A year ago today was the day we thought that we would get some answers.
We went to the pediatrician for just a two month check up at least that's what it was when I made the appointment in September of 08. However the day before, the Urgent Care Doctor sent the x-ray to the pediatrician and it changed our appointment.
Madelynn has a boot-shaped heart. What does that mean?? The pediatrician did not what to speak out of turn until the cardiologist got a good look at her heart. He told us not to worry if Madelynn had a serious heart condition she would display other symptoms. She was not displaying ANY of these other symptoms.
So again I left another doctor with almost no answers but with more than I knew the day before. That evening I spent researching through the Internet all of the terms I heard the doctor say. I felt a little better because the doctor was right. Madelynn truly did not display any of the symptoms for a child with a boot-shaped heart.
We had an appointment for October 29Th 2008 to see the cardiologist. So again we were in another waiting game this one was a little bit longer, about 15 days.
There was still something that we had not done. Other than each other Phil and I had not told ANYONE. We needed to tell our parents and other family members. My parents were visiting my sister. I did not want to call and put a damper on that visit and I truly did not know that much as it was.
So sometime over the 15 day waiting period I sent out an email that included the most important people we wanted to tell. I know it sounds cold to send this type of announcement in an email. However, this was the best way I could properly tell everyone the same story, not leave anything out or exhaust myself from crying or telling the same story over and over again.
I was trying to stay positive as I have older children to worry about. The more I talked about it I knew I would just cry and I didn't have the energy for that right know. The days I carried it around without telling anyone made it a dream just unreal at this point. I watched Madelynn like a hawk but saw nothing. Just normal everyday baby stuff.
Things were so normal in fact that we were not ready for journey we were about to undertake.
Or were we??
TTFN
Wednesday, October 14, 2009
Tuesday, October 13, 2009
Mother's
This evening I watched six children both mourn the loss of their mother but also celebrate her life. As I watched the children talk about the life they had with their mother, it was amazing. Even talking about times they got in trouble or weekly rituals they hated made them laugh. The treasured memories that are burned in their minds forever. This was a great mother, just knowing her for almost 10 years changed part of my life forever.
But I also have the luxury of a remarkable mother. On the important stuff she is never wrong. Her unconditional love is amazing, her sense of humor will keep you in stitches and her grace the way she goes through life is beautiful. Sometimes it may not seem like it but I wouldn't trade even a minuscule of time with her for anything.
Then I know way too many people who have had to bury their mother at way too young an age. Their whole world shattered. Unsure how to live life without her. No more Sunday lunches, no more early morning calls to help get the day started, no more Saturday shopping ventures, no more chats over coffee, all of those special moments that you only shared with mom, gone. Trying to continue that special time without her just isn't the same and trying to fill that space with something else can be so painful.
So here is what I don't understand.............In my life time I have heard children say I hate you to their mother or worse call them names. This is the woman who carried you for 9 months, rocked you into slumber while operating an maybe 3-4 hours of sleep herself, the bible even says Honor thy father and thy mother. I know people who spending time with their mother is simply too much trouble.
Currently, I have a friend who has been caring for her mother for about two years. Her mother has Alzheimer's and it makes some days very stressful and difficult. In recent days, her mother is very hateful and mean to her. Her mother is ill and she is just trying to give her the best care possible and it is really taking a toll on her. In about a month or so her mother will go to a home that will better care for her medical needs. Sometimes I get calls from her and she is really frustrated and she can't wait for her to be at the home. This is a new facility that is being built they are just waiting for it to be open.
I ask her you don't really mean that. Then I say one of these days she will be gone and your heart will have a hole that will never be filled again. You will miss her when she is gone. At this point there is a BIG sigh in the conversation. I get some type of response like yes I know. It is kind of like I replenished her because I reminded her life will not always be like this and cherish what little time you have left.
Mother's are a precious gift and never not even for a second be taken for granted.
I love you mom~Chelsea
TTFN
But I also have the luxury of a remarkable mother. On the important stuff she is never wrong. Her unconditional love is amazing, her sense of humor will keep you in stitches and her grace the way she goes through life is beautiful. Sometimes it may not seem like it but I wouldn't trade even a minuscule of time with her for anything.
Then I know way too many people who have had to bury their mother at way too young an age. Their whole world shattered. Unsure how to live life without her. No more Sunday lunches, no more early morning calls to help get the day started, no more Saturday shopping ventures, no more chats over coffee, all of those special moments that you only shared with mom, gone. Trying to continue that special time without her just isn't the same and trying to fill that space with something else can be so painful.
