So finally we can share pictures of Maddie's car. She wanted to be an M&M (or at our house those are known as "minnows" - not sure why!!) Anyway, Greg and Maddie did an excellent job on the car and everyone had a great time at the event!!
Kelly
Monday, April 28, 2008
Thursday, April 24, 2008
Thank you to everyone for supporting us!!
Thank you so much to everyone who has supported us and emailed us about the ridiculous interchange of words we have shared with Mr. Parks of The Birmingham News. It amazes me that someone could be so hard hearted, but it just makes me that much more appreciative of the positive people with which we have the pleasure of sharing our lives!! We have tried not to make any pointed comments about Mr. Parks on this blog other than those that we have already shared with him via email. But I think that just posting his comments and ours to him in return speaks volumes about his character without me needing to say a word. For my career, I am basically a writer of sorts and I learned a long time ago that stating just the facts (and keeping personal opinion out of it) is much more professional. Where Mr. Parks overstepped his bounds with Greg and I was by making it a personal attack on Kathryn. Once again, thanks to everyone who responded to us with such kind words of support. I didn't just stand up for Kathryn, but all of the miracles we have come to know.
Now for some new pictures of my beautiful girls who have benefitted from "fruitless medical technology"!!
Can anyone find Kathryn? (It's like ET.)
Sister snuggles!! (The best kind!)
Wednesday, April 23, 2008
Mr. Parks' oh so wordy response
Thanks for the feedback. Sorry, I didn't mean to offend you.
--Dave
I think his words speak volumes about his character!
--Dave
I think his words speak volumes about his character!
Dad's response to Mr. Parks Email
Mr. Parks and all Senior Editorial Staff,
I would like to take this opportunity to share some thoughts and commentary on the recent article that Mr. Parks published last week and the resulting correspondence between Mr. Parks and my wife, Kelly Ellis. As you know, Mr. Parks wrote an article last Thursday, April 17th regarding the "New Guidelines to Help Determine Premature Survival Rate". In response to the article my wife submitted an Opinion response to The News which was published in yesterday's paper. In all honesty, I figured that the debate would likely stop at that point, or at the very most we would receive a stock "thank you for your opinion" form letter from either Mr. Parks or The News editorial staff. Boy was I wrong!
What I share with you all is a truly heartless, cold, and disturbing response that smacks of an absolute disregard for humanity, not to mention my family. I hope that upon reading Mr. Parks' email response that you will be embarrassed that your fellow co-worker had the audacity to send such a response as an employee and ambassador of the Birmingham News. I find it interesting that Mr. Parks was not brave enough to courtesy copy any of his editorial staff or management to enlighten them to his private reply to my wife. I would also surmise that it is not routine or approved practice to address a reader in this manner without clearing such a response with an editor or member of management first. At this point, I am sure that you think that I am completely overreacting to a poorly thought out or hastily sent response by Mr. Parks. To give you all the necessary background to understand why I expect to receive a published written apology to my family and the other parents of extremely premature babies I ask you to indulge the rest of this email. This email will be quite lengthy; however, I hope that after you have finished reading you will see why my wife and I are so troubled by callous private response and the poor reflection that it has on the integrity of the staff at the Birmingham News.
In early July 2007 my wife was passing the halfway point of her third pregnancy feeling great and on her way to a healthy third trimester. Our first baby was lost to a miscarriage early in the second trimester. Our second pregnancy (first daughter) was delivered at 30 weeks due to complications with pre-eclampsia. As a result of the various complications that my wife faced during the first two pregnancies our doctors monitored her very closely during her third pregnancy. On Friday evening July 20, 2007 my wife began complaining of excess swelling and decided that the doctors should be called. As a measure of precaution the doctors admitted my wife to Brookwood Hospital for observation. By mid day the following day we were informed that she was again experiencing the onset of pre-ecclampsia and that since she was just past halfway in her pregnancy the doctors were going to keep her in the hospital as long as possible to allow for further development of our daughter. At this point we were introduced to the neonatology team and given all of the knowledge and common statistics regarding the viability of life at various gestational stages. We were informed that at 22 weeks that there was little hope for survival, and that at 23 & 24 weeks there was a slightly increased chance of survival but that survival would likely be accompanied by lifelong and very serious health risks. We were also informed that at 22-24 weeks gestation that the methods and practices required to help a child survive could be difficult, painful, and potentially result in more damage to the child. We certainly were given the opposite side of the spectrum as well and informed that we could likely be faced with making the decision to allow our child to pass if the potential for survival was decreasing. The interesting part in all of the discussions that were had in that first 24 hour period is that never did any of the doctors or nurses give us the slightest impression that at barely 23 weeks gestation, our child was not going to be given the absolute greatest chance and care to promote survival even given the grim and doubtful future that faced her. There was never a second that I felt that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on a "risky" and likely "fruitless" efforts.
On July 25, 2007 at 24 weeks gestation our second daughter Kathryn was born. She was 11 inches and 14 ounces at birth. Immediately following birth she was rushed to the NICU and immediately ventilated and placed into an incubator where she would stay until late December 2007. I will tell you that 11 inches and 14 ounces may not resonate in words, but as a man, and as a father I have neven been so scared, fearful, and humbled in my life as the first second I saw my youngest daughter. All of the bad decisions and wasted moments of my life to that second flashed before my eyes. I was immediately terrified that there was something that I had done in my life to cause my daughter to be born into this world in such a fragile and completely unprepared way. As soon as my wife was recovered enough to talk with the doctors they were careful to inform us that she was very pre-mature and was what they termed micro-preemie. Her chances of survival were minimal, and that there were enormous obstacles she would have to overcome from that day forward to give indication as to whether she would survive and in what state if she did. Again however even at the depth of our confidence level there was not a second that I sensed that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on a "risky" and likely "fruitless" efforts.
