Thursday, August 9, 2007
Thursday, August 2, 2007
Prayer/Religion/Spirituality
I've started this post and set it aside many times.
My wish is that we all can have an honest discussion about how having a child born premature (or the loss of a preemie) has changed our views on prayer/religion and spirituality.
My fear is that the discussion is going to turn nasty and unproductive.
I'm willing to give it a try.
My thoughts...
I was raised Catholic, even going to Catholic school for bit. I began to question organized religion very early on. I can recall a conversation that I initiated when I was 10 and was told that I was too intelligent and, "you just have to have faith." If someone had actually sat me down and had an educated discussion, I may not have strayed.
As I got older (teens) I started to feel guilty for the feelings I was having. Oh that Catholic guilt! Again I approached people who should have been able to help and again was told to have faith.
In my early 20's I did some honest soul searching. Now on my own, I no longer was forced to attend church. I started reading about other religions but nothing seemed to fit. I really felt lost. It's hard to explain but others who have been there will understand.
Then my water broke at 23 weeks. I was 30. I immediately reverted back to prayer and a whole lotta begging to God. People were calling me in the hospital and telling me that they were praying too. Prayers chains were linking all over the country, all for my child.
Some told me, "if you pray hard enough, everything will be ok."
When Paige was born I immediately felt that I must not have prayed enough. And, I surely must not be worthy. What a horrible feeling to have as I was laying on the operating table!
The next day, while my precious baby (whom I still had not seen) was fighting for her life in the NICU, one of our dogs died. He was my first baby. I had been separated from him for almost 3 weeks due to being on hospital bed rest after my water broke. My MIL called the nurses station and the nurse pulled hubby out of my room to tell him. He was crying when he came back in. I thought for sure we had lost our child. When he told me that it was our dog, I swore, out loud-at the top of my lungs, at God. That guilt was too much to bear. What a cruel chain of events.
During her NICU stay, people prayed over her. When she would pass a hurdle, they would claim that God was at hand and had spared her. What was the excuse when she would have a setback? Where was God then?
Why is it that God gets the credit for good things but is spared the credit for the bad?
Over the years I have struggled with my feelings regarding "God". It has not been easy to feel this way. I've tried searching for something that will bring me back, but just keep on coming back to the same place....
Was the theory of "God" just created by humans? Why would a person who has the ability to stop pain, actually allow our children to suffer?
I do hope we can all have a civil discussion. So many are passionate about their beliefs that sometimes that passion came come across as rude.
Before you type a comment, do so from this perspective... The comment you leave could help someone who needs help/direction. If you are nasty, you will only drive people away. Instead of simply quoting the bible, please talk about YOUR own personal feelings.
Lastly, if this discussion gets out of control, I will shut it down. Many parents are very vulnerable right now, struggling with all facets of prematurity. They surely do not need to feel attacked for how they are feeling or what they may have gone through.
My wish is that we all can have an honest discussion about how having a child born premature (or the loss of a preemie) has changed our views on prayer/religion and spirituality.
My fear is that the discussion is going to turn nasty and unproductive.
I'm willing to give it a try.
My thoughts...
I was raised Catholic, even going to Catholic school for bit. I began to question organized religion very early on. I can recall a conversation that I initiated when I was 10 and was told that I was too intelligent and, "you just have to have faith." If someone had actually sat me down and had an educated discussion, I may not have strayed.
As I got older (teens) I started to feel guilty for the feelings I was having. Oh that Catholic guilt! Again I approached people who should have been able to help and again was told to have faith.
In my early 20's I did some honest soul searching. Now on my own, I no longer was forced to attend church. I started reading about other religions but nothing seemed to fit. I really felt lost. It's hard to explain but others who have been there will understand.
Then my water broke at 23 weeks. I was 30. I immediately reverted back to prayer and a whole lotta begging to God. People were calling me in the hospital and telling me that they were praying too. Prayers chains were linking all over the country, all for my child.