So here is what I don't understand.............In my life time I have heard children say I hate you to their mother or worse call them names. This is the woman who carried you for 9 months, rocked you into slumber while operating an maybe 3-4 hours of sleep herself, the bible even says Honor thy father and thy mother. I know people who spending time with their mother is simply too much trouble.
Currently, I have a friend who has been caring for her mother for about two years. Her mother has Alzheimer's and it makes some days very stressful and difficult. In recent days, her mother is very hateful and mean to her. Her mother is ill and she is just trying to give her the best care possible and it is really taking a toll on her. In about a month or so her mother will go to a home that will better care for her medical needs. Sometimes I get calls from her and she is really frustrated and she can't wait for her to be at the home. This is a new facility that is being built they are just waiting for it to be open.
I ask her you don't really mean that. Then I say one of these days she will be gone and your heart will have a hole that will never be filled again. You will miss her when she is gone. At this point there is a BIG sigh in the conversation. I get some type of response like yes I know. It is kind of like I replenished her because I reminded her life will not always be like this and cherish what little time you have left.
Mother's are a precious gift and never not even for a second be taken for granted.
I love you mom~Chelsea
TTFN
Monday, October 12, 2009
Madelynn's Heart 1
Today is the beginning of a series of anniversaries. This is the day that everything about my life changed forever.
As we reach another anniversary, I will tell you about that day.
First thing in the morning I took Madelynn to the Urgent Care for a really bad cough. An x-ray was taken to make sure there was no fluid in her lungs. There was not. However, the Urgent Care Doctor was uncomfortable with what her saw and wanted a second opinion. He sent us home and said he would call after he received the second opinion.
I was sitting on the couch and the phone rang...............
I was told that Madelynn's heart was abnormally shaped and that she needed to see a pediatric cardiologist. The Urgent Care doctor told us that we needed to call the pediatrician as soon as possible and to call him Monday morning. As the Doctor spoke tears streamed down my face faster and faster.
By this time, Phil did not know what the doctor had said but he knew I was upset. Kaitlynn and Jackson saw me crying and rushed to my side. "Mommy, Mommy.....what's wrong!!!" I took a deep breath and told Katie and Jack this..............
Do you know what the shape of a heart is.....and I traced the shape of a heart where Kaitlynn;'s heart is? Yes Mommy. Well Madelynn's heart is not shaped like yours. They think she has a very special heart. In a few days we are going to see how special her heart is.
At that moment in time I have no idea where those words came from. My mouth was moving but I should not have been able to actually speak those words so my other children would not be afraid. Kaitlynn seemed okay with that and she and Jack went back to play. Phil calmed me down and told me not to worry until we knew something concrete. However, my racing mind got the best of me. I tried to remember some of the key words the doctor had said and started surfing the web. This was a bad idea.
There were way too many possibilities and my heart couldn't handle most of them. So I cried myself to sleep and would have to wait until we saw the pediatrician. Madelynn already had an appointment for shots in two days. So I just had to wait 48 hours. Easier said than done.
As this journey progressed, I would soon find out that this Urgent Care doctor, Dr. Alfred Kendrick, saved her life.
TTFN
As we reach another anniversary, I will tell you about that day.
First thing in the morning I took Madelynn to the Urgent Care for a really bad cough. An x-ray was taken to make sure there was no fluid in her lungs. There was not. However, the Urgent Care Doctor was uncomfortable with what her saw and wanted a second opinion. He sent us home and said he would call after he received the second opinion.
I was sitting on the couch and the phone rang...............
I was told that Madelynn's heart was abnormally shaped and that she needed to see a pediatric cardiologist. The Urgent Care doctor told us that we needed to call the pediatrician as soon as possible and to call him Monday morning. As the Doctor spoke tears streamed down my face faster and faster.
By this time, Phil did not know what the doctor had said but he knew I was upset. Kaitlynn and Jackson saw me crying and rushed to my side. "Mommy, Mommy.....what's wrong!!!" I took a deep breath and told Katie and Jack this..............
Do you know what the shape of a heart is.....and I traced the shape of a heart where Kaitlynn;'s heart is? Yes Mommy. Well Madelynn's heart is not shaped like yours. They think she has a very special heart. In a few days we are going to see how special her heart is.
At that moment in time I have no idea where those words came from. My mouth was moving but I should not have been able to actually speak those words so my other children would not be afraid. Kaitlynn seemed okay with that and she and Jack went back to play. Phil calmed me down and told me not to worry until we knew something concrete. However, my racing mind got the best of me. I tried to remember some of the key words the doctor had said and started surfing the web. This was a bad idea.
There were way too many possibilities and my heart couldn't handle most of them. So I cried myself to sleep and would have to wait until we saw the pediatrician. Madelynn already had an appointment for shots in two days. So I just had to wait 48 hours. Easier said than done.
