Wednesday, December 31, 2014
2014 - a year of lost battles
Tuesday, December 30, 2014
Counsyl Test Results
Friday, December 26, 2014
Wednesday, December 24, 2014
the one thing on my mind this christmas
Monday, December 22, 2014
CHARGE results are back
Neither of us were found to carry the same mutation. This means that most likely it was a new mutation that happened sporadically in the last pregnancy. Therefore, the hospital does not expect the same complications again.
However, they would say the risk for CHARGE again is about 1-2%. The reason for this is sometimes egg cells or sperm cells carry mutations that are not present in the blood cells. This is called germline mosaicism. They would recommend genetic counseling in a future pregnancy to discuss our options. They absolutely recommend ultrasound monitoring and we could consider amniocentesis or CVS again if we wanted to do additional testing for the 1-2% chance.
Now we are just waiting on the genetic screening on my husband. The lab received the sample today, so it'll be 3-4 weeks before we have these results.
Being negative for CHARGE should be a relief. It isn't. It's just another proof of my "bad luck". It's a difficult position. Today I was down to my knees and thankful we're both negative for CHARGE. But some days I wish something comes back positive for either of us so we can fix it... Getting pregnant only to find out that my bad luck continues is something I wouldn't want to go through again.
Sunday, December 21, 2014
Thursday, December 11, 2014
expanded carrier screening
Babies who have Rhizomelic Chondrodysplasia Punctata Type 1 are small and have bone problems, intellectual disability, and eye problems. Most will pass away in childhood.
Tuesday, December 9, 2014
Monday, December 8, 2014
Friday, December 5, 2014
christmas photoshoot
Tuesday, December 2, 2014
a shooting star
Sunday, November 30, 2014
two months without you
All I have today are pictures. Pictures I constantly find myself reviewing and zooming into, trying to memorize everything I have left of you.
More often than not, I have to remind myself that men do not grieve like women do. I feel so lonely... Not even my husband understands. It's not like I talk about my feelings much, but when I do, he just doesn't get it. We have such different outlooks on the subject.
This week has been the hardest so far. I'd wake up to workout, and then go back to bed for most of the day or stayed in PJs on the couch. I only made it to work once. Sleeping is the only thing I don't get tired of. I feel like I could do it forever. I haven't felt like doing much ever since I picked up the ashes. My shrink says I should take it slow and pamper myself.
Trying to get my life back on track, I started a 4 week meditation program on Wednesdays last week. I want to be better.
I've started running. I think if I train hard enough, I'll be able to run a half marathon next year... (funny thing about goals is the higher you reach the cooler they sound, I have yet to run a 5K without dying). I might enroll now that I'm motivated. Then I think... "What if I get pregnant? I will end up losing the money."
I hate that this year revolved around the sole thought of getting pregnant, being pregnant, or staying pregnant. I don't want to continue living around my desire to have a baby. I want to live fully, even if I don't get to have a living baby.
I ask myself... Will I be able to do so? Will I live fully with empty arms?
Friday, November 28, 2014
what my thanksgiving looked like-
Thursday, November 27, 2014
Tuesday, November 25, 2014
8 weeks of heartache.
Saturday, November 22, 2014
what hope looks like
Wednesday, November 19, 2014
Tuesday, November 18, 2014
Monday, November 17, 2014
the waiting game... part II
Sunday, November 16, 2014
here's to answers...
Friday, November 14, 2014
even if your faith is broken...
Sunday, November 9, 2014
sunday bloody sunday-
Thursday, November 6, 2014
Wednesday, November 5, 2014
Monday, November 3, 2014
the sun will rise...
I still get upset when I see babies and pregnant women, (and I usually walk the other way when I see one, especially one I know), and more often than not I'm mad at them and am mad at the universe for not giving me a living baby. I'm mad at people who drank and smoke and did everything I did not do and still got a healthy baby... I am jealous of never being able to have a care-free pregnancy. I suppose these thoughts are common among most of us standing in this place I have yet to name.
I know I am not infertile nor struggling with infertility. But what do you call what has happened/is happening to me? Is there a name for the situation in which I'm in? The one where you can't create viable babies despite your karyotypes being normal? I find myself wondering and searching for the correct words and answers.
I have been trying to keep my mind at ease. I must admit this is the hardest part for me. I find myself googling everything, comparing my baby to others, trying to figure out what was wrong with him and what led to that (even though the doctors repeatedly told me there was nothing I could have done to cause it, and showed me pictures of what a baby with this kind of syndrome looked like since conception). I believe this has a lot to do with me not having any answers. I have not seen a doctor ever since the induction and won't be seeing one until November 17th, where I will see an OB for the follow-up at the BWH, and will be seeing someone from Reproductive Medicine to hear what their input is on our case and how they think we should proceed. I have not even heard anything from the pathology tests yet. I really do hope to get more answers than: "it was just bad luck".
My first loss back in March was a missed m/c, and we did not run any tests as this was my first miscarriage and the doctors said "it was a one time thing that happens often". I ask myself almost every day why we did not do the tests. Why no one suggested we do them. Why my doctors weren't cautious enough to order these tests. I will never know if what caused the death of baby 1 were chromosomal abnormalities or genetic disorders.
So far, all I know is that our "products of conception" are damaged. 2/2. I hear the third time's the charm.
On a happier note, this past week my third niece was born. I managed to go to the hospital and stay there until she was born. She is beautiful, chubby, and perfect. As I saw her take deep breaths, I wondered if I will ever have the chance to have breathing, healthy children. Tears ran down my face as I realized I may never have that. Even though I've been told by doctors that I can, I have also been through enough to know that it's a matter of chance... And that there's a chance I won't have that. I hope my husband's family understands my distance and acknowledges how hard it was for me to be there.
We went away for the weekend to celebrate our anniversary. My brother, his boyfriend, and one of my best friends and her husband came along. On our way there, we spotted a rainbow. I'd like to believe this was our baby's way of saying he's OK, and that it's OK for us to have fun.