Saturday, August 7, 2010
My birthday present :)
So I didn't really think anything could top last year's birthday present (the vasectomy :P) but it's officially been topped. As of 10PM on August 6th, my Dax is a walker :) Video to come!
Wednesday, August 4, 2010
Random Fact
On a completely unrelated note, I now use Blogger in Draft which allows you to see, among other things, which posts are read most often, what time of the day I get the most hits, and how readers locate my blog in the first place. I find it absolutely hilarious that my blog, which primarily revolves around my premature son and his fat sidekick, is RARELY visited by people who googled the obvious topics. Noooo, I get, by far, more visits from people who have googled "How to neuter your husband."
And that, my friends, makes me happier than it should! :D
And that, my friends, makes me happier than it should! :D
My Wal-Mart Epiphany
Ever have one of those random moments when reality smacks you in the back of the head? As I was walking through the grocery store the other day I sneezed, subsequently peed on myself, and had an epiphany. (It was a very busy moment in time.) I’m getting dangerously close to my VERY late, late, late, late, late, late, late, twenties, and it all of a sudden struck me that my life is nothing, absolutely nothing, like what I had planned ten years ago when I was in my VERY late, late, late, late, late, late, late teens.
In fact, I’m living a life I would have never chosen. Not in a million years.
If you’d asked me when I was in my VERY late teens where I’d be in ten years, I would have told you who I was going to marry, what I was going to be doing professionally, and there would be no children, not until later on. I’d have money to boot and the perfect car and house and vacations. Although I wouldn’t have thought to mention it then, I’m relatively sure my VERY late teenager self would have expected my VERY late twenties self to shave her legs and brush her teeth everyday with no possible foreseeable exceptions…
If, in my VERY late teens, you’d have offered me a life that revolved around poop, bottles, and doctors’ appointments, I’d have told you no.
If, in my VERY late teens, you’d have offered me a special needs child with a twin who didn’t make it, and a fat little whiny infant who hates play hamsters and kazoos and cries when you look at him cross-eyed… Well, I’d have passed.
If, in my VERY late teens, you’d have offered me a job that pays the bills with little extra, an 8-year-old gas guzzler, and a relationship more complicated than most… I’d have asked for what was behind Door Number 2.
If, in my VERY late teens, you’d have said one day, ten years from now, me and my hairy legs and grown-out-and-turning-gray roots would be pushing a diaper-laden buggy through Wal-Mart and I would sneeze, and then subsequently pee on myself… again… and that it wouldn’t strike me as unusual… I’d have laughed at the pure ridiculousness of it and politely declined…
In fact, I’d have pitied the person who did live that life. I’d have thought that a life less than enviable. Maybe even a second rate life. Most definitely not one I’d choose for myself. I’d have been thankful to know that nothing like that would ever in a million years happen to me…
As I walked on through getting groceries that consisted of generic easy-to-chew-and-swallow foods that adults and toddlers can share and nutrient-packed food items that I don’t really like but I eat whatever the kids have left over, I thought about my life, and who I am today.
You know, my very, very, very, very, very, very, VERY late twenty-ish self…
And I think I have a life that others SHOULD envy. My VERY late teenaged self would have been wrong.
Really, what’s not to love about my life?
It’s truly an amazing thing, the paths we end up taking in life… We see the future like it’s a first-class flight where we buckle in, kick back, and watch an in-flight movie while we cruise where we want to go, when, in fact, it’s a cross-country road trip in a lemon with a broken GPS and a lot of hitch hikers. It’s maddening and frightening and uncomfortable and smelly sometimes, but it’s also delightful and beautiful, and it’s the idiosyncrasies and the detours that make it memorable and fascinating.
But I never really realized that.
But it was my Wal-Mart epiphany.
I think realizing that… that I am living a life I would not change… that my definition of “perfect” is much longer and more detailed than it once was… that happiness is not a direct product of having fun… will help me bridge that transition from my VERY late, late, late, late, late, late, late, late, twenties, to my VERY, very, very, very, very, very early thirties on Saturday.
Here’s hoping that my next ten years are as full of joy and beautiful detours as my last ten have been… and maybe this time around I’ll choose to spend a little less time on the interstate and be able to avoid a few more potholes.
But if I don't, it'll be okay.
In fact, I’m living a life I would have never chosen. Not in a million years.
