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Im surprised they are back so soon. They only tested for the one disease I tested positive for.
This is what the Genetic Counselor wrote today:
"Good news! The results from your husband's counsyl test are back and they are negative. I attached a copy to this email. This means the chance for the two of you to have a baby with Rhizomelic Chondropdysplasia Punctata Type 1 is expected to be less than 1 in 2,120."
This is less than .5%
The risk of having a baby with CHARGE Syndrome is 0.00008 (some would say almost nonexistent).
These results don't mean much to me. I'm not sure what I was expecting (I think I'm past expectations now). I don't think I'll ever be satisfied with a result.
Three months ago today I gave birth to A. I'm in a different place now. I usually don't cry during the week, I am "OK" when being around babies, and I have seen as many pregnant women as humanly possible in these 3 months. All they are is a reminder of what I'm not, but I do not envy them anymore.
I don't wish to be pregnant. Being pregnant right now is my biggest fear. I don't look forward to a missing period or the adrenaline rush of waiting for the blood test results.
I'm OK now. I don't ever want to be where I was 3 months ago. I don't want to know more heartache than what I have known. I do get sad every now and then, but am not hard on myself for it. I understand and accept this as a normal part of my grieving.
I took my last pill from this cycle's pack on December 24th. I stopped it not because I was hoping or expecting these results to be what they are, but because I have not managed to lose any weight and my acne is worse than ever. I am exercising more than I have ever had in my entire life, and have been following a diet plan for two and a half months. I was also bleeding twice a month, which is a real pain in the ass.
I will be seeing an endocrinologist next week, though I'm pretty sure that the mini-pill has made it impossible for me to lose weight. This is the first time I'm on it. The doctors at the BWH won't prescribe the regular pill since I have migraines with aura.
I would say I'd like to just "go with it" and if I happen to get pregnant I'll take it from there, but it's much more complicated than that. Having all these results back only mean that my two losses are not related. This means that my first loss was due to low progesterone levels. I probably needed progesterone as soon as I found out I was pregnant, not two weeks later when I got home and my doctor ordered the tests.
My range of fears is wider now. I fear losing a pregnancy due to progesterone levels, I fear taking Clomid to ovulate on time, I fear the 1-2% risk of a baby with CHARGE, I fear the less than 1% of a baby with Rhizomelic Chondropdysplasia Punctata Type 1. I fear losing a baby due to NTD. I fear chromosomal defects. All pregnancy means is fear right now. I know nothing will help me completely overcome my fears.
I do want a baby more than anything in the world.
I'm so glad to read that your husband's tests came back negative. I know it isn't much of a comfort right now after your losses, but hopefully if you do ever feel ready to try again it will help put you at ease (although you may never beat 100% at ease.)
ReplyDeleteI think it is perfectly normal to have fears, and I have many fears too. You will know if and when you are ready to try again. It may be tomorrow, or next month, or next year. And that's okay. And when you are ready again you will know to advocate for yourself and what you need.
As for weight gain and acne, I have been unable to lose my weight and I have had gross acne too! You have been through so much. Be kind to yourself. You are still beautiful inside and out even with a pimple or two.