Last night I had a dream that I was running around this big city and I couldn't find my way. I was afraid, lost, but refused to give up. I woke up and kind of chuckled how that dream so truly reflects the past 5 months.
It's hard to beleive that Alex would be 5 months old now. He would be a "real baby" as I like to call babies that are no longer lazy newborns, but are playing and learning. I cannot picture him 5 months old. He is truly forever a newborn to me.
I've been very busy. The parade preparation is taking a lot of my time. Bears had to be shipped yesterday, summer in a tourist town is hectic anyway. The kids have been running from one summer school activity to another.
Wednesday I had lunch with another heart mommy. The first I've met in this area. It was so nice to just talk and have someone actually GET what I was talking about! Thankfully her sweet daughter is a survivor, but it seems she still went through some feelings of loss, loss of the child they excpected maybe. No one ever really thinks thier child will be born sick, especially when the pregnancy doesn't indicate anything like that. Anyway, we are going to work on implementing a support group in our area.
Well, the work is never done!
Showing posts with label Congenital Heart defects. Show all posts
Showing posts with label Congenital Heart defects. Show all posts
Friday, June 30, 2006
Thursday, June 22, 2006
I don't understand
It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.
The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.
It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!
The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.
It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!
Wednesday, June 7, 2006
Rest in Peace baby Tyler
Last night I had the honor of being in attendance as Tyler earned his wings and went to be with God and Alex. It was a very moving, spiritual experience. The 'wonder twins' are together again, for eternity.
Godspeed little Tyler, I am forever grateful for the opportunity to know you.
Godspeed little Tyler, I am forever grateful for the opportunity to know you.
Friday, June 2, 2006
Fear through anothers eyes
So, someone stole the flowers off Alex's grave that my mom put there for memorial day. How nice is that? Stealing flowers from a deceased person is bad enough, but a BABY? Do people have no morals?
Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.
Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.
And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.
Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.
Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.
And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.
Saturday, April 22, 2006
Quality of life
So I was thinking today about the possibility of having another child and I realized, I don't want another child. I want Alex. I love my 5 living children dearly, but no other child in the world is as special as Alex was and even if we have 20, there will always just be this special person who isn't with us. It isn't that i wanted a sick child, that I wanted to have to worry every day of my childs life that it might be his last, but we were so willing to take on whatever God had planned for us with him. I remember after his second surgery one of the cardiologists came to talk to us about the fact that they found the 2 small bleeds in his brain and that there was no way of knowing what this meant for him long term, I remember thinking "so what?! He's ALIVE" and even said so much to her, in a nicer way. She said it was a good thing that we had that outlook on it.
I'm reading a book right now called "Walk on Water". It's about a pediatric cardiac surgery center that specializes in CHD. It's a tough read, simply because so many of the scenarios that play out in the book we either dealt with ourselves, or were played out behind the closed doors of the OR with our son. It's very sad, some of these kids really do have terrible quality of life in the realest sense. I mean I've always said that we aren't capable of judging what someone else's quality of life is, but still.
And it makes me think about Alex.
We knew he would have had continued surgeries on that conduit, the tissue wouldn't have grown with him.
We definitely had another surgery this summer, an even more complex surgery than he went through initially. To further complicate an already complicated surgery, scar tissue building up in the heart area is a surgeons nightmare.
His right ventricle didn't work that great which affected his lungs. Probably would hve been on oxygen at home.
He was in acute renal failure, which may or may not have resolved, possibly would have made him need a kidney transplant, which he honestly might not have even been eligable for with a "bad heart".
He had those brain bleeds so he could have been impaired neurologically, to what degree who knows
He could very well have had significant hearing loss from the rounds of Vancomycin he was on for suspected or proven infections.
He would have needed extensive speech and language therapy because of the long term ventilator use. As well as physical therapy because his hips were stuck in the "frog legs" position and his mucles had atrophied so much from laying there all those weeks.
And that's just getting started. So what would his "quality of life" been? Of course don't think for an instant we wouldn't have gladly accepted him in any way shape or form he came, if we weren't willing to do that we wouldn't have worked so hard to get him the help he needed from the get-go. But if I'm honest with myself........ What kind of a way to live is that? To know that you are always going to be cut open, poked, prodded. To have to hand him off to the OR team time and time again while he cried. To have to watch him try to play with his friends and get winded and have to see him sad that he couldn't do this or that?
Of course from day one I was certain I was going to have that kid who amazed everyone. Who was a medical miracle in every sense of the word. But although Alex was a miracle, instead of doing things quickly and easily he tended to be a rather difficult little stinker.
