It's funny. I always thought I "knew" the leassons that I have always been taught throughout the years. From my parents and grandparents, from my religion, from life in general. But only recently I learned that you really don't learn a lesson until you actually experience it. And as I sit here today I have found those life lessons that were taught to me, I'm finally learning.
The big one is "Let go, Let God" You know I have heard that a million times throughout life and always felt that I did that. Till now, Now I'm actually learning what it means to be faced with something that you seriously have no control over. And where you HAVE to let go, because you will drive yourself crazy if you don't. How it becomes apparent that the only thing you can do is to Let God do his work. Pray and Pray and continue to pray. But mostly to let God do his work. That's a hard one for me. Prayers used to come in the form of asking God to do something specific....Heal someone, do this do that. Nowadays the prayers consitent more of asking God to do his work. And to give me the strength to trust that he will do what it is that he finds the right answer. I want the peace now to trust him. Really trust him. Not the trust where you say it but not mean it. There's a difference. And I'm realizing that as well. I can only ask that I can do my part and do what it is that God would ask of me. And let me do it to the best of my ability. All else is up to him. I can not heal my son. Lord knows I would do anything it takes to do it. But the fact remains I can't. I have to let go and let god. So I ask God everyday to give me the strength. To guide me in the right direction. To guide and watch over the surgeons who we put the lives of our children in. Guide them to do God's work. And ask God to comfort and protect Trenton while he endures this pain. And to give me the strength to allow it all to happen. The Serenity Pray...Which follows the same lesson. Accept the things I can not change. Yeah that's it. Accept it. And then the wisdom to know the difference. I think I am learning that as well.
So another thing I've learned is that Life really is a journey. To it there is no straight path that you can take. That is for sure. All the plannng in the world would have NEVER lead me to this path. And I really don't believe I was lost either. I think that I have a reason for being here and God knows that reason as well. This road is not the easy road. But more and more I'm seeing that I would not want it any other way. For all things there is a reason and I will also need to trust that. Find the peace in that. And that God will see us through this trying time and on the other side of this pothole in the road I am traveling we will all be better people for it. Trusting in God and his ability better, and trusting in ourselves more with what we can achieve. And happy to have learned the lessons.
Monday, May 4, 2009
Wednesday, April 29, 2009
Feeding and Bottles
I guess that through everything these days I have found something that I can be in control of. And that's his feeding. I take this very seriously. Kind of like a big corporate job. LOL I find myself trying more and more to get him to eat. And now that I've found the way to get him to eat decent I obsess over it. I really have a hard time allowing anyone else to feed him and basically I just don't let them. My Mother In Law does and I don't like it and my mother did once and I didn't like it either. I really have made the decision that no one can do my job the way I do it and my job is feeding him. Everyone else seems to think it's a "fun" time or a time to "play" with him. And it makes me crazy. I don't find it a game or fun at all. It's the life important thing of getting him big and keeping him eating. The Dr said that the better he eats and gains now the less of a problem we will have after surgery. So, I really find that the most important thing I can do for him. And basically since I can't make him better or make his heart healthy all I can do is feed him. And that I take as opur number one goal these days after keeping him healthy.
Since he's 8lbs and 13oz as of Monday....That's 2lbs 13 oz he gained since he left the hospital. And that is awesome to me. So I will continue to try and get him eating more and taking more at a time. That's what I can do to ensure a success in June.
Right now he eats around 12-14 oz a day. Which is low for a 6 week old baby. BUT it's much better then alot of heart babies. And that's a good sign.
Since he's 8lbs and 13oz as of Monday....That's 2lbs 13 oz he gained since he left the hospital. And that is awesome to me. So I will continue to try and get him eating more and taking more at a time. That's what I can do to ensure a success in June.
Right now he eats around 12-14 oz a day. Which is low for a 6 week old baby. BUT it's much better then alot of heart babies. And that's a good sign.
Medical Updates: The Magic Number!!!!!
So over the weekend I noticed that Trenton was not eating as well as he had been and also sweating with his feeds. He also seemed extra congested and like he was having a hard time breathing. So I called the Cardiologist on Monday AM and he asked me to have him seen by the Pediatrician. Who in turn spoke directly to the Cardio. So he was seen and had an Xray, which daddy did with him. (Thankfully) and we found that he had fluid built upin his lungs. So, The Cardiologist upped his Lasik medication to 3 times a day and added another medication. This one is Capitrol. It's a blood pressure medication and will help his heart pump a little better and reduce the fluid going into his lungs from his heart.
