“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation”
(Romans 5:3-4, NLT).
Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...-- Isak Dinesen
Mackynlee and I will be headed home on a commercial flight tomorrow. Our angel flight did not work out. Walter, the social worker, stood on his head this evening when we found out the angel flight wasn't working out. (WMP READERS: Walter is a black, male version of Martha Woods. Gotta love him!) He, and the doctors worked quickly to get all of the paperwork ready for the oxygen company and the airline. All is set to go. Just praying our oxygen will arrive here at CHOP in the morning. It is being overnighted to us. Also, pray I can figure out how to use it. If you get no post from me, we are on our way home. If things don't work out, I will relieve my stress through posting an update. CAUTION: It may not be a nice update. I'll try to keep my cool, but three weeks here is long enough for me. I love MS. I want to see Shelby and Connor badly!!
I want to end tonight (sounds like I'm preaching LOL) with this story. I want to dedicate it to my friends that I will be leaving here at CHOP. Coleen, (mom of two month old heart baby), Mike and Nichol (parents of Allie), Diane (mom of Lillian Grace), and a mom we had dinner with tonight at McDonalds. I never got her name, but she and her 4 year old, Cordelia invited Mackynlee and I to sit with them. I did not recognize her, but she recognized me. We met here on the cardiac floor at the beginning of our time here. Her 4 year old has down syndrome. She is recovering from heart surgery. She will be having brain surgery soon. The reason I did have not seen the mom is because she had a heart transplant about a year ago. She has been hospitalized herself during Cordelia's hospital stay, so she has not been able to be here. Her body had gone into rejection. I think God sent them to me to say "Hey life could be worse. It is not so bad after all."
Pray for Coleen. I do not think it is going well for her baby boy. They have been here since he has been born. To make things worse, she is a cardiac nurse herself. So, you can only imagine how hard it would be to actually understand all of the foreign language from the doctors.
Please pray Diane and Lillian will get to go home to Wisconsin soo.
Pray Mike and Nichol will get to take Allie home to be with her twin sister and twin brothers that are two. It is so difficult when a family has to be a part(especially under these not so good circumstances.)
Pray Cordelia will recover and go through her brain surgery like a champ!! She is precious. She loved Mackynlee.
"Lunch With God"
- author unknown -
A little boy wanted to meet God. He knew it was a long trip to where God lived, so he packed his suitcase with Twinkies and a six-pack of Root Beer and he started his journey.
When he had gone about three blocks, he met an elderly man. The man was sitting in the park just feeding some pigeons.
The boy sat down next to him and opened his suitcase. He was about to take a drink from his root beer when he noticed that the man looked hungry, so he offered him a Twinkie.
The man gratefully accepted it and smiled at boy. His smile was so pleasant that the boy wanted to see it again, so he offered him a root beer.
Again, the man smiled at him. The boy was delighted! They sat there all afternoon eating and smiling, but they never said a word.
As it grew dark, the boy realized how tired he was and he got up to leave, but before he had gone more than a few steps, he turned around, ran back to the man, and gave him a hug. The man gave him his biggest smile ever.
When the boy opened the door to his own house a short time later, his mother was surprised by the look of joy on his face. She asked him, "What did you do today that made you so happy?
"He replied, "I had lunch with God." But before his mother could respond, he added, "You know what? God's got the most beautiful smile I've ever seen!"
Meanwhile, the elderly man, also radiant with joy, returned to his home. His son was stunned by the look of peace on his face and he asked," Dad, what did you do today that made you so happy?"
He replied, "I ate Twinkies in the park with God." However, before his son responded, he added," You know, he's much younger than I expected."
Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. People come into our lives for a reason, a season, or a lifetime. Embrace all equally!
Thursday, October 8, 2009
Still Good
This is what I started typing yesterday, but I never got it posted.
Mackynlee slept so peacefully last night. She has also rested a good bit today. (I have too.) She has become more and more alert. Her eyes are looking more and more normal. Today she would actually look at people when they would enter the room. She has been watching me move around the room. She did not seem to be bothered with the lights in the hallway at all tonight. We sat in the hallway for long periods of time and she would just look around. Her eyes have only looked funny a few times today, and that has been for short periods of time.