If you’d asked me when I was in my VERY late teens where I’d be in ten years, I would have told you who I was going to marry, what I was going to be doing professionally, and there would be no children, not until later on. I’d have money to boot and the perfect car and house and vacations. Although I wouldn’t have thought to mention it then, I’m relatively sure my VERY late teenager self would have expected my VERY late twenties self to shave her legs and brush her teeth everyday with no possible foreseeable exceptions…
If, in my VERY late teens, you’d have offered me a life that revolved around poop, bottles, and doctors’ appointments, I’d have told you no.
If, in my VERY late teens, you’d have offered me a special needs child with a twin who didn’t make it, and a fat little whiny infant who hates play hamsters and kazoos and cries when you look at him cross-eyed… Well, I’d have passed.
If, in my VERY late teens, you’d have offered me a job that pays the bills with little extra, an 8-year-old gas guzzler, and a relationship more complicated than most… I’d have asked for what was behind Door Number 2.
If, in my VERY late teens, you’d have said one day, ten years from now, me and my hairy legs and grown-out-and-turning-gray roots would be pushing a diaper-laden buggy through Wal-Mart and I would sneeze, and then subsequently pee on myself… again… and that it wouldn’t strike me as unusual… I’d have laughed at the pure ridiculousness of it and politely declined…
In fact, I’d have pitied the person who did live that life. I’d have thought that a life less than enviable. Maybe even a second rate life. Most definitely not one I’d choose for myself. I’d have been thankful to know that nothing like that would ever in a million years happen to me…
As I walked on through getting groceries that consisted of generic easy-to-chew-and-swallow foods that adults and toddlers can share and nutrient-packed food items that I don’t really like but I eat whatever the kids have left over, I thought about my life, and who I am today.
You know, my very, very, very, very, very, very, VERY late twenty-ish self…
And I think I have a life that others SHOULD envy. My VERY late teenaged self would have been wrong.
Really, what’s not to love about my life?
It’s truly an amazing thing, the paths we end up taking in life… We see the future like it’s a first-class flight where we buckle in, kick back, and watch an in-flight movie while we cruise where we want to go, when, in fact, it’s a cross-country road trip in a lemon with a broken GPS and a lot of hitch hikers. It’s maddening and frightening and uncomfortable and smelly sometimes, but it’s also delightful and beautiful, and it’s the idiosyncrasies and the detours that make it memorable and fascinating.
But I never really realized that.
But it was my Wal-Mart epiphany.
I think realizing that… that I am living a life I would not change… that my definition of “perfect” is much longer and more detailed than it once was… that happiness is not a direct product of having fun… will help me bridge that transition from my VERY late, late, late, late, late, late, late, late, twenties, to my VERY, very, very, very, very, very early thirties on Saturday.
Here’s hoping that my next ten years are as full of joy and beautiful detours as my last ten have been… and maybe this time around I’ll choose to spend a little less time on the interstate and be able to avoid a few more potholes.
But if I don't, it'll be okay.
Tuesday, August 3, 2010
Monday, August 2, 2010
TyTy's First Birthday!!!
A day in pictures :)
Wimpy white boys unite :)
Super cute Cookie Monster cake from Sweet and Sassy
Ty's wish? More cake.
I love his onesie :)
Ty giving his favorite Sesame Street character a little sugar
Hmmm, this isn't half bad...
Not only was his face covered, this is also what his next 8 poops looked like.
Dax and Kins and the coke bottle that entertained them for half an hour
Not a big fan of public nudity... Or of having 7 lbs of cookie monster icing removed from his chubby little body.
Such a sweet boy! I can't believe he's one!!!
Saturday, July 24, 2010
Letter I will be sending to Vanderbilt
Some of you may have already seen my earlier draft, but here's my final draft that I will be sending to patient affairs and several other departments following our recent hospital stay. Please feel free to leave any input!
July 23, 2010
To Whom It May Concern:
I would like to take a moment to discuss my recent experience with Vanderbilt Children’s Hospital. I have had an overall dissatisfying experience despite the many wonderful facets of your institution, and I hope that, by sharing, I may improve the experience for other families in the future.
