24 weeks...

BLPL101 · December 2014

We found out the worst news of our life on Nov 11 at our anatomy scan. She has a very rare disorder (1 in 200,000-400,000) called OEIS. She has severe scoliosis (spine is basically bent in half), bladder and bowels appear to be connected, heart is enlarged or chest is small, and the intestines are outside in a sack. She isn't urinating and they don't know why so I have no amniotic fluid. We are naming her Elizabeth Rose. I have a 2 year old named Caroline. The Dr. believes I will go full term and she will live either a few minutes or a few hours. I'm due April 5. I am trying to enjoy each day I have with her, but I feel like I'm getting sadder with each passing day. I am dreading giving birth to her knowing I will lose her. This is such a nightmare.

BLPL101 · December 2014

I feel like such a loser. How can this possibly happen to me? I am such a stickler for following all the rules of what you should and shouldn't do and this happens to me. I see my friends have healthy babies and they aren't as careful as me. I don't understand. I was absolutely miserable with morning sickness for months and I refused to take any meds because I wanted to make sure this baby was healthy. I'm just really angry.

CherryPicked · December 2014

I'm so sorry to hear this news about your precious daughter Elizabeth Rose. I too got devastating news at my daughter's ultrasound after doing all the right things, and you're right, it's just not fair. One thing that helped me through the sadness was to make all the memories that I could during my pregnancy, since it could have been the only time I had with her. Something that I found later on that I wished I had found during my pregnancy was the All That Love Can Do Facebook group for carry-to-term moms. Please let us know if there is anything you need for support on this journey.

BLPL101 · December 2014

Thank you! I will check out that group.

dadalou · December 2014

I'm so sorry. You also might want to check out the book I Will Carry You by Angie Smith. She also has a blog https://angiesmithonline.com/audreys-story/about-audrey/

4534linsmea · December 2014

My daughter was born in 2013 with OEIS and I was told at every appointment (weekly) that she wouldn't make it and here we are 5 surgeries later with a beautiful girl....I know every cloacal exstrophy case is different but our stories sound very similar.

Morena Mama · December 2014

Big hugs and lots of prayers to you. I'm so sorry you have to go through this.

msunshine123 · December 2014

I am so sorry for the news you received about your daughter Elizabeth Rose - such a beautiful name. You and your family will be in my thoughts and prayers. So many hugs to you with all that you are experiencing.

lexusolsen · December 2014

I'm so sorry for your sad news. If I had known in advance that we would lose Ben I would have made sure we packed things that we wanted to have with us- things from home people had bought for him (blankets, clothes, stuffed animals).

stefuge · December 2014

I am so sorry for the devastating news you received about Elizabeth Rose. My experience with the loss of our son was very different, but I would encourage you to enjoy your time with your daughter as much as possible, make memories, take photos, and treasure the time you do have with her, however long or short that may be. ((Hugs))

MCH77 · December 2014

I'm so sorry to hear about Elizabeth Rose. ((Hugs))

I hope you find this to be a safe place as you work through this. I'll be thinking of all of you.

Littleowl913 · December 2014

I'm sorry you received such devastating news concerning your Elizabeth Rose. Her name is beautiful. Thoughts and prayers for you and your family.

shandorfml2 · December 2014

I so sorry about the devastating news

ikrystal · December 2014

dadalou said:

I'm so sorry. You also might want to check out the book I Will Carry You by Angie Smith. She also has a blog https://angiesmithonline.com/audreys-story/about-audrey/

**ticker warning**

I read this book as well, and it is a great resource. I am so sorry for what is happening to you, your family, and your baby. I can't imagine having to anticpate what is going to happen. You will be in my thoughts and prayers.