I always liked the song Cecilia by Simon and Garfunkel but that was not the reason I chose the name for Cecilia.
Through research I found that the song is interpreted by many to be about a lover but another interpretation is that it is more about the frustration of a songwriter's inspiration. Saint Cecilia is the Patron Saint of Musicians and Simon mentions her again in the song "The Coast" from the Album The Rhythm of the Saints: "A family of musicians took shelter for the night in the little harbor church of St. Cecilia."
Paul Simon also had a Black Lab named Cecilia and Art Garfunkel had reported that Simon never dated anyone named Cecilia and the song was probably about his dog.
I just like the song so I added it to this blog.
Tuesday, September 23, 2008
Monday, September 22, 2008
99% Suvival Rate Would Be Nice - A Goal...
We have had too many precious babies fight hard against congenital diaphragmatic hernia and still loose the battle - not the war. The war is still going on with their parents, grandparents, families and friends. There is a need to have more effective treatment for these babes and for lung function to be improved so they can survive.
When Cecilia was born in 1999, they had little they could do with the number one killer to these babies - pulmonary hypertension. A few years later there were more drugs out there that could be given to these babes to get them to the point of recovering and those lungs to the point that there may be little need for the drugs or none. Some children may still need the medications - some do not. The point is - it is out there now to help. We need more, so much more.
It just doesn't seem to be enough out there.
I am not asking for a "cure" - I have seen long enough and researched congenital diaphragmatic hernia long enough to know it is a naturally occurring birth defect. I would like to see the survival rate at 99% - nothing in life is 100%. Next is to have more out there for families and children to have the best therapies so when they do survive they can be the best they can be and get the help for them to have a good quality of life and overcome as much as they can.
Some days I feel so helpless in this war on this monster...
When Cecilia was born in 1999, they had little they could do with the number one killer to these babies - pulmonary hypertension. A few years later there were more drugs out there that could be given to these babes to get them to the point of recovering and those lungs to the point that there may be little need for the drugs or none. Some children may still need the medications - some do not. The point is - it is out there now to help. We need more, so much more.
It just doesn't seem to be enough out there.
I am not asking for a "cure" - I have seen long enough and researched congenital diaphragmatic hernia long enough to know it is a naturally occurring birth defect. I would like to see the survival rate at 99% - nothing in life is 100%. Next is to have more out there for families and children to have the best therapies so when they do survive they can be the best they can be and get the help for them to have a good quality of life and overcome as much as they can.
Some days I feel so helpless in this war on this monster...
Tuesday, August 26, 2008
In The Combat Against Congenital Diaphragmatic Hernia
Never give in... never, never, never, never, in nothing great or small, large or petty, never give in except to convictions of honour and good sense. Never yield to force... never yield to the apparently overwhelming might of the enemy. ~Winston Churchill
Wednesday, August 20, 2008
William Ethan August 19 - 20, 2008
Another angel blessed us and was called to heaven. He fought valiantly. His parents relocated from Georgia to have him at CHOP and uplifted their lives for him - to give him the best possible care. I humbly ask all to say a prayer for them.
Will is to be remembered always.
Peace.
Will is to be remembered always.
Peace.
Monday, August 11, 2008
Giving Hope
About 7 years ago, I had a call from a mother whose son was admitted at the University of Virginia Medical Center NICU. She was of course scared and had never heard of congenital diaphragmatic hernia before. I was still "in grief" but happy to try and help this mom. She had been told of ECMO and that does scare parents, it is after all the last resort. I spoke to her and then I visited.
It sometimes is hard for me to enter UVA. I am fine if I don't smell antiseptic I am fine. I think one visit with this mom I had to go into the Chapel for a moment to keep from hyperventilating. I did go visit that day but I realized how much something little could just upset me. Her baby boy is fine and thriving today and she has gone to school and has become a Physical Therapist.