Some told me, "if you pray hard enough, everything will be ok."
When Paige was born I immediately felt that I must not have prayed enough. And, I surely must not be worthy. What a horrible feeling to have as I was laying on the operating table!
The next day, while my precious baby (whom I still had not seen) was fighting for her life in the NICU, one of our dogs died. He was my first baby. I had been separated from him for almost 3 weeks due to being on hospital bed rest after my water broke. My MIL called the nurses station and the nurse pulled hubby out of my room to tell him. He was crying when he came back in. I thought for sure we had lost our child. When he told me that it was our dog, I swore, out loud-at the top of my lungs, at God. That guilt was too much to bear. What a cruel chain of events.
During her NICU stay, people prayed over her. When she would pass a hurdle, they would claim that God was at hand and had spared her. What was the excuse when she would have a setback? Where was God then?
Why is it that God gets the credit for good things but is spared the credit for the bad?
Over the years I have struggled with my feelings regarding "God". It has not been easy to feel this way. I've tried searching for something that will bring me back, but just keep on coming back to the same place....
Was the theory of "God" just created by humans? Why would a person who has the ability to stop pain, actually allow our children to suffer?
I do hope we can all have a civil discussion. So many are passionate about their beliefs that sometimes that passion came come across as rude.
Before you type a comment, do so from this perspective... The comment you leave could help someone who needs help/direction. If you are nasty, you will only drive people away. Instead of simply quoting the bible, please talk about YOUR own personal feelings.
Lastly, if this discussion gets out of control, I will shut it down. Many parents are very vulnerable right now, struggling with all facets of prematurity. They surely do not need to feel attacked for how they are feeling or what they may have gone through.
Wednesday, August 1, 2007
The Preemie Project
I received an email (below) from a reporter, Andrea Ball, asking for help from preemie parents. She is also the parent of a preemie.
If anyone would like to participate, all of the details are below.
Stacy
Dear Preemie Parent:
Hi. My name is Andrea Ball and I am a reporter with the AustinAmerican-Statesman in Austin, Texas.
I am writing a large story about the mental health effects of premature birth on families. This story is funded in large part by the Rosalynn CarterMental Health Journalism Fellowship Program.
The main story follows a family with three premature children. We look attheir childrens' hospital stay, their challenges at home, the effects on theparents' marriage and the financial problems caused by medical costs. Weexplore the issues of depression, anxiety and post traumatic stressdisorder. We are also looking at the long-term effects on prematurity on thechild.
As part of this, the newspaper would like an online presence of parents whohave been through all this.
If you are interested, please answer the following questions and email them to rquigley@statesman.com and aball@statesman.com>
Please make sure you put the words PREEMIE PROJECT in the subject line so we are sure to see it. Here's what we need:
Your name
Your child's name
Your city and state and country
Hospital photos and current photos of your child.
If you have videos of your child on YouTube, please send us a link.
Then, please answer these questions (there is no word limit):
What were the circumstances of your premature birth and at what gestation did the baby arrive?
What was your NICU experience?
What has been your experience since your child came home?
Please discuss any mental health effects you or your child have experienced as a result of prematurity (depression, anxiety, post traumatic stress disorder, marital stress, OCD, bipolar disorder)
Please discuss resources you used to get your family through the stressful/emotional part of this time. (counselors, spiritual leaders, etc)
Thank you so much for your help. Your kindness is greatly appreciated.
Andrea Ball
P.S. If you would like to learn more about my work, you can see me here:
http://www.cartercenter.org/health/mental_health/archive/author/ball.html
If anyone would like to participate, all of the details are below.
Stacy
Dear Preemie Parent:
Hi. My name is Andrea Ball and I am a reporter with the AustinAmerican-Statesman in Austin, Texas.
I am writing a large story about the mental health effects of premature birth on families. This story is funded in large part by the Rosalynn CarterMental Health Journalism Fellowship Program.