I don't mean to offend or upset anyone with this. If Alex were still here laying in that room on unit 5C I wouldn't even be thinking this, but I need to come to grips with what his reality would have been, and what our reality would have been so that I can fully let him go, so that I can find some comfort within myself that he really is in a better place. Free of pain, "cant's", what-if's. And someday, I will get my perfect body too and get to spend the rest of my life with him and learn even more from him.
I'm reading a book right now called "Walk on Water". It's about a pediatric cardiac surgery center that specializes in CHD. It's a tough read, simply because so many of the scenarios that play out in the book we either dealt with ourselves, or were played out behind the closed doors of the OR with our son. It's very sad, some of these kids really do have terrible quality of life in the realest sense. I mean I've always said that we aren't capable of judging what someone else's quality of life is, but still.
And it makes me think about Alex.
We knew he would have had continued surgeries on that conduit, the tissue wouldn't have grown with him.
We definitely had another surgery this summer, an even more complex surgery than he went through initially. To further complicate an already complicated surgery, scar tissue building up in the heart area is a surgeons nightmare.
His right ventricle didn't work that great which affected his lungs. Probably would hve been on oxygen at home.
He was in acute renal failure, which may or may not have resolved, possibly would have made him need a kidney transplant, which he honestly might not have even been eligable for with a "bad heart".
He had those brain bleeds so he could have been impaired neurologically, to what degree who knows
He could very well have had significant hearing loss from the rounds of Vancomycin he was on for suspected or proven infections.
He would have needed extensive speech and language therapy because of the long term ventilator use. As well as physical therapy because his hips were stuck in the "frog legs" position and his mucles had atrophied so much from laying there all those weeks.
And that's just getting started. So what would his "quality of life" been? Of course don't think for an instant we wouldn't have gladly accepted him in any way shape or form he came, if we weren't willing to do that we wouldn't have worked so hard to get him the help he needed from the get-go. But if I'm honest with myself........ What kind of a way to live is that? To know that you are always going to be cut open, poked, prodded. To have to hand him off to the OR team time and time again while he cried. To have to watch him try to play with his friends and get winded and have to see him sad that he couldn't do this or that?
Of course from day one I was certain I was going to have that kid who amazed everyone. Who was a medical miracle in every sense of the word. But although Alex was a miracle, instead of doing things quickly and easily he tended to be a rather difficult little stinker.
I don't mean to offend or upset anyone with this. If Alex were still here laying in that room on unit 5C I wouldn't even be thinking this, but I need to come to grips with what his reality would have been, and what our reality would have been so that I can fully let him go, so that I can find some comfort within myself that he really is in a better place. Free of pain, "cant's", what-if's. And someday, I will get my perfect body too and get to spend the rest of my life with him and learn even more from him.
Monday, April 17, 2006
Death certificate
I was doing better today, until I got my mail.
Got an envelope from the funeral home. My first thought was that we must have forgotten to pay something, or maybe it was some sort of receipt so I opened it not even thinking twice.
What I found instead, right there sitting in my face was Alex's death certificate. No warning, just boom there it is.
I was shaken, but somewhat ok until I read
Primary cause of death: Metabolic Acidosis hypotension
Other primary: Suspected Sepsis
Other contributing factors: Post RVOT repair of Tetralogy of Fallot/Pulmonary atresia
Now none of this was such a surprise that it should have taken me off guard. But when I read the sepsis part the 'what if demon' totally took over and now I find myself wondering if in some way I made him sick. Now, really this is silly, he had so many sites that were just begging for bacteria to enter, but still I want to blame myself I guess.
The day has gotten better though. I went to the craft store in hopes of finding a nice project to occupy some of my time. I couldn't find anything I wanted to do and then I had a great lightbulb moment. So, i'm making and recycling old teddy bears, they will have a heart patch and a 'scar' on thier chest. I'm going to also write a little kids book entitled 'Alex the bear has s special heart, just like YOU' that fits in a little pouch on the bears back, and I'm going to give them to children's hospitals for 'heart babies' .
So, if any of you have any old clean stuffed bears laying around the house that your kids no longer play with, or if you'd be willing to watch some garage sales for some this summer, please email me.
Got an envelope from the funeral home. My first thought was that we must have forgotten to pay something, or maybe it was some sort of receipt so I opened it not even thinking twice.
What I found instead, right there sitting in my face was Alex's death certificate. No warning, just boom there it is.
I was shaken, but somewhat ok until I read
Primary cause of death: Metabolic Acidosis hypotension
Other primary: Suspected Sepsis
Other contributing factors: Post RVOT repair of Tetralogy of Fallot/Pulmonary atresia
Now none of this was such a surprise that it should have taken me off guard. But when I read the sepsis part the 'what if demon' totally took over and now I find myself wondering if in some way I made him sick. Now, really this is silly, he had so many sites that were just begging for bacteria to enter, but still I want to blame myself I guess.
