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Old 12-18-2009, 03:37 PM - Thread Starter
 
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Old 12-18-2009, 03:43 PM
 
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I have no advice. But have you searched info about the girl that is referred to as *mermaid girl* she had this condition, and unfortunately passed away recently at 10 years old.

I would just support the parents. It must be difficult to know that one of your babies will probably die. Could you help with plans (ie.funeral) for them? Could you call the photographer...Now I Lay me Down to sleep to come in shortly after birth for pictures?

So sorry....
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Old 12-18-2009, 08:33 PM
 
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I'm so sorry to hear this. But, yeah, probably just being supportive is all you can do right now. I'm sure that they are aware of their circumstances and it doesn't sound like you're going to be able to walk in there and make that change overnight. I cannot imagine being told one of my twins was likely going to die at birth. So sad. I don't understand what you mean by passing the other baby off to caregivers? You mean they are placing that baby for adoption?
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Old 12-19-2009, 01:51 PM
 
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OP has seen my response already.

Denise, mama to ds1 (03/26/05) and boy/girl twins born 08/12/08
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Old 12-20-2009, 09:06 AM
 
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what a rollercoaster Denise, you supermum

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Old 12-21-2009, 05:12 PM - Thread Starter
 
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Thank you Dknees. Both for sharing your daughters story and for telling me what I think I was looking for.

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Old 12-21-2009, 06:21 PM
 
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Originally Posted by mumm View Post
I guess I'm hoping they will get frank information from the MDs, not just a rosy view. The current plan is for Baby A to leave the hospital after the c-section with a friend and live with the friend until Baby B leaves the hospital as well (which I imagine could be a very long time?) They are already talking about how Baby A will watch over and protect baby B, which feels like sooo much pressure for a kid to grow up with. ("The Lord sent them together so A can be a protector to B." Maybe just my frustration with a god getting all the credit/blame for everything in this world. For me it is passing the buck. I'm sure I would feel comfort from it if I was a believer.)

I've been doing a good job of keeping my opinions and ideas to myself and just being a sounding board and (hopefully) a supportive shoulder. Personally, I'm starting to be able to put aside all the stupid things she has done and decisions she has made and just look at the current situation. I can't even fathom the anxiety that the duedate produces. The overwhelming joy and fear that are typical for any new parents, compounded by twins, and then magnified by Baby B's issues. Just focusing on that makes it so easy to be supportive and not question everything they do that I find ridiculous.

I got the dope-slap I was looking for!
First off, many HUGS to you and your family for having to deal w/ this extremely difficult situation! Second, I would let the things your niece says about baby A's relationship to baby B slide. People say many many things when they are grieving. Knowing that baby B is going to have a companion who won't stare, scream, or run away is surely a huge comfort to her. Whether things actually play out like she is saying is way in the future, IF her baby even gets to live

How generous that your niece's friend has offered to take in their baby! What a special person. It will give your niece and her husband peace of mind to know that their precious baby is well taken care of while they are in the midst of dealing w/ one of the hardest things they will ever face in their lives. Now is the time to circle the family wagons. Certainly their other life circumstances sound less than wonderful, but this is the time to focus on the health of Mom, Dad, and babies, no matter how short of a life any of them may end up having. There is time to make more money later & Grandma, Grandpa, aunts, uncles, cousins, siblings, well, everyone is going to need to lean on each other for comfort right now. Be gentle w/ yourselves and each other

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Old 12-21-2009, 07:40 PM
 
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part of the problem is that the doctors can't be *too* frank with your niece, because they don't know EVERYTHING yet. They won't know until after birth. They can speculate through the use of the ultrasounds, but until they see the baby and do X-rays, MRIs etc, they can't give an exact accounting. THey can give "most likely" ideas, but nothing concrete.

To an extent, I do think baby A is going to be a "protector" of sorts. I don't think it's a bad thing to thank God for that. Regardless, I do think they'll have a special bond.

Denise, mama to ds1 (03/26/05) and boy/girl twins born 08/12/08
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Old 12-21-2009, 08:17 PM
 
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Now I'm crying. Whatever your opinion of her as a person now's not the time to judge her. I'm still crying. I think she's doing a very responsible thing for the surviving child. You've read what ppd does to some mothers. She needs to focus on the loss (worse case) and work through trying to help the dying child for closure so she can be (hopefully) a better mother to the surviving child because she took this time to do what she felt like she needed to do. Support her in however she chooses to try to live through this.
What can you do for the healthy baby? Can you go and visit him and give him loving nurturing vibes once a week?

ETA:
And if the healthy baby's going to be a premie go ask the la leche league how you can find a breastmilk bank and research funding sources if it's not likely to be covered by whatever public assistance your niece is getting. That might be beyond her, or the relatives caring for the boy. I don't know if the nurse or hospital staff will suggest it to her. But that might truly be helpful in helping that little boy thrive.
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Old 12-22-2009, 03:55 PM - Thread Starter
 
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Originally Posted by hablame_today View Post

ETA:
And if the healthy baby's going to be a premie go ask the la leche league how you can find a breastmilk bank and research funding sources if it's not likely to be covered by whatever public assistance your niece is getting. That might be beyond her, or the relatives caring for the boy. I don't know if the nurse or hospital staff will suggest it to her. But that might truly be helpful in helping that little boy thrive.
She thinks breastfeeding is gross and never had any plans to bf a singleton anyway. I'm going to give her mom info about local mot groups, loss support groups, special needs parenting, etc. She tends to not leave her house much and as she doesn't work or go to school she plays video games all day. Maybe having an organized place to go might help her get out of the house to more than just a doctors appointments.

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Old 12-23-2009, 07:40 AM
 
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mumm, just sending a for what you're going through with your niece. must be very difficult to have to watch.

i always get scared remembering we'll hopefully grow old to watch the things our own children get up to at some point. aaagh!!!! this could be good practice in that sense i suppose

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Old 02-20-2010, 07:18 PM - Thread Starter
 
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Old 02-22-2010, 01:51 PM
 
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mumm - that's fantastic news. plant a seed and you never know what will grow

i'm so sorry they are having to cope with the preemie thing as well as the mermaid syndrome. it sounds hopeful in the sense that if they've operated they are being proactive and hopeful themselves. big

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Old 02-26-2010, 04:58 PM - Thread Starter
 
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Old 03-02-2010, 05:15 AM
 
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I'm sorry.Thank you for being such a wonderful auntie.

joy.gifme, herding 5 critters a cat and a dog. DS 11/01, DS 10/04, DD 2/06, DS 5/07 and DD 9/10

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Old 03-02-2010, 05:22 AM
 
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So sorry for your loss.
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Old 03-11-2010, 12:10 AM
 
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I am so sorry for your loss.
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Old 03-12-2010, 06:17 AM
 
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I am just now catching this. So sorry for your family's loss.
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