I read that this week Maggie can hear; as a result of I have been talking to her non-stop. Tonight I thought I would put on some classical music; not solely because I'm cliche...I actually happen to love classical music. Apparently Maggie does too! I had been listening for about 10 minutes when this gorgeous version of Ave Maria came on -- Maggie LOVES it. She started kicking around and squirming. I thought that surely this was a fluke. The song ended and so did the kicking. Several songs later I decided to listen to Ave Maria again...and the kicking started almost immediately. Even the smallest joys are still joys. For this I am so very thankful.
Sunday, December 7, 2008
Saturday, December 6, 2008
What Dr. Readinger had to say.
First I would like to say thank you thank THANK YOU for all your thoughts and prayers in the last few days since we first heard that Maggie was in trouble. I am so grateful to all of you.
I saw Dr Readinger yesterday for our first fetal echocardiogram. An echocardiogram is an ultrasound of the heart. Usually this gives very good insight to what is going on inside the heart. However there was an added degree of difficulty since they were having to look first through my body into the uterus and then locate her and then her heart. Maggie was feeling feisty yesterday and it took quite a long time to get the images they were after and then didn't get quite the in depth look that they were hoping for as she kept squirming around and moving all over the place. I suppose that goes to show that she's just like her momma and she's not going to do anything that she doesn't feel like doing! I'll have to have a talk with her and ask her to be a bit more cooperative next time.
The results were not good. Dr Readinger is the kind of doctor that gives you the worst of it so that you're not surprised by anything. I am thankful for this, as I would be devastated to have false hope and be crushed when reality comes into play.
***Disclaimer: I am not a doctor. I am a frightened mother. This means that my facts may not be 100 percent correct, I am simply trying to relay information as I have understood it. ***
The Diagnosis:
The very first thing he told us is that statistically speaking there is a 90 percent chance that Maggie will not make it to birth. She has many problems with her heart that have lead to this number.
First, Maggie suffers from Dextrocardia. This means that her heart is on the right side of her chest instead of the left. More specifically she has Dextrocardia with Situs Inversus. This means that not only is it on the right side but it is also backwards. Situs inversus is present in 0.01% of the U.S. population.
Second, her left ventricle is so small and underdeveloped that they are considering her as a Single Ventricle case. Usually the left ventricle is in charge of getting oxygenated blood to the lungs. The right gets oxygenated blood to the rest of the body. Since she only has "one", this ventricle must do both.
Next, she suffers from a severe heart block which will require a pacemaker at birth.
She is also has a ventricular septal defect. This means that the wall that should separate her left and right ventricle is missing. This is not good, however, if it were there then there would be no way that her lungs would get anywhere NEAR enough oxygenated blood.
There is severe narrowing at the pulmonary artery. This means that instead of the artery being a straw it is like trying to pump blood though a coffee stirrer. Not very effective in comparison.
She appears to also be missing a valve; though to tell you the truth I don't remember which one. By this point everything was getting blurry and I was trying to comprehend what I could.
Under normal circumstances the atrium and the ventricles work on opposite beats and work together. From what I understood Maggie's atrium are pumping at about 120 beats per minute and her single ventricle is pumping somewhere between 60-90 beats per minute. Due to being out of sync, her single ventricle is having to work harder because for every beat it must pump so much more blood in order to keep up with the atrium. This has caused thickening of the ventricle walls. This is a problem because as Dr Readinger says "she's only half-way home" and we are concerned that it may give out before birth.
There is already fluid beginning to accumulate around her heart and this will continue to get worse. I'm not sure what all that means, other than, it's really bad. This can cause something called Hydrops, which I'm sure I'll be talking about in upcoming entries.
He said lots of other things but again, honestly by the time he got to what I considered to be "minor details" I was lost in a fog.
