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Mentally Preparing for NICU - xpost with NICU

1245 Views 20 Replies 15 Participants Last post by  obxbound
Hi everyone. I need guidance and suggestions on how to mentally prepare for a NICU stay. I have all sorts of fears I am trying to confront from breastfeeding to being apart from them. I was premature and spent a month in the hospital. My mom used to tell me the story often on how hard it was for her to leave me. It's part of my birth story. Part of who I am. (she's been very careful since we found out about them being momo)

I went to the NICU on my hospital tour and was able to speak with the staff, but was unable to see babies. I've just started feeling like I can confront my concerns and have started reading this board. I'm trying to work through my fears and would appreciate any suggestions for how to best prepare for the stay.

Tina
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I don't have multiples but wanted to stop by and give you a
. I worked about a year and a half in the NICU and usally work there a couple times a month. The biggest advice I can give is tour the NICU your babies may be in. Look around and ask questions. A lot of the wires and tubes look overwhelming to parents. If you know what each wire or tube does sometimes it eases that anxiety a bit. There's things that only you as mama can do like give them a great start with breastmilk. If the little ones are born a little early they will start you pumping immediately after birth. That milk will help them grow and thrive and they need that from you. Most NICU facilities are all about the liquid gold thankfully but if not just make sure you request a hospital grade pump while in the hospital to pump with. Kangaroo care is a great way to bond with your little ones and help them stablize their respirations and oxygen levels. It's where they do skin to skin on your chest. I can't really think of anything else I'd tell a parents but just don't be afraid to touch them and don't be afraid to ask questions. I hope this helps a little bit and I hope you have an uneventful and smooth pregnancy.
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Well, this is still fresh for me!

1. read up on kangaroo care and have evidence based research to quote for why you want a lot of this

2. start explaining you want to fully b'feed NOW and get hooked up with the hospital feeding co ordinator/ a lactation consultant for your plan of action a.s.a.p.

3. write out an affirmation that 'I am their mother' or some such thing to read before and after all hospital visits

4.pump 'too frequently'! no matter how small the drops of colostrom seem

- your milk will come in and be abundant

5.get a snuggly toy you can make smell of you for when they are born (if your nicu allows) to leave with them

6. NEVER feel guilty for asking questions

7. get healthy snacks ready for when you will miss meals.

8. don't miss meals, but see number 7 for reality check


9. stay strong mama. it will pass. and each hour gets you closer to them coming home.....

10. take things hour by hour

11. get some aconite and take it, as you will probably be in shock no matter how you prepare


It was a HUGE comfort for me that they were in there together.


You are doing such a fab, fab job. Remember this.

lots of love to you.
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Thank you so much for your hugs and your replies. I actually couldn't quite make it through the comments without crying. This is going to be very difficult for me, but by asking questions now I feel like I am preparing myself as much as I can.

Thank you.
I think, for me, KNOWING that my kids would be in the NICU -- they were mono/di with TTTS -- was helpful. Just knowing that I wouldn't just give birth and then take them home the next day, etc. My expectations were pretty low, and so I was pleasantly surprised that they were only in the NICU for a week, and then the pediatric ward for 3 days. They were born at 34 weeks. It's been almost 6 years now!

I send you big hugs. There is someone else on here with mo/mo twins, I think its Vanuaken.
You're so wise to be as prepared as you can be for possible NICU time. Although I can't help with NICU suggestions, I can send my full support.

Once you're as ready as you can be for a possible early birth of your twins, take a deep breath. We twin mommas walk such a careful line. You want to be mindful of all PTL signs, but many of those weird twinges are normal and not a cause for worry. Remember to stay positive, eat lots of protein and stay hydrated!

Best wishes for carrying those babes.
obxbound,

Your post really touches me for two reasons: I was a month early and my mom always talks about it (NICU and being apart from me) and I know what you mean by it being part of your story. And, our second son spent 12 days in NICU which is nothing compared to so many, but it was so hard to be away from him!

I want to echo what others have said about pumping as much as possible. Our NICU was great about taking the bottles of milk and storing them for our DS.

There've been so many good ideas, the only other things I would add are

(1) If your NICU doesn't practice kangaroo kare, drop them and deliver somewhere else that does. Our NICU would not let us hold our son (born 35 weeks) because it would 'burn calories' he needed to grow. They had no interest in discussing kangaroo kare or contradictory info. It was their policy to never touch the babies except to change their diapers or every 3 hrs. at feeding time.