Same news today. We both rested very good last night. This morning she has been making the weird movement with her eyes. She also pulls her head back and to the right. Doctors say this will go away. Praying it will.
She has actually been saying Ma quite a bit. NANANANABOOBOO: Dada!! She is also smiling at me. I have seen very few smiles from her since Saturday.
Right now I am waiting patiently on details about when our angel flight will be bringing us to MS.
I have come across this story numerous times. I decided to share it with you. Many have said to me how they hate that I am still here at the hospital, etc. I have shared sorrows and laughter with two other heart moms this week. Although I am so ready to come home, I will miss both of them so much. I would much prefer being home with Shelby and Connor, but I have made the best of my time here. We do have to look for the good in all of life's not so good situations. I have enjoyed every minute of my time with Diane and Nichol. Keep these two ladies, their families, and their babies in your prayers. Here's the story.
A Room With a View
Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. And every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window. The man in the other bed began to live for those one-hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.
The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color of the rainbow. Grand old trees graced the landscape, and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene.
One warm afternoon the man by the window described a parade passing by. Although the other man couldn't hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words. Days and weeks passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.
As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the world outside. Finally, he would have the joy of seeing it for himself. He strained to slowly turn to look out the window beside the bed. It faced a blank wall.
The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, "Perhaps he just wanted to encourage you."
Epilogue...
There is tremendous happiness in making others happy, despite our own situations. Shared grief is half the sorrow, but happiness when shared, is doubled. If you want to feel rich, just count all of the things you have that money can't buy.
MONEY CANNOT BUY THE RELATIONSHIP I HAVE MADE WITH NICHOL AND DIANE IN THESE PAST FEW WEEKS!! I AM SO BLESSED TO KNOW THEM!
Psalm 121:7-8
The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.
Mackynlee slept so peacefully last night. She has also rested a good bit today. (I have too.) She has become more and more alert. Her eyes are looking more and more normal. Today she would actually look at people when they would enter the room. She has been watching me move around the room. She did not seem to be bothered with the lights in the hallway at all tonight. We sat in the hallway for long periods of time and she would just look around. Her eyes have only looked funny a few times today, and that has been for short periods of time.
Same news today. We both rested very good last night. This morning she has been making the weird movement with her eyes. She also pulls her head back and to the right. Doctors say this will go away. Praying it will.
She has actually been saying Ma quite a bit. NANANANABOOBOO: Dada!! She is also smiling at me. I have seen very few smiles from her since Saturday.
Right now I am waiting patiently on details about when our angel flight will be bringing us to MS.
I have come across this story numerous times. I decided to share it with you. Many have said to me how they hate that I am still here at the hospital, etc. I have shared sorrows and laughter with two other heart moms this week. Although I am so ready to come home, I will miss both of them so much. I would much prefer being home with Shelby and Connor, but I have made the best of my time here. We do have to look for the good in all of life's not so good situations. I have enjoyed every minute of my time with Diane and Nichol. Keep these two ladies, their families, and their babies in your prayers. Here's the story.
A Room With a View
Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. And every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window. The man in the other bed began to live for those one-hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.
The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color of the rainbow. Grand old trees graced the landscape, and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene.
One warm afternoon the man by the window described a parade passing by. Although the other man couldn't hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words. Days and weeks passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.
As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the world outside. Finally, he would have the joy of seeing it for himself. He strained to slowly turn to look out the window beside the bed. It faced a blank wall.
The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, "Perhaps he just wanted to encourage you."
Epilogue...
There is tremendous happiness in making others happy, despite our own situations. Shared grief is half the sorrow, but happiness when shared, is doubled. If you want to feel rich, just count all of the things you have that money can't buy.
MONEY CANNOT BUY THE RELATIONSHIP I HAVE MADE WITH NICHOL AND DIANE IN THESE PAST FEW WEEKS!! I AM SO BLESSED TO KNOW THEM!
Psalm 121:7-8
The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.
Tuesday, October 6, 2009
Home Friday?
