but then you add a two year old and I was lucky to run to the bathroom for a potty break without him trying to escape out the door down the hall!!!
The sweetness of 16
7 months ago
Monday, July 23, 2012
Fontan
I guess I expected our hospital stay to be like the rest with a little to time to post and take photos.....
but then you add a two year old and I was lucky to run to the bathroom for a potty break without him trying to escape out the door down the hall!!!
Before Versed
After versed .......he was happy to be in the box funny boy
Minutes after coming out of surgery ........................when I finally took a breath
Our time spent in the CICU....... we took turns with our baby to make sure he didn't pull everything out
Up to the floor day 3 ............. amazing little man
Minutes after his chest tubes where removed!!!
He loved his water and he loved being a big boy
On our way home 7 days later what a week!!!
At home on his pillow with his basket ball Love you so so much my little man
Here are the photos I was able to get while I could to document this time and operation for us not for get what he has gone through and to treasure for every minute of his life
but then you add a two year old and I was lucky to run to the bathroom for a potty break without him trying to escape out the door down the hall!!!
Thursday, June 28, 2012
ITS ALIVE
I have my computer back !!!! I am so happy to have this working again and now I can post pictures of my crazy wild man that keep me so busy that I cant take a breath!!!!
Coming soon Pictures YEAH!!!
Coming soon Pictures YEAH!!!
Tuesday, June 5, 2012
Life
Life
Lately I've struggled with a few things that keep on popping there ugly head up in my life !!!!
I've decided that I need to protect me and have taken this motto to life
I hope all that follow me and my little Connor will read this and will do the same
People are often unreasonable, irrational, and self-centered.
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives.
Be kind anyway.
If you are successful, you will win some unfaithful friends and some genuine enemies.
Succeed anyway.
If you are honest and sincere people may deceive you.
Be honest and sincere anyway.
What you spend years creating, others could destroy overnight.
Create anyway.
If you find serenity and happiness, some may be jealous.
Be happy anyway.
The good you do today, will often be forgotten.
Do good anyway.
Give the best you have, and it will never be enough.
Give your best anyway.
In the final analysis, it is between you and God.
It was never between you and them anyway.
-this version is credited to Mother Teresa ____________________________
Life is always hard but I chose to live it
Love Iv
I've decided that I need to protect me and have taken this motto to life
I hope all that follow me and my little Connor will read this and will do the same
People are often unreasonable, irrational, and self-centered.
Forgive them anyway.
If you are kind, people may accuse you of selfish, ulterior motives.
Be kind anyway.
If you are successful, you will win some unfaithful friends and some genuine enemies.
Succeed anyway.
If you are honest and sincere people may deceive you.
Be honest and sincere anyway.
What you spend years creating, others could destroy overnight.
Create anyway.
If you find serenity and happiness, some may be jealous.
Be happy anyway.
The good you do today, will often be forgotten.
Do good anyway.
Give the best you have, and it will never be enough.
Give your best anyway.
In the final analysis, it is between you and God.
It was never between you and them anyway.
-this version is credited to Mother Teresa ____________________________
Life is always hard but I chose to live it
Love Iv
Saturday, May 26, 2012
Beautifully written
First I have to say if there are any grammical errors I have had to write from my phone since my computer crashes and in perfect time since I had to leave work and money has been tight so please ignore any missing letters etc the phone doesn't let me go back and correct !!!
I don't know about you but I blog stock it's interesting to see others experience this heart world and know youre not alone or crazy!!!