As the days and weeks progressed were given small amounts of hope from the hospital that while things were not necessarily improving, but that our daughter was surviving. She was receiving countless dollars worth of x-rays, CT scans, bloodwork, ventilation, therapy, medications, not to mention the 24/7 monitoring and attention by the NICU staff. She was receiving expert consultation from doctors at UAB and Childrens Hospital as well. All of this costing ridiculous amounts of money and time by the healthcare system. All for one single 14 ounce "risky" and likely "unviable" life. All of this was until late August 2007 when we were called by the doctors and informed that our daughter was experiencing some complications and there was concern for her life. My wife and I were again taken to the brink of a decision we did not want to make. The concept or notion that one night could potentially bring us to a decision point to proceed with treatment or whether to stop was suddenly upon us. As that night went on the doctors came to us and informed us that all the efforts they were attempting were not working and that they were running out of options. They asked us to talk to them, pray with them, and to brainstorm with them what to do next. I remember in the early morning hours my wife and I walking back in to the NICU to check on our daughter and seeing the incubator lid raised for the first time in her short life exposing her to outside air. This immediately scared us thinking that there was another downturn and that the decision was upon us. Amazingly, every single nurse and doctor on call in that NICU was around our daughter carrying on normal conversation, laughing, and crying because it seemed that the only thing that was causing our daughter's vital signs to stabilize were the sounds of life going on around her. At this point in my life I knew that while medical science was allowing my daughter to "survive" and improve her viability in this world, it was pure human compassion and caring and God's divine grace that was allowing her to "LIVE". Yet again there was never a second that I felt that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on "risky" or "fruitless" efforts.
From the time we entered the NICU with our daughter we were asked to approve countless procedures and tests to be performed on our daughter. She suffered from infections, required potentially damaging steroid treatments, and was temporarily medically paralyzed for three weeks to allow her body to recover and heal. All of these had drastic and disfiguring affects on her body. She lost tips of fingers and toes due to lack of blood flow, and was swollen immensely due to paralyzation, all of these things were particularly difficult to see as a parent and even more difficult to impose upon your child. However in her best interest and at the advise of her doctors these were the treatments that were needed. Again all of these procedures were being done for a "risky" and likely "fruitless" life and likely taking valuable medical attention from someone else who was much more "deserving".
Finally, in late December 2007 our daughter was released to come home for the first time in her life. For the first five months in the NICU our daughter likely cost the healthcare system approximately $2-3 million dollars and untold man-hours of medical staff time. Since December she has returned to Children's Hospital for two additional 2-4 week long admissions due to complications which have likely cost the healthcare system another $1 million dollars and more man-hours of medical staff time. Additionally I would like to make you aware that both times we were readmitted to Children's Hospital there were massive amounts of time and sometimes days to get into a room because the hospital was booked solid. The interesting part is that because my family has experienced the benefits of the millions of dollars of medical time and research I don't remember complaining about having to wait for a room while another "risky" child was being attended to by more "fruitless" medical technology.
I will say that I am honest enough to admit to the world that I am 100% selfish and 100% human and I feel like my child deserved every fighting chance that was afforded to her to survive. I will also say that I do not consider myself to be more deserving than anyone else nor my child to be more deserving than any other child. I am appalled to think that Mr. Parks is equating a child's life to a "business decision" based on which children offer the greatest return on investment. I cannot imagine if I were a doctor having to make that "business decision" as to which children deserve the benefit of our healthcare system. I assume based on Mr. Park's logic that allocation of healthcare resources is purely business driven decision then his next article should be based on study related guidelines for when to advise families to terminate care for cancer patients, AIDS patients, stroke victims, or the elderly. I guess Mr. Park's pointing out to us that if there is a point at which life and the viability of life become a decreased potential for the healthcare system to make a profit then doctors and researchers will continue to come up with guidelines to help set the boundaries so we will all know when to throw in the towel on a life!
Last but not least, I am particularly insulted by Mr. Parks last statement "I certainly am glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. I pray that God continues to bless her." In case you can't tell from my email I am forever grateful to the doctors, nurses, administrators, researchers, and anyone else that directly or indirectly cared for my daughter and brought her home to our family. If you can't tell as well I am also fully aware of the amount of money and effort that it has cost to bring our daughter home, and I am forever grateful as well. But do not have the audacity to throw that in to justify in some deranged backhanded way your argument for making life or death decisions based solely on which babies you feel worthy of the care. If you said what you really meant to say then it would have gone something like this... "I am certainly glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. Because had your child had not lived then I as a member of society would be sending you a bill for the money, effort, and care that we as a society extended to your child that was taking time away from another more deserving child".
Mr. Parks your original article was essentially a piece that outlined widely known information that many neonatologists have been using for quite some time. Our family was given much if not all of the information that these new "guidelines" state. In the end our family in consultation with our doctors and God made the only choice available to us which was to take every chance possible to preserve the life of our daughter. I still agree with my wife's original Opinion that the research data is there to provide information and educate, but is too dangerous for our society to use as a "guideline" to determine life or death. I do not know if you have been faced in your life with the decision to care for the well-being of a dying or struggling loved one. I do not know whether you are a parent or not. I would guess by your email to my wife that you are not a parent and have likely not had a significant experience in your life that requires decisions that can determine if life continues or not. Either way, it is not my place to assume, simply to point out that if in fact you have then I am not sure what wisdom it granted you otherwise your comments might have been more humane. In the end I hope that you see my perspective and now fully understand the level of disgust I have with your email to my wife. I would expect a reply from yourself or anyone that receives this email in the editorial staff. I would also hope that the News as a whole has the integrity to stand up and admit when a writer has overstepped the bounds of decency and has insulted a reader to the degree that I hope you all now understand and can respect.
Sincerely
Greg Ellis
I would like to take this opportunity to share some thoughts and commentary on the recent article that Mr. Parks published last week and the resulting correspondence between Mr. Parks and my wife, Kelly Ellis. As you know, Mr. Parks wrote an article last Thursday, April 17th regarding the "New Guidelines to Help Determine Premature Survival Rate". In response to the article my wife submitted an Opinion response to The News which was published in yesterday's paper. In all honesty, I figured that the debate would likely stop at that point, or at the very most we would receive a stock "thank you for your opinion" form letter from either Mr. Parks or The News editorial staff. Boy was I wrong!