This mornings MRI did find a bleed in her head. It is between the skull and her brain; in between the large part of the brain and the small part of the brain. Not sure why this happened, possibly because of pain and tension during and after removal of the drainage tube Saturday. Doctors also feel like this pain and tension may have caused her fever to spike. You know when we are in enough pain, our bodies can do weird things. The doctors here say Mackynlee has taught them something they have never seen before. All are going to remember this in case another baby/child does the same thing. I guess Miss Mackynlee wanted to leave a legacy here at CHOP.
Both the neurology team and the cardiology team are agreeing on discharging us Friday, unless we go backwards. Talking with Walter about the angel flight in a few minutes.
Boy, the neurologists know bigger words than the cardiologists. It is so amazing!!
I forgot to tell everyone that while Mackynlee was in the CICU, she won several awards. 1)Prettiest bed award 2)Prettiest baby award and 3)Best personality award!! LOL.....
Father, before the mountains were born or You brought forth the earth and the world, from everlasting to everlasting You are God. You care for all of creation, the order of the universe, all people from past generations to the present, and You work powerfully and invisibly in our hearts. We are humbled by Your greatness and touched by Your kindness. We give You thanks and trust You for that which we don’t understand. We see only the fringes of Your ways, but that reminds us that Your power is what creates the works established by Your hands. You are our God, the rock in whom we trust and take refuge. Amen.
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
~ 1 Thessalonians 5:18 ~
I would also like to thank each and every one of you that know us and those who do not know us. We appreciate all of the time you have taken out of your life to keep up with our journey, and shower us with prayers. I love the following story that I want to share with you. We should all take it to heart.
Thanks for Your Time
Author Unknown
It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way. In fact, Jack moved clear across the country in pursuit of his dreams. There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.
Over the phone, his mother told him, "Mr. Belser died last night. The funeral is Wednesday."
Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.
"Jack, did you hear me?"
"Oh sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.
"Well, he didn't forget you. Every time I saw him he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.
"I loved that old house he lived in," Jack said.
"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.
"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important... Mom, I'll be there for the funeral," Jack said.
As busy as he was, he kept his word. Jack caught the next flight to his hometown. Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.
The night before he had to return home, Jack and his Mom stopped by to see the old house next door one more time.
Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap through space and time.
The house was exactly as he remembered. Every step held memories. Every picture, every piece of furniture... Jack stopped suddenly.
"What's wrong, Jack?" his Mom asked.
"The box is gone," he said.
"What box?" Mom asked.
"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most,'" Jack said.
It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.
"Now I'll never know what was so valuable to him," Jack said. "I better get some sleep. I have an early flight home, Mom."
It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox. "Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.
Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.
"Mr. Harold Belser" it read.
Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope. Jack's hands shook as he read the note inside.
"Upon my death, please forward this box and its contents to Jack Bennett. It's the thing I valued most in my life." A small key was taped to the letter. His heart racing, as tears filling his eyes, Jack carefully unlocked the box. There inside he found a beautiful gold pocket watch.
Running his fingers slowly over the finely etched casing, he unlatched the cover. Inside he found these words engraved:
"Jack, Thanks for your time! -Harold Belser."
"The thing he valued most...was...my time."
Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days. "Why?" Janet, his assistant asked.
"I need some time to spend with my son," he said. "Oh, by the way, Janet... thanks for your time!"
Both the neurology team and the cardiology team are agreeing on discharging us Friday, unless we go backwards. Talking with Walter about the angel flight in a few minutes.
Boy, the neurologists know bigger words than the cardiologists. It is so amazing!!
I forgot to tell everyone that while Mackynlee was in the CICU, she won several awards. 1)Prettiest bed award 2)Prettiest baby award and 3)Best personality award!! LOL.....
Father, before the mountains were born or You brought forth the earth and the world, from everlasting to everlasting You are God. You care for all of creation, the order of the universe, all people from past generations to the present, and You work powerfully and invisibly in our hearts. We are humbled by Your greatness and touched by Your kindness. We give You thanks and trust You for that which we don’t understand. We see only the fringes of Your ways, but that reminds us that Your power is what creates the works established by Your hands. You are our God, the rock in whom we trust and take refuge. Amen.
In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
~ 1 Thessalonians 5:18 ~
I would also like to thank each and every one of you that know us and those who do not know us. We appreciate all of the time you have taken out of your life to keep up with our journey, and shower us with prayers. I love the following story that I want to share with you. We should all take it to heart.