The day has gotten better though. I went to the craft store in hopes of finding a nice project to occupy some of my time. I couldn't find anything I wanted to do and then I had a great lightbulb moment. So, i'm making and recycling old teddy bears, they will have a heart patch and a 'scar' on thier chest. I'm going to also write a little kids book entitled 'Alex the bear has s special heart, just like YOU' that fits in a little pouch on the bears back, and I'm going to give them to children's hospitals for 'heart babies' .
So, if any of you have any old clean stuffed bears laying around the house that your kids no longer play with, or if you'd be willing to watch some garage sales for some this summer, please email me.
Saturday, April 1, 2006
Sharing the gifts we are given
If you are visiting Alex's site because you received a Random act of kindness or a giving box, please sign the guestbook! We like to see how far Alex's love is reaching. While your here, take the time to read Alex's story, the journal, and browse his pictures.
Some people are born with special hearts, the rest of us have to work at it;)
Don't know what I'm talking about?! Read on!
Facts about congenital heart defects:
1. Congenital heart defects are the #1 birth defect in the U.S
2. It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.
3. An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)
4. In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.
5. Congenital heart defects are the #1 cause of birth defect related infant deaths.
6. Of the children sticken with Congenital heart defects, 1 in 10 have fatal birth defects.
7. Currently, there is no known cause, cure or prevention of congenital heart defects.
8. On average, 40,000 babies are born each year with a congenital heart defect.
9. Currently, there are over 35 known types of CHD.
10. You CAN help to save the Heart of a child! Visit http://www.kidswithheart.org/
Also, when youre done here, grab some tissues and take a look at Alex's montage at http://www.onetruemedia.com/shared?p=42c59bc2e1dbedd5a18bd
A request in honor of Alex...
At the bottom of this post a little message Please copy and paste it into a wordpad or word document, duplicate it to use up the whole page, print off a few copies, cut the messages apart and participate in our effort to make the world a little bit better in honor of Alexander. All you have to do is what most of us should be doing every day, little random acts of kindness. It might be paying for the person's food behind you in the drive through, helping a little old lady carry her groceries, When your at the gas station for a coffee, buy a lottery ticket and hand it to someone in the store, buy a small toy for a child in the store, bake some cookies and bring them to the local city hall, goodwill, or police station....just the things that we all should do but rarely take the time or effort to.
Everytime you do one of these random acts of kindness, please give the person one of these messages. They have Alex's website on them so at the same time as we help others, we can raise awareness of congenital heart disease as well!
Please also forward this to your friends!
Thank you!
Kathleen and Craig and the kids
____________________________________________________
This random act of kindness was done in
memory of Alexander Evertsen who passed
away March 16,2006 at the age of 6.5weeks
from Congenital heart disease. Pass this on and
keep the kindness going!
http://www.caringbridge.org/visit/alexanderevertsen
Some people are born with special hearts, the rest of us have to work at it;)
Don't know what I'm talking about?! Read on!
Facts about congenital heart defects:
1. Congenital heart defects are the #1 birth defect in the U.S
2. It is estimated by the American Heart Association that nearly 1.2 million Americans are living today with a congenital heart defect, some of them don't know it until it is to late.
3. An estimated, on average, 1 in every 100 babies are born with a congenital heart defect (In comparison to Down Syndrome, 1 in every 900)
4. In the U.S nearly twice as many children die each year from congenital heart defects than all forms of childhood cancers combined, yet, funding for pediatric cancer research is 5 times high than for congenital heart defects.
5. Congenital heart defects are the #1 cause of birth defect related infant deaths.
6. Of the children sticken with Congenital heart defects, 1 in 10 have fatal birth defects.
7. Currently, there is no known cause, cure or prevention of congenital heart defects.
8. On average, 40,000 babies are born each year with a congenital heart defect.
9. Currently, there are over 35 known types of CHD.
10. You CAN help to save the Heart of a child! Visit http://www.kidswithheart.org/
Also, when youre done here, grab some tissues and take a look at Alex's montage at http://www.onetruemedia.com/shared?p=42c59bc2e1dbedd5a18bd
A request in honor of Alex...
At the bottom of this post a little message Please copy and paste it into a wordpad or word document, duplicate it to use up the whole page, print off a few copies, cut the messages apart and participate in our effort to make the world a little bit better in honor of Alexander. All you have to do is what most of us should be doing every day, little random acts of kindness. It might be paying for the person's food behind you in the drive through, helping a little old lady carry her groceries, When your at the gas station for a coffee, buy a lottery ticket and hand it to someone in the store, buy a small toy for a child in the store, bake some cookies and bring them to the local city hall, goodwill, or police station....just the things that we all should do but rarely take the time or effort to.
