Terri,
I have followed your page from October 2005 and found out about it from Sarah Eason, who lives close by. Her son Johnny and Jack were weeks apart and both were hypoplast kiddos (Johnny right heart, Jack left). Those were happy, heady days as she and I commiserated about meds, reflux, therapy and clinic visits.
I always your grace under pressure and how well you handled losing your child. Never did I think that we would be in the same situation, no offense intended. I always thought we would beat the odds, since we did everything they said to do and took Jack one of the best heart centers in the world. Sadly, we are now linked forever on this same journey. And it stinks. Most days I can't believe Jack is not here and my arms literally ache to hold him again. Which is ironic since he was never much of a cuddler.
We are haunted by our days in Boston and remember how desperate we were. That's why we started Jack's Heart Fund~ to help out other families in similar situations and to honor his memory.
Please don't feel like you need to donate to our fund, you have been through so much already! But if you want to, we will certainly put it too good use. We usually give out $200 Visa gift cards, so families can use them as they like.
Our address is
4305 W. 94th Street
Prairie Village, KS 66207
My prayers are with you today and always. I am so sorry our boys aren't with us and that we are on this painful journey.
Bridget
Wednesday, June 1, 2011
Tuesday, May 24, 2011
This Baby Moves Like Jack
Jack used to get the hiccups in utero. My mom told me she never had a baby do that. Of course that isn't a very supportive thing to say. Imagine that.
This baby has the hiccups a lot too. The dr said that was a sign of a healthy baby. Huh?
I like having this baby in me, keeping it safe and sound. I don't think there is anything wrong with it I just am enjoying my final weeks of my last pregnancy. And that makes me sad.
5 pregnancies and only one child so far. What shitty percentages that is.
I should have more babies with me.....causing a ruckus and making me nuts.
This baby has the hiccups a lot too. The dr said that was a sign of a healthy baby. Huh?
I like having this baby in me, keeping it safe and sound. I don't think there is anything wrong with it I just am enjoying my final weeks of my last pregnancy. And that makes me sad.
5 pregnancies and only one child so far. What shitty percentages that is.
I should have more babies with me.....causing a ruckus and making me nuts.
Don't Follow The Light Jack
I used to tell him that in the car. I would say, "Jack, don't ever follow the light or listen to any voices that you don't know. Always come back to me and follow my voice."
Wonder if that kept him alive all those months in 2009. My voice. Telling him he could do it, to tell his heart to relax, to put all those bugs in the bug jug.
Did I prolong the inevitable? Did I cause my son undue pain and suffering? Was I being selfish?
The guilt overwhelms me sometimes. The failure is monutmental. The loss is so great.
Never in my life will I be the same, never in my life will I forgive myself.
Wonder if that kept him alive all those months in 2009. My voice. Telling him he could do it, to tell his heart to relax, to put all those bugs in the bug jug.
Did I prolong the inevitable? Did I cause my son undue pain and suffering? Was I being selfish?
The guilt overwhelms me sometimes. The failure is monutmental. The loss is so great.
Never in my life will I be the same, never in my life will I forgive myself.
Today I am MAD
I don't want to hear about kids getting a four chambered heart
My child is lying in a grave in Raytown, MO
I did everything they asked me to do. I wasn't a jackass mom. I took him to doctors, had the therapists invade my house, fought with insurance companies, argued with pharmacists.
I followed their instructions to the tee. I DID MY JOB!
Why didn't they do theirs?
My child is lying in a grave in Raytown, MO
I did everything they asked me to do. I wasn't a jackass mom. I took him to doctors, had the therapists invade my house, fought with insurance companies, argued with pharmacists.
I followed their instructions to the tee. I DID MY JOB!
Why didn't they do theirs?
Did you Know
That in the CICU in Boston the man comes by at 4PM sharp to clean the floors?
That the cleaning chemicals don't smell clean?
That Mass is said at 11:30 every Sunday in the Patient Entertainment Center
That the smell of Au Bon Pain permeates every single part of that building?
I miss Boston.
That the cleaning chemicals don't smell clean?