To begin, let me first tell you a little about my son. He was a surviving twin born at 23 weeks gestation who spent his first eight months of life in the NICU. He is now a curious, rambunctious two-year-old with multiple chronic medical issues. He, most notably, is diagnosed with pulmonary hypertension, atrial septal defects, broncho-pulmonary dysplasia, cerebellar hypoplasia, and a paralyzed vocal chord, and he requires supplemental O2, Viagra therapy, and a feeding tube in his daily life to maintain his health. We have scheduled, routine visits here at Vanderbilt with pulmonology, endocrinology, otolaryngology, audiology, and opthamology, and we routinely utilize specialists outside of Vanderbilt for cardiology and neurology.
I tell you all this because on Saturday, July 17, my son experienced a spontaneous apparent life threatening event of unknown etiology in our home, requiring me to resuscitate, and resulting in our first emergent transport, first ER visit, and first unplanned hospitalization in the 20 months he has been home from the NICU.
Upon arrival, the treatment team gathered information and began routine labs and a chest x-ray to determine what had caused the event, but the focus was quickly shifted to a thinly-veiled abuse investigation during which I was made to feel guilty until proven innocent.
I recognize and appreciate there are procedures in place to protect our children, and many times before I have been the one doing the investigating. I would have had no issues with the barrage of loaded questions or with my son being put through a full-skeletal x-ray and other exams, had someone simply said, “We’re sorry, this is standard operating procedure for any child with petechial hemorrhaging ,” or something comparable. I do, however, have a problem with being treated discourteously when there is overwhelming evidence to anyone who looks at the child, his behavioral responses, and his medical history, that our child is extremely well taken care of and remarkably healthy despite his chronic concerns, and I also take issue with being outright lied to about why the tests are being done in the first place. I understand that everyone is still feeling outrage regarding the pediatrician from Mt. Juliet who recently killed her adopted daughter, but every family cannot be blamed for one family’s very tragic, heartbreaking decisions. A little more communication, courtesy, and common sense could have gone a long way in making this already traumatic situation a little less stressful for us as a family, and I can only hope that every special needs family is not treated with the same manner of accusation and disrespect that we felt with our own special needs child.
Once the abuse allegations were put to rest, and the standard tests and an EKG came back normal, we were told we could go home. The doctors felt it had “probably just been a febrile seizure brought on by his current viral infection” and that he was fine to go home if I was comfortable. I was not comfortable. At that time, my son was still running a fever of 102.7-103.7 requiring ongoing Tylenol and Motrin, and he was experiencing infrequent, but present, apnea and desat spells. He was unable to eat food by mouth without coughing and gagging until he vomited. In addition to those things, please don’t forget my son had recently had a spontaneous ALTE at home that required resuscitation, and I was not content with him “probably being fine.” Listening to a doctor who said everything would “probably be fine” is why I now have a dead daughter and a son who’s had to fight so hard to live, so please forgive me for being a little extra cautious.
I want to add here that, as a mother of a chronic lung diseased child with cardiac issues, I am familiar with what is normal for him, and what is very much not normal for him. I know his breath sounds and his coloring. I know what my child looks like when he sats in the 50s or 60s. I know when I’m getting a false reading on the oximeter. I know how to tell by how blue my child is just how serious his current condition is. I am not an expert in all children, but I know my own child better than anyone else, and I know that, on Saturday, when I found him, he was not breathing and he was gray, nonresponsive, limp, and lifeless. I am not exaggerating the situation nor making light of it; it is what it is. That being said, I never felt as if anyone gave any credence to what I saw or did, as obviously I am just a mother, and one they had already labeled as a child abuser, no less.
My final complaint is the apparent lack of communication with my son’s specialists. When a chronically-ill child who has been medically stable suddenly stops breathing, it seems to me that consulting the child’s pulmonologist and cardiologist would be fairly routine steps in the treatment process, as well as possibly his ENT and neurologist as other potential diagnoses arise. I was extremely disappointed to find that, despite my verbal request to do so, my son’s cardiologist had not been notified of my son’s event or emergent hospitalization, especially considering she was on-call the weekend the event occurred. She instead came by after I alerted her to his hospitalization to do an evaluation of my son’s cardiac function based on her own concerns. My son’s regular pulmonologist also came by per my request after our attending had already offered to discharge us. Both specialists have been following my son since discharge from the NICU and have extensive knowledge of his history and patterns that could have been beneficial to the treatment process if utilized, and I would never have felt safe taking my son home following such a potentially devastating event without their input. I feel not seeking their input prior to attempting to discharge my son was medically negligent considering my son’s extensive medical history and the treatment team’s inability to determine a definitive etiology of the ALTE. I also repeatedly asked the team to contact the otolaryngology department to have someone come examine my son and make recommendations regarding any apnea and swallowing issues, and the team adamantly and repeatedly refused my request, instead opting to set up an outpatient visit the day after discharge. I did not find it safe or beneficial for any involved parties to return my son with an obviously nasty virus to the hospital to a waiting room filled with mostly well- and medically-fragile children, although I did follow through with the appointment as requested.
