Hydrops at 19 weeks. We are so lost.. :o(

Danni_Girl

I know I haven't been on the site recently, but I have no one else who might know what we are going through...

We did the quad screening a few weeks ago only to find out that there was a 1/8 chance the baby could have Downs. This we were not worried about, but decided to do the level 2 ultrasound to see if that was truly the case.

Turns out the baby has hydrops and is very swollen and also has fluid in the stomach area. We are back at the hospital after a long night and will be having and amnio to see if/what the underlining cause is.

The Dr pretty much told us that she expects us the lose the baby to the hydrops because the baby doesn't seem to have a lot of room in the placenta because they are so swollen.

Everything I have read about hydrops and those who have had to deal with it have a very grave outcome. I have a feeling we will lose the baby. Although I really hope the Dr's are wrong and it's something treatable and the baby will be okay.

I just don't know what to do with myself. J is devistated and I'm just trying to hold myself together.

Prayers or whatever you could send would be greatly appreciated.

ball.and.chain

Oh no.  I am so, so sorry.  I will hope for the best but I understand the gravity of the situation and will be thinking of you and J.  Sadly we have at least one regular here who has had a similar experience.  Please know you are not alone and feel free to lean on us as much as you can.  We are here to listen and will be sending good thoughts!

Twochickshavinachick

So sorry to hear you are going through this. Our thoughts are with you.

JGY

I'm so sorry to hear this.  I will be sending all good thoughts and hope your way!

 

ATXmommas

I am so very sorry for you. I don't know a lot about this condition, and although the doctor is not hopeful, I hope that this is something treatable and not fatal.

At around 12 weeks into my first pregnancy, we found out that our son had Trisomy 18, which, in our doctor's words, is a condition that is "incompatible with life." It was a heartbreaking experience and the wait between ultrasounds and diagnostic procedures was agonizing.

My heart is with you. I'm so sorry.

StacyLH24

I'm so sorry. I've been thinking about you lately and wondering how things were going. I hope that you get an answer soon and that it is something that can be treated.

KH826

I am so incredibly sorry to hear this. I will be keeping you all in my thoughts.

Karlamo

That's heartbreaking to hear. I'm sorry.

Amber&Reva

I am so sorry that you and J are going through this.  I am sending all the positive energy I have that the doctors have misdiagnosed and that this pregnancy can continue.  I am glad you have each other in this hard time.  Your family will be in my T&P.

bfonz619

I can't even begin to imagine what you are going through, but wanted to say that my heart goes out to you and your family.  I really hope you end up seeing a better outcome and wish you all the best. 

redrockmama

I am so sorry. I will sending positive thoughts your way and will be thinking of you and your family. 

Danni_Girl

Thank you all for your kind words and support.

The amnio went okay. Rather uncomfortable, but I've been through and will go through worse.....

News from the Dr was no better. She advised that the baby is very, very sick. At this point there is nothing that can be done for the little one.

She asked if we wanted to terminate the pregnancy as that is an option, and we said no. The baby has a perfect, beautiful heart right now and I will carry this baby till the day it stops beating.

At this point the amnio is more to find out if the baby had underlining issues or if this is one of those one in a million things that can happen.

We are both in shock right now. It's going to take a bit to set in, but this is out new reality. I don't like it, but not much we can do at this point.

Amber&Reva

I am so sorry to hear this.  You become a parent the second you conceive, you and J will make the right decision for your child.

AandStilltrying

I'm so very very sorry. You and your family are in my prayers.

StacyLH24

I'm so sorry to hear this. My thoughts are with you and J.

Jazibel

So so sorry to hear this news. You and J and your LO will be in my thoughts and prayers. 

ATXmommas

I'm so, so sorry. You will be in my thoughts.

firstcomeslove2013

This is heartbreaking. You all are in my thoughts. Take care of each other.

2MamazInSeattle

Awful. I'm so, so sorry. I know there is a board on baby.center for women who choose not to terminate and carry until the baby passes naturally. It may be a good source of support. Thinking of you.

