How to care for preemie twin boys?
December 21, 2009 12:11 AM   Subscribe

Looking for info on taking care of and raising two preemie twin boys.

I've looked on Google and found two local twin groups, but neither of them have responded to inquiries.

The boys were born in October, they were due in February. They are fraternal (as far as we can tell). If anyone has any resources they would recommend or things to try (other than stocking up on diapers), I would be more than willing listen and extremely thankful.
posted by hgswell to Human Relations (24 answers total) 3 users marked this as a favorite
 
What exactly are the issues that you're having trouble with? Or, are you just trying to get mentally prepared for their arrival from the hospital or something?
posted by salvia at 12:56 AM on December 21, 2009


Response by poster: A wide array of things:

I think the biggest thing right now we are dealing with is the uncertainty of how the boys are doing. They were doing great, then a few days ago they both regressed a few weeks as far as progress. We realize that they are premature, they they are developing in a very stressful environment. But it feels as though we are not prepared for these things. Is it possible to be prepared without reading one of those books that has every single possible thing that might possibly go wrong and scares the pants off of you? I hope not. I was hoping for a more succinct list of things that are high on the scale of likelihood for preemies.

I was also looking for things to start reading now about how to raise twins. How do you make sure you raise them to be individuals? How early do you have to start that? Apparently there is still this idea that twins must be dressed alike at all times (according to the clothes we have received), but that doesn't seem to work in their favor. I know it's early, but I'd rather know this stuff now rather than waiting until later.

I have heard promising things about teaching young children sign language. Any suggestions for books about the subject?

Again, I know it's early for some of these things. But I'm seeing time fly by so quickly now, I know I need to start learning about these things now while I'm thinking about it rather than waiting until I need to know them.
posted by hgswell at 1:26 AM on December 21, 2009


My 15-year-old was premature and spent two months in the NICU before coming home with a heart monitor and lots of lingering issues related to the circumstances of his birth. Are your twins at home yet? Depending on where you are, they should qualify for programs designed to address their needs. My son qualified for PT, OT, and speech therapy based on his birthweight. He only needed them for a few years but without them I'm sure his development would have been very different. When your twins were in the hospital you should have been assigned a social worker who let you know what's available to them. Follow that track now even if they're home --- hospital and NICU staff are your best bet for preemie-related advice and resources.

The one thing I cannot emphasize enough for parents of preemies is the immeasurable benefit of infant massage. I don't know how many days passed with me standing there uselessly looking at my newborn son through a plastic barrier, unable to do anything for him as he suffered and struggled to survive, but then somebody (social worker? massage therapist? nurse? I'd love to thank that person now, but it's all a blur) taught me the basics of infant massage. It transformed the experience, certainly for me but I'm sure for my son as well. Purposeful, therapeutic touch is so beneficial, it helped him physically by stimulating bloodflow, helping move things along in his bowels, experiencing nonclinical human contact (so important no matter the age!) ... and it definitely contributed to maternal bonding and gave me hope that he would survive. I was an editor at the time but 12 years later when the circumstances permitted, I went back to school and became a massage therapist.

My boys are close in age but not twins, so I can't speak to the twin question, except to say as long as you recognize their individual personalities, strengths, interests, etc. then their twin-ness will be a benefit rather than a burden. The clothes you have received from well-meaning friends & family are just that, well-meant gifts. Everyone receives well-meant gifts that don't quite suit them. If your boys are anything like mine, they'll end up wearing each other's clothes anyway.
posted by headnsouth at 2:23 AM on December 21, 2009 [1 favorite]


Response by poster: No, they are not home yet. They are still in the NICU and probably won't be home until mid-February/early March. Plenty of time to read up on everything.

I'll look into infant massage. This is the first I have heard of it, but it sounds interesting.

I have heard that they do and will qualify for different programs, but our social worker isn't very forthcoming with information. I feel like we have to already know the answer to our questions before I ask them or she won't offer up anything we don't already know.

Thank you!
posted by hgswell at 2:32 AM on December 21, 2009


our social worker isn't very forthcoming with information.

