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
Friday, March 19, 2010
Thursday, March 18, 2010
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
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.JPG)
Gracie Lou Lavoie
Earned her Wings
June 7th, 2009
She is now a PERFECT Angel
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I pray that some one hears the hearts of these children and the sounds of all the tears that have been shed.
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
.JPG)
.JPG)
Gracie Lou Lavoie
Earned her Wings
June 7th, 2009
She is now a PERFECT Angel
.JPG)
.JPG)
I pray that some one hears the hearts of these children and the sounds of all the tears that have been shed.
Monday, March 15, 2010
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.
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.
Tuesday, February 23, 2010
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!!
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!!
Thursday, February 11, 2010
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.
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.
Tuesday, January 19, 2010
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!!
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!!
Friday, January 1, 2010
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!!
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!!
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