This blog is about bodie he's amazing and his mom as a writer is fantastic and can explain to the details of my heart and life
I wanted to share newest post it hits home and to the core an even though we are recovering from the fontan it still is there so please read on she is amazing
Amy thank you for writing
Yesterday, a relative of Dusk's forwarded me a link to an article in his local newspaper, about parents who had started a nonprofit foundation in memory of their daughter Lauren, who had passed away from a Congenital Heart Defect. He sent it to me, saying that although the article was tough to read, the family was trying to make some good out of something terrible and had started a foundation and it made him think of me. It meant a lot to me that he thought to send me the article. I linked to the article and started reading. It took me just a few minutes to realize that this sweet little 3-year old girl had Hypoplastic Right Heart Syndrome (the opposite of Bodie - she only had the left side of her heart - different first surgery, same second and third surgeries, better outcomes generally as you're working with the stronger side of the heart) and that she had passed following her third surgery, the Fontan...the very same surgery Bodie is gearing up for. My heart literally stopped when I read that. It's not often that kids pass after the Fontan (most of the top surgical centers have survival rates between 95 and 99%). But it does happen. Typically the kids have other complicating factors, but not always. I found the girl's Caring Bridge site...and was met with photos of the sweetest little 3-year old girl you could imagine, smiling up at the camera just like any other carefree 3-year old. I scoured her site, looking for complicating factors, things that would make her higher risk, that would explain why she passed in a way that would mean it couldn't happen to Bodie. (Not that complications make it any easier when it's your child who passes, but only that it makes it easier for me to distance myself.) I came up empty-handed. She wasn't complicated. Her Norwood went pretty smoothly and her Glenn went smoothly. She spent the time between her Glenn and Fontan living a pretty normal life, just like Bodie. She geared up for her Fontan, the pinnacle of the surgical route hypoplasts must take, the make-or-break it surgery, where the land of milk and honey lies on the other side, the land of "no anticipated interventions for the foreseeable future." Her surgeon and surgical center were top notch. Her parents sent her into her Fontan fully expecting her to recover well from that surgery as well. They had no reason not to. Her Fontan went off without a hitch - the surgeon came out and told the family it had been a textbook Fontan. They saw their sweet girl transported into the Cardiac ICU, with the attending nurses and docs all saying how great she looked. Moments later, everything changed. They were called into a private room, with doctors and chaplains and told that something had happened. The mom actually said that no, she thought for sure they had the wrong family, that they had just seen their daughter and everything was fine. But it was the right family, and their sweet girl had had an arrhythmia and gone into cardiac arrest. They had to re-open her chest, do chest compressions and place her on ECMO. She came off ECMO a couple of days later, but they had to let her go shortly after that. To be honest, the site doesn't give a lot of details, but I assume it was brain damage from the time spent doing CPR. When I read stories like this, I literally cannot breathe. My chest tightens. My world starts spinning and I get nauseous. (Anxiety attack? Yes, please.) I run to hug Bodie, to cling tightly to him, begging God to "please let me keep my son. Please don't take him from me." It is impossible to explain the sheer amount of death and sadness around me all the time, being so deep into the heart community where warriors are turned into angels suddenly, unfairly, irreplaceably fast. But reading stories like this, of a child doing so well and then, just, inexplicably gone, as a result of a surgery that Bodie still has to have makes it so.much.worse. It is every fear of mine wrapped up in a pretty little box with a nice shiny bow. Pretty fantastic, right? I recently read a book written by a fellow heart mom about her journey with her son born with a complex heart condition. Although much of her experience was truthfully vastly different from my own, her discussion on anticipatory grief was dead on. Anticipatory grief refers to a grief reaction that occurs before an impending loss. The thing is, with heart moms, our loss isn't impending - it's hypothetical. It might happen. But it might not. Our kids might be gone tomorrow. Or they might live to be 100. But there is all kinds of grief wrapped up in just the thought that the loss might happen, that it is much more likely to happen with a child who has a congenital heart defect than a child with a healthy heart. But then I KNOW I should feel lucky that I still have Bodie and not let my mind get wrapped up in any grief - if it comes, it'll come soon enough. So then, I get to add a fun layer of guilt into the grief. It's truly impossible to explain to someone who hasn't walked this path. But trust me, to someone who has walked this path, it makes 100% perfect sense. You see sweet heart warriors become angels all the time around you. Why wouldn't/couldn't it happen to your child, to your family? So why am I writing this? I'm writing this to ask for understanding. For an understanding of the sort of mindset a heart mom finds herself in. For extra prayers for our family during this time period leading up to Bodie's Fontan. I know we still have a ways to go (probably another year or so, unless Bodie has other plans), but truthfully, I know I won't fully exhale until we're post-Fontan. So, if I'm a bit neurotic (you know, more than usual), a bit more emotional, a bit more tough to handle, please understand why. I think I'm pretty good at "letting go and letting God" and trusting that ultimately, HE is in control, not me - but, as a human, as a mom, I am daunted by the thought of another open-heart surgery. I am afraid every.single.day that my son won't make it through this surgery, that my grief will turn from anticipatory grief to real, true grief. That, like Lauren's mom, I'll be left only with memories of my sweet toe-haired boy who once walked among us for far too short a time. And we have so many heart friends approaching their Fontans this summer that I get to live with this constant Fontan-reminder and the accompanying anxiety attacks. So, yeah, if you have the time to spare, send some prayers up for our family - and all of our heart warrior friends. And especially, most especially, for this sweet little guy. Because I want a lot more moments like this in our future...
