Dealing with medical stuff seems to come in waves in our house. When Paige was little we were at a different specialist every week. At one time she had 9 different "ologists" and we were hit with scary news constantly.
But, since she has gotten older, the shit hits the fan in waves. Unfortunately, when it does... it splatters. I have my shield up but I'm worried.
We are in a holding pattern right now. Paige had her bone age x ray done a few weeks ago. She was 9 years 3 months at the time and the scan showed she was delayed up to 2 years. We are going to see the pediatric endocrinologist in 2 weeks.
Yesterday she had her bone density test. Not only is she at risk for osteopenia of prematurity, there is some new information out that being on some SSRI's can cause rapid bone loss. Of course she is on one of the SSRI's on the list. I watched the monitor, as the scan was in progress, wishing I was a doctor so I could have an immediate answer.
Now we wait.
I hate the wait.
Thursday, February 28, 2008
Tuesday, February 26, 2008
"Paige, Stop Staring!!"
As we entered into the restaurant tonight we were greeted by an adorable teen aged girl. Paige (9 years old) loves teenagers so I didn't think anything of it when I noticed her staring at the hostess. As the hostess turned around I realized why Paige's eyes were fixated on her... she was missing an arm.
I threw Paige my best "mom glare" but I couldn't break the stare.
I tapped her on the back. That didn't work either.
As we sat down I was crossing my fingers that Paige could use some restraint and at least wait until the hostess walked away before blurting out, "Mom did you see her? She's missing an arm!" No such luck.
She immediately asked to go to the bathroom, which I was happy to allow so it would give me time to talk to her about her staring. But, as soon as we got in the bathroom the questioning started...
"Mom, what happened to her?"
"Mom, did she have a freak accident or was she born that way?"
"Mom, can preemies be born without an arm"
As soon as she took a breath, I was able to interrupt her. I reminded her that it isn't kind to stare. "But Mom it's fascinating. Did you see that her other arm is really big?"
I reminded her how much she hates it when people stare at her. I talked about times when she is in a wheelchair or when she has visible tubes (PH probes) and kids have approached her. She has been mortified.
She tried telling me that it was her OCD and that her thoughts were telling her to stare. I explained to her that it was merely human nature and her extreme curiosity.
I never know what to say when she stares. I never know what to say when she sees someone in a wheelchair and yells, "I wonder why their legs don't work?"
To the parents who have kids with various abilities... what would you like parents to say to their children? Do you want to be approached with their questions? What do you wish parents/children would not say?
I threw Paige my best "mom glare" but I couldn't break the stare.
I tapped her on the back. That didn't work either.
As we sat down I was crossing my fingers that Paige could use some restraint and at least wait until the hostess walked away before blurting out, "Mom did you see her? She's missing an arm!" No such luck.
She immediately asked to go to the bathroom, which I was happy to allow so it would give me time to talk to her about her staring. But, as soon as we got in the bathroom the questioning started...
"Mom, what happened to her?"
"Mom, did she have a freak accident or was she born that way?"
"Mom, can preemies be born without an arm"
As soon as she took a breath, I was able to interrupt her. I reminded her that it isn't kind to stare. "But Mom it's fascinating. Did you see that her other arm is really big?"
I reminded her how much she hates it when people stare at her. I talked about times when she is in a wheelchair or when she has visible tubes (PH probes) and kids have approached her. She has been mortified.
She tried telling me that it was her OCD and that her thoughts were telling her to stare. I explained to her that it was merely human nature and her extreme curiosity.
I never know what to say when she stares. I never know what to say when she sees someone in a wheelchair and yells, "I wonder why their legs don't work?"
To the parents who have kids with various abilities... what would you like parents to say to their children? Do you want to be approached with their questions? What do you wish parents/children would not say?
Sunday, February 24, 2008
Respecting Difference of Opinion
Last year I wrote a post explaining why I felt the need to speak out. In it I talked about an encounter, with another preemie mom, that changed my life.
Here is a part of the original post...
**************
One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.
When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).
I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,
"I wish someone had given me the choice."
She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).
The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.
Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."
My world changed that day. I was able to see "the other side".
**************
Since starting my blog I have met so many wonderful people. With each new relationship came an understanding that we have some things in common. With some it was prematurity or pediatric mental health issues. Some it was a love of scrabble or even long discussions on religion (or lack of).
But, with all of my old and new friends, I do not share ALL of the same beliefs as they do.
Did that stop me from getting to know them? No.
Did that stop me from being friends with them? No
Did it stop me from being able to understand how they feel differently than I do? No
To argue ones point or opinion is one thing. Being nasty to another human being is another thing.