We spoke briefly about surgery options but not in any great detail. Under normal circumstances a transplant would be the best option but this has been complicated by the following:
* She has to get here first. Because of the great number of surgeries required, they want her to be as big and strong before we bring her into this world. They said they would like to wait until at least 32 weeks before delivery. I am currently 21 weeks and 3 days.
* A compatible heart must be present.
* Because her heart is on the wrong side there may be a problem finding "room" for the new heart.
* Because her heart is also backwards they would have to either put the new one in backwards of find a way to get all the arteries and whatnot fit to where they should be.
The Plan:
We wait. Seriously. That's "The Plan".
I will be scheduled to see Dr. Robinson again mostly likely this coming week. I will see Dr. Readinger again on January 5th.
My reaction to all of this:
I am hopeful. From the moment I found out that I was having a child I have found myself to be surprisingly more religious than I was the day before finding out. God has put me on this path and I have never questioned why. He has a plan for me and He has a plan for her. If it is His will to heal her heart and bring her into this world then it will be.
Ten percent is not a lot....but it is more than zero. I usually consider myself to be a fairly "lucky" person. I can only "hope" that Magdalyn has "inherited" this from me.
I am trying to stay strong, calm and positive. But honestly, I'm a mess. I'm terrified. Keeping myself pulled together has become a battle that I am fighting every single minute of the day.
I wish time would hurry. I wish the next 11 weeks would hurry the heck up.
Some people would choose to end this journey. In fact Dr. Readinger was obligated to inform me that in the state of Texas termination is still an option. For me it certainly is not; as it never was to begin with. To me, if I am able to have a single moment with my daughter before her passing then it is all worth it. If not, then I must trust in God and accept that is not for me to try to control.
My daydreams are filled of holding her close and looking into her eyes...but I know that this may not happen. My daughter may be an angel who flies and never learns to walk.
Your continued prayers and thoughts would be appreciated more than words can say.
I'll update again when we know more.
-Kelli
I saw Dr Readinger yesterday for our first fetal echocardiogram. An echocardiogram is an ultrasound of the heart. Usually this gives very good insight to what is going on inside the heart. However there was an added degree of difficulty since they were having to look first through my body into the uterus and then locate her and then her heart. Maggie was feeling feisty yesterday and it took quite a long time to get the images they were after and then didn't get quite the in depth look that they were hoping for as she kept squirming around and moving all over the place. I suppose that goes to show that she's just like her momma and she's not going to do anything that she doesn't feel like doing! I'll have to have a talk with her and ask her to be a bit more cooperative next time.
The results were not good. Dr Readinger is the kind of doctor that gives you the worst of it so that you're not surprised by anything. I am thankful for this, as I would be devastated to have false hope and be crushed when reality comes into play.
***Disclaimer: I am not a doctor. I am a frightened mother. This means that my facts may not be 100 percent correct, I am simply trying to relay information as I have understood it. ***
The Diagnosis:
The very first thing he told us is that statistically speaking there is a 90 percent chance that Maggie will not make it to birth. She has many problems with her heart that have lead to this number.
First, Maggie suffers from Dextrocardia. This means that her heart is on the right side of her chest instead of the left. More specifically she has Dextrocardia with Situs Inversus. This means that not only is it on the right side but it is also backwards. Situs inversus is present in 0.01% of the U.S. population.
Second, her left ventricle is so small and underdeveloped that they are considering her as a Single Ventricle case. Usually the left ventricle is in charge of getting oxygenated blood to the lungs. The right gets oxygenated blood to the rest of the body. Since she only has "one", this ventricle must do both.
Next, she suffers from a severe heart block which will require a pacemaker at birth.
She is also has a ventricular septal defect. This means that the wall that should separate her left and right ventricle is missing. This is not good, however, if it were there then there would be no way that her lungs would get anywhere NEAR enough oxygenated blood.
There is severe narrowing at the pulmonary artery. This means that instead of the artery being a straw it is like trying to pump blood though a coffee stirrer. Not very effective in comparison.