I don't know about you but I blog stock it's interesting to see others experience this heart world and know youre not alone or crazy!!!
This blog is about bodie he's amazing and his mom as a writer is fantastic and can explain to the details of my heart and life
I wanted to share newest post it hits home and to the core an even though we are recovering from the fontan it still is there so please read on she is amazing
Amy thank you for writing
Yesterday, a relative of Dusk's forwarded me a link to an article in his local newspaper, about parents who had started a nonprofit foundation in memory of their daughter Lauren, who had passed away from a Congenital Heart Defect. He sent it to me, saying that although the article was tough to read, the family was trying to make some good out of something terrible and had started a foundation and it made him think of me. It meant a lot to me that he thought to send me the article. I linked to the article and started reading. It took me just a few minutes to realize that this sweet little 3-year old girl had Hypoplastic Right Heart Syndrome (the opposite of Bodie - she only had the left side of her heart - different first surgery, same second and third surgeries, better outcomes generally as you're working with the stronger side of the heart) and that she had passed following her third surgery, the Fontan...the very same surgery Bodie is gearing up for. My heart literally stopped when I read that. It's not often that kids pass after the Fontan (most of the top surgical centers have survival rates between 95 and 99%). But it does happen. Typically the kids have other complicating factors, but not always. I found the girl's Caring Bridge site...and was met with photos of the sweetest little 3-year old girl you could imagine, smiling up at the camera just like any other carefree 3-year old. I scoured her site, looking for complicating factors, things that would make her higher risk, that would explain why she passed in a way that would mean it couldn't happen to Bodie. (Not that complications make it any easier when it's your child who passes, but only that it makes it easier for me to distance myself.) I came up empty-handed. She wasn't complicated. Her Norwood went pretty smoothly and her Glenn went smoothly. She spent the time between her Glenn and Fontan living a pretty normal life, just like Bodie. She geared up for her Fontan, the pinnacle of the surgical route hypoplasts must take, the make-or-break it surgery, where the land of milk and honey lies on the other side, the land of "no anticipated interventions for the foreseeable future." Her surgeon and surgical center were top notch. Her parents sent her into her Fontan fully expecting her to recover well from that surgery as well. They had no reason not to. Her Fontan went off without a hitch - the surgeon came out and told the family it had been a textbook Fontan. They saw their sweet girl transported into the Cardiac ICU, with the attending nurses and docs all saying how great she looked. Moments later, everything changed. They were called into a private room, with doctors and chaplains and told that something had happened. The mom actually said that no, she thought for sure they had the wrong family, that they had just seen their daughter and everything was fine. But it was the right family, and their sweet girl had had an arrhythmia and gone into cardiac arrest. They had to re-open her chest, do chest compressions and place her on ECMO. She came off ECMO a couple of days later, but they had to let her go shortly after that. To be honest, the site doesn't give a lot of details, but I assume it was brain damage from the time spent doing CPR. When I read stories like this, I literally cannot breathe. My chest tightens. My world starts spinning and I get nauseous. (Anxiety attack? Yes, please.) I run to hug Bodie, to cling tightly to him, begging God to "please let me keep my son. Please don't take him from me." It is impossible to explain the sheer amount of death and sadness around me all the time, being so deep into the heart community where warriors are turned into angels suddenly, unfairly, irreplaceably fast. But reading stories like this, of a child doing so well and then, just, inexplicably gone, as a result of a surgery that Bodie still has to have makes it so.much.worse. It is every fear of mine wrapped up in a pretty little box with a nice shiny bow. Pretty fantastic, right? I recently read a book written by a fellow heart mom about her journey with her son born with a complex heart condition. Although much of her experience was truthfully vastly different from my own, her discussion on anticipatory grief was dead on. Anticipatory grief refers to a grief reaction that occurs before an impending loss. The thing is, with heart moms, our loss isn't impending - it's hypothetical. It might happen. But it might not. Our kids might be gone tomorrow. Or they might live to be 100. But there is all kinds of grief wrapped up in just the thought that the loss might happen, that it is much more likely to happen with a child who has a congenital heart defect than a child with a healthy heart. But