intro and preparing for loss

babystinkbreath

My name is Lauren and I usually hang out over on Infertility Vets and PAIF.  I am currently pregnant with my first child but had my world shattered last week when we found out that our little girl has a devastating defect in her brain.  There is nothing we can do about this expect monitor it and watch it get worse.  

Babies with this condition sometime survive to full term but they have so many neurologic problems when they are born that they either die of complications shortly after birth or soon after.  In rare cases they can survive up to a year or two, but they require full care and they never progress in any sort of development.  The basic bodily functions sometimes work, but they can be blind, have severe mental retardation, CP, constant seizures, and not be able to feed, etc.  Just thinking about my child having to live like that kills me a little inside.  

I know I technically haven't lost her yet, but we know we have to prepare ourselves to say goodbye.  All of the options we are faced with right now are not pleasant and I'm not sure how I'm going to live with myself picking either one.  

I'm just so lost and heartbroken right now.  I know I will get through this someday but I just can't possibly see how I will get to that point.  I hope I can join you ladies as DH and I go through this as I feel like such an outcast on the other boards right now (as I'm not trying to get pregnant or enjoying my pregnancy at this point).  

After everything we went through with IF to get to this point, I'm just so angry, upset, and sad with and at the world.  

Thanks for reading and I'm just so sad that any of us has to be here.

Cercamom2011

I'm so sorry to hear this.  My T&Ps are with you during this difficult time.

Jackie2200

BSB,

 I am devastated for you.  When you posted on PAIF, I didn't realize that your little baby was in such a terrible situation.  I thought you had some alternatives and treatment plans for after birth.  I am so, so sorry that is not the case.  I will be praying for you as you go through this awful time. 

Jackie

mrssoprano

I am so very sorry. My thoughts are with you and your husband. I hope you can find a home here on this board.

DesiraeSunshine

Im sorry, this is just heartbreaking.

babystinkbreath

Jackie2200:

BSB,

 I am devastated for you.  When you posted on PAIF, I didn't realize that your little baby was in such a terrible situation.  I thought you had some alternatives and treatment plans for after birth.  I am so, so sorry that is not the case.  I will be praying for you as you go through this awful time. 

Jackie

Thank you ladies.  

Jackie, if the condition stayed on the low side we might have some after birth surgical options.  We are already on the high moderate side and past the point the babies have a good prognosis after birth.  We met with a neurologist yesterday and they spelled things out for us a little more clearly. 

mdluv21

I have been following your story and i am so heartbroken for you and I am sorry you are faced with such terrible decisions.

I hope this will be a good home for you to find support.  You will be in my thoughts during this hard time.

huge ((hugs))

Auki13

I am so sorry you have to go through this.  I had my baby Annabelle at 35 weeks on July 19th and she passed away July 20th due to anencephaly.  We found out at our routine 20 week ultrasound that she was developing with little or no brain and that her condition was terminal.  So I totally understand where you are and my heart is breaking for you.  I have a blog that you could read if you are interested in our journey, feel free to PM me if you would like the address.
Just a bit of my story... I have an extremely supportive nurse midwife and she supported us in our choice to carry Annabelle for as long as possible, and I will be forever grateful for that.  Even though it was heartwrenching knowing she was going to die, I was able to prepare for the loss and cherish every moment I did have with her.  I am so glad that my older two children were able to meet their sister and that we took tons of pictures of her to treasure.  Whatever decisions you make, just remember to take your time making them.  I know many women who were rushed with decisions and beat themselves up over them every day.  I don't know if any decision is right or wrong in these cases, I only know that you can do what is best for your specific situation.  Just be gentle with yourself and be confident that you are a mommy who only provided the best for your little one.  (((HUGS))). And please feel free to write me any time.  My heart goes out to you and your family.

Carolee

I am so incredibly sorry - I am angry at the world for you! Huge (((HUGS))).

lovemymaddy

I'm so, so sorry. We will all be thinking about you in the days to come. I'm so sorry you're having to go through this.  ((hugs))

roxyttandme

I am SO sorry you are going through this. I too was faced with some terrible medical prognosis during my second trimester. Saying good bye, and in my case, terminating and saying goodbye, was the hardest thing I ever had to do. How ever this ends up, please know the ladies on this board are amazing and will support and carry you through each day. I don't know what I would have done without these ladies. If you ever need to talk, I am here. 

 

illinigal

My heart broke for you when I read your story last week. I'm so pissed for you. Continued T&P heading your way.

krysiahamaty

I am so, so sorry.

leneae10

SO many ((HUGS)).

starrkitten89

I am so very sorry.So many (((hugs)))

pb&fluff

I'm so sorry for your loss.  A little over 2 weeks ago, I was in your shoes.  A month ago today (at 19w1d), we found out that our baby had several severe heart defects and a week later, a pediatric cardiologist told us her prognosis and surgical options.  We decided to end our pregnancy on the 21st, but didn't have our D&E until the 29th.  We were in this horrible limbo where I was pregnant...but there was nothing to be excited about.  We were losing our baby.  It was horrible.

The only positive I could come up with is that we did a lot of our grieving before we lost her.  I felt like I had already disconnected myself from her and I was just waiting for her to become an angel. 

I hated that place and my heart breaks for you.  (((hugs))) 

MrsRiceARoni

I am so very sorry, I couldn't imagine being in your situation.

kdp2008

I am so sorry that you have to go through this.  {{{hugs}}}

Mjmksb04

I am so sorry for your loss.

Mrs Nice

This is so heartbreaking. I will be thinking of you and your family in the days to come. I hope you can find the support you need on this board.

magdalina.h

I am so sorry that you received this diagnosis. I will pray for peace for you and your family

butterfly843

I'm so sorry you are going through this. I will keep you in my thoughts and prayers.

coolteacher79

I am so sorry for your baby's prognosis. I, too, received a poor/fatal prenatal diagnosis for my son. It is heartbreaking. We carried my son, Isaac, to term, and he lived for 16 minutes. I am so grateful to have had that time. If I could offer you any encouragement, it would be this: I would definitely encourage you to continue your pregnancy. We really treasured the time I was pregnant with Isaac, made memories while he was still in the womb, and I wouldn't trade those 16 minutes for anything... except to have him here. You are welcome to email me any time at coolteacher79 at yahoo.com if you want to talk more. I would love to support you in any way that I can.