One thing about the visits I recall so vividly. I was waiting in their waiting room on the 7th floor, that really needed to be updated and has now. A young man came off the elevators and I believe his mother was with him. She went to go find some one to give them some update. It was obvious they just traveled from somewhere to be with his newborn. I could see the tension in his shoulders and in his body language. He was vividly upset and worried. I started to ask him just simple questions.
"Is your baby here?" I asked.
"Yes, they just transported him here." he answered.
"Where are you from?" I asked.
"Harrisonburg. His mom is still in the hospital there." he answered.
"You know your son is in one of the best hospitals in the world here. The staff and doctors here will do everything in their power to help your son. They can also take a picture for his mom, just ask them." I told him.
I could see his shoulders lower and his body relax as I also told him that there are doctors there that are part of cutting edge medicine that saves lives and also gives quality to lives that they save. I told him I was there visiting a mom whose baby was also there but my own daughter was there and I knew they did everything they could for her. I told him she didn't survive but there are more there that do survive and that her condition was server.
I was at the time - trying to comfort a parent who was obviously scared, worried and overwhelmed. They called him to come back to the NICU and I told him - no question he asked was dumb and to be with his son because they know their parents and know people would be thinking and praying for them. I never got his name. He never got mine. I just hope that that made the difference to give him hope.
It sometimes is hard for me to enter UVA. I am fine if I don't smell antiseptic I am fine. I think one visit with this mom I had to go into the Chapel for a moment to keep from hyperventilating. I did go visit that day but I realized how much something little could just upset me. Her baby boy is fine and thriving today and she has gone to school and has become a Physical Therapist.
One thing about the visits I recall so vividly. I was waiting in their waiting room on the 7th floor, that really needed to be updated and has now. A young man came off the elevators and I believe his mother was with him. She went to go find some one to give them some update. It was obvious they just traveled from somewhere to be with his newborn. I could see the tension in his shoulders and in his body language. He was vividly upset and worried. I started to ask him just simple questions.
"Is your baby here?" I asked.
"Yes, they just transported him here." he answered.
"Where are you from?" I asked.
"Harrisonburg. His mom is still in the hospital there." he answered.
"You know your son is in one of the best hospitals in the world here. The staff and doctors here will do everything in their power to help your son. They can also take a picture for his mom, just ask them." I told him.
I could see his shoulders lower and his body relax as I also told him that there are doctors there that are part of cutting edge medicine that saves lives and also gives quality to lives that they save. I told him I was there visiting a mom whose baby was also there but my own daughter was there and I knew they did everything they could for her. I told him she didn't survive but there are more there that do survive and that her condition was server.
I was at the time - trying to comfort a parent who was obviously scared, worried and overwhelmed. They called him to come back to the NICU and I told him - no question he asked was dumb and to be with his son because they know their parents and know people would be thinking and praying for them. I never got his name. He never got mine. I just hope that that made the difference to give him hope.
Saturday, July 26, 2008
The Last Lecture - Randy Pausch
Last fall, I received information and the video of the "Last Lecture" from a non-profit email daily newsletter I belong. I love it because I get this inspirational stuff, quotes and stories of people who are making a difference through the world. I had been meaning to order Professor Pausch's book for many months - it just slipped my mind. Other things came up but I finally did order it on Thursday, July 24. He did something for his family that ignited the world. His children, wife, family, friends and colleges should be very proud of what this man did in life. I hope they treasure their memories and know that love transcends death and so does inspiration.
It is truly an honor to have had his Last Lecture shared with us. I wish his family peace through this time.
Saturday, July 19, 2008
Marching On...
It has been over nine years since we received the diagnoses "congenital diaphragmatic hernia" and our world changed. Since that time, I grieved, I grew and I changed. I learned and I stumbled along the way. Doors opened and some closed. I learned to accept that there are things in this life we have absolutely no control and it is how you handle those things. I became a better parent to my oldest daughter and later had Cecilia's little brother.