If someone takes a different side on an issue, are they not worthy of being treated with respect?
If you only surround yourself with like-minded people, and treat all others with nastiness and hatred, you will never grow.
Here is a part of the original post...
**************
One day a friend of mine asked me to join her for lunch. She was meeting a first time client and thought that her and I would like to meet since the client's daughter was born early. My friend suggested that I bring my daughter (who was around 2 at the time) so the 2 kids could play together.
When we arrived I was surprised to see the client was without her daughter. As we started talking we realized that we had a lot in common. Both of our girls were born at 25 weeks, both of us had premature rupture of membranes and surprisingly, both of us delivered at the same hospital (this was odd because the hospital was 90 minutes away).
I opened my trap and started spouting off about how I was frustrated with some preemie moms who say that they wish their baby had not survived. I told her about how the neo at the first hospital told me that I had the right to not resuscitate our daughter. I proudly told her how I flipped out on the doc and that I was then transfered to the 2nd hospital (the same hospital she delivered at) and how they told me that their interest was in saving my baby, and my care came 2nd (I haven't gotten into this much but I will at a later date). I must have gone on for 15 minutes about saving preemies and how mine was such a miracle. I was so immersed in my own glory that it took me a minute to realize that "the client" was looking very angry. I shut my mouth long enough for her to collect her thoughts. She then said,
"I wish someone had given me the choice."
She went on to tell me that the doctors at the hospital told her that her "job" was to endure the time she needed to in order to save her baby (her water had broken and she was admitted). Even though she was telling them that she wasn't feeling good, they ignored her. (this also happened to me at the same hospital-a story I will tell another time). She asked them about having another baby if hers did not make it but they just kept on telling her that her baby would survive. She asked them about statistics but they just kept on telling her that she needed to relax (again-also happened to me at the same hospital).
The time finally came when her daughter needed to be born (due to infection-secondary to PROM). She lost a lot of blood during the c-section and ended up losing her uterus. Her daughter did survive but was massively affected by her early birth.
Again she said, "I wish they had given me the choice. I wouldn't have agreed to all of the meds to stop labor. My daughter suffers so much. I couldn't bring her here today because there is no room for her equipment at this restaurant. I can't even have more children."
My world changed that day. I was able to see "the other side".
**************
Since starting my blog I have met so many wonderful people. With each new relationship came an understanding that we have some things in common. With some it was prematurity or pediatric mental health issues. Some it was a love of scrabble or even long discussions on religion (or lack of).
But, with all of my old and new friends, I do not share ALL of the same beliefs as they do.
Did that stop me from getting to know them? No.
Did that stop me from being friends with them? No
Did it stop me from being able to understand how they feel differently than I do? No
To argue ones point or opinion is one thing. Being nasty to another human being is another thing.
If someone takes a different side on an issue, are they not worthy of being treated with respect?
If you only surround yourself with like-minded people, and treat all others with nastiness and hatred, you will never grow.
Thursday, February 21, 2008
Treating Pain In Tiny Patients
Helping Infants Suffering From Pain
The Thinking's Changing About Whether Babies Feel Pain — And How To Treat It
NEW YORK, Feb. 21, 2008
Treating Pain In Tiny Patients
Premature babies are often born with painful medical problems. But doctors are now learning how to detect and treat pain in these tiny patients. Sanjay Gupta reports. |
In three short weeks of life, Josie Toland has undergone a lifetime's worth of medical procedures. She was born two months premature and developed serious lung problems, Gupta reports.
She's had tubes inserted to breathe and to eat, and constant sticks in her heels to draw blood.
"Babies have an average of 10-to-15 painful procedures per day in this unit if they're under 30 weeks gestation, or if they're really sick like Josie was," said Dr. Whit Hall.
Besides fighting for her survival, doctors have been wrestling with another issue: With everything that's been done to her, how much pain is Josie feeling?
As recently as 15 years ago, it was thought that newborns were not developed enough to feel or remember pain. Amazingly, newborns often received little or no anesthesia for most medical procedures - even surgery.
"The folklore became babies don't feel pain, anesthesia is bad for them, let's not give anything," said Dr. K.J.S. Anand.
Gupta said: "What you're describing must have been torture for these babies."
Anand is a leading researcher on how to detect pain in these tiny patients who can't speak and spend most of their time sleeping.
Doctors monitor some of the physical signs of pain, like blood pressure and heart rate, and the obvious behavioral signs like crying and facial expressions. But how do you know the difference between a cry of pain or a cry for hunger?