What I share with you all is a truly heartless, cold, and disturbing response that smacks of an absolute disregard for humanity, not to mention my family. I hope that upon reading Mr. Parks' email response that you will be embarrassed that your fellow co-worker had the audacity to send such a response as an employee and ambassador of the Birmingham News. I find it interesting that Mr. Parks was not brave enough to courtesy copy any of his editorial staff or management to enlighten them to his private reply to my wife. I would also surmise that it is not routine or approved practice to address a reader in this manner without clearing such a response with an editor or member of management first. At this point, I am sure that you think that I am completely overreacting to a poorly thought out or hastily sent response by Mr. Parks. To give you all the necessary background to understand why I expect to receive a published written apology to my family and the other parents of extremely premature babies I ask you to indulge the rest of this email. This email will be quite lengthy; however, I hope that after you have finished reading you will see why my wife and I are so troubled by callous private response and the poor reflection that it has on the integrity of the staff at the Birmingham News.
In early July 2007 my wife was passing the halfway point of her third pregnancy feeling great and on her way to a healthy third trimester. Our first baby was lost to a miscarriage early in the second trimester. Our second pregnancy (first daughter) was delivered at 30 weeks due to complications with pre-eclampsia. As a result of the various complications that my wife faced during the first two pregnancies our doctors monitored her very closely during her third pregnancy. On Friday evening July 20, 2007 my wife began complaining of excess swelling and decided that the doctors should be called. As a measure of precaution the doctors admitted my wife to Brookwood Hospital for observation. By mid day the following day we were informed that she was again experiencing the onset of pre-ecclampsia and that since she was just past halfway in her pregnancy the doctors were going to keep her in the hospital as long as possible to allow for further development of our daughter. At this point we were introduced to the neonatology team and given all of the knowledge and common statistics regarding the viability of life at various gestational stages. We were informed that at 22 weeks that there was little hope for survival, and that at 23 & 24 weeks there was a slightly increased chance of survival but that survival would likely be accompanied by lifelong and very serious health risks. We were also informed that at 22-24 weeks gestation that the methods and practices required to help a child survive could be difficult, painful, and potentially result in more damage to the child. We certainly were given the opposite side of the spectrum as well and informed that we could likely be faced with making the decision to allow our child to pass if the potential for survival was decreasing. The interesting part in all of the discussions that were had in that first 24 hour period is that never did any of the doctors or nurses give us the slightest impression that at barely 23 weeks gestation, our child was not going to be given the absolute greatest chance and care to promote survival even given the grim and doubtful future that faced her. There was never a second that I felt that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on a "risky" and likely "fruitless" efforts.
On July 25, 2007 at 24 weeks gestation our second daughter Kathryn was born. She was 11 inches and 14 ounces at birth. Immediately following birth she was rushed to the NICU and immediately ventilated and placed into an incubator where she would stay until late December 2007. I will tell you that 11 inches and 14 ounces may not resonate in words, but as a man, and as a father I have neven been so scared, fearful, and humbled in my life as the first second I saw my youngest daughter. All of the bad decisions and wasted moments of my life to that second flashed before my eyes. I was immediately terrified that there was something that I had done in my life to cause my daughter to be born into this world in such a fragile and completely unprepared way. As soon as my wife was recovered enough to talk with the doctors they were careful to inform us that she was very pre-mature and was what they termed micro-preemie. Her chances of survival were minimal, and that there were enormous obstacles she would have to overcome from that day forward to give indication as to whether she would survive and in what state if she did. Again however even at the depth of our confidence level there was not a second that I sensed that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on a "risky" and likely "fruitless" efforts.
As the days and weeks progressed were given small amounts of hope from the hospital that while things were not necessarily improving, but that our daughter was surviving. She was receiving countless dollars worth of x-rays, CT scans, bloodwork, ventilation, therapy, medications, not to mention the 24/7 monitoring and attention by the NICU staff. She was receiving expert consultation from doctors at UAB and Childrens Hospital as well. All of this costing ridiculous amounts of money and time by the healthcare system. All for one single 14 ounce "risky" and likely "unviable" life. All of this was until late August 2007 when we were called by the doctors and informed that our daughter was experiencing some complications and there was concern for her life. My wife and I were again taken to the brink of a decision we did not want to make. The concept or notion that one night could potentially bring us to a decision point to proceed with treatment or whether to stop was suddenly upon us. As that night went on the doctors came to us and informed us that all the efforts they were attempting were not working and that they were running out of options. They asked us to talk to them, pray with them, and to brainstorm with them what to do next. I remember in the early morning hours my wife and I walking back in to the NICU to check on our daughter and seeing the incubator lid raised for the first time in her short life exposing her to outside air. This immediately scared us thinking that there was another downturn and that the decision was upon us. Amazingly, every single nurse and doctor on call in that NICU was around our daughter carrying on normal conversation, laughing, and crying because it seemed that the only thing that was causing our daughter's vital signs to stabilize were the sounds of life going on around her. At this point in my life I knew that while medical science was allowing my daughter to "survive" and improve her viability in this world, it was pure human compassion and caring and God's divine grace that was allowing her to "LIVE". Yet again there was never a second that I felt that the doctors, nurses, administrators or anyone else felt that they were wasting dollars or time on "risky" or "fruitless" efforts.
From the time we entered the NICU with our daughter we were asked to approve countless procedures and tests to be performed on our daughter. She suffered from infections, required potentially damaging steroid treatments, and was temporarily medically paralyzed for three weeks to allow her body to recover and heal. All of these had drastic and disfiguring affects on her body. She lost tips of fingers and toes due to lack of blood flow, and was swollen immensely due to paralyzation, all of these things were particularly difficult to see as a parent and even more difficult to impose upon your child. However in her best interest and at the advise of her doctors these were the treatments that were needed. Again all of these procedures were being done for a "risky" and likely "fruitless" life and likely taking valuable medical attention from someone else who was much more "deserving".