As this journey progressed, I would soon find out that this Urgent Care doctor, Dr. Alfred Kendrick, saved her life.
TTFN
Friday, October 9, 2009
Good-Bye Mama Kay
The last 5 days have been pretty busy but also very sad. Due to some complications my friend from work has fallen into a coma and is beyond recovery. Her children are all coming together this weekend to say a final farewell and turn all of the machines off Monday. See previous post here. I have cried a lot over the last 36 hours and today at work realized how much I will miss my friend.
My hope is that her family finds peace in her passing and I know in my heart God is waiting for her with open arms. Her husband passed away about 25 years ago, I am sure he is waiting for her. Good-bye Mama Kay I will miss our morning chats.
TTFN
My hope is that her family finds peace in her passing and I know in my heart God is waiting for her with open arms. Her husband passed away about 25 years ago, I am sure he is waiting for her. Good-bye Mama Kay I will miss our morning chats.
TTFN
Sunday, October 4, 2009
Just some new photos
About a week or so ago I realized I needed to clean out my camera memory card. Over the last two months I have been taking pictures but did not edit them or clean them off the memory card. When Phil and I renovated our Master bed and bath about three years ago we did it in shades of browns. The top half of the wall is a color called antique lace and the bottom half is coffee.
If you ask me the top half looks like the color of of an aged doily, while the bottom half looks like I smeared a Hershey bar on the wall separated by a white chair rail. When the room was finished I decided to decorate the walls with only photos of the kids. These will be the additions to the walls.
So here is Katie.....
Last but definitely not least we have Maddie.......
Not sure what I will do with this one???........ Daddy and Maddie sharing a Froot Loop....
TTFN................
If you ask me the top half looks like the color of of an aged doily, while the bottom half looks like I smeared a Hershey bar on the wall separated by a white chair rail. When the room was finished I decided to decorate the walls with only photos of the kids. These will be the additions to the walls.
So here is Katie.....
Then we have Jack......
Last but definitely not least we have Maddie.......
Not sure what I will do with this one???........ Daddy and Maddie sharing a Froot Loop....
TTFN................
Saturday, October 3, 2009
Cheerleading
Back in May we went to Katie's Pre-School Graduation. On the back of the program it lists all of the graduates and what they want to be when they grow up. Of all things......Katie said Cheerleader. When Katie cut and donated her hair her only disappointment was that she couldn't put her hair in a ponytail like a cheerleader. Needless to say Phil and I got the point.
Over the first few weeks of elementary school as a parent you are always inundated with tons of events and activities for you and/or your child to participate in. We decided that when the cheerleader flyer came home that we would let her participate. Today was the first class. The parents are only allowed to be in the first class and the last class. It is too distracting to the girls.
For Katie she was very excited about the class. We figured since she was missing her old classmates and school maybe this would be a good thing for her to make even more new friends. We learned a few days before class that Katie's best friend in pre-school is also in the cheerleader class. So for Katie right now life is good.
Katie and her Friend........
Showing off her new moves........
Over the first few weeks of elementary school as a parent you are always inundated with tons of events and activities for you and/or your child to participate in. We decided that when the cheerleader flyer came home that we would let her participate. Today was the first class. The parents are only allowed to be in the first class and the last class. It is too distracting to the girls.
For Katie she was very excited about the class. We figured since she was missing her old classmates and school maybe this would be a good thing for her to make even more new friends. We learned a few days before class that Katie's best friend in pre-school is also in the cheerleader class. So for Katie right now life is good.
Katie and her Friend........
Showing off her new moves........
Learning good stretching exercises...... 
With all of the adjustments Katie has been going through I think this will be something fun for her. The class goes until January so it will be awhile before I have new photos of her as a cheerleader.
TTFN
Thursday, October 1, 2009
not what I was hoping for..............
Today started out bad because we woke up late..........Phil was to be leaving at 6am and I should have been showered and waking the kids for school. Instead, Phil woke up at 6am woke me up. I jumped in the shower and her comes Jack. Miraculously enough at 7:15 I was out the door to drop Katie off at school, Jack off to pre-school, stop back home to get Maddie a good breakfast and off to the pulmonologist.
It is almost 75 miles round trip to see this doctor so I wanted to make sure half way there she wouldn't start screaming for food. I was really hoping for good news today. The breathing treatments are the last part of Maddie's recovery. She still gets one treatment a day. We had an x-ray done Tuesday so the doctor could see if there was a change.
As the doctor talked my heart sank. In six months, there was no additional recovery to Maddie's diaphragm paralysis, in a month she has gained no weight and she could be on the breathing treatments for years. After I stopped sulking I started thinking like a responsible parent and asking questions. So yes all of these things are not good news but here is a little bit more information.
