It sounds like my sister's twins aren't going to make it. Now what?
December 2, 2012 6:20 PM   Subscribe

Family drama: what should we be doing? This was me. Last night, my pregnant-with-twins sister went to the ER with bleeding and what felt like early contractions.

Not to be a drama queen but it seems like this might actually be the worst case scenario for the twins. They're at 23 and a half weeks. Labor basically started. They're trying to pause things to give them a chance but they don't have a lot of options.

My brother and his girlfriend are at the hospital with her. My sister and father are flying down tomorrow. My brother is asking me what he should be doing. I have no idea. I'm going to see if I can possibly fly down Thursday. Her friends are at the hospital.

Can I do anything between now and when I head down there? Can I do anything when I get down there? What should I tell my colleagues? What am I not thinking about that I should be? How can I help my sister learn

This sucks.
posted by kat518 to Human Relations (38 answers total) 4 users marked this as a favorite
What are the doctors saying? Is it possible they will be able to stop her contractions and keep her on bedrest in the hospital? In that case, your coming later in the week might be a good break for those who are there now. So sorry, hoping for the best.
posted by ThePinkSuperhero at 6:27 PM on December 2, 2012

Your colleagues don't need to know details. Just say there's a family emergency (there is), that you're flying in to help out (you are), and that any good thoughts they can send your way will be appreciated.

One thing you could do is go home to your sister's place and maybe get it cleaned up so when she returns home it's an easy transition and she doesn't have to do anything to get things comfortable again.

As for your brother and the rest of your family, I think just being there is a big, big thing.

Sending good thoughts your way, too.
posted by These Birds of a Feather at 6:30 PM on December 2, 2012 [10 favorites]

Check your MeFi mail.
posted by purpleclover at 6:38 PM on December 2, 2012

Can I do anything when I get down there?

I'm really sorry this happening to your family, and I hope your sister is well and it turns out okay.

In terms of what you can do: practical shit, like if she can't out of bed, bringing her a toothbrush and bowl to spit in. If the covers in the hospital are kind of lame, see if you can bring a warmer blanket in. Get her some ridiculously toasty socks. Keep everything clean in the room, no gross towels around. Pull the blinds closed so the light isn't glaring in, keep ice water by her bed.

All this assuming it's allowed, of course. But people sometimes don't realize the dull details that need to be attended to and everyone assumes someone else is doing them. If she winds up on bed rest, you might be able to do her nails, wash her hair---all that stuff.

If the worst happens...just sit there and cry with her if she'll let you, and if she wants to be alone, let her be alone.

I'm sending you and your sister my very best vibes.
posted by A Terrible Llama at 6:41 PM on December 2, 2012 [3 favorites]

When I was stuck in the hospital, my husband set up a schedule so that I was almost never alone or so that my relatives would be there in shifts. Maybe this is something you could do, if you know she will be in the hospital for a while, help organize people by shifts.

Another thing that helped was having people help my husband. He was at my bedside for days on end. People brought him food, told him to go home to sleep/shower and even gave him cash for the parking lot. It helped him at a time when his brain wasn't working very well.

Wishing you the best.
posted by dottiechang at 6:57 PM on December 2, 2012 [5 favorites]

@ThePinkSuperhero, according to my brother, the doctor said that it does not look good. I think they can't stop the contractions but right now they're not going anywhere, which sounds like it sucks for my sister because she's trying to sleep but like every 5-10 minutes, she has a really painful one. Her water hasn't broken yet but the kids are on their way. They've checked on them and so far, they're fine but they are way too early.

The thing that's especially grim is that at this stage, they usually don't offer life-saving treatment to the kids, just palliative care. I'm the type who, when there's a 99% chance of something bad happening, thinks there's still a shot. But I don't think this is one of those times.
posted by kat518 at 7:09 PM on December 2, 2012

@These Birds of a Feather, I'd be game for cleaning the place but what concerns me is that I'm sure she has a ton of baby stuff all over. If we do make it to her place to clean, should we leave that stuff as is for now?
posted by kat518 at 7:10 PM on December 2, 2012