then I KNOW I should feel lucky that I still have Bodie and not let my mind get wrapped up in any grief - if it comes, it'll come soon enough. So then, I get to add a fun layer of guilt into the grief. It's truly impossible to explain to someone who hasn't walked this path. But trust me, to someone who has walked this path, it makes 100% perfect sense. You see sweet heart warriors become angels all the time around you. Why wouldn't/couldn't it happen to your child, to your family? So why am I writing this? I'm writing this to ask for understanding. For an understanding of the sort of mindset a heart mom finds herself in. For extra prayers for our family during this time period leading up to Bodie's Fontan. I know we still have a ways to go (probably another year or so, unless Bodie has other plans), but truthfully, I know I won't fully exhale until we're post-Fontan. So, if I'm a bit neurotic (you know, more than usual), a bit more emotional, a bit more tough to handle, please understand why. I think I'm pretty good at "letting go and letting God" and trusting that ultimately, HE is in control, not me - but, as a human, as a mom, I am daunted by the thought of another open-heart surgery. I am afraid every.single.day that my son won't make it through this surgery, that my grief will turn from anticipatory grief to real, true grief. That, like Lauren's mom, I'll be left only with memories of my sweet toe-haired boy who once walked among us for far too short a time. And we have so many heart friends approaching their Fontans this summer that I get to live with this constant Fontan-reminder and the accompanying anxiety attacks. So, yeah, if you have the time to spare, send some prayers up for our family - and all of our heart warrior friends. And especially, most especially, for this sweet little guy. Because I want a lot more moments like this in our future...
Tuesday, May 15, 2012
Whirlwind of a life
So today marks two weeks since his surgery and one week home it's no surprise my little whirlwind has kept me so busy I haven't had the time to write down all that has gone on!!!
At the hospital it was so different then The last surgery he had some down time when he would sleep not this time once they pulled his chest tubes he was off and running down the halls from sun up to sun down and sometimes in the middle of the night !!!
I didn't have a chance to do much but run with his oxygen tank behind him as he ran his marathon in primary children's Have I said what a amazing boy he is two days after surgery he was out of the CICU on to the recovery floor and day three chest tubes out ten minute later running not walking down the halls
Day 7 we were on our way home with 4 Meds and oxygen which I foundly call Fred
since Fred hangs on me all day while my whirlwind runs around the house
We have been busy tryin to keep Connor untangled from His oxygen cord and getting my baby girls birthday ready which is today
she is 4 can you believe that and we built her a dream playhouse and my aching body is here to pay for it
two days of painting and building and buying this little project turned into a huge one
Connor is doing good only a few bad nights which are sad he says awie and holds his chest makes my heart break for him
Wednesday is check up day to make sure the fluid is gone and maybe to loose Fred the tank
Pray for a good appointment and rest for me I am so so worn out
I want to thank my family and my mom and dad for their love and care while we were in the hospital there wasn't a day my mom didn't come to see me
she drove down everyday to be with us I love you mom more then words can say !!!
At the hospital it was so different then The last surgery he had some down time when he would sleep not this time once they pulled his chest tubes he was off and running down the halls from sun up to sun down and sometimes in the middle of the night !!!
I didn't have a chance to do much but run with his oxygen tank behind him as he ran his marathon in primary children's Have I said what a amazing boy he is two days after surgery he was out of the CICU on to the recovery floor and day three chest tubes out ten minute later running not walking down the halls
Day 7 we were on our way home with 4 Meds and oxygen which I foundly call Fred
since Fred hangs on me all day while my whirlwind runs around the house
We have been busy tryin to keep Connor untangled from His oxygen cord and getting my baby girls birthday ready which is today
she is 4 can you believe that and we built her a dream playhouse and my aching body is here to pay for it
two days of painting and building and buying this little project turned into a huge one
Connor is doing good only a few bad nights which are sad he says awie and holds his chest makes my heart break for him
Wednesday is check up day to make sure the fluid is gone and maybe to loose Fred the tank
Pray for a good appointment and rest for me I am so so worn out
I want to thank my family and my mom and dad for their love and care while we were in the hospital there wasn't a day my mom didn't come to see me
she drove down everyday to be with us I love you mom more then words can say !!!