Everytime you do one of these random acts of kindness, please give the person one of these messages. They have Alex's website on them so at the same time as we help others, we can raise awareness of congenital heart disease as well!
Please also forward this to your friends!
Thank you!
Kathleen and Craig and the kids
____________________________________________________
This random act of kindness was done in
memory of Alexander Evertsen who passed
away March 16,2006 at the age of 6.5weeks
from Congenital heart disease. Pass this on and
keep the kindness going!
http://www.caringbridge.org/visit/alexanderevertsen
Monday, March 27, 2006
God is in control, like it or not
Some days are harder than others. I've found that Alex's life has brought me so much closer to God than I was. I remember on that Monday walkingn to the hospital just feeling terrible about things after Alex's rocky weekend when I just stopped in the middle of the sidewalk in front of the hospital, threw my hands in the air, looked up to the heavens and said out loud 'I give up God, I quit trying to be in control! Let's do this your way' 3 days later he called Alex home. Now I could get angry about this, that I gave God control and he took my child from me..... but instead I feel like rather than taking my child from me, he ended Alex's suffering and took him home. My fight for control with God was only harming my son.
We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.
I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it
'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.
Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '
Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.
Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve
Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:
Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve
VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.
overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD
Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall
Children with TOF have a boot shaped heart.
Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.
There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.
We are going to try to get a copy of Alex's hospital record. I'm sure it will raise a lot of questions but I really feel the need to know the answers to some of the questions I was too afraid to ask while things were happening. I also feel like we need to know as much as we can about Alex's condition, for our sake, for the sake of people we might be able to help in the future, and for the sake of any children we may have yet unborn.
I've had a lot of people ask me what was the main issue with Alex, the issue that he could not overcome. Although we declined an autopsy, we are quite certain it was diastolic heart failure caused by his hypertrophied ventricle (small and stiff). Which caused something called Diastolic heart failure.. Here is a bit of info on it
'Diastolic heart failure occurs when the heart is unable to receive blood normally. The cardiac cycle is divided into two parts - systole and diastole. During systole, the ventricles (the heart's major pumping chambers) contract, thus ejecting blood out of the heart and into the arteries.
Sometimes, however, due to various medical conditions, the ventricles become relatively 'stiff.' Stiff ventricles cannot fully relax during diastole, and as a result the ventricles may not fill completely, and blood can 'dam up' in the body's organs (mainly the lungs). An abnormal 'stiffening' of the ventricles, and the resulting abnormal ventricular filling during diastole, is referred to as diastolic dysfunction. When diastolic dysfunction is sufficient to produce pulmonary congestion (that is, a damming up of blood into the lungs), diastolic heart failure is said to be present. '
Also, people have asked what Alex's heart problem was. I may have explained it early on in his life, as I understood it but now that I understand more, I can give you a better explanation.
Tetralogy of Fallot, pulmonary atresia, absent pulmonic valve
Alex had the most rare and most severe form of TOF. The traditional definition of it is the 4 anomolies:
Pulmonary stenosis- a narrowing of the pulmonary artery and/or valve
VSD- Ventricular Septal Defect. A hole between the 2 lower chambers of the heart, the ventricles which allows oxygen rich blood and oxygen poor blood to mix together before being pumped to the body, giving the telltale 'blue baby' symptom.
overriding Aorta- The Aorta, the artery that pumps blood to the body, is positioned centrally over the VSD
Right ventricular hypertrophy- Stiffening of the right ventricle caused by thickening of the muscle wall
Children with TOF have a boot shaped heart.
Alex's diagnosis was a little varied from this. He didn't have his pulmonary artery, so of course he didn't have the valve either. The PDA or Patent Ductus Arteriosis that fetuses use to circulate thier blood until they are born and thier lungs begin to work is the main, sometimes only way to get blood where it needs to go. This PDA closes normally within the first week or two of life, as the lungs do thier job which is why we noticed Alex having trouble 14 hours after birth, his PDA began to close. Some children have 'collaterals' which is extra arteries the heart grows when it detects an error in design. From what I know, Alex didn't have any, or only a few of these that didn't help him much.
There are some chromosomal abnormalities that can be associated with TOF, and are more frequently associated with severe forms of it. Alex did not have those chromosomal abnormalities so chances are, his heart problem was a fluke and won't repeat itself in siblings or future generations. However, since science hasn't yet uncovered a specific gene for heart defects, it is possible there is some genetic tendancy so our risk of having another child with a heart problem are 2-3% as opposed to 1% which is the risk of the general population.
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