She appears to also be missing a valve; though to tell you the truth I don't remember which one. By this point everything was getting blurry and I was trying to comprehend what I could.
Under normal circumstances the atrium and the ventricles work on opposite beats and work together. From what I understood Maggie's atrium are pumping at about 120 beats per minute and her single ventricle is pumping somewhere between 60-90 beats per minute. Due to being out of sync, her single ventricle is having to work harder because for every beat it must pump so much more blood in order to keep up with the atrium. This has caused thickening of the ventricle walls. This is a problem because as Dr Readinger says "she's only half-way home" and we are concerned that it may give out before birth.
There is already fluid beginning to accumulate around her heart and this will continue to get worse. I'm not sure what all that means, other than, it's really bad. This can cause something called Hydrops, which I'm sure I'll be talking about in upcoming entries.
He said lots of other things but again, honestly by the time he got to what I considered to be "minor details" I was lost in a fog.
We spoke briefly about surgery options but not in any great detail. Under normal circumstances a transplant would be the best option but this has been complicated by the following:
* She has to get here first. Because of the great number of surgeries required, they want her to be as big and strong before we bring her into this world. They said they would like to wait until at least 32 weeks before delivery. I am currently 21 weeks and 3 days.
* A compatible heart must be present.
* Because her heart is on the wrong side there may be a problem finding "room" for the new heart.
* Because her heart is also backwards they would have to either put the new one in backwards of find a way to get all the arteries and whatnot fit to where they should be.
The Plan:
We wait. Seriously. That's "The Plan".
I will be scheduled to see Dr. Robinson again mostly likely this coming week. I will see Dr. Readinger again on January 5th.
My reaction to all of this:
I am hopeful. From the moment I found out that I was having a child I have found myself to be surprisingly more religious than I was the day before finding out. God has put me on this path and I have never questioned why. He has a plan for me and He has a plan for her. If it is His will to heal her heart and bring her into this world then it will be.
Ten percent is not a lot....but it is more than zero. I usually consider myself to be a fairly "lucky" person. I can only "hope" that Magdalyn has "inherited" this from me.
I am trying to stay strong, calm and positive. But honestly, I'm a mess. I'm terrified. Keeping myself pulled together has become a battle that I am fighting every single minute of the day.
I wish time would hurry. I wish the next 11 weeks would hurry the heck up.
Some people would choose to end this journey. In fact Dr. Readinger was obligated to inform me that in the state of Texas termination is still an option. For me it certainly is not; as it never was to begin with. To me, if I am able to have a single moment with my daughter before her passing then it is all worth it. If not, then I must trust in God and accept that is not for me to try to control.
My daydreams are filled of holding her close and looking into her eyes...but I know that this may not happen. My daughter may be an angel who flies and never learns to walk.
Your continued prayers and thoughts would be appreciated more than words can say.
I'll update again when we know more.
-Kelli
Foundation
As this is the first entry I figure I should give some background before getting into it all...
My name is Kelli and I am 23 years old. My sweet Magdalyn Grace is my first child.
At my 20 week appointment my doctor saw some unsettling sights with my ultrasound and sent me to a perinatologist (read: high-risk doctor) for further diagnostic testing and further insight. He then sent me to a pediatric cardiac specialist for a diagnosis.
Cast of Characters:
Dr. Howser -- my normal OB
Dr. Robinson -- perinatologist
Dr Readinger -- pediatric cardiac specialist
My name is Kelli and I am 23 years old. My sweet Magdalyn Grace is my first child.
At my 20 week appointment my doctor saw some unsettling sights with my ultrasound and sent me to a perinatologist (read: high-risk doctor) for further diagnostic testing and further insight. He then sent me to a pediatric cardiac specialist for a diagnosis.
Cast of Characters:
Dr. Howser -- my normal OB
Dr. Robinson -- perinatologist
Dr Readinger -- pediatric cardiac specialist
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