We then went to see the Cardio on Tuesday for another check and to get the medications. We talked about proceeding to surgery and the fact is we will proceed after our next Cardio appt which is May 19th. SO...It seems to be on the calendar for right around the middle of June. I'm scared again all over realizing that it's coming up so quickly. Part of me wants to have it done today and get it over with. While the rest of me never wants it to ever have to happen. The daily stress of waiting is taking it's toll on me. And the daily worry of the actual surgery is gut wrenching. Getting it done and over with and getting him healthy is our main priority in life these days.
A few things in the good news department from Monday is that he is now at the Magic number of 4 Kilos!!! They want babies to reach that weight so that they do much better on the heart bypass machine. Theat's when they can feel confident of the machines ability to do what it needs to do without damage during the surgery. Dr. Funari said....All the rest of the weight he gains is icing on the cake!!!!
Another positive that came out of this visit...I feel confident. I feel better about my decisions and my ability to see things and react. Kinda like i'm not in the dark now. I know what I'm looking for and know what to do. Maybe it's a false confidence but I'll take it at this point.
And last but not least by any means is that I feel really confident about his Cardiologist, his ability, his knowledge and his level of true caring for his patients. I spoke to him 3 times on Monday on the telephone. From his cell phone. Do you have Dr's that do that? Well, Not me. Until now. That shows me he really does care about his patients. Not just a daily number to him. Him and the Pediatrician are colleeges and friends so they can work together to provide great care for Trenton. And then about the Surgeons and their ability. The new hospital and it's technology. On and on...I feel good knowing that we have a great team around us for Trenton. And I feel some peace in knowing that if this HAS to be done we are in good hands.
We then went to see the Cardio on Tuesday for another check and to get the medications. We talked about proceeding to surgery and the fact is we will proceed after our next Cardio appt which is May 19th. SO...It seems to be on the calendar for right around the middle of June. I'm scared again all over realizing that it's coming up so quickly. Part of me wants to have it done today and get it over with. While the rest of me never wants it to ever have to happen. The daily stress of waiting is taking it's toll on me. And the daily worry of the actual surgery is gut wrenching. Getting it done and over with and getting him healthy is our main priority in life these days.
A few things in the good news department from Monday is that he is now at the Magic number of 4 Kilos!!! They want babies to reach that weight so that they do much better on the heart bypass machine. Theat's when they can feel confident of the machines ability to do what it needs to do without damage during the surgery. Dr. Funari said....All the rest of the weight he gains is icing on the cake!!!!
Another positive that came out of this visit...I feel confident. I feel better about my decisions and my ability to see things and react. Kinda like i'm not in the dark now. I know what I'm looking for and know what to do. Maybe it's a false confidence but I'll take it at this point.
And last but not least by any means is that I feel really confident about his Cardiologist, his ability, his knowledge and his level of true caring for his patients. I spoke to him 3 times on Monday on the telephone. From his cell phone. Do you have Dr's that do that? Well, Not me. Until now. That shows me he really does care about his patients. Not just a daily number to him. Him and the Pediatrician are colleeges and friends so they can work together to provide great care for Trenton. And then about the Surgeons and their ability. The new hospital and it's technology. On and on...I feel good knowing that we have a great team around us for Trenton. And I feel some peace in knowing that if this HAS to be done we are in good hands.
Sunday, April 26, 2009
Completely Out of Control
I just realized that I feel so completely out of control with this whole thing. Let me explain. I am an outspoken and very in control individual. I have OCD and I have always been the pro-active mom. ALWAYS....Till now. Now I feel completely and totally out of control of everything. I feel like a robot....The Cardio tells me what to do and when. The Pediatrician tells me what to do and when...And I follow commands. I realized that I'm so unknowledgable about the heart, how it works, and what needs to be done, that i find myself not even knowing where to research and what to do to make sure I am doing the right things. So, in otherwords, completely in the dark. UGH I really hate this feeling. I want to KNOW he's getting the best care, I want to feel CONFIDENT that I am doing the right things, I want to feel emotional strong in this journey and for some reason I can't find the strength to do that. I still cry everyday about Trenton's heart, and I still cry everyday he has to go through this. And crying isn't going to fix anything. I need to find a way to stop crying and start acting. UGH
Friday, April 24, 2009
Down Syndrome Research Support
Dear Down syndrome advocate and friend,
All of us who have worked to support people with Down syndrome have joined together in an emergency effort to increase government funding for Down syndrome research. We are in urgent need of your help. Recently, the National Institutes of Health (NIH) was awarded $10 billion in stimulus funding from Congress. NIH will decide how to spend most of this money between now and June.