The main story follows a family with three premature children. We look attheir childrens' hospital stay, their challenges at home, the effects on theparents' marriage and the financial problems caused by medical costs. Weexplore the issues of depression, anxiety and post traumatic stressdisorder. We are also looking at the long-term effects on prematurity on thechild.
As part of this, the newspaper would like an online presence of parents whohave been through all this.
If you are interested, please answer the following questions and email them to rquigley@statesman.com and aball@statesman.com>
Please make sure you put the words PREEMIE PROJECT in the subject line so we are sure to see it. Here's what we need:
Your name
Your child's name
Your city and state and country
Hospital photos and current photos of your child.
If you have videos of your child on YouTube, please send us a link.
Then, please answer these questions (there is no word limit):
What were the circumstances of your premature birth and at what gestation did the baby arrive?
What was your NICU experience?
What has been your experience since your child came home?
Please discuss any mental health effects you or your child have experienced as a result of prematurity (depression, anxiety, post traumatic stress disorder, marital stress, OCD, bipolar disorder)
Please discuss resources you used to get your family through the stressful/emotional part of this time. (counselors, spiritual leaders, etc)
Thank you so much for your help. Your kindness is greatly appreciated.
Andrea Ball
P.S. If you would like to learn more about my work, you can see me here:
http://www.cartercenter.org/health/mental_health/archive/author/ball.html
Tuesday, July 31, 2007
No Badge?
I've been absent for the past few days thanks to a last ditch effort to get in all of Paige's tests and specialist appointments before starting back to school.
Yesterday we headed to the children's hospital to have blood work and a sweat test to check for Cystic Fibrosis. Paige has chronic sinus infections (since she was a baby-yes I know the sinus cavities are not formed then-hers were) and the mucous is very thick. We are seeing a new allergist/immunologist who suggested testing for CF. Although her symptoms (very thin, constipation, chronic sinusitis, etc) can be easily traced back to her early birth, quite a few docs have now suggested we rule out CF.
So, we find ourselves at the lab (in the children's hospital), first thing in the morning. The tech (not sure if she is considered a phlebotomist) was rude. I really hate it when rude medical people work with kids. Her and another tech (who has absolutely nothing to do with our procedure) are chatting about their friends and the "wild night out" they had a few days ago. She never once introduced herself. I'm so put off (after only 2 minutes) that I look up to see her badge and make a mental note of her name. Yes, I was formulating my letter as I sat there and it wasn't going to be nice. One problem... no badge. I was surprised since the hospital has posters all over the hallways instructing you to make sure all personnel have a badge. So, I nicely (honestly) asked if they did away with their badge system. She got quite rude and explained that she slept at her mothers house last night and forgot her badge.
Now it's finally time for Paige to have the sweat test. Paige is an excellent patient. She does what she is told without any argument-no matter what is being done to her. Her ONLY request is that you tell her what you are going to do, step by step, before you touch her. I don't think it's too much to ask. Paige then asks the tech, "Can you please just tell me what you are going to do, before you do it?" The tech rolled her eyes at Paige and started to do the procedure-without explaining! ARGH! The copper plates are placed on her arm and the machine is turned on. Paige only flinches and the woman rolls her eyes again! Mind you, Paige has not even made a noise.
When the sweat test is over it's time to have the blood test. Paige sits on my lap, offers her arm (she is a pro-having over 100 blood tests) and asks, "Are you going to use a butterfly needle?" The tech doesn't even acknowledge Paige. When Paige sees the full tray of vials she asks (with a trembly voice) "do you have to take that much blood today?" The tech laughed at her! Paige asked her, once again, to please say each step out loud. The tech wipes down her arm and sticks her with the needle. No warning. Paige still sat there, without even flinching. When she was done the tech just walked out of the room.
No offer of a sticker for the best patient in the world.
No offer of praise for the best patient in the world.
Nothing.