You've got two little ones in the NICU. Insist that she be forthcoming. I am generally pretty laid back, not usually a squeaky wheel, but if I thought my son's well-being was in the hands of someone who was just phoning it in, I'd be a formidable mama-bear. Your boys' entire lives will be affected by the support and therapies and care they receive now; if there's ever a time to demand more information/go over someone's head/be a pain in the ass, this is the time.
posted by headnsouth at 3:43 AM on December 21, 2009 [5 favorites]


I could not agree more with headnsouth. Can you get a different social worker? Talk to your NICU nurses - they will know who is good and who is useless.

Also, can you tell us where you are/what hospital your sons are in?
posted by shiny blue object at 4:05 AM on December 21, 2009


Advice as new parent: NICU nurses are awesome. Talk to them as much as you can. Find out what resources are available at the hospital and through your insurance.

I'm surprised (kinda) that local multiples groups aren't being more helpful, but maybe people are just busy?

I know it is easy to let your world spin out of control, but focus on the day-to-day rather than if you're going to put them in the same kindergarten class.

Advice as a twin: Dressing alike is silly but I see the ease in starting the day in the same outfit. Honestly, of the 5 sets of baby twins I know, they're never dressed alike.
posted by k8t at 5:43 AM on December 21, 2009 [1 favorite]


One tiny bit of advice for when they come home - they will probably still be in preemie sized diapers, which are not available in stores. But they are available via mail order. The 800 number is on the box of Pampers that the hospital uses - those fantastic nurses will be able to get that for you so you can order some before your boys go home. Of course, this all depends on their growth over the next few months, but if you need them, it's good to know and to get them in advance.

I saved one in my daughter's baby memorabilia. She can't believe that she used to wear something no bigger than a Kleenex.
posted by CathyG at 6:22 AM on December 21, 2009


I have no specific advice to offer, but if your local support groups haven't been helpful, there are quite a few very active, supportive and helpful online parenting forums/communities, most of which have subsections specifically devoted to NICU and preemie parenting; whether you join or just lurk, periodic visits there might be able to help you on a more ongoing basis than a one-off AskMe question. Mothering.com and altdotlife are two ones I've found especially helpful for parenting stuff; not sure about alt.life, but Mothering definitely does have a dedicated preemie board.
posted by Bardolph at 6:31 AM on December 21, 2009


I have heard promising things about teaching young children sign language. Any suggestions for books about the subject?

The Signing Time web site might be a good place to start. It's not professional research or anything, but a very popular series of DVDs for kids.
posted by SuperSquirrel at 6:48 AM on December 21, 2009


First of all, relax and rejoice! Take a deep breath. You are going to bring home two wonderful gifts into your home! Halle-freakin-lujah!

I wouldn't worry so much about their education yet. I'd focus on their growth and attachment to you at this stage. Your positive attention to them, your love and care, will be most of what they need. And food, nappies, medical attention...

Study is good, but not to the point of anxiety. You do not need to have all the answers. That's a fool's errand and it will make you crazy. Focus on creating an atmosphere of love and joy in your home. Sure, study up on the preemie-care-fu you're going to need.

Before the twins come home, focus on preparing your relationship. You mentioned "we," so get with your "we" and work on becoming closer as a "we". Go away for a romantic wekend. Start to look for babysitters. Discuss how your lives are going to change and plan how you are going to make each other the top priority in your lives. Don't believe the BS about children being the first priority. Your "we-ness" (marriage?) sets the atmosphere of the kids' home and is the ground of these little people's earliest beings.

And you gotta keep your teamwork sharp because you're both gonna need it. You can't do this alone.

Speaking of teamwork, are these adopted twins? You mentioned a social worker. We've adopted three kids and fostered thirteen. I can tell you that your social worker is way overworked and underpaid. Be nice to them because, even if they aren't very competent or attentive, you need your social worker on your team.

That said, go around your social worker, not over your social worker's head. Be your kids' chief advocate and find resources on your own. Check into post-adoption services through your agency or other local agencies. Find a support group of other adoptive parents in your area, face-to-face ones, not just online. (Now!) Also, gather your network of friends and family around you. This kind of thing is why churches were invented in the first place, so if you attend one, find an applicable ministry there. Seems like every church has an early childhood group.