I would like to add, however, that despite my lack of satisfaction with much of my experience, we did receive excellent nursing care and care partner assistance during our stay, and I was surprisingly pleased with Katherine Shaw, the medical student assigned to our case. I very rarely have pleasant experiences with the residents, and that remained mostly true this visit, however, our medical student was honest with me each time she visited our room, and she exhibited an outstanding ability to work within the boundaries of her knowledge while still maintaining an air of intelligence, professionalism, and compassion. She also seemed more interested in gaining knowledge and experience than simply showing off that which she had already acquired, and that is a rare but welcome characteristic of a resident based on our previous experiences. Based on what we saw of her during our visit, she will potentially one day be the kind of doctor we would choose for our children, and it’s rare that I make that type of statement regarding a student, resident, or, to be completely honest, attending. We were grateful to have her on my son’s treatment team, and we feel she will be a great asset to your residency program.
Thank you for allowing me to voice my opinions on our stay. Hospitalization is never pleasant, but some very minor changes in how our son’s treatment was approached could have had a major impact on my feelings about this stay and Vanderbilt in general. At this time, however, I am left feeling disappointed, dissatisfied, and angry, and will in the future spend more time weighing the costs and benefits of traveling to more distant children’s hospitals in hopes of better service and commitment to the children and families served.
Thank you for your time, and for all the many good things you do.
Sincerely,
Mollie Sheppard, mother of Daxton Sheppard
Thoughts?
July 23, 2010
To Whom It May Concern:
I would like to take a moment to discuss my recent experience with Vanderbilt Children’s Hospital. I have had an overall dissatisfying experience despite the many wonderful facets of your institution, and I hope that, by sharing, I may improve the experience for other families in the future.
To begin, let me first tell you a little about my son. He was a surviving twin born at 23 weeks gestation who spent his first eight months of life in the NICU. He is now a curious, rambunctious two-year-old with multiple chronic medical issues. He, most notably, is diagnosed with pulmonary hypertension, atrial septal defects, broncho-pulmonary dysplasia, cerebellar hypoplasia, and a paralyzed vocal chord, and he requires supplemental O2, Viagra therapy, and a feeding tube in his daily life to maintain his health. We have scheduled, routine visits here at Vanderbilt with pulmonology, endocrinology, otolaryngology, audiology, and opthamology, and we routinely utilize specialists outside of Vanderbilt for cardiology and neurology.
I tell you all this because on Saturday, July 17, my son experienced a spontaneous apparent life threatening event of unknown etiology in our home, requiring me to resuscitate, and resulting in our first emergent transport, first ER visit, and first unplanned hospitalization in the 20 months he has been home from the NICU.
Upon arrival, the treatment team gathered information and began routine labs and a chest x-ray to determine what had caused the event, but the focus was quickly shifted to a thinly-veiled abuse investigation during which I was made to feel guilty until proven innocent.
I recognize and appreciate there are procedures in place to protect our children, and many times before I have been the one doing the investigating. I would have had no issues with the barrage of loaded questions or with my son being put through a full-skeletal x-ray and other exams, had someone simply said, “We’re sorry, this is standard operating procedure for any child with petechial hemorrhaging ,” or something comparable. I do, however, have a problem with being treated discourteously when there is overwhelming evidence to anyone who looks at the child, his behavioral responses, and his medical history, that our child is extremely well taken care of and remarkably healthy despite his chronic concerns, and I also take issue with being outright lied to about why the tests are being done in the first place. I understand that everyone is still feeling outrage regarding the pediatrician from Mt. Juliet who recently killed her adopted daughter, but every family cannot be blamed for one family’s very tragic, heartbreaking decisions. A little more communication, courtesy, and common sense could have gone a long way in making this already traumatic situation a little less stressful for us as a family, and I can only hope that every special needs family is not treated with the same manner of accusation and disrespect that we felt with our own special needs child.