Finally, in late December 2007 our daughter was released to come home for the first time in her life. For the first five months in the NICU our daughter likely cost the healthcare system approximately $2-3 million dollars and untold man-hours of medical staff time. Since December she has returned to Children's Hospital for two additional 2-4 week long admissions due to complications which have likely cost the healthcare system another $1 million dollars and more man-hours of medical staff time. Additionally I would like to make you aware that both times we were readmitted to Children's Hospital there were massive amounts of time and sometimes days to get into a room because the hospital was booked solid. The interesting part is that because my family has experienced the benefits of the millions of dollars of medical time and research I don't remember complaining about having to wait for a room while another "risky" child was being attended to by more "fruitless" medical technology.
I will say that I am honest enough to admit to the world that I am 100% selfish and 100% human and I feel like my child deserved every fighting chance that was afforded to her to survive. I will also say that I do not consider myself to be more deserving than anyone else nor my child to be more deserving than any other child. I am appalled to think that Mr. Parks is equating a child's life to a "business decision" based on which children offer the greatest return on investment. I cannot imagine if I were a doctor having to make that "business decision" as to which children deserve the benefit of our healthcare system. I assume based on Mr. Park's logic that allocation of healthcare resources is purely business driven decision then his next article should be based on study related guidelines for when to advise families to terminate care for cancer patients, AIDS patients, stroke victims, or the elderly. I guess Mr. Park's pointing out to us that if there is a point at which life and the viability of life become a decreased potential for the healthcare system to make a profit then doctors and researchers will continue to come up with guidelines to help set the boundaries so we will all know when to throw in the towel on a life!
Last but not least, I am particularly insulted by Mr. Parks last statement "I certainly am glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. I pray that God continues to bless her." In case you can't tell from my email I am forever grateful to the doctors, nurses, administrators, researchers, and anyone else that directly or indirectly cared for my daughter and brought her home to our family. If you can't tell as well I am also fully aware of the amount of money and effort that it has cost to bring our daughter home, and I am forever grateful as well. But do not have the audacity to throw that in to justify in some deranged backhanded way your argument for making life or death decisions based solely on which babies you feel worthy of the care. If you said what you really meant to say then it would have gone something like this... "I am certainly glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. Because had your child had not lived then I as a member of society would be sending you a bill for the money, effort, and care that we as a society extended to your child that was taking time away from another more deserving child".
Mr. Parks your original article was essentially a piece that outlined widely known information that many neonatologists have been using for quite some time. Our family was given much if not all of the information that these new "guidelines" state. In the end our family in consultation with our doctors and God made the only choice available to us which was to take every chance possible to preserve the life of our daughter. I still agree with my wife's original Opinion that the research data is there to provide information and educate, but is too dangerous for our society to use as a "guideline" to determine life or death. I do not know if you have been faced in your life with the decision to care for the well-being of a dying or struggling loved one. I do not know whether you are a parent or not. I would guess by your email to my wife that you are not a parent and have likely not had a significant experience in your life that requires decisions that can determine if life continues or not. Either way, it is not my place to assume, simply to point out that if in fact you have then I am not sure what wisdom it granted you otherwise your comments might have been more humane. In the end I hope that you see my perspective and now fully understand the level of disgust I have with your email to my wife. I would expect a reply from yourself or anyone that receives this email in the editorial staff. I would also hope that the News as a whole has the integrity to stand up and admit when a writer has overstepped the bounds of decency and has insulted a reader to the degree that I hope you all now understand and can respect.
Sincerely
Greg Ellis
Tuesday, April 22, 2008
Reply comments from the writer of the article
Thought you'd all like to see how cold and heartless the man is that wrote the preemie article. He basically told me that he's glad that Kathryn made it given the ridiculous amount of money that the "system" had to spend on her just to keep her alive. I can not even describe how his email response made me feel. See the attached below. Particularly the last few sentences. What a jerk.
"Thanks for the feedback. Sorry the article disappointed you. No matter how heartless it seems, people must and do make decisions about how to allocate health resources. If we spend billions of dollars trying to save babies who have little or no chance of survival, then we taking resources away from other patients who have much better chances of survival. We spend more on medical care than any nation on earth, but still don't have enough. UAB Hospital filled up last week, taking no more patients. The emergency room was swamped, too. Same thing happened at St. Vincent's Hospital. Those are just cold, hard facts, but behind these statistics are emotionally charged stories about people struggling for survival. I certainly am glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. I pray that God continues to bless her.
--Dave Parks"
"Thanks for the feedback. Sorry the article disappointed you. No matter how heartless it seems, people must and do make decisions about how to allocate health resources. If we spend billions of dollars trying to save babies who have little or no chance of survival, then we taking resources away from other patients who have much better chances of survival. We spend more on medical care than any nation on earth, but still don't have enough. UAB Hospital filled up last week, taking no more patients. The emergency room was swamped, too. Same thing happened at St. Vincent's Hospital. Those are just cold, hard facts, but behind these statistics are emotionally charged stories about people struggling for survival. I certainly am glad that your baby lived, particularly given the amount of money, effort and care that we as a society have expended on your child. I pray that God continues to bless her.
--Dave Parks"
Monday, April 21, 2008
I was published!!!
Check out the Birmingham News today. My letter to the editor was published!
http://www.al.com/opinion/birminghamnews/index.ssf?/base/opinion/120876570514580.xml&coll=2
Thanks for your support!!
Kelly
http://www.al.com/opinion/birminghamnews/index.ssf?/base/opinion/120876570514580.xml&coll=2
Thanks for your support!!
Kelly
Saturday, April 19, 2008
For Comparison
The day Kathryn came home versus now . . . what a sweet angel!! What a difference 4 months makes!