Her diaphragm could still recover over time...if it doesn't she could still have a pretty normal life the way it is. She would be better off if it recovered more. She could change her breathing treatments to an inhaler. It would be more convenient for us to change to an inhaler. I decided I would wait til she was older before we made that decision. There is also a slim chance we would take her off the treatments altogether to see if she could handle it. My thinking was maybe after cold and flu season.
Has not gained even an ounce. That was definitely not what I was looking for today but she has not lost any weight. In the last two weeks Maddie has gone to ALL table food and all drinks out of a sippy cup. No more bottles. She also is sleeping on a cot at daycare. State law requires all children a year and older to sleep on a cot. For those of you who have been around Maddie she doesn't walk ........SHE RUNS everywhere. She is afraid she will miss something when Jack and Katie are around and she hates not being in the same room with me. So she is eating just not enough to gain weight only enough to maintain her weight.
This is okay for now. In about two weeks I am hoping she will show signs of increased eating and slowly the weight will stick around. She eats well at daycare and most days pretty good at home. I just need to sit down and develop a high calorie diet for her she will like. I still meet with the nutritionist once a month and she and I will be speaking soon.
When the doctor said it might be years before she has another chest x-ray, I wanted to cry. It means my child is not getting completely well and may not ever get completely well. Yes she could still have a normal life but she is not completely well. I just felt defeated. I had so much hope going into this appointment today and I left totally deflated and angry. To see Maddie you would have not idea the journey we have walked, some days crawled and other days sat motionless. It is just so frustrating to hear she has no change.
The drive to the other children's hospital today, there is no direct highway route. We travel a two lane back road through the country. I actually love this drive and is usually pretty peaceful in the morning. On the way home, my mind was racing and I was angry. I had become so comfortable with seeing her and feeling like normal in a way I feel like I have let her down. So over the next few days I will create a new game plan and become very defensive about her again and the people she is around. It is the only way I can protect her and help her. I hate being knocked down we didn't deserve it.
Hoping for better days.....................TTFN
It is almost 75 miles round trip to see this doctor so I wanted to make sure half way there she wouldn't start screaming for food. I was really hoping for good news today. The breathing treatments are the last part of Maddie's recovery. She still gets one treatment a day. We had an x-ray done Tuesday so the doctor could see if there was a change.
As the doctor talked my heart sank. In six months, there was no additional recovery to Maddie's diaphragm paralysis, in a month she has gained no weight and she could be on the breathing treatments for years. After I stopped sulking I started thinking like a responsible parent and asking questions. So yes all of these things are not good news but here is a little bit more information.
Her diaphragm could still recover over time...if it doesn't she could still have a pretty normal life the way it is. She would be better off if it recovered more. She could change her breathing treatments to an inhaler. It would be more convenient for us to change to an inhaler. I decided I would wait til she was older before we made that decision. There is also a slim chance we would take her off the treatments altogether to see if she could handle it. My thinking was maybe after cold and flu season.
Has not gained even an ounce. That was definitely not what I was looking for today but she has not lost any weight. In the last two weeks Maddie has gone to ALL table food and all drinks out of a sippy cup. No more bottles. She also is sleeping on a cot at daycare. State law requires all children a year and older to sleep on a cot. For those of you who have been around Maddie she doesn't walk ........SHE RUNS everywhere. She is afraid she will miss something when Jack and Katie are around and she hates not being in the same room with me. So she is eating just not enough to gain weight only enough to maintain her weight.
This is okay for now. In about two weeks I am hoping she will show signs of increased eating and slowly the weight will stick around. She eats well at daycare and most days pretty good at home. I just need to sit down and develop a high calorie diet for her she will like. I still meet with the nutritionist once a month and she and I will be speaking soon.
When the doctor said it might be years before she has another chest x-ray, I wanted to cry. It means my child is not getting completely well and may not ever get completely well. Yes she could still have a normal life but she is not completely well. I just felt defeated. I had so much hope going into this appointment today and I left totally deflated and angry. To see Maddie you would have not idea the journey we have walked, some days crawled and other days sat motionless. It is just so frustrating to hear she has no change.
The drive to the other children's hospital today, there is no direct highway route. We travel a two lane back road through the country. I actually love this drive and is usually pretty peaceful in the morning. On the way home, my mind was racing and I was angry. I had become so comfortable with seeing her and feeling like normal in a way I feel like I have let her down. So over the next few days I will create a new game plan and become very defensive about her again and the people she is around. It is the only way I can protect her and help her. I hate being knocked down we didn't deserve it.
Hoping for better days.....................TTFN
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