Hard to call him her little brother, he was always bigger than she. Her spitting image - except she had MUCH bigger feet. Many know I have a thing for baby feet - I think they are the most adorable things on this earth. What I regret most with Cecilia is not having her hand print - I have her foot prints - but not a hand print. Why the expectant families who join Breath of Hope's Listerve receive a Hand print Kit with their packages. (Yes, I know a bit of me BUT most hospitals take foot prints.)
In the process of living as a Mom of an angel I can now say I have more good days and a few might be bad. Her Birthday gets to me still. Christmas is still a forced effort but not as bad. Early in the journey - I rarely had a good minute and gradually they came.
I compare parental grief to crawling into a cocoon and feeling alone, isolated and dark. Gradually you come out of that - at your own pace and in your own time. You learn to embrace your self - your new self and know you still love your child. True and unconditional love never dies - it grows and continues it is a matter of how you project that in your life. Obviously, I still have lessons to learn and am needed here. I accept that. There were days I didn't like that but I accept it.
I have learned that parents of those that survive this horrible birth defect also grieve. They have taught me so much about Cecilia's case and also about congenital diaphragmatic hernia and the treatments and options out there. Her story was written in January 2000, I have edited it over the years but it remains for the most part as it was then. Before her, when a baby with CDH was fighting and their kidneys shut down, every case I had read - the parents were asked to let the child go, there was no hope. The University of Virginia CMC NICU staff didn't do that - they offered hope that perhaps she could overcome. Since her medical case, I have heard of at least seven others that they have used the CVVH machine for hemophiltration. I also have learned that the kidneys failing had nothing to do with her genes but ECMO itself. You see for the kidneys to work - they need that heart beat. ECMO takes that from the patient as it is protecting the lungs and heart and allowing them to rest. Isn't it amazing how all our systems work together? Today, most hospitals try to use ECMO for a shorter period of time. Today they know a bit more. There are drugs out there that can help with pulmonary hypertension. Today sometimes they still do not work.
This week - five families will hear of congenital diaphragmatic hernia for most likely the first time. It is a "naturally occurring" birth defect that isn't really natural. There definitely are no natural treatments for it. It requires venting the baby, possibly ECMO, drugs to help with various needs and the window of opportunity to do surgery and then of course prayers and hope. With each of them it comes down to one thing that determines their survival - lung function. Without it, they don't breathe, their hearts will stop and nothing else will heal. It isn't necessarily the size of the lungs but if they can work properly.
Over the years, I have seen children survive this birth defect and thrive - never showing many residuals in their future. I have seen other children with minor issues such as reflux or eating issues. I have also known of children that battle more issues as a result of CDH. I have known of some that live for six or twelve months or several years and the complications of treatment or CDH eventually take their toll and they die. Their parents have to be pro-active when it comes to their care.
There needs to be more education even among the medical community about these children who do survive it. They are not going to be on a "normal" growth curve. They were born smaller, they were delayed in development and in feeding because their lives where in balance. It was more important for those lungs to recover. It was more important to save their lives. So they are a bit smaller, so they are a bit delayed as long as they are moving forward that is the most important thing for them. Their parents should be praised. Sometimes there are set backs because of illnesses or colds or another diagnoses. Take that into consideration.
One thing I have learned is each person is so individual. Each of these children who have CDH are too. No two cases are exactly the same. Why do we compare ever? It helps if we have guidelines but if these children - all children are progressing - we need to embrace that and understand that if we start treating the individual that is the key to progression.
We also need much more awareness of this birth defect. It occurs just as often as Cystic Fibrosis, Spina Bifida and Downs syndrome in healthy mothers between the ages of 19 to 34. More know about those birth defects. The difference is that in half the CDH cases, they do not survive. I also have heard it called "rare" it isn't rare! Speak to the Nurses and Doctors at any hospital that is equipped to treat CDH babies - their is always ONE in their NICU/PICU. I know of ten families in the city I live that have had children with CDH and there are probably much more.
So I march on...with an angel in my heart - and many others too.