Wednesday, May 2, 2012
The big day
The big day was yesterday my little brave man went in for his third surgery and it was te hardest thing to do to trust in god and let Dr Kaza do what he does best the updates came every two hours to let us know what was going on but my heart would stop every time they called
The surgery was just under 6 hours and he is doing great alittle confused and keeps on saying mama me baby and he wants to leave
Last night was long but I thank god for every minute and for the amazing fact that they could save my son!!!!
I am forever grateful to the amazing staff at primary's children's
Ill update as I can but for now I leave you with a beautiful poem my sister sent me have I mentioned how amazing wonderful and supportive my family is my blessings are many
“I prefer by far the warmth and softness to mere brilliancy and coldness. Some people remind me of sharp dazzling diamonds. Valuable but lifeless and loveless. Others, of the simplest field flowers, with hearts full of dew and with all the tints of celestial beauty reflected in their modest petals.” ― Anaïs Nin
Heart hugs and pray for a fast recovery for my little brave baby
The surgery was just under 6 hours and he is doing great alittle confused and keeps on saying mama me baby and he wants to leave
Last night was long but I thank god for every minute and for the amazing fact that they could save my son!!!!
I am forever grateful to the amazing staff at primary's children's
Ill update as I can but for now I leave you with a beautiful poem my sister sent me have I mentioned how amazing wonderful and supportive my family is my blessings are many
“I prefer by far the warmth and softness to mere brilliancy and coldness. Some people remind me of sharp dazzling diamonds. Valuable but lifeless and loveless. Others, of the simplest field flowers, with hearts full of dew and with all the tints of celestial beauty reflected in their modest petals.” ― Anaïs Nin
Heart hugs and pray for a fast recovery for my little brave baby
Tuesday, April 17, 2012
A whole lot of this and that
Where have we been..... Connor decided that he would like to postpone the cath for let's say two weeks and catch a little cold!!!
n
So we were a no show for the 9th after a few hours on the phone I finally have him rescheduled for the 24th one week befor his surgery dat May 1st!
So in the mean while we received a gift of love called bailey our sweet little emontinal support dog a gift for us to help connor heal from a neat family that trains the puppy's and then loans them out !!
We had a week with bailey and it reminded me why I don't need another thing to look after sweet dog lots of work so bailey went home and the kids had their dog for a fun week thank heavens it was a loaner!!!
We had some really fun things happen sprinkler line burst had to rip up all our flag stone and fix and replace all of the flag stone and we are still working on it
My laptop is kapute along with all my photos music etc so so upset just need a hard drive 300.00 or so money money money
Also u of u sent all my bills to collections even though it was on a payment plan so now I have to fight them or if I come up with full amount no worries they'll Wipe it clean great company if any of you make arrangements with the u for medical bills get it in writing
Just add taking time off for preparation for the first cath and then scrambling to get time off two weeks later
I have decided to hate money it has been hard not to stay in bed all day but it's only money
I will just plant a money tree lol
Pray for us to win the lottery Most of all pray for con that's all that matters
Walk by faith not by sight !!!!!!
So we were a no show for the 9th after a few hours on the phone I finally have him rescheduled for the 24th one week befor his surgery dat May 1st!
So in the mean while we received a gift of love called bailey our sweet little emontinal support dog a gift for us to help connor heal from a neat family that trains the puppy's and then loans them out !!
We had a week with bailey and it reminded me why I don't need another thing to look after sweet dog lots of work so bailey went home and the kids had their dog for a fun week thank heavens it was a loaner!!!
We had some really fun things happen sprinkler line burst had to rip up all our flag stone and fix and replace all of the flag stone and we are still working on it
My laptop is kapute along with all my photos music etc so so upset just need a hard drive 300.00 or so money money money
Also u of u sent all my bills to collections even though it was on a payment plan so now I have to fight them or if I come up with full amount no worries they'll Wipe it clean great company if any of you make arrangements with the u for medical bills get it in writing
Just add taking time off for preparation for the first cath and then scrambling to get time off two weeks later
I have decided to hate money it has been hard not to stay in bed all day but it's only money
I will just plant a money tree lol
Pray for us to win the lottery Most of all pray for con that's all that matters
Walk by faith not by sight !!!!!!
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