All three of our children got services of varying kinds from birth. Find out what adoption services there are in your state. There was a service called Early Childhood Intervention in Texas where a physical therapist came to our home and did therapy with our first two adoptees, who were what folks call "drug babies." You can probably find similar stuff based on the kids' needs. I know that many local charities provide services, classes, and special events for adopted and foster children.

Our attitude was that we were putting ourselves out there adopting these kids who need a home and we're going to not just let people help us, but ask them to help us. People benefit from being a part

Practical advice we got from an NICU nurse -- have them wear hats at ALL times. One of those little newborn beanies will do. They lose a lot of heat from their heads, so cover their heads and the energy they consume will go toward more growth instead of warmth. Our youngest was 17 ounces when she was born. The advice worked very well for her.

Second the recommendation of infant massage. But don't get very caught up in doing it "right." It's the stimulation of touch and interaction with you that is the big benefit. Also, spend a lot of time looking at them and talking to them face to face. Young infants get a lot from just seeing your face. They really are very simple.

My wife is a remarkable woman and she loves to take time to listen/talk to new adoptive parents. If you would like to talk further, me-mail me. We will do anything and everything we can to help adoption work for those who are brave and big-hearted enough to say "yes."
posted by cross_impact at 6:58 AM on December 21, 2009


2 general financial things too:

- Consider doing cloth diapers. They are so much cheaper. With 1 kid they pay for themselves within 6-9 months (depending if you line dry or use the dryer). They aren't really that much more work than disposables.

- Have you arranged for daycare yet if you're both going back to work? If you haven't gotten on a daycare list or 2 yet, do it now. Talk to your ped about "adjusted age" and starting daycare.
posted by k8t at 7:41 AM on December 21, 2009


Oh, regarding sign language... You don't need a book at all. It is the easiest thing in the world. I don't know a parent that isn't doing it right now.

In my experience, the primary signs that you'll want to start using are (listed by importance)

MORE
MILK
WATER
HUNGRY/EAT
DRINK
SLEEPY

We were pretty inconsistent about using them, but low and behold, one day baby just started signing more for some food. Last week we were on vacation with a family that did a slight different sign for water and the baby started using that as well. He also learned please from the other baby.

Most kids sort of invent their own signs - go with that!

There are more signs that are useful (check the rest of that site that I linked to), but aren't required. For example, kids says Dada and Mama quite early, so why teach the sign for Father and Mother?
posted by k8t at 7:49 AM on December 21, 2009 [1 favorite]


as for raising twins -- I'm fraternal twins with granted, and the best advice I can give you is to never, ever compare them to one another. our mother did a great job encouraging our unique strengths, and as a result, any jealousies were only ever minor. my friends were far more competitive with me than my twin sister. instead, she's always felt like my ally.

as for dressing them alike -- according to my mother, it was just easier. just buy two different colors of the same items. my sister was blue because of her eyes, and I was pink. also works great for telling them apart if they turn out to be identical!
posted by changeling at 9:06 AM on December 21, 2009


Best answer: Our twin boys were born in late April, due in mid June. They only spent three weeks in the NICU, but they were "big" (5 pounds each) when they were born. The NICU nurses were completely and totally awesome, learn as much from them as you can.

