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
8 comments:
Wow honey, I had no idea. My prayers are always with you and your little Maggie. I love you terribly and hope everything turns out for the best.
Hey Kelli and Maggie, just wanted to send my best wishes to you both. I can only imagine the magnitude of emotions you're braving right now. I believe Maggie has a big role to play on this little planet. She's not even born yet, and it's clear she has a good mom. Stay strong.
I am praying for you and your sweet little girl. I saw your blog on BBC and was sad to find out the news, but amazed to see your strength. Not to give you false hope (because like you said this is something only God can control) but I am a pediatric ICU nurse and I got to take care of several babies with all of the these cardiac conditions. Without a doubt they were little miracle babies and they had such a strength and determination, like I had never seen before. I admire your decision to hold onto her life rather than seek to end the pregnancy now. I will pray you get to hold your little maggie in your arms and enjoy every moment you get.
Kelli, I must say you are a much stronger person than I could ever be. Your strength and hope is amazing, and I only wish the best for you, and your little Maggie. I hope that God will allow you the chance to get you meet your little girl, and even heal her. God always has a plan for everyone, but we can only pray that his plan is to let Maggie be born into the world. My heart goes out to you, and I will pray for you and your baby each and everyday!
Hey, I saw the link on Facebook, and I just wanted to say that my dad had some heart stuff go on this past summer (thoracic aortic aneurysm, followed by every possible complication and then later an aortic valve replacement) and at one point they said his chances of even surviving were 5%, and 7 months later he's completely fine. So don't worry about the numbers. Good Luck.
-maddy sanders
You are such an amazingly strong woman. If Magdalyn has strength like her mama, she WILL make it.
We are praying for you and also adding you to the prayer list at our Church. I hope you don't mind.
We will be checking for updates daily and praying like crazy.
Praying for you and your sweet baby.
Hi Kelli - you don't know me but I just came across your story and wanted to share our story with you. My daughter was carrying our 1st grandchild and at 22 wks, was told the baby had severe heart defects and had a very very small chance of surviving the pregnancy. At one time, his heart was failing and he developed hydrops. To make a long story short .... he was delivered 3 weeks early at Children's Hospital in Philadelphia. He was pink and crying!! Had OHS at 2 weeks old and is now 2 months old and doing well at home. Don't ever give up .... "where there is great love there is hope!" If my daughter had followed the suggestions of the drs. and terminated the pregnancy, we would not have our "sweet baby Kaiden" home with us today! We believe in miracles .... and we wish you and your baby the best and will pray for your family as you continue on your journey.
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