Thanks for Your Time
Author Unknown
It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way. In fact, Jack moved clear across the country in pursuit of his dreams. There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.
Over the phone, his mother told him, "Mr. Belser died last night. The funeral is Wednesday."
Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.
"Jack, did you hear me?"
"Oh sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.
"Well, he didn't forget you. Every time I saw him he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.
"I loved that old house he lived in," Jack said.
"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.
"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important... Mom, I'll be there for the funeral," Jack said.
As busy as he was, he kept his word. Jack caught the next flight to his hometown. Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.
The night before he had to return home, Jack and his Mom stopped by to see the old house next door one more time.
Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap through space and time.
The house was exactly as he remembered. Every step held memories. Every picture, every piece of furniture... Jack stopped suddenly.
"What's wrong, Jack?" his Mom asked.
"The box is gone," he said.
"What box?" Mom asked.
"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most,'" Jack said.
It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.
"Now I'll never know what was so valuable to him," Jack said. "I better get some sleep. I have an early flight home, Mom."
It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox. "Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.
Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.
"Mr. Harold Belser" it read.
Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope. Jack's hands shook as he read the note inside.
"Upon my death, please forward this box and its contents to Jack Bennett. It's the thing I valued most in my life." A small key was taped to the letter. His heart racing, as tears filling his eyes, Jack carefully unlocked the box. There inside he found a beautiful gold pocket watch.
Running his fingers slowly over the finely etched casing, he unlatched the cover. Inside he found these words engraved:
"Jack, Thanks for your time! -Harold Belser."
"The thing he valued most...was...my time."
Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days. "Why?" Janet, his assistant asked.
"I need some time to spend with my son," he said. "Oh, by the way, Janet... thanks for your time!"
Monday, October 5, 2009
MRI
Mackynlee has been scheduled for an MRI in the morning. 6:30 PA time, 5:30 MS time. She will be sedated and extubated during this procedure. The MRI is of her brain. They are looking for signs of a stroke, seizures, pressures, etc. Neurologists were concerned today because her eyes roll back and to the right side. They do not move to the left when she is having an "episode". Also, there was concern because Mackynlee has been favoring her right side. She likes to look that way and lay that way. Well, her IV blew this afternoon, it is now in the right hand and she is favoring her left side. So, long story short, I think she is smarter than we all realize and the reason she was favoring a side is because of comfort.
The nurse and I now feel that nothing will be found. We have come to the conclusion, because Mackynlee has done so well this evening that the weird behaviors(? spelling, sorry) have just been because of pain and exhaustion. Today there has been longer periods where she acts her normal self and shorter times that she doesn't act like Mackynlee. I even dressed her today. (Karen and Lauren: I put her on the pink heart outfit you brought her. It looked beautiful on her. I wanted to take a pic to post, but she had a bad diaper and it got all over the outfit. It is being washed now. We'll put it on again soon. LOL) She and I took a stroller ride and she loved it.
Her eating is getting better. Her heart rate is dropping quite a bit while she is resting, but it goes right back up. Doctors and nurses think it is doing this because she is finally getting into periods of deep sleep.
One of the nurses that were here Saturday night, came by to check on us a little bit ago. She commended me on an excellent job. She said she would have gone postal if that would have been her baby in that shape. She said I had so much patience, and when it went away, it was time to go away and demand something be done to help Mackynlee. That made me feel so good to hear.
Game Plan: If nothing is found during the MRI tomorrow and we should know something by tomorrow evening or early Wed morning, and if she continues eating well, we may get to come home sooner than later. Now I really do not know when sooner is, that is just the game plan that the charge nurse shared with me.
Our friends from Wisconsin may get to go home this week!! I am so happy for them. They have been here since Sept. 10th.
Mike and Nichol's baby Allie is still having good days and bad days. Today has been a great day for them. She has finally been taken off of the vent. Allie had surgery the same day as Mackynlee.
What God Hath Promised
Annie Johnson Flint
God hath not promised
Skies always blue,
Flower-strewn pathways
All our lives through;
God hath not promised
Sun without rain,
Joy without sorrow,
Peace without pain.