That Mass is said at 11:30 every Sunday in the Patient Entertainment Center
That the smell of Au Bon Pain permeates every single part of that building?
I miss Boston.
Today I am thinking about
The mom who is sitting by her child's bedside stroking their hand, praying that everything will be okay
The mom who is in the waiting room for a procedure or surgery to be over, as fear and pain grip her heart
The mom who exhaustedly sits in their child's hospital room, trying to find something to distract or comfort
The mom who doesn't know what the future holds, who hopes for the best, but fears the worst.
The mom who is in the waiting room for a procedure or surgery to be over, as fear and pain grip her heart
The mom who exhaustedly sits in their child's hospital room, trying to find something to distract or comfort
The mom who doesn't know what the future holds, who hopes for the best, but fears the worst.
An Unusual Mother
Who do you know that celebrates Mother's Day with one child in the grave, one in the womb and one running around with a messy face?
That was me on the most difficult day of the year.
Mother's Day.
So glad I survived it.
Because it sucks.
"Ask My Mom How She Is"
My mom, she tells a lot of lies, she never did before,
but from now until she dies, she'll tell a whole lot more.
...Ask my mom how she is and because she can't explain,
she will tell a little lie because she can't describe the pain.
Ask my mom how she is, she'll say, "I'm alright"
If that's the truth then tell me, why does she cry each night?
Ask my mom how she is, she seems to cope so well,
she doesn't have a choice you see nor the strength to yell.
Ask my mom how she is, "I'm fine, I'm well, I'm coping,"
For God's sake mom, just tell the truth, just say your heart is broken.
She'll love me all her life, I loved her all of mine,
But if you ask her how she is, she'll lie and say she's fine.
I am here in heaven, I cannot hug from here,
If she lies to you don't listen, hug her and hold her near.
On the day we meet again I'll smile and I'll be bold,
I'll say, "You're lucky to get in here, Mom, with all the lies you told!"
That was me on the most difficult day of the year.
Mother's Day.
So glad I survived it.
Because it sucks.
"Ask My Mom How She Is"
My mom, she tells a lot of lies, she never did before,
but from now until she dies, she'll tell a whole lot more.
...Ask my mom how she is and because she can't explain,
she will tell a little lie because she can't describe the pain.
Ask my mom how she is, she'll say, "I'm alright"
If that's the truth then tell me, why does she cry each night?
Ask my mom how she is, she seems to cope so well,
she doesn't have a choice you see nor the strength to yell.
Ask my mom how she is, "I'm fine, I'm well, I'm coping,"
For God's sake mom, just tell the truth, just say your heart is broken.
She'll love me all her life, I loved her all of mine,
But if you ask her how she is, she'll lie and say she's fine.
I am here in heaven, I cannot hug from here,
If she lies to you don't listen, hug her and hold her near.
On the day we meet again I'll smile and I'll be bold,
I'll say, "You're lucky to get in here, Mom, with all the lies you told!"
Take Me Out To The Ball Game
THe other day Will asked me to sing this song and it literally broke my heart.
How many times, in how many different places did I sing this song to you Jack, to keep your mind off all the pokes, sticks and tubes?
And now my little William loves to chirp this song as it was truly intended.
It will always bring tears to my eyes
How many times, in how many different places did I sing this song to you Jack, to keep your mind off all the pokes, sticks and tubes?
And now my little William loves to chirp this song as it was truly intended.
It will always bring tears to my eyes
Saturday, February 5, 2011
Facebook Breaks My Heart
Whether it is another baby struggling or faces of my friend's kids Facebook breaks my heart. Reminds me of what we have been trhough and what we are missing in our lives.
Wednesday, January 26, 2011
A friend of mine
A virtual friend of mine's child is dying. She asked for advice and how we handled those last dark days with Jack. This is what I wrote:
Jana,
I am HEARTBROKEN to hear this news and I fear you aren't going to like my response. 10 days before Jack died the docs told us that he wasn't going to make it, that they could not get his kidneys functioning and that his infection was basically rampant throughout his body and not responding to the antibiotics. I could not believe it. Not my son, not this terrible scenario.