A couple of thoughts spring to mind...
  1. Get as much rest now as you can, you'll need it later and the NICU is a pretty traumatic place.
  2. If you/your partner (sorry no gender in your profile and I don't want to assume...) is planning on breastfeeding, start pumping now (the hospital probably already has you/your partner doing this). My wife ended up with a huge excess that she eventually donated to the local milk bank; a much better situation than not having enough and needing to deal with the disappointment of not being able to breastfeed.
  3. On that note this book and this pillow were invaluable. My wife also wears a ring on her index finger to note which side one of the boys eats from next.
  4. One positive thing to take away from the fact that they're in the NICU is that they will come home on a very regimented schedule. Keep this up when they come home. Even with the schedule being regimented we regretted not buying these. Your brain will not function normally when they come home, keeping track of the most mundane things becomes impossible without some help (we used a Moleskin notebook to track most things).
  5. Our boys are identical, but we only dress them alike to screw with the grandparents. We've found color coding things to work great for keeping everyone else sane (when they got to be about four months old something clicked for my wife and I and we can totally tell the difference, no one else can). This was really helpful the first time they got colds because we'd already established the color scheme and keeping things like binkies separate was easy.
  6. Bath time was a huge pain in the ass until we figured out how to bathe both at once (they freaked out otherwise), this has meant buying a bunch of different stuff as they've gotten bigger.
  7. It was impossible to eat when they were awake until we got them high chairs, we ended up buying chairs that attached to our existing chairs and I wish we'd done it months earlier. You'll quickly discover that twins cost a kazillion dollars, those chairs were way cheaper than buying two "proper" high chairs.
  8. Speaking of expense... be prepared for huge bills from the hospital, ours were in the neighborhood of $250,000 all told, yours will be higher. Our very good insurance still left us with a large chunk...
  9. Diapers are going to run you probably $40/week, pick a brand and buy the biggest box they have (Target, Babies 'R' Us, and Amazon fight with each other on the best prices, we're too frazzled to remember to buy from Amazon regularly) and join their rewards program since you're going to be buying a billion of them. (Unless you do cloth, and if you do you're a better soul than I. Hand washing ~20 diapers a day seemed too daunting and a diaper service didn't seem like it'd help the environment or the pocketbook. I plan on buying a rainforest to apologize to the planet for the diaper destruction caused by our twins).
  10. We attached one of the two cribs that we bought like a side-car to our bed (Google around if you want instructions, or simply remove one side and attach using ratcheted ropes). That gives them their own space to sleep in without us having to get up a million times a night.
  11. Hopefully you like your parents and your partner's parents, because for the first few months you're going to want one or both of the around for all things not related to taking care of babies, otherwise I'd invest in some Roombas and paper plates/plastic utensils
  12. Our babies are on apnea monitors for the first year of their life (their older sister died of SIDS), this presents all sorts of interesting problems. If yours end up going home on them feel free to MeMail me about how we've dealt with that...
There are probably a million things I'm forgetting (twins do that to you), feel free to MeMail me if you have more questions as time goes on....

Welcome to a crazy adventure.
posted by togdon at 9:13 AM on December 21, 2009 [1 favorite]


Response by poster: Thank you all very much!

I think at this point I will be Meta-mailing some folllow-up questions and answers to some of you. But the responses so far have been amazing.

Thank you, thank you, thank you!
posted by hgswell at 9:57 AM on December 21, 2009


It can be a very questionable place, but the Mothering.com forums do have a special section for parents of children who are preemies and in the NICU. It can be a very hit or miss place, and I limit my interactions on that forum to very specific sections and ignore others as all get out (like the vaccination forum----holy mother of all cans of worms!). But the ages and stages section, and I would imagine, and I really hope that the preemie and NICU section is one of love, support, and practical advice. At the very least, there are other parents there who are going or have gone through something similar.
posted by zizzle at 10:16 AM on December 21, 2009


I should add --- there's also a section on Parenting Multiples that may help, too.
posted by zizzle at 10:17 AM on December 21, 2009


Hi there. I had a preemie about 19 months ago. She was born 8 weeks early because I got very sick. However, today she's amazingly healthy and right on track.

Being a preemie parent is scary. It is unpredictable. But I think all babies are unpredictable. That's half the battle. You are given something for which you are responsible, but there's no documentation, no owner's manual. You have to make your own decisions about what to do. That's scary. But, if I have questions, I call the pediatrician. I found one who I like, who is very pro-communication and doesn't mind if I call about even the most mundane things. My thinking is, she went to medical school and has been a pediatrician for 20+ years; she knows what she's talking about. Also, the NICU will not let you bring the babies home until they are ready--and you are ready. Most require you to stay overnight in the hospital with them. You do a test run, with the nurses right there overnight in case you need some help or there's a medical emergency. That was incredibly stressful but it turned out fine.

My baby was smaller than she should have been, so she needed to "feed and grow." Plus, she had a persistant case of jaundice that nearly required a transfusion, plus a brain bleed (very common in preemies).


She couldn't really breast feed. So I felt very guilty. She couldn't latch on. (No baby can latch at 32 weeks; they can't even suck, swallow and breathe until maybe 36 weeks, more like 38 a lot of times.) I pumped but didn't get a lot of milk. But what I did get was like medicine for her. I did that for as long as I could. Then I switched to formula. She thrived on it. I think that was my biggest issue--guilt from not being able to breastfeed--but it maybe would have happened even if she wasn't early.

