# Why hasn't the world stopped?



## zoie2013 (Mar 31, 2007)

I'm 22.5weeks pg and had an u/s today. We found out our baby has fluid between the skeleton, organs, and skin and won't survive. It's called hydrops fetalis. I am collapsing under the weight of this. I don't really know what this means or if I can do this. My mw is coming to the house tomorrow to explain things to us, but I felt the need to ask here. What happens next to me and the baby? How do I keep taking care of my bfing 13mo ds when I just want to curl up in a puddle on the floor? How do I protect my milk supply? How do we, dh, ds, and I, make it through this?

Update: Thank you so much for the support. It has truly helped us in getting through this. Our baby passed away overnight and my labor started this morning. I feel hopeful that my body knows what to do and that I've spent so much time saying goodbye to our little one. We're planning on having our baby at home together. Please keep us in your thoughts, maybe light us a candle today, and hug your loved ones for us.


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## alegna (Jan 14, 2003)

I'm so sorry. I m/c at 20 weeks this spring. Though it was a blighted ovum.

The only thing I can attempt to answer is the milk. My dd had greatly reduced her nursing while I was pregnant (from 10-12 times a day to 1 or 2) As SOON as I m/c the milk came back in full force apparently.

-Angela


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## bri276 (Mar 24, 2005)

I am not going to pretend to know what you are going through.

I have a child with a chromosome disorder, she was diagnosed after she was born, and I can say that I do know the feeling that the world should have stopped, that life will not go on, and in a way that's true, because life changes. But you will not feel this horrible forever. I promise you the pain will get better, though I know that doesn't help you right now when everything is new and raw.

I found this incredibly comprehensive (and confusing) page about this condition. It sends so many mixed messages and without knowing anything else about your medical background (ie, if you're Rh-, which I incidentally am) or how extensive the ultrasound was, I won't even wager a guess as to how much of this pertains to you. Don't read it unless you feel like you can handle it right now, yk? sometimes information really helps, and sometimes it really sends me over the edge.

http://www.emedicine.com/ped/topic1042.htm


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## ~Mamaterra~ (Jul 5, 2006)

I found after miscarrying my twin angels that holding on to my baby girl (10 months at the time) was the most cathartic thing in the world. She was the only one to bring me joy in my otherwise meanless days after my loss....

Just hold your baby boy close, smell his sweet hair and cry as much as you need....

My thoughts are with you as I feel the heaviness of your despair...sorry for your pain.


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## loriforeman (Aug 18, 2007)

i'm so very, very sorry...

i'm hoping that your little one can be treated for this (i've done some reading, and apparently there ARE treatments, depending on severity and cause and such).

the world did stop, and it honored your babe.

somehow, you'll get through this. and you'll be a stronger family for it.

prayers for strength and healing headed your way...


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## NullSet (Dec 19, 2004)

I am so sorry







: Sometimes life really stinks, doesn't it? It is like everything is fantastic, and then something comes along that shoots you in the foot. Hugs to you and your family







Please take care of yourself. Cdnmom is right, when you feel like curling up, hug your ds.

I don't know anything about hydrops fetalis, I'm sorry.


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## moonbeem (Sep 7, 2006)

so sorry


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## ChristyM26 (Feb 26, 2006)

I'm sorry.


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## ~Katrinka~ (Feb 4, 2007)

I am so, so sorry for your loss. I can't offer advice on what happens next in terms of your baby's specific condition. However, I can relate to losing one baby while having a breastfeeding toddler. My baby died at 19 weeks, and I had to wait 5 days for a D&E. During that time, I found nursing my toddler to be..well...confusing. I would just cry and cry sometimes, knowing that she was nursing, and that her baby sister was dead inside me. At other times, her happy little nursing face, and the fact that she needed me for comfort and love, was so helpful.
I spent those 5 days lying in bed crying my eyes out. My youngest two children would just come in and snuggle quietly, pat me sweetly, love me. The unconditional love of a toddler is very healing.
If there are days when you feel you aren't up to breastfeeding, don't feel bad about offering an alternative (from someone else), so you can take a break. I actually didn't breastfeed my dd for days after my D&E, partly because of the meds, and partly because it was just emotionally difficult.
For a pregnancy that ends in the second trimester, it's not uncommon for a woman's milk to come in afterwards. Having a nursing toddler does make that more bearable.
Sending huge hugs and peace and healing vibes to you and your family. You will make it through.