While some of this funding has been dedicated to other disabling conditions, to date NIH has not been willing to dedicate funding to Down syndrome research.
Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) are both advocates for people with developmental disabilities and were responsible for advocating for NIH funding in the stimulus bill. We are asking you to contact these Senators and request that they encourage NIH to fund Down syndrome research.
PLEASE WRITE THESE TWO SENATORS NOW! Below is a copy of a draft letter to the Senators Harkin and Specter, which include their fax number. Feel free to personalize if you wish. The letters should be sent no later than Friday, May 8, 2009.
We would appreciate it if you would also fax a copy of your letter to us at 303-468-6061. We are compiling our letters for our visits to Washington, D.C.
If you have any questions, please contact Emily Brett (303) 468-6667 or ebrett@ajsfoundation.com. If it is easier for you, you can also stop by our offices to fax your letter. Just call in advance.
Our children with Down syndrome our counting on your support.
All of us who have worked to support people with Down syndrome have joined together in an emergency effort to increase government funding for Down syndrome research. We are in urgent need of your help. Recently, the National Institutes of Health (NIH) was awarded $10 billion in stimulus funding from Congress. NIH will decide how to spend most of this money between now and June.
While some of this funding has been dedicated to other disabling conditions, to date NIH has not been willing to dedicate funding to Down syndrome research.
Senators Tom Harkin (D-IA) and Arlen Specter (R-PA) are both advocates for people with developmental disabilities and were responsible for advocating for NIH funding in the stimulus bill. We are asking you to contact these Senators and request that they encourage NIH to fund Down syndrome research.
PLEASE WRITE THESE TWO SENATORS NOW! Below is a copy of a draft letter to the Senators Harkin and Specter, which include their fax number. Feel free to personalize if you wish. The letters should be sent no later than Friday, May 8, 2009.
We would appreciate it if you would also fax a copy of your letter to us at 303-468-6061. We are compiling our letters for our visits to Washington, D.C.
If you have any questions, please contact Emily Brett (303) 468-6667 or ebrett@ajsfoundation.com. If it is easier for you, you can also stop by our offices to fax your letter. Just call in advance.
Our children with Down syndrome our counting on your support.
Screening Babies for Broken Hearts
Screening Babies for Broken Hearts (The New York Times)By Darshak Sanghavi, M.D
http://z11.typepad.com/savinglittlehearts/
When his own children were born, pediatric cardiologist Darshak Sanghavi asked for a simple screening test for heart defects. But the test isn’t widely used.In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.Ryan’s story isn’t that unusual, and I’ve seen half a dozen similar children recently. A few months ago, the Centers for Disease Control and Prevention reported that the infant mortality rate in the United States was 6.71 per 1,000 live births, which was widely reported as being higher than other developed countries. Birth defects, especially involving the heart, are an important cause of these deaths. In October, researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants like my patient probably die each year due to missed — but treatable — congenital heart defects.How can we identify these normal-appearing newborns before they leave the hospital, become critically ill like my patient and perhaps die?Traditionally, prospective mothers have prenatal sonograms to look for birth defects. But the quality of these scans varies widely, depending on the skill of the technician and the supervising doctor. In addition, current guidelines supported by the American College of Obstetricians and Gynecologists mandate only a limited “four-chamber view” of the heart. As a result, a 1998 study from Southwestern Medical School in Texas reported that only