"You just can't stand over an infant 24-7 and watch them. And that's why I thought a machine system would be pretty good at handling some of these problems," said computer scientist Sheryl Brahnam.
Brahnam works with facial recognition technology to identify key spots in a baby's face that signal pain.
"It's wrong to think that every time a baby experiences pain, they'll cry. They're not. Sometimes all you see is a bulging forehead," Brahnam said.
She's working with facial recognition technology to identify key spots in a baby's face that signal pain. The hope is that one day a camera would constantly monitor the faces of newborns and alert doctors to even the subtle signs that something is wrong.
"It gives the infant a voice, it lets the infant cry out, 'I'm in pain,'" Brahnam said.
Detecting pain in newborns is one thing. Treating it is another.
Unfortunately, the drugs to treat babies' pain are meant for adults. Like morphine and methadone. Even today there is reluctance by doctors and parents to use them.
"Yes, I think there are still medical physicians, nurses, who hold out that babies probably don't feel pain," Anand said.
Some of the techniques to calm babies are tried and true: creating a quiet atmosphere with low lights and swaddling them for comfort.
It's all working for Josie.
"Can you say without a doubt, that Josie is not in pain right now?" Gupta asked Hall.
"I can. I'm basing that on she seems comfortable, she's not crying, she seems to be happy," Hall said.
Evidence that years later, children and adults remember the pain they suffered as babies. Studies show they're more pain sensitive and can have higher rates of ADD.
*****************
You can find the article, including photos and video, here
Thank you to Nancy for the link to this article.
Monday, February 18, 2008
First Do No Harm
Between the conversations going on in the comments section of the post titled "Do Preemies Feel Pain" and a recent conversation I had with someone in the field, I am left wondering what "first do no harm" really means when it comes to neonatology.
I do have a hard time thinking that neo's are out there doing harm on purpose or maliciously. I'm sure there are some, but for the most part, I am the type of person who feels that there is good in all.
So, that leaves me questioning how they do it. Are they only resuscitating very early preemies because the parents request it? Are they all offering comfort care? Do they feel they are doing the right thing? Are they driven by fame (wanting to save the most or the earliest)? Are they driven by money? The God complex? The baby Doe laws?
Do they wonder what happens to our little ones? Do they really want to know? Does the knowledge of the adverse outcomes change the way they do their job?
Am I telling my story for nothing?
I do have a hard time thinking that neo's are out there doing harm on purpose or maliciously. I'm sure there are some, but for the most part, I am the type of person who feels that there is good in all.
So, that leaves me questioning how they do it. Are they only resuscitating very early preemies because the parents request it? Are they all offering comfort care? Do they feel they are doing the right thing? Are they driven by fame (wanting to save the most or the earliest)? Are they driven by money? The God complex? The baby Doe laws?
Do they wonder what happens to our little ones? Do they really want to know? Does the knowledge of the adverse outcomes change the way they do their job?
Am I telling my story for nothing?
Wednesday, February 13, 2008
Tammy asks...
A not so simple question...
Hey Stacy,
Ever since I started reading your blog, it seems like I know you. At least I know where you are coming from, since we are both dealing with the aftermath of prematurity. I have been wanting to ask you if you have found a reply to that question that everyone asks, "How's Paige doing? She looks great." I'm asking this because I have yet to come up with an appropriate response. Whenever someone asks "How's Daniel doing? He looks great." I just let out a big sigh. I never say the right answer. I don't want to glaze over it, like he's a walking miracle but at the same time, I don't want to get into his medical issues. And somehow I always end up walking away upset. Because normally, I say yes, he's great. (Daniel is usually within ear shot). If they start asking more questions, I feel an obligation to say he has some issues, but we're dealing with them. I try to keep the conversation light, but people can be persistent and when you tell the whole truth, I tend to get feedback like, "we'll you didn't think he wouldn't have problems. It could be worse." I am starting to think that people don't want to know the truth about prematurity. I just wish there was a good reply for this simple question that I can't seem to avoid and expect to hear for the rest of my life. So, if you have found the answer to this question, please share it with me. Thank you and thank you for all your work. Your blog is truly an asset to the preemie community.
Sincerely,
Tammy
mom to Daniel, 6 (24 weeks)
PS, if you don't have the answer and want to share the question or content of this email on your blog, you have my permission.
Hi Tammy,
Your question of "what to say when asked how he (Daniel) is doing" is not so simple. For me, it changes both by the day and by who is asking me. Now there is another factor... whether Paige is with me or not.
I first wrote about it here How is she doing?