48 hours before he passed his lactic acid numbers kept rising, along with his white blood count. They could not tell us why either. 13 months (to the day) later, this is what I think happened. They could not get Jack's heart "fixed" enough to come off of the vent, he probably had a botched cath where the device did not fully deploy to close some VSDs that he dad. The next heart cath fixed those holes but by that time the damage to the rest of his systems was too great to overcome. He was on dialysis (another nightmare) and they could not get the fluid off of him. He also had a persistent infection that they kept monkeying around with the antibiotics. His WBC would get to a manageable level, then they would dial back the antibiotics and the WBC would come back higher. They did this one too many times, and the infection is what eventually overtook him. I hate the term lactic acid, it makes my stomach hurt. His rose steadily over those last few days, they told us basically that some muscle(s) in his body were dying and they did not know what or how to fix. I remember the general surgeon coming in on Christmas Day and shaking his head, saying there was nothing they could do.
In terms of what I would have asked differently, I don't know. I think that we asked all the right questions, it was such a muddled mess of things that there were no answers just sad looks and sighs. I wish that I would have been more persistent up until that point of fixing his damned heart and getting him off the vent. I regret that more than anything. I wish that I would have shaken Dr. Del Nido to his core and telling him to pay attention to this child and FIX HIS HEART!
The last days were so sad and dark. I was dealing with my mother in law and 70+ year old parents who were a mess. My husband was a mess. I was trying to manage them plus make my son comfortable. I now regret not taking time for myself to really take a step back and mourn what was happening.
Some things that we did leading up to 1/26/09.....
I made sure someone was always holding Jack's hand, kissing him and talking to him. We would talk about the things he liked to do, play with, shows he watched on TV and his brother. I wanted his mind to be fiilled with happiness, not sorrow or fright.
I called my other son and had him "chatter" to Jack on the phone, so Jack could hear Will's voice.
I kept the room dark, his noisemaker on and the chatter to a minimum. To be honest, I was quite a bitch about all that for I have a mother in law who likes to run her mouth and a mother who prays the rosary constantly.
When the time came, we took Jack off the oscilating vent and Sam held him, then I held him. It was very peaceful. I felt honored to have watched him come in the world, and then hold him as he left this world. I am not going to sugar coat this, it was awful (just remembering it has me crying in my cube at work).
After he passed away, Sam and I asked everyone to leave the room and he and I took every last bit of tape and gunk off of him (with a nurse's help) and gave him a bath. I am a big believer in the fact that my babies sleep better when they are clean. They brought a warming light in to keep him warm, we covered him up then the rest of the family, nurses, staff could come in and say there good byes.
I made molds of his feet and his hands, along with stamping imprints of them on paper. I also cut a lock of his hair.
Saying goodbye to my son, my firstborn, my challenging child was the hardest thing I ever had to do. If you think you can imagine how hard it was, think 100,000 times worse than that. Do not have any regrets, make sure YOU are comfortable with the decision, with the choices, with the way things go down. I regret not holding his hand more, for not fighting more, for feeling like we made the wrong decision in going to Boston. I feel tremendous guilt over any pain, uncomfort, fear or frustration he felt. I feel guilt over leaving him to go home to sleep, for leaving his room for one second. I will live the rest of my life with that guilt, for I was his mother, his advocate, his protector. Not that my husband isn't great, but moms are different that dads.
We have seen a grief counselor for the past year and she keeps telling me to let the guilt go. I have finally convinced her that I never will. That child grew inside me, I cared for him, I managed him, I handed him over to people who I trusted with his life. Those were our decisions and since he is not here, did we do the right thing?
This is probably more than you wanted to know. Sorry for that, guess I got on a bit of a tangent.
My advice is to follow your heart, do what you feel is best for Sophie, make her comfortable and don't have any regrets.
Peace and prayers to you today Jana.
With tears in my eyes,
Bridget
Jana,
I am HEARTBROKEN to hear this news and I fear you aren't going to like my response. 10 days before Jack died the docs told us that he wasn't going to make it, that they could not get his kidneys functioning and that his infection was basically rampant throughout his body and not responding to the antibiotics. I could not believe it. Not my son, not this terrible scenario.