I had planned that I was going to deliver maybe a week after my due date, be able to breast feed perfectly from the start and have a roly poly baby to take home. That didn't happen, and when your plans are changed like that, especially when you're a Type A like I am, you get weird. I had anxiety--I'd lie awake at night thinking about all types of stuff that wasn't even related to my baby. Then I got chest pains. I went to the urgent care center, thinking I was having a heart attack. After a normal EKG, and until the PA asked me if anything stressful was happening to me, I never connected the two. I needed to take anti-anxiety medication every so often to help. The thing about it was my anxiety was completely irrational. I had a wonderful job that said take as much time as you need. I had (still do!) a fabulous husband who would get up with me in the middle of the night every three hours to pump (he'd wash out my pump parts for me so I could go back to bed). I had amazing friends who never said anything judgemental or snarky about having a preemie. There was no reason for me to stress out but I was.

What really helped me was to have a good relationship with the NICU staff. One of my baby's primary nurses also had preemies herself. She was amazing. When you have people who are confident in their ability to take care of your child, your whole outlook can change.

This may sound counterintuitive, but don't spend too much time at the NICU. I would go once a day for a few hours or maybe twice a day. But I was tired, I was recovering from my illness and also pumping all the time, which takes a lot of energy. I got some excellent bonding time with my baby in the NICU. But I always tempered my visits with the fact that preemies use a tremendous amount of energy to eat and breathe and need all of the rest and sleep they can get--I didn't want to intrude on my baby's growing time by bringing my stressball self there too often. This worked well for me and my husband.

The best coping mechanism I had was to talk with others in my own situation. It turned out that my husband's boss had preemies (twins) about 15 years ago. Of course the technology to identify and manage preemie issues has come a long way since then... but it was just so reassuring to see these beautiful, healthy, athletic, smart girls sitting at the other side of the table from us. They brought a scrapbook of the event and the mom talked about how to juggle things. Although I didn't have twins, it was awesome to hear the good and the bad about how to deal with a newborn from someone who had been there, done that. So, please try out a support group or two. Many people who have twins have some sort of medical issue and a lot of twins are preemies. So give it a try. Even my local MOMS group has been amazing--despite the fact that no one else had a preemie. The Preemie board on TheBump.com is also good.

I had an initial EI (Early Intervention) workup but have not needed ongoing help. But I wouldn't hesitate to take advantage of anything offered by your county or state. Applying for Medicaid and Social Security may be a good idea, too. Sometimes benefits are available. Do you have a pediatrician selected yet? Is there a children's hospital in your area?

I made the decision to stay home with her for as long as she needed me to. For me, that meant until about 9 months old, when she started noticing other children and wanting to interact with them. I really believe that her excellent progress and good health is from the time I was able to spend with her at home. And I felt like I needed that, too. She's been in daycare for several months and is doing really well.

You know how they say "One day at a time" is key to making progress with anything? Take that to heart. You can only do things one day at a time. You are one person and you will survive. Know your limits and observe them. I learned more about myself and my personality than at any other time in my life during this whole thing. I think a lot of people do. It changes your whole outlook on life. There is no "typical" preemie experience. (Or twin experience.) Do the best you can! You are on the right track. Best of luck. Feel free to private message me...
posted by FergieBelle at 10:40 AM on December 21, 2009 [2 favorites]


I forgot to add: Another thing that helped me was taking care of my baby in the NICU. Every 3 hours, they'd take her temp, change her diaper and then feed her. I would schedule my visits around those times for the chance to glance at her awake. I was terrified the first time I changed her diaper, but soon grew to look forward to it. (Mostly because I could actually touch her.) So I highly recommend that if you are able to do that now, or anytime in the future.
posted by FergieBelle at 10:43 AM on December 21, 2009


I had twins in the NICU for a month, very tiny but otherwise no issues. We spent a lot of time just holding them next to our skin. If you have any issues with bonding, holding a baby next to your bare chest will cure you.

Otherwise, you won't get much sleep but you'll have a lot of fun and I think it gets easier than a singleton after a year or so.