But God hath promised
Strength for the day,
Rest for the labour,
Light for the way,
Grace for the trials,
Help from above,
Unfailing sympathy,
Undying love.
The nurse and I now feel that nothing will be found. We have come to the conclusion, because Mackynlee has done so well this evening that the weird behaviors(? spelling, sorry) have just been because of pain and exhaustion. Today there has been longer periods where she acts her normal self and shorter times that she doesn't act like Mackynlee. I even dressed her today. (Karen and Lauren: I put her on the pink heart outfit you brought her. It looked beautiful on her. I wanted to take a pic to post, but she had a bad diaper and it got all over the outfit. It is being washed now. We'll put it on again soon. LOL) She and I took a stroller ride and she loved it.
Her eating is getting better. Her heart rate is dropping quite a bit while she is resting, but it goes right back up. Doctors and nurses think it is doing this because she is finally getting into periods of deep sleep.
One of the nurses that were here Saturday night, came by to check on us a little bit ago. She commended me on an excellent job. She said she would have gone postal if that would have been her baby in that shape. She said I had so much patience, and when it went away, it was time to go away and demand something be done to help Mackynlee. That made me feel so good to hear.
Game Plan: If nothing is found during the MRI tomorrow and we should know something by tomorrow evening or early Wed morning, and if she continues eating well, we may get to come home sooner than later. Now I really do not know when sooner is, that is just the game plan that the charge nurse shared with me.
Our friends from Wisconsin may get to go home this week!! I am so happy for them. They have been here since Sept. 10th.
Mike and Nichol's baby Allie is still having good days and bad days. Today has been a great day for them. She has finally been taken off of the vent. Allie had surgery the same day as Mackynlee.
What God Hath Promised
Annie Johnson Flint
God hath not promised
Skies always blue,
Flower-strewn pathways
All our lives through;
God hath not promised
Sun without rain,
Joy without sorrow,
Peace without pain.
But God hath promised
Strength for the day,
Rest for the labour,
Light for the way,
Grace for the trials,
Help from above,
Unfailing sympathy,
Undying love.
Friday, October 2, 2009
CHD Awareness
I copied and pasted this from www.thelittleheartthatcould.blogspot.com. Sorry I waited til the day before to post it. Even if you cannot participate, read the facts about CHD's posted below.
CHD Awareness Balloon Luanch
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.
Congenital Heart DefectsTell someone you love about Congenital Heart Defects!
~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation
Gives me chills everytime I read those facts about CHDs. So glad Trisha is getting out there and spreading the word. She is a strong, Godly woman who has been through a lot this year.
News on Mackynlee: We are out of the pod! YAY!! Still have our chest tube. BOOOOOO. Doctor wants chest tube to stay in one more day. We have had a crazy morning. The new baby in our pod went into cardiac arrest two times within 30 minutes this morning. The first time I wasn't kicked out because I was feeding Mackynlee. The second time I was kicked out. I heard them request some kind of surgical something. Keep this family in your prayers. He is a new baby here at CHOP, not even had surgery yet. Mackynlee and I got comfy in the rocking chair, then the person came to get blood work. Then we got comfy again, and Mackynlee projectile volmitted her formula. That's what the nurses get for not giving her a bath before now. She needed one so bad. She enjoyed every minute of it. I will post pics of it in a little. We were picking about it saying she was getting a spa treatment. There were three of us bathing her. Now I am praying she can rest. She is so tired, her eyes are blood shot. She cannot sleep for long periods of time in the pod, but now that we are in the room, maybe we will both sleep. The nurse has turned off the buzzers on our monitor. We have the bubbling of our chest tube, and the bubbling of the other baby's chest tube behind us. It is about to put me to sleep. The only problem, and I don't want this to sound mean, the baby behind the curtain sounds like she's gurgling/volmitting. Respiratory is in there and I don't know what kind of problem she could be having, but it sounds disgusting. Great, now the dad just walked in, he is noisy. Pray Baby Mackynlee gets more than a ten minute nap. She needs it so badly, and every little noise seems to interrupt her sleep. Other baby is gagging again. Gross. It is a tiny baby but is sounds like an adult.