Re: the baby stuff... You know your sister best, but my inclination would be to put all of the baby stuff in the room/area set aside for the twins, unless it's her bedroom, in which case I would find a logical area that is slightly out of the way. I would leave the babies' things all in exactly the state they are in now, e.g., don't assemble or disassemble furniture, unwrap clothes, etc. Make it out of sight but all together in a logical place and organized in a pleasing, caring way. That way, if things go well you've given her a head start without taking away her experience of getting ready for their eventual homecoming. And if things go south, you've made it easier for her to do whatever she needs: ignore what is painful or visit the items to help process her grief. Sending positive energy her way (and yours).
posted by carmicha at 7:34 PM on December 2, 2012

Yes, I would, but maybe take inventory of it. In the event of sad tidings, which I am personally praying against with all my heart, she will likely not know what to do with everything and if you know exactly what's there you can remove it and process it so she doesn't have to. If things go well, it's all right where it needs to be.
posted by These Birds of a Feather at 7:37 PM on December 2, 2012

Is there a level III NICU in her town? If she wants care given to 23-week babies, she needs one. can you do some research on this for her? Find the closest one, find out transfer options, that sort of thing.

At this stage, keeping her pregnant for a day or even a few hours longer makes a difference. She should know that. 23 weeks is scary early, but absolutely viable. She can and should demand that doctors do everything to save them if that's what she wants.

Feel free to memail me; I'm on a phone right now but will get to a computer when I can. My 25-weeker was born not quite 12 weeks ago and is amazing. NICU is a crazy experience but mine regularly saves 22-week babies. All is not lost. My thoughts are with your sister right now!
posted by peanut_mcgillicuty at 8:03 PM on December 2, 2012 [15 favorites]

peanut - giving false hope here is really not helpful. The survival rate for singleton 23 week olds is 20-35% (and at 22 weeks it is zero to 10 percent, so I'm not sure how it is possible that any place near you is saving 22 weekers "regularly"), and that is NOT the same thing as the survival rate without serious disabilities. Twins are going to be in an even more dire situation than a singleton would be because they will be smaller and less likely to survive.

Another reference: Halamek, Louis. "Prenatal Consultation at the Limits of Viability", NeoReviews, Vol.4 No.6 (2003): "most neonatologists would agree that survival of infants younger than approximately 22 to 23 weeks’ estimated gestational age [i.e. 20 to 21 weeks' estimated fertilization age] is universally dismal and that resuscitative efforts should not be undertaken when a neonate is born at this point in pregnancy."

I'm not trying to start an argument but the advice you are giving is not what the OP asked for, and it is extremely controversial.
posted by treehorn+bunny at 8:16 PM on December 2, 2012 [12 favorites]

Treehorn, the research you linked to is nine to thirteen years out of date, an eternity in neonatology. The risks are extremely high, and the road is difficult. But to tell a mother there is nothing to be done without presenting her with the actual options that exist is extremely unfair. There are twenty-two week old twins down the hall from my daughter who are doing extremely well. There is hope, and it may not be false.
posted by peanut_mcgillicuty at 8:25 PM on December 2, 2012 [1 favorite]

How about this article from 2009 that addresses your point: "Early baby survival 'unchanged'".

I really do not wish to discuss this line of conversation further because I feel it is really not what the OP is asking for and is adding stress to an already stressful time.
posted by treehorn+bunny at 8:28 PM on December 2, 2012 [1 favorite]

Just wanted to say that I appreciate both perspectives. It was scary to learn that a lot of places basically only offer palliative care to babies born before 24 weeks. I get it intellectually but it's definitely different when they're talking about my niece and nephew. But thank you both for offering both sides of the prognosis issue and I hope your little one stays healthy, peanut.
posted by kat518 at 8:50 PM on December 2, 2012 [3 favorites]

Also, my father suggested I stay here for now - sister is about an eight hour drive/short flight away. I'm prepared to throw clothes in a bag and go to the airport if something changes but do you think it's appropriate to sit tight for now? My other sister said she was going tomorrow because she doesn't have to work this week so I don't feel like a jerk for not being there yet.
posted by kat518 at 8:58 PM on December 2, 2012

Given that plenty of other family members are rallying around, I think it's fine to sit tight for now.