(2) We pushed the envelope, but I wish we had been even more agressive. Your delivery, your children, your decisions. My two cents: Insist on having things your way or being told 'back off'. At least you'll know you did everything you could.

(3) If you're having boys, consider not circumcising them. Or have it done later, at the very least (most NICU's wait with premies anyway I think). They've got enough on their plate without additional pain.

(4) Clarify the benchmarks. Our doctor wouldn't let DS go home until he could take a certain amount from a bottle in a certain time. No matter that he was nursing like a champ and we don't even own any baby bottles! Their expectations didn't fit reality, but we were stuck with them b/c we failed to clarify in advance.

When DS finally came home we ramped up the baby-wearing (which we hadn't done much of with first DS) to help make up for the separation.

You're such a good momma to prepare in advance like this! They'll do great and be home before you know it.
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First, {{{hugs}}}
Our NICU experience was really not so bad, because we were lucky enough to have "feeders and growers" who never developed any problems. And also I think it helped that I had visited the NICU beforehand, and that had actually been a reassuring experience. I did not really read about NICU stuff beforehand, because I was just in denial that I would need to know it, but I think that may have actually been better for me.

In response to the post right above mine, a lot of things in NICUs are policies that don't have wiggle room. For example, our NICU did not co-bed twins. Not negotiable, it was hospital policy not to allow it. I thought it would bother me more than it did, but it didn't end up being an issue because they only got into open cribs a day before they came home (temp regulation was their last hurdle to get out). Really, my advice is to just go with the flow and with the NICU rules. Pretty much all NICUs are going to want the babies taking their feeds with bottles before sending them home. My guys nursed 1-2 times a day and the rest were bottles, in the NICU. They were exclusively on the breast pretty quickly at home. The neonatologist wanted to add human milk fortifier to their milk in the NICU; while he was very clear that I could ask not to, that it was my decision in the end, I just said whatever, go ahead and do it. I didn't want to rock the boat at all, I just wanted my babies home. They never added the highest concentration of HMF they can add, and the babies tolerated it fine, and I just ignored the advice to add formula powder to their bottles when we got home.

Basically: you have a great chance of getting to 34 weeks. I pray that you do. So assuming you have 34 weekers, all you're going to want to do is to get them home as soon as possible. Whatever they have to do to get out, they just have to do it, and then once they are home you can do it all your way. I hope they are not there very long at all! (My guys were 30w6d and only in 25 days/3.5 weeks...it could be super fast for y'all)

I'm surprised by the responses about NICUs that didn't really do kangaroo care. I thought it was standard of care now. Our NICU was really wonderful all around. Wonderful BFing support, incredibly pro-BF really, a beautiful space, just redone, nice and quiet and peaceful and they encouraged as much kangaroo care as we wanted. We were hands-on with everything. We called it the 5-star NICU
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Read this book. It was a lifesaver for me, in terms of knowing what to expect and reading tidbits from other parents. I thought it was informative and gentle. Also, it might help to get acquainted with some of the medical lingo that you might encounter (i.e., what's a cannula or an oscillator or nitric oxide or any of those other crazy things that parents should never have to know). This book was helpful for that.

And I second what a PP said: be pushy if you need to. I hope that you will be in a NICU that is extremely pro-BF and pro-kangaroo care, and welcoming to parents. But many of them are not. We had to push really hard to be able to do kangaroo care, and I was only allowed to nurse the boys once or twice before they came home. We really felt like we had to convince the nurses that we weren't idiot junkies before they would even let us participate in the care of our babies in any way. Not all of them are like that, but it's something you might want to be prepared for.

I hope that helps. Plese keep us updated, as I'm sure we will all be thinking of you. Here's some
: for you in hopes that you will have little or no time in the NICU!
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here are my additions to the great suggestions above:

1 - nursing - a) find a lactation consultant outside the hospital who has experience w/multiples and preemies, and see them while you're pregnant. have her come to the hospital with you if your babies are in the nicu. b) immediately after babies come home, be sure to have their tongues evaluated for tongue tie! c) find out about getting a milk donor if your supply doesn't come rushing in, and bring the donor milk in for your babies (i wouldn't tell he hospital, tho!!). d) know that preemies usually "click" with nursing between 42 and 46 weeks gestational age. e) learn about infant paced feeding and know all about herbal & prescription galactgogues. you can read so much at http://www.lowmilksupply.org.