How convenient that she wasn't wearing her badge. I'll still be making a phone call next week, when Paige is back in school and I can be free with my words.
If you are in the medical profession and can't stand kids... please stay away from the children's hospitals!
Yesterday we headed to the children's hospital to have blood work and a sweat test to check for Cystic Fibrosis. Paige has chronic sinus infections (since she was a baby-yes I know the sinus cavities are not formed then-hers were) and the mucous is very thick. We are seeing a new allergist/immunologist who suggested testing for CF. Although her symptoms (very thin, constipation, chronic sinusitis, etc) can be easily traced back to her early birth, quite a few docs have now suggested we rule out CF.
So, we find ourselves at the lab (in the children's hospital), first thing in the morning. The tech (not sure if she is considered a phlebotomist) was rude. I really hate it when rude medical people work with kids. Her and another tech (who has absolutely nothing to do with our procedure) are chatting about their friends and the "wild night out" they had a few days ago. She never once introduced herself. I'm so put off (after only 2 minutes) that I look up to see her badge and make a mental note of her name. Yes, I was formulating my letter as I sat there and it wasn't going to be nice. One problem... no badge. I was surprised since the hospital has posters all over the hallways instructing you to make sure all personnel have a badge. So, I nicely (honestly) asked if they did away with their badge system. She got quite rude and explained that she slept at her mothers house last night and forgot her badge.
Now it's finally time for Paige to have the sweat test. Paige is an excellent patient. She does what she is told without any argument-no matter what is being done to her. Her ONLY request is that you tell her what you are going to do, step by step, before you touch her. I don't think it's too much to ask. Paige then asks the tech, "Can you please just tell me what you are going to do, before you do it?" The tech rolled her eyes at Paige and started to do the procedure-without explaining! ARGH! The copper plates are placed on her arm and the machine is turned on. Paige only flinches and the woman rolls her eyes again! Mind you, Paige has not even made a noise.
When the sweat test is over it's time to have the blood test. Paige sits on my lap, offers her arm (she is a pro-having over 100 blood tests) and asks, "Are you going to use a butterfly needle?" The tech doesn't even acknowledge Paige. When Paige sees the full tray of vials she asks (with a trembly voice) "do you have to take that much blood today?" The tech laughed at her! Paige asked her, once again, to please say each step out loud. The tech wipes down her arm and sticks her with the needle. No warning. Paige still sat there, without even flinching. When she was done the tech just walked out of the room.
No offer of a sticker for the best patient in the world.
No offer of praise for the best patient in the world.
Nothing.
How convenient that she wasn't wearing her badge. I'll still be making a phone call next week, when Paige is back in school and I can be free with my words.
If you are in the medical profession and can't stand kids... please stay away from the children's hospitals!
Sunday, July 29, 2007
Pediatric Grand Rounds
Thursday, July 26, 2007
Too Much Praise?
Every so often the topic of "are we praising our children too much?" comes up in the media. I used to turn my nose up whenever I heard/read about the new studies. Too much praise? Is that even possible?
Older and wiser.... gotta love life's little lessons.
When Paige was born and we had to constantly work with her to reach even the smallest of milestones, praise was dripping from the walls in our house. We would encourage and bribe her to get through therapy and all of the "homework" that hubby and I had to do with her. When she would even barely respond, we would praise the heck out of her.
When she got a little older and started to work on large motor skills (crawling, standing, etc), more and more praise would be needed to get her going.
Then came speech. Even more and more praise was needed.
Fine motor skills.... "Oh Paige, that is the most beautiful purple scribble picture I have ever seen."
She needed the praise and we had no problems giving it to her. I used to think to myself, "those studies only apply to typical kids. What harm could there possibly be in giving her praise?"
Well, we've created a praise junkie.
We realized this a few years ago but had no idea what to do about it. We still don't. Something has to be done though. lol
She is finally trying to learn how to ride a bike without training wheels. If you live on our street, you already know this. Actually, if you live in our town you already know this. She can be heard screaming with frustration from miles away. She has been working on for quite a few nights now.