Nothing else to offer, I'm afraid, except that I'm wishing so hard for a good outcome here.
posted by Salamander at 9:09 PM on December 2, 2012 [1 favorite]

I'm sorry this is happening, it's a terrible thing to go through.

1. Just be there with your sister. Sit with her when she wants you to. Go get her ice cream when she asks. Rub her feet. Let her cry and be angry. Don't be afraid to talk openly about the situation with her.

2. Write down what the doctors say in response to any questions she has (if you are around for them) because chances are she will have a hard time remembering who said what and when. Things get very confusing.

3. Things to consider at some point if things are looking like they are not going to make it: Now I Lay Me Down To Sleep is a nonprofit organization of professional photographers that will take very mindful and tasteful photos of your sister and her babies. There are kits available to make handprints and footprints of the babies. Ask the hospital about those as sometimes they have those available. Encourage her to hold her babies and spend time with them for as long as she can.

4. Things I wish people did not say to me while I was in the hospital and then again after my son was born and died: "Everything is going to be fine." "Try to stay positive." "It was probably for the best." "This is part of God's plan." "God would not give you more than you can handle."

Sorry if my response seems morbid but those are things I wish someone had done for/told me. I truly hope they make it and again, so sorry this is happening.
posted by teamnap at 9:24 PM on December 2, 2012 [11 favorites]

Go...unless your sister has specifically said she doesn't want you there.
posted by brujita at 9:30 PM on December 2, 2012

@Teamnap, are there things people said that were helpful?
posted by kat518 at 9:33 PM on December 2, 2012

I would say go. This is a really tough situation to be in and I suspect she will appreciate having the family there for support. Another consideration would be if taking some time to plan the trip would give you more time - let's say that the babies go to the NICU and things continue to unfold, other family members may not be able to stay with her, and then if they need to leave, and you can show up to take over with being there for her, that could be a good thing too. Hard to say because there are a lot of unknown variables at this point, but I think if you can reasonably work out going and you think she would be glad to have you there, then going is not going to be the wrong answer regardless of what happens.
posted by treehorn+bunny at 10:46 PM on December 2, 2012

If there are a lot of people in you sister's life who would want to be updated, you could ask your sister if she would like a Care Page created.

It's a centralized way of relaying information, and you could update it for her.
posted by zizzle at 4:23 AM on December 3, 2012 [1 favorite]

The most helpful things people said to me during that time were things that validated how terrible the situation was and how I felt about it. So many people wanted to try to make me (more likely themselves) feel better when all I wanted was for them to say, "I'm so sorry this is happening. It is really terrible. I wish I could do something."

The people I appreciated the most were those who were able to sit with me during and after and let me just be sad without trying to force me to feel better. I had a friend, after two weeks in the hospital, bring a game of scrabble and a deck of cards and played games with me and my husband for hours. It is one of maybe three memories I have of those weeks that is pleasant.
posted by teamnap at 5:36 AM on December 3, 2012 [1 favorite]

I'm so sorry this is happening to your family.

We recently had a family emergency and it was very helpful that a few family members stayed put during the initial emergency because the treatment ended up being drawn out over a couple of weeks. Those family members were able to come in and relieve the original caregivers.

But if your sister asks for you specifically, go.
posted by kamikazegopher at 6:59 AM on December 3, 2012

I want to add that if you would feel better being closer to your sister and family, that is a good enough reason to go. You are going through this, too, and will have your own grieving to do. I'm not saying go and make it about you, but sometimes when things are scary and sad it can make you feel better to just be able to set eyes on your loved ones.
posted by Brody's chum at 9:13 AM on December 3, 2012 [1 favorite]

I would target your arrival for the earlier of:
(i) your sister's discharge from hospital
(ii) a memorial service for your niece and nephew
(iii) 7-10 days post admission to relieve the caregivers
(iv) when your sister asks for you specifically to come

See if you can stay for a week at that time. If I were you, I would delay departure so that you could help her at home, she'll need it.

For now, all you can do is call her every day and listen. Also, if her boyfriend is still working, you can arrange food/dog walking/yard care etc for him. He won't have time for this if he is hanging out in hospital.
posted by crazycanuck at 9:26 AM on December 3, 2012

I have a good friend who was in this exact same situation. 23.5 weeks, twins, unstoppable labor. If she had been able to keep the babies inside for a week or even a few days longer, the outcome may have been different, but I am very sorry to say that her boys were unable to overcome the complications due to their prematurity, and even with resuscitation and bleeding-edge standard of care, they passed away in the hospital a few days after they were born.