If Paige is not with me, no matter who asks, they get the truth... all of it. As I start to talk I can tell if my words are going to fall on deaf ears. I'm sure you know the look. It starts out with a glazed look in their eyes and then their facial expression says, "I didn't want to know the all of this. I just wanted you to tell me she is fine so I can go back and tell the world that all preemies turn out fine." To these people I usually shorten the update, but still tell the truth. Years ago, I never used to be honest. I always said that she was "fine" and left it at that. No longer do I do this though.
Again, if Paige is not with me, and the conversation turns to resuscitation, I am honest about my feelings. I never try to make others understand how I could feel this way, but I do make my feelings known.
Now, if Paige is with me it gets trickier. My standard response is "she deals with the typical long term issues related to prematurity and has escaped some too." and then I usually go into being the typical proud mommy and brag about her school accomplishments and how she is such a wonderful big sister. Some people will ask me to elaborate and I ALWAYS ask Paige for permission first. Always. Last year Paige asked me to check with her first before I talk about her. She said that it didn't "really" bother her but I could tell that she was feeling something that she couldn't verbalize. I honor that request. So far, every time I've asked, she's gladly agreed and usually starts to explain on her own. It's fascinating to watch.
But, we came up against a new situation recently. Paige was the star student of the week a few weeks ago. I had to write a letter about her and include pictures. The letter was to be read by the teacher, to the entire class. Paige asked me to talk about her early birth in the letter and include a NICU picture. I wasn't comfortable with this because I wasn't going to be there to explain what all of the wires and tubes were for. And, she is now of an age where the kids tease each other. Instead I chose to include her birth footprints, which are super tiny of course.
As she exited school that day I could tell something was wrong. Paige told me that they had a substitute teacher and that the sub read her letter. After the letter, the sub asked her if she was OK now. Paige responded by telling her everything that she deals with. Everything including the mental health stuff. I could tell that Paige was upset about this exchange. She has no problem telling docs anything they need to know but this was asked in front of 20 of her peers. Paige told me that she didn't want to answer the teacher but didn't know how to avoid it. Her and I sat down and came up with a plan in case that happens again and I told Paige that I was sure the sub learned her lesson. I wish I could have seen her face when she heard my sweet beautiful little girl talk about her life.
I wanted to be angry. I really did. But, all it did was reinforce my belief that the general public is seriously misinformed on the long term issues related to prematurity.
The above represents my experience Tammy. I hope everyone will offer their advice to you on what to say when someone asks, "how is he doing?"
Hey Stacy,
Ever since I started reading your blog, it seems like I know you. At least I know where you are coming from, since we are both dealing with the aftermath of prematurity. I have been wanting to ask you if you have found a reply to that question that everyone asks, "How's Paige doing? She looks great." I'm asking this because I have yet to come up with an appropriate response. Whenever someone asks "How's Daniel doing? He looks great." I just let out a big sigh. I never say the right answer. I don't want to glaze over it, like he's a walking miracle but at the same time, I don't want to get into his medical issues. And somehow I always end up walking away upset. Because normally, I say yes, he's great. (Daniel is usually within ear shot). If they start asking more questions, I feel an obligation to say he has some issues, but we're dealing with them. I try to keep the conversation light, but people can be persistent and when you tell the whole truth, I tend to get feedback like, "we'll you didn't think he wouldn't have problems. It could be worse." I am starting to think that people don't want to know the truth about prematurity. I just wish there was a good reply for this simple question that I can't seem to avoid and expect to hear for the rest of my life. So, if you have found the answer to this question, please share it with me. Thank you and thank you for all your work. Your blog is truly an asset to the preemie community.
Sincerely,
Tammy
mom to Daniel, 6 (24 weeks)
PS, if you don't have the answer and want to share the question or content of this email on your blog, you have my permission.
Hi Tammy,
Your question of "what to say when asked how he (Daniel) is doing" is not so simple. For me, it changes both by the day and by who is asking me. Now there is another factor... whether Paige is with me or not.
I first wrote about it here How is she doing?
If Paige is not with me, no matter who asks, they get the truth... all of it. As I start to talk I can tell if my words are going to fall on deaf ears. I'm sure you know the look. It starts out with a glazed look in their eyes and then their facial expression says, "I didn't want to know the all of this. I just wanted you to tell me she is fine so I can go back and tell the world that all preemies turn out fine." To these people I usually shorten the update, but still tell the truth. Years ago, I never used to be honest. I always said that she was "fine" and left it at that. No longer do I do this though.
Again, if Paige is not with me, and the conversation turns to resuscitation, I am honest about my feelings. I never try to make others understand how I could feel this way, but I do make my feelings known.
