Monday, October 27, 2008
Finally I did it...
I finally created a Montage for Cecilia. Something on that never ending list of things to do but always fell to the bottom.
Wednesday, October 8, 2008
Lions, Tigers and Many Babies - and Tots Oh My!
John Michael is having his surgery right now - in CO - family from Alaska - amazing family.
Sir John Carter - known as Carter - was born 10/7 and is doing really well - Mom and Dad are at Parker's House and surgery is soon...
We have other Mom's that are preparing to deliver...
We also have some amazing Mom's and Dads who are cheering these babies on and their parents thought their little ones just flew to heaven.
And we have precious Ava who has re-herniated and a bowl adhesion repaired - very hard on her absolutely amazing parents. Ava's Blog is listed here too!
Please keep these in your thoughts, prayers and LUNG FUNCTION chants - amazing what positive thinking can do!
Sir John Carter - known as Carter - was born 10/7 and is doing really well - Mom and Dad are at Parker's House and surgery is soon...
We have other Mom's that are preparing to deliver...
We also have some amazing Mom's and Dads who are cheering these babies on and their parents thought their little ones just flew to heaven.
And we have precious Ava who has re-herniated and a bowl adhesion repaired - very hard on her absolutely amazing parents. Ava's Blog is listed here too!
Please keep these in your thoughts, prayers and LUNG FUNCTION chants - amazing what positive thinking can do!
Tuesday, September 23, 2008
"Cecilia" by Simon & Garfunkel
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.
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.
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.
Subscribe to:
Posts (Atom)
