Advice/reading materials for having premature infants in the NICU
August 6, 2014 6:58 AM   Subscribe

Our 27-week twins were just diagnosed with TTTS. It's kind of a watch-and-wait thing at this point but they most likely will be delivered in the next few weeks.

I read this question and found it very helpful but I'm looking for two more things -- advice specifically for the first few days, and also suggestions for books (or websites) I should read. I have a little time to get ready here, and I want to get some sense of what it will be like beforehand so it's maybe a tiny bit less terrifying.

Also, if anybody has any advice on having twins specifically in the NICU that'd be helpful too.

Thanks, metafilter.
posted by gerstle to Health & Fitness (10 answers total) 3 users marked this as a favorite
My two favourite very small humans are a pair of TTTS 27-weekers! They were in the NICU for 8 weeks and 11 weeks, and are both now thriving and hitting all of their adjusted milestones, though one is smaller.

I am not the parent of these twins so I have very limited suggestions, but I would find out the following:

1) If you are planning to breast feed, what is your NICU's procedure for expressed breast milk (EBM)? In the hospital they are likely to give you a hospital-grade pump; you can also buy or rent one for when you get home. If you are in the US, there may be insurance involved here, and you will need to know how that works.

2) What is your NICU's policy on kangaroo care and when can you expect to start that?

3) It is always changeable with twin pregnancies, but if you had been planning on a vaginal birth and are now likely to have a scheduled c-section, it's OK to be sad and/or disappointed about that. Maybe you don't care, and that's fine too, but if being disappointed, even with the best c-section outcome you can have, is OK too. Don't let anyone make you feel shitty; you are having your own experience here, it's not just about the babies.

4) Get in touch with the TTTS foundation -- they boards are apparently very helpful. They have 15 questions to ask, and a medical plan planner that has good suggestions.
posted by DarlingBri at 7:44 AM on August 6, 2014 [1 favorite]

The Premie Primer was the best of the books I read, written by a OBGYN who had preemie triplets so she walks both sides as a doctor and parent. Highly recommended.

I also loved Half Baked as a sort of emotional guide to the NICU experience that made me laugh and cry, often at the same time.

Talk to your NICU about the physical arrangements for twins - will they share a room, will they be side by side, will they share a nurse, etc? (a lot of NICUs, most of them now really, assign a single nurse to a caseload of 1-3 babies on-going, rather than rotating care). I asked about baptisms too, because that mattered to us and we were able to do a baptism in the NICu with some alterations.

If you have a scheduled C-section date coming, tell people in your life who can start doing housekeeping, cooking etc for you. You will have so little free time outside of the NICU and work/recovery, that organising people to help now will help when you're overwhelmed later on.

The babies won't be able to nurse for several weeks so they'll be relying on pumped breastmilk. Get the BEST electric pump you can rent/buy, and find out about being able to pump at the NICU ward. Talk to the lactation help at the hospital ahead of delivery about medications to boost milk production. At 27-30 weeks, a pregnant body isn't quite primed for milk, and without a latching on baby it can be hard and slow-starting. Knowing how to hand express the colustrum and what to expect early on will help. And if not - does your NICU allow donor milk? Is there a donor milk bank (is it covered by insurance?) or do you need to 'source' your own from a healthy friend with a newborn? They won't need much at first, but at 40 weeks when our daughter came home, she was almost past my meagre supply and eventually went on formula, although she co-nursed until she was over two years old! Twins will need a lot.

Confirm that they'll allow kangaroo care for the dad too - my husband said that was very meaningful for him.

Also what helped emotionally for me was: one nurse made little cute name badges for each child's crib - ours had cartoon kittens in pink sparkles, and is unbearably precious to me, ditto the laminated icon and plastic-bagged (to prevent germs) tiny rabbit that were taped to her crib. Your NICu might allow tiny handknit hats etc. Personalizing and decorating the cribs seems twee but it's hugely important emotionally. We had lots of photographs and video, that helped when one parent only could be present so you didn't feel like you missed out on moments, but what I remember most was reading to her as she slept in the crib.