Nothing really helped-helped, in the sense that nothing made it anything other than the worst thing that had ever happened. But there were some things that people did that made it not even worse than it already was. Like giving them money; hospital parking, hospital cafeteria food, all the things you spend money on because you're too poleaxed to not spend money more wisely. Like understanding that her emotions and her needs will vary wildly from hour to hour, and that she will be angry and lash out inappropriately and that while you don't HAVE to put up with it, if it's possible for you to just be with her in her anger and her grief without taking that in, that will be an enormous blessing. Like being a conduit to the outside world so that they didn't have to repeat bad news over and over and over again, whether that means making phone calls to her boss and her friends or setting up a Caring Bridge page or whatever else.

If her kids are born at an age and weight where they are good candidates for resuscitation, and if that goes as well as possible, she will be in for a really rough time. I have never been the mother of a child in the NICU, but I've seen it, and it is a special kind of hell. If that's the case, she will need high-quality unscented hand lotion (you have to wash your hands a million times a day in the NICU), good pillows, good socks, gift cards to nearby restaurants and coffee shops (these will not only allow her to defray some expenses but encourage her to spend some time outside of the hospital, which is unimaginable and incredibly necessary), and someone to gently encourage her towards self-care.

Last but not least, please refer to her babies as her babies. If they have names already, use their names. When confronted with infant loss, particularly in the case of very small babies who don't live long or who are not born alive, many people try to minimize their own very understandable discomfort by sort of eliding the kids out of the picture, like they were never there. Different parents may and probably do feel differently about this, but for my friend, it was incredibly hurtful; her babies were people who were born too soon and died very young, but they were her children and she loved them. Treat her like you'd treat any mother whose children were critically ill.
posted by KathrynT at 10:35 AM on December 3, 2012 [16 favorites]

I don't have much help to give, but as a mother of multiples, I know how hard it can be. I know how bad the outcomes can be, and how good they can be. I really hope they were able to stop your sister's labor at least for a few more days. Please keep us posted.
posted by pyjammy at 11:51 AM on December 3, 2012

@KathrynT, thanks for pointing out the distinction regarding what to call them. For some reason, my head keeps calling what might happen a miscarriage when that's unlikely to be exactly what happens. I think my brain thinks, miscarriage, that's something your friends have had, when this is not the same. They don't have names but mentally, I've been calling them the twins or the kids.
posted by kat518 at 12:44 PM on December 3, 2012 [1 favorite]

Glow in the Woods is a site for parents who have lost babies. This section includes some of the most respectful and compassionate advice I have read for those of us trying to support the bereaved. Best wishes to you and your sister.
posted by rdc at 5:15 PM on December 3, 2012 [1 favorite]

I hope you will be able to give a good update on your sister and her babies.
posted by pyjammy at 8:32 AM on December 6, 2012 [3 favorites]

Hi all, I'm sorry that I'm just getting to this update and that I don't have good news. My other sister called Monday night to say that my sister's infection had gotten worse and they had to induce labor. The twins were born at about 5 a.m. on Tuesday morning. A priest baptized them and did the anointing of the sick. All of my siblings and my father saw them and they spent some time with their mother before they died. The boy came out first and he was Patrick Joseph and then the girl came out, Bridget Maureen. They were going to be born on St. Patrick's Day so they got nice Irish names.

I didn't arrive until Tuesday at about 3:30 p.m. so I did not see them while they were alive. While I feel badly about that, I also worry that I would have freaked out had I seen them. The nurses had told my family that their eyes would probably be fused shut, which they were. My brother said it looked like the boy baby had some kind of hemorrhage. When the doctor saw the boy's placenta, he said that something about it didn't look right. They think something was wrong with one of the babies, triggering the infection and early labor.

My sister was discharged Wednesday. She had an appointment with a counselor who told her to focus on getting healthy so she can try again, which she's already talking about. She's planning to take medical leave until after the new year. My father and sister are still with her.

