung x-rays on and can't see that there is something wrong with one of her lungs - never detected any heart sounds and she had 2 holes in her heart.   Couldn't hold her O2 levels very well even after she was declared free of RSV and no one checked for a heart or lung issue....I know that they arteries/blood vessels are very small - but come on - If I can type in low oxygen infant on WEB MD and get a heart issue - then why didn't they do more.   Yes she had RSV but it was the defects that she had that allowed it be so bad.  

I guess I also feel guilt - why didn't push for more?  What could we have done more?   I didn't think to look for low oxygen until she was hospitalized in May..   Even they day they discovered it - I happened to walk back in to her room when one of the interns turned to the heart doctor and said - how did we miss this when she was here before?    Well they never did an echo then, but they should have - should have checked everything.   

When Katie took in back in the end of March because she was having problems breathing - they said no she is fine - just keep giving her breathing treatments.  They didn't do any further tests - really  - is it that normal for a then 3 month old to have trouble breathing - a month after RSV?    We had doctors at UofM tell us that she may have had a chance if Covenant had diagnosed her in February - none of them could believe that they didn't diagnose this when she had RSV - more like appalled by it quite frankly. 

Today while reading one of the other moms blogs - I found out that one of the other babies that was in Gracie's room when she first came in had passed away this year too.  I guess it just made me feel the pain for them again too and know that this Christmas - 3 out of the 4 babies in that room are gone and understand the pain we are all feeling.  

So it is a new year and I pray for a peace filled, healing, loving year.  The grieving process will continue for some time to come, but I will continue to keep Gracie inside my heart forever. 

Love you Gracie!!