Kelly
Friday, April 18, 2008
Thursday, April 17, 2008
My letter to the editor
An article today in the Birmingham News described factors for the survival of preemies. If you have a moment check it out. It absolutely upset me, so I decided to stand up for my tiny miracles!! I wrote a letter to the editor and sent it over. It may or may not get published, but I thought that I could at least publish it here and get my feelings out on the matter. So take a look at the article and then check out my letter below. I hope that this doesn't offend anyone.
Kelly
http://www.al.com/news/birminghamnews/index.ssf?/base/news/120842018024750.xml&coll=2
"Your story today on "Factors for the survival of preemies” had me absolutely apalled and teetering on the brink of anger. I am surprised that The Birmingham News would run such a story just days away from the city’s annual March of Dimes March for Babies. This event and organization is dedicated to preventing premature births, among other things, and to raising money for the research necessary to provide the “fruitless medical technology” you mention in your article. The article describes research data to help parents of preemies decide whether to provide medical care to their tiny infants. Pardon me, but I could care less about research data as I stare into the beautiful tiny face of my 14 ounce baby born at 24 weeks. At that point I continue praying that I can hold onto the hope that she will be just fine. In the second paragraph, you generalize that parents are making decisions about subjecting their babies to "fruitless medical technology when the infant is expected to die." I'd like to invite you to my home so that you can see that preemies beat the odds every day. I have a beautiful 4 year old red head (a 3 pounder at birth) and an amazing 9 month old (a 14 ounce baby at birth) who are both living proof that miracles exist. Last but not least, you mention that these statistics will give new parents "objective" information they can use to make decisions about the care of their premature baby. If you were to ask new parents of a preemie if they would like some "objective" information on the statistics of their baby's survival, I feel certain that your question would be ill received. I pray that you never have to face the experience of 6 months in the NICU, but if you do, I hope that you can have the same peace about it that we did."
Kelly
http://www.al.com/news/birminghamnews/index.ssf?/base/news/120842018024750.xml&coll=2
"Your story today on "Factors for the survival of preemies” had me absolutely apalled and teetering on the brink of anger. I am surprised that The Birmingham News would run such a story just days away from the city’s annual March of Dimes March for Babies. This event and organization is dedicated to preventing premature births, among other things, and to raising money for the research necessary to provide the “fruitless medical technology” you mention in your article. The article describes research data to help parents of preemies decide whether to provide medical care to their tiny infants. Pardon me, but I could care less about research data as I stare into the beautiful tiny face of my 14 ounce baby born at 24 weeks. At that point I continue praying that I can hold onto the hope that she will be just fine. In the second paragraph, you generalize that parents are making decisions about subjecting their babies to "fruitless medical technology when the infant is expected to die." I'd like to invite you to my home so that you can see that preemies beat the odds every day. I have a beautiful 4 year old red head (a 3 pounder at birth) and an amazing 9 month old (a 14 ounce baby at birth) who are both living proof that miracles exist. Last but not least, you mention that these statistics will give new parents "objective" information they can use to make decisions about the care of their premature baby. If you were to ask new parents of a preemie if they would like some "objective" information on the statistics of their baby's survival, I feel certain that your question would be ill received. I pray that you never have to face the experience of 6 months in the NICU, but if you do, I hope that you can have the same peace about it that we did."
Wednesday, April 16, 2008
Cinderella - From the heart
So, a quick update. Kathryn's appetite picked up over the weekend and she seemed to jump back on the bottle bandwagon. She also continues to chew on her hands with extreme gusto so we are giving her Tylenol to help with that. (We still think she may be teething, but have yet to see the little breakthrough!) Maddie and Greg finished working on Maddie's Derby car for her Derby Day with Dad coming up at school. She is super proud of it and I think it looks amazing. I still can't give away what it looks like since the derby is not til the 25th, but I will post pictures next week. Kathryn had a follow up today with Dr. Stansell for her last Synagis shot of the season. She did not like the shot at all, but a huge hug from mom seemed to calm her down within a few minutes! She was also up to 9 pounds 13 ounces on their scale.
For the first time in a while, I wanted to take a few minutes and actually write a heartfelt blog entry today. Most days I barely have enough time to just write about what is going on with us, but today I feel different. With being back to work, I sometimes find that there isn't enough time in the day for anything. I am up at 5:00 (or at least my alarm is) - it's more like 5:30 for me. That usually means that I have to rush to get ready because I have to leave the house by 6:30 to be at work by 7:00. I try in that hour to get dressed, get Maddie's clothes out, feed Kathryn, and any other household chore that quickly needs my attention. Then a quick kiss to each of the girls and to Greg and I am out the door speeding to work. Work starts at 7:00 and goes until 2:30 for me right now, so that I can leave at 2:30, head straight to Maddie's school and get home by 3:00 for Cheryl to head home to her family. (Most days, I get home closer to 3:15 and thankfully for me, Cheryl is so kind about my 15 minute late trend.) - Which by the way, I was never late before having two kids, and now I can never seem to be on time. Anyway, the afternoons are usually filled with drawing medicines, making formula, occasional doctor visits, reading mail and email, and hanging out with the girls - unfortunately usually in that order. The few extra hours I have in the afternoon with them before Greg gets home seems to fly by!! Before I know it, it's 6:00, Greg is home, it's bottle time, and time to fix dinner, eat dinner, give Maddie a bath and try to wind down for the night. Usually by about 9:30 I get a few minutes to myself at which time I try to decide whether I want to play with Kathryn, spend time with Greg, watch a TV show, read my book, read my magazine, blog, surf the computer, or any number of other mom or wife tasks before I get sleepy in the next 30 minutes and have to fall asleep in order to start all over the next morning. Isn't all this activity supposed to be such a blessing?