After a particularly hard night of trying, she was finally able to push one pedal and then get her second foot onto the other pedal. Then she freaked out because both feet were off the ground. But, she was so incredibly proud of herself, and so were we. We clapped along with her and told her "great job trying!"
The next morning she asked me "Are you proud of me?", to which I responded, "You did a good job last night getting both feet on the pedals. I know how hard that was for you." Paige's response, "Good? That's all I get, just the word 'good'? Wasn't I just the greatest you've ever seen?" After we went back and forth about how being 'good' meant something special and how we were so happy to see how proud she was for herself, she just stormed off yelling something about me not understanding how hard it was to ride a bike and how I should have told her that she was the greatest. Geesh.
The same sort of conversation can be heard after artwork too. She will say that she is going to color something, sit and scribble for 2 minutes and then expect us to call her Van Gogh. Now we just say things like, "I love all of the colors you used." or "Can you tell me what you were thinking about when you were creating this?" It's never good enough and she will say things like, "don't you like what I've made?"
She is attending art camp this summer, taught by a very accomplished artist (who also happens to be her piano teacher). After picking her up last week she told me that she is upset with Mrs. X because Mrs. X wouldn't let her do the art piece the way she wanted to. She went on to tell me, "Mrs. X said that some types of art are not open for free expression and have to be aesthetically pleasing to ones eye. Well it was pleasing to my eye but she refused to tell me that my art looked great. I don't like art camp anymore!" Oh boy.
If I could go back in time, I am not sure what I could do differently with that little girl who needed so much encouragement and praise to reach her milestones.
But I know one thing, I would have wiped my praise dripping walls sooner to avoid the hurt feelings she is experiencing now.
***** 7/26 UPDATE*****
Paige can now ride a bike!! Woo Hoo!! Hubby figured out that she was always starting from a dead stop. He told her to start rolling first and then put her feet on the pedals. It worked like magic. We took her to an empty parking lot and let her ride for a while tonight. She is so proud of herself. That's the best part! I love seeing her truly happy. I still have tears in my eyes as I type this. What a big day!!!
Older and wiser.... gotta love life's little lessons.
When Paige was born and we had to constantly work with her to reach even the smallest of milestones, praise was dripping from the walls in our house. We would encourage and bribe her to get through therapy and all of the "homework" that hubby and I had to do with her. When she would even barely respond, we would praise the heck out of her.
When she got a little older and started to work on large motor skills (crawling, standing, etc), more and more praise would be needed to get her going.
Then came speech. Even more and more praise was needed.
Fine motor skills.... "Oh Paige, that is the most beautiful purple scribble picture I have ever seen."
She needed the praise and we had no problems giving it to her. I used to think to myself, "those studies only apply to typical kids. What harm could there possibly be in giving her praise?"
Well, we've created a praise junkie.
We realized this a few years ago but had no idea what to do about it. We still don't. Something has to be done though. lol
She is finally trying to learn how to ride a bike without training wheels. If you live on our street, you already know this. Actually, if you live in our town you already know this. She can be heard screaming with frustration from miles away. She has been working on for quite a few nights now.
After a particularly hard night of trying, she was finally able to push one pedal and then get her second foot onto the other pedal. Then she freaked out because both feet were off the ground. But, she was so incredibly proud of herself, and so were we. We clapped along with her and told her "great job trying!"
The next morning she asked me "Are you proud of me?", to which I responded, "You did a good job last night getting both feet on the pedals. I know how hard that was for you." Paige's response, "Good? That's all I get, just the word 'good'? Wasn't I just the greatest you've ever seen?" After we went back and forth about how being 'good' meant something special and how we were so happy to see how proud she was for herself, she just stormed off yelling something about me not understanding how hard it was to ride a bike and how I should have told her that she was the greatest. Geesh.
