Saturday, October 24, 2009

The First News of Her Diagnosis

Our baby girl, Gracie, is due March 13 or 15, 2009 depending on which doctor you ask. Gracie has trisomy 18, also known as Edwards Sydrome (named after the doctor who discovered it) or T18. I will post updates on how we're doing and whenever we find out anything new about Gracie here on this blog. We are thankful for all the support and prayers. (Level II ultrasound was Oct. 21, FISH confirmation Oct. 23, Amnio confirmation Oct. 29)

T-18 is a chromosomal abnormality where there is an extra chromosome present in every cell of the body. This is an example of where "the more the merrier" is not true. This extra chromosome means that every cell has extra information encoded into it. The extra information causes confusion in the way that the cells are formed and results in the potential malformation of all of the body systems. Sadly, this condition is considered "not compatible with life". There is a wide range of how this condition will play out (what the doctor's will refer to as your child's phenotype). Current studies show that while 1:1500 children will be diagnosed prenatally with trisomy 18, only half that number (or 1:3000) will be born alive at full term. Of those who survive to birth, only half will make it to two months of age, and only 10% will survive to their first birthday. Children who live can be an important part of their family and community, but are profoundly developmentally delayed. (this explanation was pulled from this blog: Brianna Gives Hope

The level II head to toe ultra sound and echocardiogram that was done on Wednesday, Oct. 21 indicated these problems:
1. Ventricular Septic Defect or VSD-septum is completely missing which makes the oxygenated blood and unoxygenated blood mix. It makes it a very ineffecient system and places more work load on the lungs and heart. Sometimes these heal on there own and sometimes they are repaired with surgery.2. Atrial Septal Defect or ASD- to understand this one, go here:
3. Strawberry Shaped Head- I don't know the technical name for this, but the perinatologist said that this could indicate brain involvement.4. Pulmonary Artery no symetry5. Calcification in the bowel6. Fists Closed
I felt like God was trying to tell me all night long that he "knit Gracie in my womb" and that he did not make any mistake about it. In fact she is "wonderfully made" by God. I finally feel like I have some glimses of "the peace that passeth understanding" Phil 4:7 Even though I still cry all the time I have some glimses of his peace.
The world may see Gracie as "not normal" but that's not the way I see her. I feel so bonded with her already, I feel God is showing me that I can love her with his love. I can fight for her with his strength. I can protect her until she is with Jesus in heaven. I don't know if he will do a miracle here or if he already has and we just have limited understanding of what the purpose is for all this.
But of coarse I will pray for a miracle that God will heal her completely of this. Phil 4:6 says, "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God." So I will ask for what I want here and if you're a praying type will you pray with me for a miracle and that our family will be free of anxiety and fear.
I know that I have more love for Gavin. Gracie is teaching me how precious life is. I have enjoyed Gavin more than ever and feel more love for him, gentleness and patience. I believe this can only come from God. I also have more admiration and love for Laiman than ever. I admire his strength of character and desire to do what's right for Gracie.These are some blogs that have been very comforting to me:

Brianna Gives Hope
Ninetynine Balloons
I See Love
This is the best one I have been able to find so far with the technical medical info:emedicine

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