i feel like i can take a big deep breath. we got our final diagnosis today.
Sophia officially was diagnosed with Hypochondrogenesis Type 2 (also called Achondrogenesis)
while the diagnosis sucks.... aka. it is lethal. it is also something we know we cannot carry genetically on to more kids. it is a dominant gene, so it can only be carried if you have it, and obviously we do not have it as it is fatal. the fact that her throat and mouth were deformed does not fit into this diagnosis, but they said that they don't know alot about what babies with this disorder have going on in their mouths, as alot of them don't have autopsies done. alot of people don't choose to carry the pregnancy after the diagnosis. or people build up the extra amniotic fluid and then just allow labor to come early. so there isn't alot of full body research done on these sweet beautiful babies to know more about them.
what we do know is that they are adorable and short but sweet babies. her limbs may not be what people call normal but they are the most precious arms and legs that i have ever held. they had the cutest little rolls and the sweetest little fingers and toes. gosh i miss those. (i have been around alot of babies lately and didn't realize at the time how small her feet where but gosh they were. here is my example size- a little bigger than a 9V battery)
so the good news in this is that we don't have any higher chance to have this happen again more than anyone else. we can try again when ready and not have the fear of this looming over us. of course people that have gone through the loss of a child will all tell you, that this doesn't really take that fear away. we will be terrified and changed forever more with having children that something bad will happen as it has proven to us it can. but enough about that. i apologize for being a downer but as i said last week i am having a rough time right now. something i didn't expect this far out from her birth but what about grief is something you expect besides being sad?
while on the subject of grief. my new favorite grief book that i highly recommend if you know anyone grieving over anything-- Tear Soup. seriously one of the best books i have read on really describing grief in a way you can relate to- cooking soup. that- sometimes people become rushed and think soup in a can is better, but that it (grief) can't be cooked quickly. that it takes a big pot full of- "not fair, bad news, big disappointment, serious heart ache, profound loss, major tragedy and more than i can bear", that you need to wear an apron because it can get messy. that at first your tear soup is bitter, that you make a lot of your soup alone, that not every friend can handle your tear soup, but some can sit down to a whole bowl of it with you. that sometime your tear soup requires some comfort food in it, along with some happy memories. that you dread the day no more sympathy cards would come. that people get impatient with you while your tear soup cooks. that it is hard when you decide one day to eat something besides tear soup, but you still get it out every now and then to taste it. needless to say- this is some goooooood reading. it is made like a children's book with illustrations and is simply clever. buy it for someone you know grieving over anything or trying to understand someone grieving. you won't regret it.
while i am at it here are the other grieving books i have read/bought:
Letters To Darcy- Tracy Ramos
Ill Hold You In Heaven- Jack Hayford
Holding On To Hope- Nancy Guthrie
Grieving The Child I Never Knew- Kathe Wunnenberg (Journal)
When Hello Means Goodbye
Empty Cradle Broken Heart- Deborah L Davis
I Will Carry You- Angie Smith
Heaven is For Real- Todd Burpo
We were gonna have a baby but we had an angel instead (children's book)
Mommy please don't cry- There Are No Tears In Heaven- Linda Dymaz (children's book)
Someone came before you (children's book for our future children)
Pregnancy after a Loss- Carol Cirulli Lanham
Book of Hope- Nancy Guthrie
Prayers for Those Who Grieve- Jill Kelly
Yep I am a bit of a book nerd. AJ came home to me having went a little crazy on amazon.com after Sophia died. but hey! i read them. and i have re-read some. some are for our future kids- i saw them and couldn't pass them up when i was on my ordering spree. as i was trying to process how this fits in to our future life and how to hold on to your child's memory. any way. i apologize for the long rants in this. i have been meaning to write about grief books. if you want to know if i liked one or not you can send me a message. i'll tell you honestly.
well we are taking a weekend to go to a concert for AJ's first father's day. he is an amazing dad and gave Sophia so much love and affection. he has all ready been such a good dad so i can't wait to see what great years he has ahead of him... for now we are going to celebrate his goodness in Sophia's short life and his continued love for her. the hole he has in his heart that will always have her name on it.
hope all you daddy's have a good father's day. (including our wonderful father's)