one-quarter of major heart defects are identified prenatally.Unfortunately, when heart defects are missed by prenatal ultrasounds, pediatricians also have a hard time telling if critical cardiac problems are present. Normally, doctors examining newborns suspect heart defects if they hear a loud rushing noise (a “murmur”) with a stethoscope, notice the child has a bluish color, or lacks a pulse in the lower extremities. But in 1999, British researchers found that half of serious heart defects were missed by routine exams after birth. If sent home, these newborns become seriously ill.Folic acid can prevent up to 50 percent of many heart defects, but only if taken for about two months prior to conception. Because most pregnancies are unplanned, the C.D.C. recommends that all menstruating women should take a daily multivitamin.What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions. For example, most state health departments currently analyze a few blood drops taken from a baby’s foot and check for certain genetic problems like phenylketonuria (PKU) and galactosemia, which are treated with special diets to prevent developmental problems.Recently, researchers have identified a promising new method called pulse oximetry to screen all babies for heart defects. Taped briefly to a newborn’s foot, a small sensor painlessly beams red light through the foot and measures how much oxygen is in the blood. It takes about a minute. (Picture E.T. the extra-terrestrial’s finger lighting up, and you get the idea - this is so true) If the screening test is abnormal, doctors perform a confirmatory ultrasound of the heart. Last year, Norwegian doctors published one of the largest clinical trials of this strategy, and checked half of all babies born in the country.The results were impressive. Within a few hours of birth, pulse oximetry detected three-quarters of critical heart defects that had been previously missed. For every 2,000 newborns screened with the toe light, roughly one with a critical heart defect might have been prevented from going home. The cost-benefit ratio compares favorably to current practices of newborn screening for PKU and hypothyroidism. In January, Swedish doctors published an even more methodical study of almost 40,000 newborns, and showed that oximetry entirely eliminated death from missed critical cardiac defects.Of course, as with any screening, the technique may miss some defects and also involves some unnecessary, though benign, testing of normal children. But these false positive rates were low (only about one in 1,000 in the Swedish study) and triggered only about two instances of extra, noninvasive testing for every serious heart defect that was picked up. Many parents and doctors caring for children with critical heart defects subscribe to some variant of the “1 percent doctrine.” If there is even a small chance of catastrophe — like the sudden death of a newborn — they feel justified to push for preemptive action, especially when it’s a harmless and inexpensive screening test.While the screening test is not done routinely in the United States, some hospitals have adopted it, mostly in Texas and Florida, where some small trials have been conducted. But parents can ask doctors to screen their babies for heart defects using pulse oximetry. It’s essentially free since it needs no specialized equipment other than the oximeter, which is present in every hospital already. A specialized doctor isn’t needed; the test is quite simple, and a nurse can do it if the pediatrician orders it anytime after birth, but before discharge from the hospital. Hopefully they won’t mind doing it. Personally, I do think parents should request it. I did for my kids.Fortunately, Ryan, the baby I was urgently called to treat, had his heart surgery last summer and is doing well now. I see him every few months in clinic.Dr. Darshak Sanghavi is the chief of pediatric cardiology and assistant professor of pediatrics at the University of Massachusetts Medical School. He is the author of “A Map of the Child: A Pediatrician’s Tour of the Body,” and his Web site is www.darshaksanghavi.com.