Also, a baby bjorn and a backpack are much cooler than a stroller.
posted by mearls at 10:56 AM on December 21, 2009


Don't worry -- preemie diapers are available in stores. We found them at Target for our twin boys (born at 37 weeks, each about 5 lbs, spent 1 week in the NICU). Unfortunately they only come in small packs which may be a problem if your babies need them for a few weeks. I wish I had more time to write some advice, but for now I'll tell you that life will be very difficult for the first year, but things get awesomer and awesomer as the babies start sleeping through the night and then do fun things like interact and walk.

My wife prefers to dress them in coordinating outfits (either color coordinated or similar designs with different colors), but they look pretty darned cute when they're in matching PJs.

we ended up buying chairs that attached to our existing chairs
I recommend that you go this route as well, although keep in mind that kids get food EVERYWHERE. So if you don't mind your regular chairs getting all manner of dirty, it is probably worth the $ savings.

Best prices for formula and diapers are at Costco. The annual membership is well worth it.
posted by puritycontrol at 10:59 AM on December 21, 2009


Best answer: congratulations on the babies! hang on to your hats, it'll be a wild first year! In my experience, much if it was a blur. (though we did have the added challenge of their 19 month old sister.) My parents gifted us a video camera and I took a lot of video. Hopefully we'll have time to watch it someday and be reminded of all the baby things they did.
nthing so much of this, especially togden.
Our boys weren't preemies (they are 2.5 now) so you will certainly have more challenges than we did, but things we found essential were: 1. writing everything down- feeds, diapers, naps. We just used a notebook. Sometimes we were so fried from sleep deprivation we could have just changed a baby and couldn't remember which one.
2. color coding is damn handy. bottles, pacifiers, etc. Helps a lot so you don't have to think too much about what belongs to who. Clothes, to some degree. People think it's cute to dress them alike, sometimes we do if someone gifts us matching stuff.
3. if the babies are breastfeeding, the nursing pillow togden linked to is totally a necessity. this one. Don't know where you are but I have one if you want it.
4. as soon as they were old enough, a schedule. From all I've read about NICU babies they will probably be on one. Take advantage of that. I think our schedule/routine is as much for me as it is for them. It's also a great help for when other people take care of the babies.
5. get a babysitter asap so you can get some alone time with your partner. maybe someone who can come over and help out while you're home, at first, and then later (when the kids or older or whenever you feel comfortable) when you go out. I am home with the kids (the twins plus their sister who is 19 months older) and for a long time I think felt like the situation (three kids under the age of 2 and then 3) was too much for anyone else to handle. Money was tight so we couldn't really afford a babysitter. We just took it one day at a time. We did have some help from family (including our niece moving in with us for a few months to help with the babies, but she had a full time second shift job so she was home in the day with me but left about the time my husband got home) and we should have taken more advantage of all the people who offered to watch some or all the kids so we could go out, but I felt like they just said that because that's what some people say when they see cute babies. They might even think they mean it but they're probably never had 2 or 3 crying or poopy babies at one time. My husband and I got virtually no alone time together and it was very tough on our relationship. They boys were over a year old before we left them with anyone other than our niece or my parents. In retrospect I wish we had placed more priority on making time to be together, away from the kids. We do now, but the kids still pose a challenge for whoever is watching them. It just doesn't bother me as much, now. It's different as they get older, not as hands-on, I guess.
Best wishes and hope you enjoy your twins!
posted by phogirl at 1:37 PM on December 21, 2009


Nthing the infant massage and anything you can do to touch them. Google Tiffany Field for data on that.

Also, anything you can do to reduce the sensory overload of the NICU will bear fruit later. These are babies who should be in the womb-- and the NICU is overwhelming for a sensorily normal adult. Anything you can do to reduce lights, noise and intensity will help them grow better-- and the more time you spend in skin to skin contact, the better it will be for bonding. The most important thing new babies need besides food is skin to skin contact and nurture-- growth hormone isn't released unless they get physical affection from the same few people over and over. That's why "runts" are small and why babies in orphanages develop "failure to thrive" AKA don't grow. So, anything you can do to touch and nuzzle and be physically with them will be good.
posted by Maias at 4:48 PM on December 21, 2009


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