I wouldn't share the photos on facebook etc. Non-NICU people freak out because there's the equipment and the babies are odd looking, which I promise you will completely melt away in a few days - 'regular' babies will appear to be huge sumo-like infants. It hurts when even well-intentioned people express alarm or look startled over what to you is an adorable baby photo. Save them for grandparents and other NICU parents.
posted by viggorlijah at 8:30 AM on August 6, 2014 [4 favorites]

Visit the NICU and talk to the neonatologists if you haven't already. It will help a lot if you aren't seeing it for the first time when you're going to see your babies.

Depending on when they come out and how big they are, the hospital may not start feeding them right away because of the risk of necrotizing enterocolitis. You will probably be exclusively pumping. Whatever you pump, save for when the babies are ready to eat.

Kangaroo care is important for both of you. It will help calm you and it will help your babies.

Expect it to be a long roller coaster ride. My cousin had a 27 week singleton who is now a smart, sassy second-grader, but there were a lot of ups and downs in those first three months. There will be crises.

It depends on the babies' condition, but if your husband has time to snap a few quick photos before they get hooked up to all the equipment, it'll be nice to have some newborn pictures where you can see their faces. It's a very personal decision if you want to publicly share NICU photos - I don't think it's universally a bad idea, though.

Finally, you will not ever want to leave. But you have to leave sometimes. This is a long and draining ride and you cannot live at the hospital for three months. You should be able to call and ask about your baby at any hour of the day, though.
posted by telepanda at 8:42 AM on August 6, 2014

I'm not sure this is what you are looking for, but I enjoyed watching the TV show 19 Kids and Counting during season 4 when their premature baby was born. There are a lot of scenes in the NICU which may give an idea for what to expect; it shows how the other kids talk about the new baby, things the family did as a whole to take care of the baby. I found it really heartwarming, as well as making the whole thing look more normal and part of life, rather than very clinical.

My own daughter was 5 weeks early but that was many years ago, and watching that season of the show brought back a lot of special memories. A lot of people have trouble with the Duggar family being too fundamentalist and too large, but if you're ok with that, it's a nice show that shows how a family handles a very difficult situation.
posted by CathyG at 9:47 AM on August 6, 2014

See if there is a local parents of multiples group in your area (Google or NOMOTC can help you find one). We belong to one and many of the families had NICU stays. It is a great way to connect to parents with similar experiences and share and learn.
posted by zsazsa at 4:26 PM on August 6, 2014

Relevant Facebook groups: Peek-a-boo ICU, Life after NICU, Project Sweet Peas

There are a lot of preemie books and memoirs out there - I seem to go against the trend, because I did NOT like The Preemie Primer - I found it terrifying and depressing. I also didn't like Half Baked, as I found the author complainy and completely distrustful of the NICU doctors, and I didn't like being in that mindset while I relied on those doctors to care for my daughter.

Books I did like: The Preemie Parents’ Companion, Preemies, Newborn Intensive Care and The Birth of a Mother (while there is only one chapter dealing specifically with premature birth, the exploration of what happens mentally and emotionally to the mother during the months of pregnancy was extremely enlightening. It’s important to realize that not just baby’s time in the womb is cut short, but also the mother’s preparation for her new role.)

Yes to renting a hospital grade pump and doing everything you can do provide breastmilk and maybe eventually nurse your babies - but don't let it consume you. Everyone from doctors to lactation consultants will be on your case about it and it's hard. It's regular breastfeeding guilt trips times 1000, and that stress will not help you with milk production. Do your best, and if they have to be supplemented or switched entirely to formula, do not feel like a failure.

Ask about resources at the hospital where the NICU is at - everything from parking and cafeteria passes to Ronald McDonald House for staying the night or getting meals to a literal library of resource books or kids books to read to your babies. Ask about financial counseling - your babies may qualify for SSI based on birth weight or for state aid as a secondary insurance. Take advantage of all offers of help, no matter how vague. Be nice to the nurses, but stand up for yourself if you have any concerns. Do what you can to make the NICU room feel homey, but do go home and sleep at night whenever you can. Make friends with the other parents there with you.

One small thing we did was bring in some of my daughter's things from home like her fancy pink bathtub. It had an infant sling and was way more comfortable for bathing her than the standard hospital baby tub, and all the nurses loved it. I felt good using the things we had bought or been given for her instead of waiting months for her to come home to take advantage of them.