And then today, I realized that no, that's not the blessing at all. The blessing is my husband and my children and the wonderful family we are building. Greg came home the other day and mentioned to me a song that he had heard in the car on the way home. Since he knows me so well, he told me to wait to hear it because he knew it would make me cry. Like normal, I went about a busy last few days before I even took the time to listen to it. At work of all places, I pulled it up on the internet and like Greg suspected, it pulled at my heartstrings and brought tears to my eyes. I think it was a song that I needed to hear. Steven Curtis Chapman sings Cinderella about his relationship with his daughters. Here's the simple lesson I was reminded of from listening to the song: I need to remember the importance of showing up in the moment and not just worrying about the ones to come. The song reminded me that we need to stop and focus on the little things with our little ones because time passes faster than I would have ever imagined. Maddie reminds me each day that she is now a big kid (and not a baby) even though I remember holding her like I do Kathryn. Too many days I spend trying to get everything done, so I can sit down and enjoy reading a book to Maddie or holding Kathryn and making silly sounds with her, when really those are the things that need to be done first. Everything else can wait! I remember one Sunday afternoon while Kathryn was in the hospital, my mom came to pick up Maddie and take her to the park so I could do some things around the house before going back to visit Kathryn. As soon as Maddie was out the door, I cried because I realized that I should have taken Maddie to the park and let the other stuff wait!
So. . . . this is my admission of not putting the right things first all the time AND my commitment to showing up in the moment! I refuse to miss anymore Cinderella moments and I can't wait to see Greg and his princesses dance for quite some time!
Check out the song:
http://www.myspace.com/stevencurtischapman
Faithfully, Kelly
For the first time in a while, I wanted to take a few minutes and actually write a heartfelt blog entry today. Most days I barely have enough time to just write about what is going on with us, but today I feel different. With being back to work, I sometimes find that there isn't enough time in the day for anything. I am up at 5:00 (or at least my alarm is) - it's more like 5:30 for me. That usually means that I have to rush to get ready because I have to leave the house by 6:30 to be at work by 7:00. I try in that hour to get dressed, get Maddie's clothes out, feed Kathryn, and any other household chore that quickly needs my attention. Then a quick kiss to each of the girls and to Greg and I am out the door speeding to work. Work starts at 7:00 and goes until 2:30 for me right now, so that I can leave at 2:30, head straight to Maddie's school and get home by 3:00 for Cheryl to head home to her family. (Most days, I get home closer to 3:15 and thankfully for me, Cheryl is so kind about my 15 minute late trend.) - Which by the way, I was never late before having two kids, and now I can never seem to be on time. Anyway, the afternoons are usually filled with drawing medicines, making formula, occasional doctor visits, reading mail and email, and hanging out with the girls - unfortunately usually in that order. The few extra hours I have in the afternoon with them before Greg gets home seems to fly by!! Before I know it, it's 6:00, Greg is home, it's bottle time, and time to fix dinner, eat dinner, give Maddie a bath and try to wind down for the night. Usually by about 9:30 I get a few minutes to myself at which time I try to decide whether I want to play with Kathryn, spend time with Greg, watch a TV show, read my book, read my magazine, blog, surf the computer, or any number of other mom or wife tasks before I get sleepy in the next 30 minutes and have to fall asleep in order to start all over the next morning. Isn't all this activity supposed to be such a blessing?
And then today, I realized that no, that's not the blessing at all. The blessing is my husband and my children and the wonderful family we are building. Greg came home the other day and mentioned to me a song that he had heard in the car on the way home. Since he knows me so well, he told me to wait to hear it because he knew it would make me cry. Like normal, I went about a busy last few days before I even took the time to listen to it. At work of all places, I pulled it up on the internet and like Greg suspected, it pulled at my heartstrings and brought tears to my eyes. I think it was a song that I needed to hear. Steven Curtis Chapman sings Cinderella about his relationship with his daughters. Here's the simple lesson I was reminded of from listening to the song: I need to remember the importance of showing up in the moment and not just worrying about the ones to come. The song reminded me that we need to stop and focus on the little things with our little ones because time passes faster than I would have ever imagined. Maddie reminds me each day that she is now a big kid (and not a baby) even though I remember holding her like I do Kathryn. Too many days I spend trying to get everything done, so I can sit down and enjoy reading a book to Maddie or holding Kathryn and making silly sounds with her, when really those are the things that need to be done first. Everything else can wait! I remember one Sunday afternoon while Kathryn was in the hospital, my mom came to pick up Maddie and take her to the park so I could do some things around the house before going back to visit Kathryn. As soon as Maddie was out the door, I cried because I realized that I should have taken Maddie to the park and let the other stuff wait!
So. . . . this is my admission of not putting the right things first all the time AND my commitment to showing up in the moment! I refuse to miss anymore Cinderella moments and I can't wait to see Greg and his princesses dance for quite some time!
Check out the song:
http://www.myspace.com/stevencurtischapman
Faithfully, Kelly
Tuesday, April 15, 2008
Changes
Hope you like the new colors - I have been wanting a change!!
Also welcome to some of my new friends links that I have added to include more of my blogging friends!
Kelly
Also welcome to some of my new friends links that I have added to include more of my blogging friends!
Kelly
Sunday, April 13, 2008
Our weekend
Well, this weekend ended up being a little different than what we had planned for. Greg was planning to go out of town for a men's retreat that he had been planning for our Sunday school. With the threat of nasty weather on Friday night (hail and strong winds), the guys decided to cancel the trip, and I think Greg was pretty disappointed that it didn't work out!! Friday, he stayed home with the three girls since he had already taken the day off. We all hung out at home and cuddled during the bad weather in the afternoon. (That lasted about an hour.) After the showers passed and our power returned, we were able to take Kathryn back off the oxygen tank and return to life as normal. We ordered in a pizza and watched The Waterhorse!! (Good movie.) After Maddie headed off to bed, Greg and I watched I am Legend and I had trouble sleeping for a few hours after it was over!! All you chickens, don't watch this movie at night!!
Saturday, Kathryn had her physical therapy appointment and got a great review from her PT, Daphne!! She is working hard on rolling over, sitting up, leg stretches, and enjoying tummy time. It's a lot of work for her and it wears her out!! Saturday, Greg decided to start one of our summer projects and spent the day prepping our deck for sanding and resealing. He completed some of it today and it looks very nice!!