http://z11.typepad.com/savinglittlehearts/
When his own children were born, pediatric cardiologist Darshak Sanghavi asked for a simple screening test for heart defects. But the test isn’t widely used.In the middle of one night in August, a seemingly healthy 1-week-old infant named Ryan Olson suddenly began gasping for breath at home in Massachusetts, and his frantic parents rushed him to the hospital. There, emergency room doctors noted the critically ill baby had bluish feet and — even more worrisome — no pulse in his lower body. That almost certainly meant the boy had a “coarctation,” or blockage of his aorta, which is the key pipeline supplying oxygen-rich blood to the body. As the on-call pediatric cardiologist, I was urgently called in to help out.Ryan’s story isn’t that unusual, and I’ve seen half a dozen similar children recently. A few months ago, the Centers for Disease Control and Prevention reported that the infant mortality rate in the United States was 6.71 per 1,000 live births, which was widely reported as being higher than other developed countries. Birth defects, especially involving the heart, are an important cause of these deaths. In October, researchers studying infant deaths over the past 16 years in California reported that hundreds of American infants like my patient probably die each year due to missed — but treatable — congenital heart defects.How can we identify these normal-appearing newborns before they leave the hospital, become critically ill like my patient and perhaps die?Traditionally, prospective mothers have prenatal sonograms to look for birth defects. But the quality of these scans varies widely, depending on the skill of the technician and the supervising doctor. In addition, current guidelines supported by the American College of Obstetricians and Gynecologists mandate only a limited “four-chamber view” of the heart. As a result, a 1998 study from Southwestern Medical School in Texas reported that only one-quarter of major heart defects are identified prenatally.Unfortunately, when heart defects are missed by prenatal ultrasounds, pediatricians also have a hard time telling if critical cardiac problems are present. Normally, doctors examining newborns suspect heart defects if they hear a loud rushing noise (a “murmur”) with a stethoscope, notice the child has a bluish color, or lacks a pulse in the lower extremities. But in 1999, British researchers found that half of serious heart defects were missed by routine exams after birth. If sent home, these newborns become seriously ill.Folic acid can prevent up to 50 percent of many heart defects, but only if taken for about two months prior to conception. Because most pregnancies are unplanned, the C.D.C. recommends that all menstruating women should take a daily multivitamin.What’s needed is a large-scale formal screening program, similar to mammography or colonoscopy to identify at-risk individuals. We already do this to identify newborns with certain hidden but deadly conditions. For example, most state health departments currently analyze a few blood drops taken from a baby’s foot and check for certain genetic problems like phenylketonuria (PKU) and galactosemia, which are treated with special diets to prevent developmental problems.Recently, researchers have identified a promising new method called pulse oximetry to screen all babies for heart defects. Taped briefly to a newborn’s foot, a small sensor painlessly beams red light through the foot and measures how much oxygen is in the blood. It takes about a minute. (Picture E.T. the extra-terrestrial’s finger lighting up, and you get the idea - this is so true) If the screening test is abnormal, doctors perform a confirmatory ultrasound of the heart. Last year, Norwegian doctors published one of the largest clinical trials of this strategy, and checked half of all babies born in the country.The results were impressive. Within a few hours of birth, pulse oximetry detected three-quarters of critical heart defects that had been previously missed. For every 2,000 newborns screened with the toe light, roughly one with a critical heart defect might have been prevented from going home. The cost-benefit ratio compares favorably to current practices of newborn screening for PKU and hypothyroidism. In January, Swedish doctors published an even more methodical study of almost 40,000 newborns, and showed that oximetry entirely eliminated death from missed critical cardiac defects.Of course, as with any screening, the technique may miss some defects and also involves some unnecessary, though benign, testing of normal children. But these false positive rates were low (only about one in 1,000 in the Swedish study) and triggered only about two instances of extra, noninvasive testing for every serious heart defect that was picked up. Many parents and doctors caring for children with critical heart defects subscribe to some variant of the “1 percent doctrine.” If there is even a small chance of catastrophe — like the sudden death of a newborn — they feel justified to push for preemptive action, especially when it’s a harmless and inexpensive screening test.While the screening test is not done routinely in the United States, some hospitals have adopted it, mostly in Texas and Florida, where some small trials have been conducted. But parents can ask doctors to screen their babies for heart defects using pulse oximetry. It’s essentially free since it needs no specialized equipment other than the oximeter, which is present in every hospital already. A specialized doctor isn’t needed; the test is quite simple, and a nurse can do it if the pediatrician orders it anytime after birth, but before discharge from the hospital. Hopefully they won’t mind doing it. Personally, I do think parents should request it. I did for my kids.Fortunately, Ryan, the baby I was urgently called to treat, had his heart surgery last summer and is doing well now. I see him every few months in clinic.Dr. Darshak Sanghavi is the chief of pediatric cardiology and assistant professor of pediatrics at the University of Massachusetts Medical School. He is the author of “A Map of the Child: A Pediatrician’s Tour of the Body,” and his Web site is www.darshaksanghavi.com.
A mission of HUGE proportions
I have decided. Today of all days. A Beautiful Sunshining day in Western PA. That I have a purpose. I feel the strong need to educate and make people Aware of Congential Heart Defects in our children and Down Syndrome in our children. this comes very much from my own struggle. To find GOOD information. To find hope, to find help. It's hard to find hope and positive information not just statistics. So, I have the need to start this mission. To Share everything I find and to help everyone I know. And those I don't know. This is something Trenton deserves and every other child out there.
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