Last thing, it seems like parents really hit a wall 6-8 weeks in. You're tired, you're physically worn down, it seems like it's never going to end, you're sick of the commute and the food and the routine. It gets better after that, and if you know the wall is coming, it's a little easier to deal with. We were there for 19 weeks, and the 7th week was by far the worst of all, even though my 25-weeker was doing fine at the time.
posted by peanut_mcgillicuty at 7:11 PM on August 6, 2014

I agree for the pumping - at one point I was pumping every 3 hours, my kid wasn't gaining weight and it was awful. She was failure to thrive before the pediatrician went possibly you can supplement with formula, and in hindsight, I wish I had started earlier. Formula saved her life and my sanity. I love formula.

However when they're in the NICU, breastmilk makes a bigger difference than at term. My NICU didn't allow donor milk which still makes me so angry, and I wish I had been together enough to pushback and do what I suspect another family there did, turn up with the bottled breastmilk and say they were from the mother when they were actually from a relative with a young baby. Breastmilk, even donor milk, makes a significant difference to preemies over formula for preventing NEC (do not google this now, talk to your pediatrician first, then google the research papers, but don't do a general google, it's not worth the stress) and this is worth putting in the time and effort on pumping and sourcing donor milk. Definitely stop pumping if it's not working and switch to donor milk earlier, but formula should be a last resort in the NICU.

Oh, and figure out food. You will be eating at or around that hospital for the next 3 months. If people want to help, ask them for restaurant vouchers for chains nearby so you can escape to get a meal that isn't hospital cafeteria. A decent meal or coffee place makes such a difference in morale. A family in the NICU used to have their in-laws come every day with packed lunch and drinks, and I envied them so much.
posted by viggorlijah at 8:48 PM on August 6, 2014

I wrote a blog about our experience in the NICU, as I really couldn't find any other resources at that time.

Our baby was born at 25 weeks and 2 days and is now a thriving 2.5 year old. One thing that really helped me was to get a copy of the reference material I saw the doctors reading all the time. Where I was it is Neonatal-Perinatal Medicine - Diseases of the Fetus and Infant by Avroy A. Fanaroff and Richard J. Martin. This was very handy as where we were there were 8 neonatologists on rotation, and they all had different takes on things. Some would say a procedure had "no risk at all". The next doctor would say there is increased chance of blood on the brain. The book, though intensely technical in parts, is actually easy enough to look up a issue/procedure and find the risks, mitigations, techniques etc. For example, going on oxygen, though much more likely to keep them alive, does increase the risk of retina detachment ... so I asked about that, and actually our son had to have eye surgery to remediate this. Once I started reading that book the doctors blew off our concerns a bit less.

Emotionally I'm not sure how you could prepare for life in the NICU. It is its own world and to see your baby in that condition ... its tough. I'm tearing up at work just thinking about us going through that 2 years ago. So, be ready for a rollercoaster is about the only way I could say it. I would say try to be there with your baby as much as you can. Read to them, sing to them, the staff can guide on on what is and isn't allowed. Kangaroo care is just incredible, we truly saw the effects of it just as the doctors told us we would. If you are like us, your life will narrow down to the NICU and essentials and thats it as basically every spare moment was spent in the NICU.

Just reread your question and realised you asked for advice for the first two days - its likely the doctors won't have any long term projections. Initially they will be focused on the next few hours, and as things progress their view extends further into the future. The first two days could be smooth sailing, or there could be all sorts of emergencies. I would get to know the staff, the equipment, the medicine, what it means, what it does, when that machine makes that sound what does it mean?

Memail me anytime, be thinking of you and your family and pulling for you.
posted by Admira at 10:55 PM on August 6, 2014

Thank you so much, everyone. It really helps to read about your experiences and get more reading materials. I've started a couple of these books already. We're pretty stressed out right now, just waiting to see how long we're going to make it, and being able to think about it and plan for it even a little bit makes me feel a lot better.
posted by gerstle at 9:17 AM on August 7, 2014 [2 favorites]

My advice would be to reach out to other parents of preemies via blogs or facebook (there are lots of groups) and also to reach out to the NICU nurses -- you will spend most of your time dealing with them and having a good relationship with your primary nurses will do a lot for your mental health. Also, most hospitals have a social worker assigned to the NICU, I would find out who that person is and talk to them before your babies arrive.

I'm sorry you are dealing with this stress, my best wishes to you and your little ones.
posted by blue_bicycle at 9:36 PM on August 7, 2014

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