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## hannybanany (Jun 3, 2006)

Oh mama, I am so sorry for your loss


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## daniedb (Aug 8, 2004)

I'm so sorry. No advice, just


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## purposefulmother (Feb 28, 2007)

The world SHOULD stop. Just for a second. Every time a beautiful baby leaves this world, it should acknowledge that.

I am so,so sorry about your baby. I lost my 38 wk baby a few hours after birth, and it seems absurd that life hadn't completely shut down. It's so unfair.

((((((((((mama))))))) big hugs and praying for you to have strength.


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## gretasmommy (Aug 11, 2002)

Your world does stop, though only for the briefest of times. It never feels long enough.

So I will stop with you, for a moment, and weep with you.


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## momz3 (May 1, 2006)

No advice, I'm so sorry you have to go through this, though.
Praying for you and your family.


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## crazycandigirl (Mar 13, 2006)

I am so sorry.







:


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## rach03 (Dec 30, 2006)

I'm so very sorry.


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## mrsfussypants (Apr 10, 2007)




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## kati_kati (Jan 20, 2007)

I am so very sorry.







My thoughts and prayers will be with you. You will make it through this, even though it seems impossible.


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## gassadi (Dec 22, 2006)

I'm so sorry. As so many others have said, I can't know what you're going through, but do offer love and comfort. I miscarried two years ago and my oldest son (6 at the time) was home with me. He was so sweet and brave and talked me through the contractions. We lost our baby, but were blessed with another babe last summer.

I'm hoping and praying for you and your family.

There's a wonderful poem from the 1300s called the Pearl and a man has lost his pearl in a garden, but it's really his daughter who has died. He has a vision of her in heaven. It's odd, but comforting, to read.

Love your baby and cuddle as much as you can ... that sweetness will definitely help.


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## momtoalexsarah (May 21, 2005)

hugs to you. I feel that the world does stop when a baby dies - just not long enough for anyone but the mother to remember. Cuddle your little one, they will help ease the pain a little, but as others will agree when you loose a baby no matter how far along you are you loose a little bit of your heart as well. The remaining hole though will eventually be filled with love and remembrance of your angle.


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## ~Katrinka~ (Feb 4, 2007)

I read your update, and it did feel like the world stopped for a moment. I'm so, so sorry for your loss, but I am glad you had some time to say goodbye. That was something I felt my DH and I needed to do, too.
Wishing you all peace and love and healing.


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## lil_miss_understood (Jul 19, 2006)

I just found this thread.
I'm so sorry for your loss.


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## becoming (Apr 11, 2003)

Oh, mama, I am so deeply sorry for your loss. We lived in fear of fetal hydrops throughout my entire last pregnancy, because our baby had cystic hygromas in utero (commonly associated with fetal hydrops). I understand how mind-numbing and earth-shattering it is to find out there's something not right with your little one.







to you. Wishing you strength and peace in the coming days.


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## Parker'smommy (Sep 12, 2002)

I am so sorry momma for your loss!!!

I lost a baby at 20 weeks this past Feb. I delivered her at the hospital ( I had the option of going home and letting things happen naturally but I was...um...hysterical so we opted for me to deliver her there) It was VERY real, and ironicly, my only vaginal birth. My baby had passed earlier and I had started bleeding already so things went more quickly. I was induced with cervadill and delivered her 13 hours later. It would have taken much longer to do it naturally ( just trying to give you a time frame reference).

Also, I too was still nursing my just turned 2 year old dd. She had cut down to nursing 3 times a day. After I delivered, I continued to nurse her and my milk came back in abundance!! My dd was thrilled and so was I, as nursing her was somewhat theraputic. I can't imagine having one's milk come in and not have a child to nurse.

HUGS to you and to your dh, and your son.







I'm sending lots of healing vibes your way. Please feel free to come to this board to cry, scream, vent, anything. We are here for you. Unfortunately, we know how you are feeling.


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## amydawnsmommy (Mar 13, 2005)

I am so sorry Mama.









I too have wanted the world to stop. It doesn't feel like it now but you will make it through moment by moment, step by step, day by day.

I highly suggest getting a copy of the book Empty Cradle, Broken Heart by Deborah Davis.

Know that we are here for you any time of day or night.


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## merpk (Dec 19, 2001)

So, so sorry for your loss ...










About your 13mo nursling, maybe when you curl up in a puddle, curl up with your 13mo. I found my nursing children to be a great comfort with each of my losses. They nursed a lot more than usual during them ...


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## zonapellucida (Jul 16, 2004)

s mama


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## WaturMama (Oct 6, 2006)

I am so very sorry and sad about you loss.