We spent the weekend struggling to get Kathryn to take her bottles. She acted happy and had no fever, but also no interest in eating! I think she may have gotten her appetite back this afternoon, hopefully. We also think it could be due to teething - we haven't seen any signs of a tooth just yet, but she is chewing her hands relentlessly!!
Please continue to pray for weight gain. She is still just weighing in at under 9 1/2 pounds, but we would love for her to bulk up!!
Faithfully, Kelly
Saturday, Kathryn had her physical therapy appointment and got a great review from her PT, Daphne!! She is working hard on rolling over, sitting up, leg stretches, and enjoying tummy time. It's a lot of work for her and it wears her out!! Saturday, Greg decided to start one of our summer projects and spent the day prepping our deck for sanding and resealing. He completed some of it today and it looks very nice!!
We spent the weekend struggling to get Kathryn to take her bottles. She acted happy and had no fever, but also no interest in eating! I think she may have gotten her appetite back this afternoon, hopefully. We also think it could be due to teething - we haven't seen any signs of a tooth just yet, but she is chewing her hands relentlessly!!
Please continue to pray for weight gain. She is still just weighing in at under 9 1/2 pounds, but we would love for her to bulk up!!
Faithfully, Kelly
Thursday, April 10, 2008
Wednesday, April 9, 2008
Great results from the eye doctor
At Kathryn's eye checkup today, Dr. Metz said that her eyes look perfect!! It was such a triumph to hear that!! After Monday, I felt a little beaten up so some good news was definitely in order!! We are supposed to go back in 6 months!!
And on a different note, I have made an executive decision about Kathryn's weight gain. I am going to stop the baby food and rice cereal for a little while and see if we can't get her to increase the amount of her bottles first. Those are much more caloric for Kathryn so we'll focus on that for now and then add back in the food!! It's worth a shot - she's not terribly thrilled with the food anyway. Each time she eats she acts as if she could take it or leave it - so for now, we'll leave it!!
Please pray for weight gain!!
Faithfully, Kelly
And on a different note, I have made an executive decision about Kathryn's weight gain. I am going to stop the baby food and rice cereal for a little while and see if we can't get her to increase the amount of her bottles first. Those are much more caloric for Kathryn so we'll focus on that for now and then add back in the food!! It's worth a shot - she's not terribly thrilled with the food anyway. Each time she eats she acts as if she could take it or leave it - so for now, we'll leave it!!
Please pray for weight gain!!
Faithfully, Kelly
Monday, April 7, 2008
Update from the BPD Visit - I feel a little disappointed!
Well, the BPD visit did not go how I had expected or how I had hoped. Kathryn is definitely impressing the BPD team with her alertness and her over appearance and attitude, but not with her numbers. Her weight today was 9 pounds, 6 ounces. Overall, still a weight gain, but not as much as they would have liked. She was gaining before at an average of 28 - 30 grams a day which is close to an ounce a day. This time she has slowed to about 18 -20 grams a day about 2/3 or so what she was gaining before. In the last two weeks, she has only gained 4 ounces. This was definitely disappointing news because she looks like she is gaining better than what she is! Also disappointing because I was hoping that they would consider changing her formula and maybe discontinuing the MCT Oil. Well, they changed her formula, but they are now making it more calories, plus adding 1 ml of MCT Oil to her rice cereal and also increasing her feeds to 1/2 ounce more per bottle.
The only medicine change was to increase her Diuril (a diuretic). Apparently she had outgrown her dosage. I was also disappointed by this because I thought she was eventually supposed to outgrow her dosage, so I didn't quite understand why they increased the dosage.
The oxygen is also going to stay the same for right now. I asked about weening to 1 1/2 liters after seeing how well she did on that level on an oxygen tank, but Dr. Lozano said that this is just the difference between a tank and a concentrator and that he doesn't want to ween yet. He says he wants her to be more stable for a little while longer before he makes any changes.
I guess its a good sign that he doesn't want to follow up in 4 weeks again, we got pushed back to 8 weeks. So, that's an accomplishment, but I guess I had hoped for bigger changes!! I know it will come with time, but I am ready for it!! So we have a specific prayer for the next two months - BIG weight gains and continued stability!!!!!
On a light note, Kathryn had her blood drawn today for a hematocrit level and a test of her electrolytes since she is on diuretics and she did not even cry when she they put the butterfly needle in to draw the bloodwork. What a champ!! Now if mom could just get past her petty disappointments!! Thanks for letting me vent. I think we all want our children to excel and be healthy!! I want that quite a lot and I guess I need to realize that it will happen with time and it may not necessarily happen when I want it to!! God is in control and has placed his hand on Kathryn thus far and I know that he will continue to do so!! I need to pray for patience for myself!
Faithfully, Kelly
The only medicine change was to increase her Diuril (a diuretic). Apparently she had outgrown her dosage. I was also disappointed by this because I thought she was eventually supposed to outgrow her dosage, so I didn't quite understand why they increased the dosage.
The oxygen is also going to stay the same for right now. I asked about weening to 1 1/2 liters after seeing how well she did on that level on an oxygen tank, but Dr. Lozano said that this is just the difference between a tank and a concentrator and that he doesn't want to ween yet. He says he wants her to be more stable for a little while longer before he makes any changes.
I guess its a good sign that he doesn't want to follow up in 4 weeks again, we got pushed back to 8 weeks. So, that's an accomplishment, but I guess I had hoped for bigger changes!! I know it will come with time, but I am ready for it!! So we have a specific prayer for the next two months - BIG weight gains and continued stability!!!!!
On a light note, Kathryn had her blood drawn today for a hematocrit level and a test of her electrolytes since she is on diuretics and she did not even cry when she they put the butterfly needle in to draw the bloodwork. What a champ!! Now if mom could just get past her petty disappointments!! Thanks for letting me vent. I think we all want our children to excel and be healthy!! I want that quite a lot and I guess I need to realize that it will happen with time and it may not necessarily happen when I want it to!! God is in control and has placed his hand on Kathryn thus far and I know that he will continue to do so!! I need to pray for patience for myself!