Now, if Paige is with me it gets trickier. My standard response is "she deals with the typical long term issues related to prematurity and has escaped some too." and then I usually go into being the typical proud mommy and brag about her school accomplishments and how she is such a wonderful big sister. Some people will ask me to elaborate and I ALWAYS ask Paige for permission first. Always. Last year Paige asked me to check with her first before I talk about her. She said that it didn't "really" bother her but I could tell that she was feeling something that she couldn't verbalize. I honor that request. So far, every time I've asked, she's gladly agreed and usually starts to explain on her own. It's fascinating to watch.
But, we came up against a new situation recently. Paige was the star student of the week a few weeks ago. I had to write a letter about her and include pictures. The letter was to be read by the teacher, to the entire class. Paige asked me to talk about her early birth in the letter and include a NICU picture. I wasn't comfortable with this because I wasn't going to be there to explain what all of the wires and tubes were for. And, she is now of an age where the kids tease each other. Instead I chose to include her birth footprints, which are super tiny of course.
As she exited school that day I could tell something was wrong. Paige told me that they had a substitute teacher and that the sub read her letter. After the letter, the sub asked her if she was OK now. Paige responded by telling her everything that she deals with. Everything including the mental health stuff. I could tell that Paige was upset about this exchange. She has no problem telling docs anything they need to know but this was asked in front of 20 of her peers. Paige told me that she didn't want to answer the teacher but didn't know how to avoid it. Her and I sat down and came up with a plan in case that happens again and I told Paige that I was sure the sub learned her lesson. I wish I could have seen her face when she heard my sweet beautiful little girl talk about her life.
I wanted to be angry. I really did. But, all it did was reinforce my belief that the general public is seriously misinformed on the long term issues related to prematurity.
The above represents my experience Tammy. I hope everyone will offer their advice to you on what to say when someone asks, "how is he doing?"
Sunday, February 10, 2008
Do Preemies Feel Pain?
An article was printed in today's NY Times, titled "The First Ache".
(Please forgive me for not including any of the article. I am not sure how much I am allowed to copy into a public blog.)
The article tackles the question of whether or not preemies (and fetuses) can feel pain and whether or not it alters the child.
This argument is not a new one and has been known to start comment wars on blogs. I am asking everyone to be mindful of others thoughts and research on this topic when they post a comment.
Dr. Phillip Gordon (neonatologist) wrote his feelings on the topic in a post titled "Debunking the Pseudoscience of Infant Memories"on his blog Tales From the Womb. I am not including a link to his blog to incite a war on docs. I simply want to show both sides of the coin.
I am not a doctor nor am I qualified to comment on the science behind the issue. I am, however, a mother of a premature child who endured her entire NICU stay without pain meds.
I find it hard to believe that prolonged exposure to pain would NOT cause change in a child.
(Please forgive me for not including any of the article. I am not sure how much I am allowed to copy into a public blog.)
The article tackles the question of whether or not preemies (and fetuses) can feel pain and whether or not it alters the child.
This argument is not a new one and has been known to start comment wars on blogs. I am asking everyone to be mindful of others thoughts and research on this topic when they post a comment.
Dr. Phillip Gordon (neonatologist) wrote his feelings on the topic in a post titled "Debunking the Pseudoscience of Infant Memories"on his blog Tales From the Womb. I am not including a link to his blog to incite a war on docs. I simply want to show both sides of the coin.
I am not a doctor nor am I qualified to comment on the science behind the issue. I am, however, a mother of a premature child who endured her entire NICU stay without pain meds.
I find it hard to believe that prolonged exposure to pain would NOT cause change in a child.
Saturday, February 9, 2008
Stuck On Funk
Over the past 9 years (since Paige's birth) my emotions have run the gamut.
Some days my meter reads happy or content.
Some days my meter reads angry or sad.
During these 9 years, the needle has even landed on funk. The funks stays for a few days and then I am able to pick myself back up and move on. It has never lasted for more than a few days and has never happened more than once or twice a year.
Unfortunately, my needle seems to be stuck on funk right now. Rusted in place. It's been this way for a few weeks. I can't pinpoint what caused the needle to stick but I'm desperately looking for the oil can.
Some days my meter reads happy or content.
Some days my meter reads angry or sad.
During these 9 years, the needle has even landed on funk. The funks stays for a few days and then I am able to pick myself back up and move on. It has never lasted for more than a few days and has never happened more than once or twice a year.
Unfortunately, my needle seems to be stuck on funk right now. Rusted in place. It's been this way for a few weeks. I can't pinpoint what caused the needle to stick but I'm desperately looking for the oil can.
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