We also found out we'd lost our little one via an ultrasound it was such a blow and disappointing when we expected such a happy visit--though those words don't even begin to convey the sense of shock and sadness. I am so sorry.

I was nursing then too. The best support from my dh was times he cared for ds so I could sob, journal, pray, talk to my friend who'd had 2 miscarriages, sob more. I hope you finnd your own way through it. There will be another side. It won't be like life before because you are the mama of this one too, but there is another side. (I hope that is helpful and not too preachy).


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## SelasMom (Sep 20, 2007)

Hi Zoie - I would love to talk to you about your experience so we can compare notes and try to get more understanding about hydrops fetalis. i lost my baby girl Sela at 27 weeks on 8/1. It's barely been 2 months and I'm still grieving hard. And I want more answers than the doctors can provide. I'd like to see what other things you went through so maybe we can make more sense of what happened. If you're up for it, please email me. You're the first person I've met who also lost to hydrops. I'll be thinking of you and your loss. [email protected]. Allison


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## zoie2013 (Mar 31, 2007)

Quote:


Originally Posted by *SelasMom* 
Hi Zoie - I would love to talk to you about your experience so we can compare notes and try to get more understanding about hydrops fetalis. i lost my baby girl Sela at 27 weeks on 8/1. It's barely been 2 months and I'm still grieving hard. And I want more answers than the doctors can provide. I'd like to see what other things you went through so maybe we can make more sense of what happened. If you're up for it, please email me. You're the first person I've met who also lost to hydrops. I'll be thinking of you and your loss. [email protected]. Allison

Hi Allison,
I'm so sorry you lost your baby girl Sela.







I would be happy to talk with you about what we find out and to listen to anything you would like to share. We will know more on Weds and I'll pm you as soon as I'm able. I'm not sure whether I'll hurt more or have more closure right after we find out whatever it is we'll find out. But, I promise to be in touch with you. I'm also wondering if some things we should post at mdc to help other parents how may go through the same issues...


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## SelasMom (Sep 20, 2007)

Yes the info would be good for all to hear. I hope your appt went well yesterday. If there's any way that we can start a new discussion under the Heading: Hydrops Fetalis - that would make it easier for others in our shoes to try to find some answers. I'm new to this web site and I don't really know how to start that.

As far as our experience and from what we read online - hydrops has 2 main causes. 1. blood incompatibility - the Rh factor. OR 2. All other causes which include: infection, heart failure, severe anemia, chrom abnormalities. I didn't have the Rh problem so we fit in the other category. We've tested negative for chrom abnormalities and infection. Our baby did have severe anemia and probably a heart problem because her heart rate was great in utero but as soon as she was delivered (emergency c/s because of the visible swelling on the u/s) her rate dropped to 30 and it should have been 80. How did this happen? She was kicking a lot and was very active at each u/s. Was she always sick or did she GET sick? The doctors don't have answers for that.

There's one thing that happened that makes me wonder if it was related. About 2 weeks before this, I was waking up from a deep nap and I was still mostly sleeping - you know that drugged feeling... and I felt my uterus have this spasm. It was as if my uterus was vibrating and I couldn't stop it. I wondered if my baby had a seizure or if the cord was stuck around her neck and she was trying to get free. I worried until I felt her kick later that night. When I called the doctor about it the next day, she said that the baby is getting bigger and your uterus is stretching/growing - not to worry. But I haven't met anyone who's had that happen. A week later, we had an u/s and our baby looked ok except that she had a minor build up in her intestines. The doctor had us tested for Cystic Fibrosis but we were both neg. What I thought was unusual was that our baby laid still for the whole u/s. All other u/s's she was practically running and moving all over the place. The doctor said she was getting bigger and running out of room! I'm shocked by that now - I was 25 wks - the baby was NOT running out of room. The next week, I noticed our baby wasn't moving for a day or so. I went in for monitoring and that's when they noticed the swelling/hydrops. They did the emergency c/s and our baby girl Sela lived for 2 1/2 hours. They had to do CPR and put her on a respirator but she didn't make it.

The whole thing makes me ill - to think of what Sela went thru and what we went thru. This was my first pregnancy and I was doing everything right. I couldn't wait to see Sela and to be her mom. I don't trust doctors and I just have a feeling that not enough is known about hydrops. I'd like to hear other womens' stories to see if we can find anything similar that could possibly be the cause. I do realize that there may be no cause or way to prevent this but I'd like to research it a bit to be more sure.

Please share your details/story when you are up to it. I hope you are doing ok today.

Allison


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