I came home last night. I started freaking out in the airport before our flight. I started thinking, I am coming home from seeing my sister after her babies died. I am trying to keep it together and think of things I can do now instead of what I should have done then. I was thinking of sending my sister cookies but maybe even little notes - I saw an article about the inauguration and she was interested in that so I thought that'd be easy. If anyone has other ideas, please let me know. I'm also thinking of doing something stupid like getting a tattoo with their initials and birth date. If anyone has an idea for something less stupid, that'd be helpful :)

Thank you all for your advice and for listening and checking in on me. It's (kind of) easy for me to go about my day without thinking about what just happened but I can't get too far from it before it hits me and I feel awful. And I realize that if I feel awful, my sister must feel really awful. Sometimes particular details will hit me like a gut punch. I was thinking how, if it had been me carrying the twins, how empty, literally empty, I would feel afterwards. But this didn't happen to me, it happened to her and I have to think about her.

I'm not the praying type but when I was having a hard time sleeping last night, I was telling the twins in my head how sorry I am that I didn't get to meet them and how much I loved them and how much everyone in our family loved them.

Thanks again, everyone.
posted by kat518 at 8:54 AM on December 7, 2012

I am so sorry, kat518. This is horrible.

Even though this is primarily your sister's loss, remember that you have your own grief as well. You never knew these babies, but you loved them, and your mourning is real. Please be gentle with yourself as much as you can.
posted by KathrynT at 9:01 AM on December 7, 2012 [3 favorites]

I'm so sorry, kat518.
posted by zizzle at 9:11 AM on December 7, 2012

I am so sorry. Wishing you and your sister and your family peace. Patrick Joseph and Bridget Maureen are darling names.
posted by These Birds of a Feather at 9:32 AM on December 7, 2012

I'm so, so sorry for your loss. It is your loss, be gentle with yourself and allow yourself to grieve your sweet niece, Bridget, and nephew, Patrick.
posted by pyjammy at 10:53 AM on December 7, 2012

I'm so sorry for your loss. Thank you for updating. Know that people all over the world are also grieving for your niece and nephew.

As to the tattoo, perhaps you could find a traditional Irish symbol or even two different ones that could represent your niece and nephew. You could include their initials if you wanted to, or just know that the symbol stands for them. I'm thinking that if you include the initials, you are definitely going to be asked for the story behind them from people who see them for the first time, and that might not always want to be information you'd want to share with everyone who asks.
posted by Brody's chum at 11:26 AM on December 7, 2012 [2 favorites]

So sorry for your loss.
I think it is great you are there for your sister, please remember to be there for yourself too.
My brother lost his darling daughter at 1 year a couple years ago, it is a hard road.

I did meet Sophia during her short life several times, but my big regret is not seeing her more as they live far away. I was at the funeral, and I helped my brother and sister in law pack things up and just spent time with them afterward.

I know exactly what you mean about being overwhelmed suddenly. I am still overwhelmed suddenly at times, and it has been a while now. I often feel it most about my brother, being overwhelmed for his loss. Immediately afterward I found myself disclosing about Sophia's death to all sorts of people in very socially awkward ways (I still think kindly on the Canada Customs guard who asked me why I had been away from Canada and the dress shop lady who sold me what I wore to the funeral, who were so kind to me).

A dear friend told me after she died that he had lost a 4 week old, and to tell them that he never forgot his daughter, or stopped loving her, but that he was also able to move on. (He is now the father of my son's two buddies).

My brother and sister in law now have another child, Theo, who is glorious and wonderful, and just over 1 year. I was absolutely overjoyed when they announced they were pregnant, and realized I'd been holding on to a fear they would not move on. But they did, and they talk about Sophia all the time, and it is ok.

I have held on to that wisdom and it helps me to know this.

Sending you much much love.
posted by chapps at 3:58 PM on December 9, 2012

Sorry, ok is not the right word, I just mean I had this enormous fear that they would be completely broken as people, or they would somehow not be able to help each other through, but this was not true, they did get through it together - and I was able to be part of helping them get there.

As for the tattoo I think it is great to do something to mark their short time. Give yourself time to decide how, there may be many things you want to do.
posted by chapps at 4:06 PM on December 9, 2012

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