48 hours before he passed his lactic acid numbers kept rising, along with his white blood count. They could not tell us why either. 13 months (to the day) later, this is what I think happened. They could not get Jack's heart "fixed" enough to come off of the vent, he probably had a botched cath where the device did not fully deploy to close some VSDs that he dad. The next heart cath fixed those holes but by that time the damage to the rest of his systems was too great to overcome. He was on dialysis (another nightmare) and they could not get the fluid off of him. He also had a persistent infection that they kept monkeying around with the antibiotics. His WBC would get to a manageable level, then they would dial back the antibiotics and the WBC would come back higher. They did this one too many times, and the infection is what eventually overtook him. I hate the term lactic acid, it makes my stomach hurt. His rose steadily over those last few days, they told us basically that some muscle(s) in his body were dying and they did not know what or how to fix. I remember the general surgeon coming in on Christmas Day and shaking his head, saying there was nothing they could do.
In terms of what I would have asked differently, I don't know. I think that we asked all the right questions, it was such a muddled mess of things that there were no answers just sad looks and sighs. I wish that I would have been more persistent up until that point of fixing his damned heart and getting him off the vent. I regret that more than anything. I wish that I would have shaken Dr. Del Nido to his core and telling him to pay attention to this child and FIX HIS HEART!
The last days were so sad and dark. I was dealing with my mother in law and 70+ year old parents who were a mess. My husband was a mess. I was trying to manage them plus make my son comfortable. I now regret not taking time for myself to really take a step back and mourn what was happening.
Some things that we did leading up to 1/26/09.....
I made sure someone was always holding Jack's hand, kissing him and talking to him. We would talk about the things he liked to do, play with, shows he watched on TV and his brother. I wanted his mind to be fiilled with happiness, not sorrow or fright.
I called my other son and had him "chatter" to Jack on the phone, so Jack could hear Will's voice.
I kept the room dark, his noisemaker on and the chatter to a minimum. To be honest, I was quite a bitch about all that for I have a mother in law who likes to run her mouth and a mother who prays the rosary constantly.
When the time came, we took Jack off the oscilating vent and Sam held him, then I held him. It was very peaceful. I felt honored to have watched him come in the world, and then hold him as he left this world. I am not going to sugar coat this, it was awful (just remembering it has me crying in my cube at work).
After he passed away, Sam and I asked everyone to leave the room and he and I took every last bit of tape and gunk off of him (with a nurse's help) and gave him a bath. I am a big believer in the fact that my babies sleep better when they are clean. They brought a warming light in to keep him warm, we covered him up then the rest of the family, nurses, staff could come in and say there good byes.
I made molds of his feet and his hands, along with stamping imprints of them on paper. I also cut a lock of his hair.
Saying goodbye to my son, my firstborn, my challenging child was the hardest thing I ever had to do. If you think you can imagine how hard it was, think 100,000 times worse than that. Do not have any regrets, make sure YOU are comfortable with the decision, with the choices, with the way things go down. I regret not holding his hand more, for not fighting more, for feeling like we made the wrong decision in going to Boston. I feel tremendous guilt over any pain, uncomfort, fear or frustration he felt. I feel guilt over leaving him to go home to sleep, for leaving his room for one second. I will live the rest of my life with that guilt, for I was his mother, his advocate, his protector. Not that my husband isn't great, but moms are different that dads.
We have seen a grief counselor for the past year and she keeps telling me to let the guilt go. I have finally convinced her that I never will. That child grew inside me, I cared for him, I managed him, I handed him over to people who I trusted with his life. Those were our decisions and since he is not here, did we do the right thing?
This is probably more than you wanted to know. Sorry for that, guess I got on a bit of a tangent.
My advice is to follow your heart, do what you feel is best for Sophie, make her comfortable and don't have any regrets.
Peace and prayers to you today Jana.
With tears in my eyes,
Bridget
Friday, January 21, 2011
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