The good thing about being in this room, I am so settled. That feels so good. I have my computer set up, I don't have to get it out of my backpack and put back. I have plug-ins to charge my computer, my cell phone, and Mackynlee's portable DVD player. I think this is going to be a great place to hang out for a few days with baby girl. Especially when that tube comes out!!!
I am going to the PRMH at some point today to get her stroller. Her nurse said I can take her for a stroll around the hospital. We just can't leave the 6th floor. At least I can take her to the family room and get me some coffee from time to time.
I have shared the following poem with my readers before, I want to share it again today. This is for you Trisha in memory of LittleJohnny. Keep on keeping on. Every word of this poem is so true. Whether you win or lose the battle, it applies to every life affected by a CHD. I see it here at CHOP>
Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”
Author - Stephanie Husted
Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden
CHD Awareness Balloon Luanch
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.
Congenital Heart DefectsTell someone you love about Congenital Heart Defects!
~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation
Gives me chills everytime I read those facts about CHDs. So glad Trisha is getting out there and spreading the word. She is a strong, Godly woman who has been through a lot this year.
News on Mackynlee: We are out of the pod! YAY!! Still have our chest tube. BOOOOOO. Doctor wants chest tube to stay in one more day. We have had a crazy morning. The new baby in our pod went into cardiac arrest two times within 30 minutes this morning. The first time I wasn't kicked out because I was feeding Mackynlee. The second time I was kicked out. I heard them request some kind of surgical something. Keep this family in your prayers. He is a new baby here at CHOP, not even had surgery yet. Mackynlee and I got comfy in the rocking chair, then the person came to get blood work. Then we got comfy again, and Mackynlee projectile volmitted her formula. That's what the nurses get for not giving her a bath before now. She needed one so bad. She enjoyed every minute of it. I will post pics of it in a little. We were picking about it saying she was getting a spa treatment. There were three of us bathing her. Now I am praying she can rest. She is so tired, her eyes are blood shot. She cannot sleep for long periods of time in the pod, but now that we are in the room, maybe we will both sleep. The nurse has turned off the buzzers on our monitor. We have the bubbling of our chest tube, and the bubbling of the other baby's chest tube behind us. It is about to put me to sleep. The only problem, and I don't want this to sound mean, the baby behind the curtain sounds like she's gurgling/volmitting. Respiratory is in there and I don't know what kind of problem she could be having, but it sounds disgusting. Great, now the dad just walked in, he is noisy. Pray Baby Mackynlee gets more than a ten minute nap. She needs it so badly, and every little noise seems to interrupt her sleep. Other baby is gagging again. Gross. It is a tiny baby but is sounds like an adult.
The good thing about being in this room, I am so settled. That feels so good. I have my computer set up, I don't have to get it out of my backpack and put back. I have plug-ins to charge my computer, my cell phone, and Mackynlee's portable DVD player. I think this is going to be a great place to hang out for a few days with baby girl. Especially when that tube comes out!!!
I am going to the PRMH at some point today to get her stroller. Her nurse said I can take her for a stroll around the hospital. We just can't leave the 6th floor. At least I can take her to the family room and get me some coffee from time to time.
I have shared the following poem with my readers before, I want to share it again today. This is for you Trisha in memory of LittleJohnny. Keep on keeping on. Every word of this poem is so true. Whether you win or lose the battle, it applies to every life affected by a CHD. I see it here at CHOP>
Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”
Author - Stephanie Husted
Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden
Thursday, October 1, 2009
Surgery #2
We had our 2nd surgery this past Monday. Lots of ups and downs, but for the most part Mackynlee is recovering fine. She is still in the CICU. Our prayer is that her drainage tube will be removed soon, and we will be able to go home to MS to our other children soon. We have been here in PA for two weeks. Missing Connor and Shelby a lot!!! I haven't been keeping my blogspot updated, but I saw where my friend Trisha has our blog website posted on her blog, so I am going to try to do better in keeping it updated.