Hard to call him her little brother, he was always bigger than she. Her spitting image - except she had MUCH bigger feet. Many know I have a thing for baby feet - I think they are the most adorable things on this earth. What I regret most with Cecilia is not having her hand print - I have her foot prints - but not a hand print. Why the expectant families who join Breath of Hope's Listerve receive a Hand print Kit with their packages. (Yes, I know a bit of me BUT most hospitals take foot prints.)
In the process of living as a Mom of an angel I can now say I have more good days and a few might be bad. Her Birthday gets to me still. Christmas is still a forced effort but not as bad. Early in the journey - I rarely had a good minute and gradually they came.
I compare parental grief to crawling into a cocoon and feeling alone, isolated and dark. Gradually you come out of that - at your own pace and in your own time. You learn to embrace your self - your new self and know you still love your child. True and unconditional love never dies - it grows and continues it is a matter of how you project that in your life. Obviously, I still have lessons to learn and am needed here. I accept that. There were days I didn't like that but I accept it.
I have learned that parents of those that survive this horrible birth defect also grieve. They have taught me so much about Cecilia's case and also about congenital diaphragmatic hernia and the treatments and options out there. Her story was written in January 2000, I have edited it over the years but it remains for the most part as it was then. Before her, when a baby with CDH was fighting and their kidneys shut down, every case I had read - the parents were asked to let the child go, there was no hope. The University of Virginia CMC NICU staff didn't do that - they offered hope that perhaps she could overcome. Since her medical case, I have heard of at least seven others that they have used the CVVH machine for hemophiltration. I also have learned that the kidneys failing had nothing to do with her genes but ECMO itself. You see for the kidneys to work - they need that heart beat. ECMO takes that from the patient as it is protecting the lungs and heart and allowing them to rest. Isn't it amazing how all our systems work together? Today, most hospitals try to use ECMO for a shorter period of time. Today they know a bit more. There are drugs out there that can help with pulmonary hypertension. Today sometimes they still do not work.
This week - five families will hear of congenital diaphragmatic hernia for most likely the first time. It is a "naturally occurring" birth defect that isn't really natural. There definitely are no natural treatments for it. It requires venting the baby, possibly ECMO, drugs to help with various needs and the window of opportunity to do surgery and then of course prayers and hope. With each of them it comes down to one thing that determines their survival - lung function. Without it, they don't breathe, their hearts will stop and nothing else will heal. It isn't necessarily the size of the lungs but if they can work properly.
Over the years, I have seen children survive this birth defect and thrive - never showing many residuals in their future. I have seen other children with minor issues such as reflux or eating issues. I have also known of children that battle more issues as a result of CDH. I have known of some that live for six or twelve months or several years and the complications of treatment or CDH eventually take their toll and they die. Their parents have to be pro-active when it comes to their care.
There needs to be more education even among the medical community about these children who do survive it. They are not going to be on a "normal" growth curve. They were born smaller, they were delayed in development and in feeding because their lives where in balance. It was more important for those lungs to recover. It was more important to save their lives. So they are a bit smaller, so they are a bit delayed as long as they are moving forward that is the most important thing for them. Their parents should be praised. Sometimes there are set backs because of illnesses or colds or another diagnoses. Take that into consideration.
One thing I have learned is each person is so individual. Each of these children who have CDH are too. No two cases are exactly the same. Why do we compare ever? It helps if we have guidelines but if these children - all children are progressing - we need to embrace that and understand that if we start treating the individual that is the key to progression.
We also need much more awareness of this birth defect. It occurs just as often as Cystic Fibrosis, Spina Bifida and Downs syndrome in healthy mothers between the ages of 19 to 34. More know about those birth defects. The difference is that in half the CDH cases, they do not survive. I also have heard it called "rare" it isn't rare! Speak to the Nurses and Doctors at any hospital that is equipped to treat CDH babies - their is always ONE in their NICU/PICU. I know of ten families in the city I live that have had children with CDH and there are probably much more.
So I march on...with an angel in my heart - and many others too.
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