Once the abuse allegations were put to rest, and the standard tests and an EKG came back normal, we were told we could go home. The doctors felt it had “probably just been a febrile seizure brought on by his current viral infection” and that he was fine to go home if I was comfortable. I was not comfortable. At that time, my son was still running a fever of 102.7-103.7 requiring ongoing Tylenol and Motrin, and he was experiencing infrequent, but present, apnea and desat spells. He was unable to eat food by mouth without coughing and gagging until he vomited. In addition to those things, please don’t forget my son had recently had a spontaneous ALTE at home that required resuscitation, and I was not content with him “probably being fine.” Listening to a doctor who said everything would “probably be fine” is why I now have a dead daughter and a son who’s had to fight so hard to live, so please forgive me for being a little extra cautious.
I want to add here that, as a mother of a chronic lung diseased child with cardiac issues, I am familiar with what is normal for him, and what is very much not normal for him. I know his breath sounds and his coloring. I know what my child looks like when he sats in the 50s or 60s. I know when I’m getting a false reading on the oximeter. I know how to tell by how blue my child is just how serious his current condition is. I am not an expert in all children, but I know my own child better than anyone else, and I know that, on Saturday, when I found him, he was not breathing and he was gray, nonresponsive, limp, and lifeless. I am not exaggerating the situation nor making light of it; it is what it is. That being said, I never felt as if anyone gave any credence to what I saw or did, as obviously I am just a mother, and one they had already labeled as a child abuser, no less.
My final complaint is the apparent lack of communication with my son’s specialists. When a chronically-ill child who has been medically stable suddenly stops breathing, it seems to me that consulting the child’s pulmonologist and cardiologist would be fairly routine steps in the treatment process, as well as possibly his ENT and neurologist as other potential diagnoses arise. I was extremely disappointed to find that, despite my verbal request to do so, my son’s cardiologist had not been notified of my son’s event or emergent hospitalization, especially considering she was on-call the weekend the event occurred. She instead came by after I alerted her to his hospitalization to do an evaluation of my son’s cardiac function based on her own concerns. My son’s regular pulmonologist also came by per my request after our attending had already offered to discharge us. Both specialists have been following my son since discharge from the NICU and have extensive knowledge of his history and patterns that could have been beneficial to the treatment process if utilized, and I would never have felt safe taking my son home following such a potentially devastating event without their input. I feel not seeking their input prior to attempting to discharge my son was medically negligent considering my son’s extensive medical history and the treatment team’s inability to determine a definitive etiology of the ALTE. I also repeatedly asked the team to contact the otolaryngology department to have someone come examine my son and make recommendations regarding any apnea and swallowing issues, and the team adamantly and repeatedly refused my request, instead opting to set up an outpatient visit the day after discharge. I did not find it safe or beneficial for any involved parties to return my son with an obviously nasty virus to the hospital to a waiting room filled with mostly well- and medically-fragile children, although I did follow through with the appointment as requested.
I would like to add, however, that despite my lack of satisfaction with much of my experience, we did receive excellent nursing care and care partner assistance during our stay, and I was surprisingly pleased with Katherine Shaw, the medical student assigned to our case. I very rarely have pleasant experiences with the residents, and that remained mostly true this visit, however, our medical student was honest with me each time she visited our room, and she exhibited an outstanding ability to work within the boundaries of her knowledge while still maintaining an air of intelligence, professionalism, and compassion. She also seemed more interested in gaining knowledge and experience than simply showing off that which she had already acquired, and that is a rare but welcome characteristic of a resident based on our previous experiences. Based on what we saw of her during our visit, she will potentially one day be the kind of doctor we would choose for our children, and it’s rare that I make that type of statement regarding a student, resident, or, to be completely honest, attending. We were grateful to have her on my son’s treatment team, and we feel she will be a great asset to your residency program.
Thank you for allowing me to voice my opinions on our stay. Hospitalization is never pleasant, but some very minor changes in how our son’s treatment was approached could have had a major impact on my feelings about this stay and Vanderbilt in general. At this time, however, I am left feeling disappointed, dissatisfied, and angry, and will in the future spend more time weighing the costs and benefits of traveling to more distant children’s hospitals in hopes of better service and commitment to the children and families served.
Thank you for your time, and for all the many good things you do.
Sincerely,
Mollie Sheppard, mother of Daxton Sheppard
Thoughts?
Tuesday, July 20, 2010
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