Thursday, September 10, 2009
A Big Scare
Mackynlee's surgery is scheduled less than two weeks away. She started being restless on Monday, started running fever Tuesday, and crying continuously. I took her to the doctor yesterday (special thanks to Meemaw for riding with me). Praise God she has an ear infection. The doctor said if she had to get sick before surgery this was our best scenario!! She has already started feeling and looking much better. She slept all night long last night and was back at her usual, happy self this morning. This should not effect our surgery date at all. Pray she doesn't come down with anything else. We are keeping her in as much as possible to prevent her from being exposed to anything. When Shelby and I get home each evening we put our clothes straight into the washing machine and take a bath before touching anything!!
As you pray for Mackynlee, please pray for our whole family as we go through this 2nd surgery. I'm not going to sugar coat it; it is so diffucult. The least little thing, much less the big things, upsets me. Tuesday I had to go to an IEP(individualized educational plan) meeting on Mackynlee's behalf. It was all I could do not to cry. I have been in many of these meetings before as the teacher, but it is a totally different feeling being the parent of the child that needs the service. She really doesn't need any services at this time, this is mostly for precautionary measures. This service will help her catch up physically on any developmental delays she might face after surgery.
I also had to meet with my insurance person this week. She saw I had life insurance on two of my three children. She insisted I take it out also on my third child. I told her no. She continued to insist. I then told her I knew my third child would not qualify. She still, after hearing of the heart problem, insisted to try. We were denied. Then she continued to try to get Mackynlee to qualify for different insurances (I think because she felt so bad she had upset me and had not taken my word to begin with). Of course she was denied over and over. This was so hard for me to swallow. I knew she would not qualify, but I guess reality set in once again.
Each day closer to the surgery is more difficult to bear. It's not just the surgery date, but the date we will be separated once again from Shelby and Connor. Shelby is struggling in school this year. It breaks my heart to have to be so far away and not be able to help her each day with her homework. When in a situation like this, it is diffucult on all of the family members.
We are so thankful that Meemaw is going to stay at our house during the week(day and night) with Shelby and Connor. We feel this will provide consistency and stability for the two of them while we are away. They will visit with grand parents on the weekends. This is another blessing from God.
He has blessed us, and continues to bless us daily. We thank Him for giving us our three children. Our heart baby has changed our lives in so many ways. Although it is a difficult road in many ways to travel, we would not want it any other way.
This is a bible verse that I find much comfort in. I try to focus on it in the place of my worrying.
Isiah 41:10
Don't you be afraid for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will uphold you with the right hand of my righteousness.
As you pray for Mackynlee, please pray for our whole family as we go through this 2nd surgery. I'm not going to sugar coat it; it is so diffucult. The least little thing, much less the big things, upsets me. Tuesday I had to go to an IEP(individualized educational plan) meeting on Mackynlee's behalf. It was all I could do not to cry. I have been in many of these meetings before as the teacher, but it is a totally different feeling being the parent of the child that needs the service. She really doesn't need any services at this time, this is mostly for precautionary measures. This service will help her catch up physically on any developmental delays she might face after surgery.
I also had to meet with my insurance person this week. She saw I had life insurance on two of my three children. She insisted I take it out also on my third child. I told her no. She continued to insist. I then told her I knew my third child would not qualify. She still, after hearing of the heart problem, insisted to try. We were denied. Then she continued to try to get Mackynlee to qualify for different insurances (I think because she felt so bad she had upset me and had not taken my word to begin with). Of course she was denied over and over. This was so hard for me to swallow. I knew she would not qualify, but I guess reality set in once again.
Each day closer to the surgery is more difficult to bear. It's not just the surgery date, but the date we will be separated once again from Shelby and Connor. Shelby is struggling in school this year. It breaks my heart to have to be so far away and not be able to help her each day with her homework. When in a situation like this, it is diffucult on all of the family members.
We are so thankful that Meemaw is going to stay at our house during the week(day and night) with Shelby and Connor. We feel this will provide consistency and stability for the two of them while we are away. They will visit with grand parents on the weekends. This is another blessing from God.
He has blessed us, and continues to bless us daily. We thank Him for giving us our three children. Our heart baby has changed our lives in so many ways. Although it is a difficult road in many ways to travel, we would not want it any other way.
This is a bible verse that I find much comfort in. I try to focus on it in the place of my worrying.
Isiah 41:10
Don't you be afraid for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will uphold you with the right hand of my righteousness.
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