Faithfully, Kelly
Saturday, April 5, 2008
Physical Therapy
We have all had a great week!!! I worked a 5 day work week - I forgot how that felt - it was a little tiring with everything else in our "little world." (But nonetheless, rewarding.) Plus I am working three days next week!! We changed things up a bit because I had a training class to attend at work on Friday and Kathryn has a BPD Clinic visit on Monday - so we switched the days!! Anyway, Greg remains super busy with work. He was in Auburn twice last week, Tuscaloosa once, and several late nights at the office.
Maddie has been doing well with her job in the family - which is to be a sponge and learn everything she can!! School this year is proving to be such a learning experience!! She and Greg are gearing up for Derby Day with Dad at her school later this month on the 25th. The kids all design "Derby Cars" with their dads out of copy paper boxes and then they have races. I won't reveal the big surprise yet about what Madelyn's car is going to be, but let's just say that Greg and his "building" background have certainly proved to be a creative force in this project. I think she will have one of the most elaborate and high tech cars there. I will say this - there is a working radio in her car - how's that for a 4 year old project!!
Kathryn had a great week. I tested her out this week for a little while on 1 1/2 liters of oxygen and she kept her sats at or near 100!! I am hoping that we get the official direction to start weening her at our BPD appointment on Monday. I am also hoping that there might be some medicine changes that day too!! (Maybe dropping one or two or at least weening.) That's my prayer for the upcoming visit. Kathryn also had her physical therapy appointment today at home. Her PT, Daphne, is very nice and is great with Kathryn. We are working on enjoying tummy time, sitting up with the help of the boppy, loosening her muscles, and learning to turn over. It's work for Kathryn, but she is doing so well!!!
Last night, Greg and I had the wonderful opportunity to get out of the house for dinner and a movie just the two of us. Nini and Pawpaw babysat the girls - which Maddie and Kathryn love!! We went to dinner at a new restaurant in Birmingham called Fire and Ice. It was a neat experience and good food. Then we went to see the new movie 21 about counting cards at blackjack. It was a very good movie!! We didn't get home until close to midnight and finally fell asleep around 1 am. Maddie then woke us up at 2:30 getting sick in her bed. She was running a fever of 101, so we have been keeping her away from Kathryn a little today. I think it's just a little stomach thing and hopefully it's almost over since there have been no more episodes of getting sick!
Well, that's about it for our week. We have a busy week ahead of us!! Please pray for a great doctor visit on Monday with Dr. Lozano.
Faithfully, Kelly
Maddie has been doing well with her job in the family - which is to be a sponge and learn everything she can!! School this year is proving to be such a learning experience!! She and Greg are gearing up for Derby Day with Dad at her school later this month on the 25th. The kids all design "Derby Cars" with their dads out of copy paper boxes and then they have races. I won't reveal the big surprise yet about what Madelyn's car is going to be, but let's just say that Greg and his "building" background have certainly proved to be a creative force in this project. I think she will have one of the most elaborate and high tech cars there. I will say this - there is a working radio in her car - how's that for a 4 year old project!!
Kathryn had a great week. I tested her out this week for a little while on 1 1/2 liters of oxygen and she kept her sats at or near 100!! I am hoping that we get the official direction to start weening her at our BPD appointment on Monday. I am also hoping that there might be some medicine changes that day too!! (Maybe dropping one or two or at least weening.) That's my prayer for the upcoming visit. Kathryn also had her physical therapy appointment today at home. Her PT, Daphne, is very nice and is great with Kathryn. We are working on enjoying tummy time, sitting up with the help of the boppy, loosening her muscles, and learning to turn over. It's work for Kathryn, but she is doing so well!!!
Last night, Greg and I had the wonderful opportunity to get out of the house for dinner and a movie just the two of us. Nini and Pawpaw babysat the girls - which Maddie and Kathryn love!! We went to dinner at a new restaurant in Birmingham called Fire and Ice. It was a neat experience and good food. Then we went to see the new movie 21 about counting cards at blackjack. It was a very good movie!! We didn't get home until close to midnight and finally fell asleep around 1 am. Maddie then woke us up at 2:30 getting sick in her bed. She was running a fever of 101, so we have been keeping her away from Kathryn a little today. I think it's just a little stomach thing and hopefully it's almost over since there have been no more episodes of getting sick!
Well, that's about it for our week. We have a busy week ahead of us!! Please pray for a great doctor visit on Monday with Dr. Lozano.
Faithfully, Kelly
Tuesday, April 1, 2008
50% mommy + 50% daddy = 100% cute
My aunt got this onesie for Kathryn for Easter.
Kathryn cuddling with her Easter bunny!!
Ooooooooh - I love to hug you Easter Bunny!!
And now, Kathryn goes in for the big kiss!
Kathryn's latest trick!! If you look close enough the canula is out!! It's hard for us too. The darn thing is clear so you can't always spot it right away, until the SAT monitor starts beeping and then we can all guess - "Kathryn took the canula out again!!" (She has been nicknamed, the "little weasel".)
Sometimes I wonder lately if I am being unfair to Madelyn for all the pictures I take and post of Kathryn lately. Then I look back at the number of pictures we took when Maddie was a baby, and I think poor Kathryn- she's the one who is deprived!!
We took Kathryn to church with us this past Sunday. It was her first trip and her first time to meet so many of our Sunday School class (the DINKS) that had prayed so many nights for her!! It was wonderful to introduce my second daughter to some very special people in mine and Greg's life!! It was also wonderful to ride together as a family to church!! It was a little daunting at first with Kathryn in her car seat, the oxygen "tank in a bag", the SAT monitor, the diaper bag, our Bible and study book, etc. But as soon as we got there, it just seemed natural.
We pray for another good week. It's a blessing to think that we have been home with Kathryn now for over a month!! (Knock on wood!!)
Faithfully, Kelly
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