The same sort of conversation can be heard after artwork too. She will say that she is going to color something, sit and scribble for 2 minutes and then expect us to call her Van Gogh. Now we just say things like, "I love all of the colors you used." or "Can you tell me what you were thinking about when you were creating this?" It's never good enough and she will say things like, "don't you like what I've made?"
She is attending art camp this summer, taught by a very accomplished artist (who also happens to be her piano teacher). After picking her up last week she told me that she is upset with Mrs. X because Mrs. X wouldn't let her do the art piece the way she wanted to. She went on to tell me, "Mrs. X said that some types of art are not open for free expression and have to be aesthetically pleasing to ones eye. Well it was pleasing to my eye but she refused to tell me that my art looked great. I don't like art camp anymore!" Oh boy.
If I could go back in time, I am not sure what I could do differently with that little girl who needed so much encouragement and praise to reach her milestones.
But I know one thing, I would have wiped my praise dripping walls sooner to avoid the hurt feelings she is experiencing now.
***** 7/26 UPDATE*****
Paige can now ride a bike!! Woo Hoo!! Hubby figured out that she was always starting from a dead stop. He told her to start rolling first and then put her feet on the pedals. It worked like magic. We took her to an empty parking lot and let her ride for a while tonight. She is so proud of herself. That's the best part! I love seeing her truly happy. I still have tears in my eyes as I type this. What a big day!!!
Sunday, July 22, 2007
HOPE
According to Wikipedia, hope is defined as:
Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope implies a certain amount of perseverance — i.e., believing that a positive outcome is possible even when there is some evidence to the contrary.
When my water broke (at 23.0 weeks), a neonatologist told us that Paige would never be normal if she was born before 26 weeks. When she was delivered at 25.5 weeks, I hoped he was wrong.
It was that hope and my insane need to prove him wrong, that drove me to do what ever I could to improve her outcome.
I hoped she would walk.
She did.
I hoped she would talk.
She did.
I hoped she would escape RSV.
She did.
I hoped she would escape hearing loss.
She did.
I hoped she would escape blindness from her ROP.
She did.
I hoped she would eat by mouth.
She did.
I had other hopes too. But, I had to learn to allow myself to alter them as time went on. I grew to respect the honesty of the above mentioned neo. He told me my options and gave me real information on outcomes.
Recently I was told that the information being discussed on my blog is taking away hope from new preemie parents. I respectfully disagree.
Being educated on the possible long term issues related to prematurity should not take away the hopes you have for your preemie. Knowing the possibilities allows you to be informed.
Let your hopes drive you. But don't stick your head in the sand and ignore information that may be beneficial in the future.
Hope is a belief in a positive outcome related to events and circumstances in one's life. Hope implies a certain amount of perseverance — i.e., believing that a positive outcome is possible even when there is some evidence to the contrary.
When my water broke (at 23.0 weeks), a neonatologist told us that Paige would never be normal if she was born before 26 weeks. When she was delivered at 25.5 weeks, I hoped he was wrong.
It was that hope and my insane need to prove him wrong, that drove me to do what ever I could to improve her outcome.
I hoped she would walk.
She did.
I hoped she would talk.
She did.
I hoped she would escape RSV.
She did.
I hoped she would escape hearing loss.
She did.
I hoped she would escape blindness from her ROP.
She did.
I hoped she would eat by mouth.
She did.
I had other hopes too. But, I had to learn to allow myself to alter them as time went on. I grew to respect the honesty of the above mentioned neo. He told me my options and gave me real information on outcomes.
Recently I was told that the information being discussed on my blog is taking away hope from new preemie parents. I respectfully disagree.
Being educated on the possible long term issues related to prematurity should not take away the hopes you have for your preemie. Knowing the possibilities allows you to be informed.
Let your hopes drive you. But don't stick your head in the sand and ignore information that may be beneficial in the future.
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