Officerofthelaw

So sad. Giving you all my thoughts and prayers.

2MamazInSeattle

Here's a link: https://community.babycenter.com/groups/a6711405/carrying_pregnancy_to_term_despite_fatal_prenatal_diagnosis

wishiwaspreggo

I'm so very sorry to hear this.  You're definitely in my thoughts and prayers.

FSBC

you have my prayers and have my heart felt sympathy. Lean on each other during this time. 

2momsinCA

I'm very sorry. My thoughts are with you during this difficult time.

Danni_Girl

Thank you for all the kind words and prayers.

We found out last night that our Baby Girl has Turner Syndrome.

It makes us feel a little better knowing what is wrong and why she has the fluid buildup. But there is only a 1% survival rate.

One good thing thought is that our genetic counselor said that Turner Syndrome is one of the more manageable ones..

We are hopefully she is stubborn like me and won't give up without a fight.
But if we do happen to lose her, maybe knowing she had Turner will help with closuring.

As positive as we are trying to be, and promised one another we would just keep going like we had before the news, it's still hard. I'm finding myself dipping into a bit of depression I think. Plus I'm scared that I won't know if she dies. Every cramp or weird thing I feel makes me freak out. I just know I'm going to be a mess until Wednesday when we see our local doctor and I can hear her heartbeat.

ATXmommas

Hugs to you.  You are not alone.  It's been more than two years since I lost my baby who was diagnosed with Edward's Syndrome and I still feel alone sometimes.  I hate, hate, hate, for anyone else to experience this, but know you are not alone.  I have experienced the anger, the frustration, and unbelievable sadness that accompanies this type of diagnosis.  You're baby is loved and is making her mark in this world - no matter what.  I am so sad for you and am thinking about you.

JennaandBetsy

Thoughts and prayers for Peace, Comfort and Support. That little girl has fought hard thus far and has so many people thinking and wanting the best for her! Please keep us updated as time and emotions allow.

Danni_Girl

Thank you everyone!

So far so good... We saw our local doctor today and we heard the babies heartbeat which was the most amazing sound.
She just needs to keep up the fight. We have another level 2 ultrasound Wednesday next week and I really hope we see improvement and this little girl proves the specialists wrong and she is still with us when they said she wouldn't survive.

KH826

@Danni_Girl - Thank you for the update. I hope your little one keeps fighting. You and your family are in my thoughts. Please do keep us posted when you are able.

JGY

Thank you for letting us continue to be a part of this journey with you.  I am sending you and your little girl every ounce of strength that I have.

bfonz619

With everything you must be going through, I admire your courage and will to not give up.  My heart goes out and my thoughts are with you as well. 

Officerofthelaw

Praying for you

Danni_Girl

Hello all,
So a little update.

Baby Girl is still with us, heart beating strong at 150. But the fluid has now migrated up around her lungs. So things got a little worse than better.

But the baby is still with us and that's what matters right now. Our next follow up is 17 Dec. But we are going back to have a fetal echo done Friday next week. So at least we will get to see her again.

We still don't know what's going to happen, but it's nice that the Dr we saw didn't offer termination or flat out say the baby was going to die. She said when we are there in Dec we will talk about delivery options and what will happen then.
So that was very nice to hear, that's for sure.

StacyLH24

I'm sorry that things aren't looking any better. I'm glad that your doctor is showing you compassion.

Jazibel

Keeping you and your family in my thoughts & prayers. I'm sorry that things aren't improving yet. Wishing the best for you and your little girl.

Officerofthelaw

Thank you for the update! That baby is lucky to have two strong moms fighting for her, that's probably why she is fighter. Stay strong and positive. Sometimes doctors aren't always right! Keeping you in my thoughts!

KH826

Continuing to keep you and your family in my thoughts. Thank you for your bravery and your openness in sharing this with all of us. Sending you tons of support!