2 - bonding - a) find a digital frame or ornament or something you can record yourself singing or talking to them, that can be played when you're not there. i so wish i'd done this. b) get a moby wrap to use for kangaroo care. dads can do k.care too! i even had my best friend & sister kangaroo the boys, as i knew that the skin-to-skin contact would benefit the boys. c) find out if you can room in at the hospital. d) bring your own clothes if you're allowed to.i really loved seeing my boys in our own clothes, even tho i usually took them off when i left because i didn't want to lose them. you can also decorate their sleeping places.

3 - contact your local march of dimes coordinator - nicus usually have one.

4 - if you take infant cpr at the nicu, ask the teacher to come to the bedside and practice holding your own baby in the manner you must hold them for cpr. after my twin had apnea at home, i insisted on a refresher in which i went through the motions with him. this was very helpful in breaking through my horrific fear of doing cpr on him.

5 - photograph everything. you won't regret it.

6 - get involved from day 1. ask for one nurse to coordinate your babies' care. change diapers, hold baby near your breast for procedures if you can bear it, dress baby, give baths, change bedding.... anything to be in the center of their care. you might even be able to get hospital meals in the nicu.

those are the things that come to mind. you can read my experiences here - nicu posts are from most recent back.
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I had an emergency induction for severe preeclampsia at 33 weeks. My twins were in NICU for 2 weeks.

1. I found it really helpful to KNOW from conception that my twins had an extremely high probability of spending time in NICU. I think expecting NICU as an inevitability in my high-risk pregnancy, instead of dreading it and bemoaning their presence in NICU lessened the stress. I would say accept that the twins will spend time in NICU.

2. I found it helpful to focus on gratitude that NICU had the technology to keep my babies alive and help them thrive. I tried to focus on how the relief that this particular tube would give my daughter nutrition even though she couldn't nurse or suck and that this particular vent could help my daughter breathe when she couldn't do so well on her own. In part, you can influence your feelings by choosing your perspective and what you tell yourself about hte experience. The contrast is "OMG, all these tubes in this poor little baby" when this poor little baby wouldn't be alive without it.

3. Realize MOM MATTERS to them!!! My daughter was freaking out because she was getting a Baby Lo Jack Anti-Theft Device attached to her ankle. I picked her up and she immediately stopped crying. I tried to talk and touch them and let them know I was present.

4. I had never anticipated how difficult it would be that other people's babies would be so ill and so fragile. It's wretching to imagine the pain of the mother unable to hold her baby even after two months in NICU while you get to hold your feeder and grower and let them wear cute baby outfits. Babies have to achieve a certain level of stability to be swaddled or dressed in clothes.

5. I found it extremely hard to have my baby called Baby A and Baby B when they had names. THe staff have different sensitivities to this.

6. I wish I had realized and prepared myself that your little baby crying is of no concern to the nurse. As a new mom, my perspective was "OMG, my baby is crying!" Their perspective: that baby is well enough to cry when many babies here are too ill to cry. That crying baby is GREAT and a low priority.

HTH
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Quote:

Originally Posted by Purple Cat View Post
4. I had never anticipated how difficult it would be that other people's babies would be so ill and so fragile. It's wretching to imagine the pain of the mother unable to hold her baby even after two months in NICU while you get to hold your feeder and grower and let them wear cute baby outfits. Babies have to achieve a certain level of stability to be swaddled or dressed in clothes.

oh, my... yes. this is so very true. heart wrenching on both sides. discharge day for other families was so hard for me, and i found very little sensitivity to this from the staff or other parents. when our own discharge day came, i noticed the other mom wasnt there, and i left her a card. i just felt so sad for/with her.

the advice, reflections, and experiences you're all sharing are so moving. thanks, even though this period is over for us, i find your thoughtful remarks so moving.
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Also, swap numbers with some other mums if you can - I found so much relief last week in hearing from two mums who were in there at the same time. It helped me to get some perspective on the level of care in there and completely normalised my feelings which felt soooo good!
Quote:

Originally Posted by celesterra View Post
5 - photograph everything. you won't regret it.
yes!
It can be hard when they're in the isolettes, and the lighting might be bad, but keep trying. I'm glad I have NICU photos.

actually I *really* regret not taking photos of Toby in the hospital last week, with his oxygen cannula and cute little baby hospital gown,since it's a part of his life story...and it ocurred to me while he was there,but I felt awkward asking somebody to bring me a camera, and I so wish I had

Reading all the comments here makes me realize how amazing our NICU was. Wow, we were so lucky! I have to agree with other posters that often seeing other babies was very difficult. There were triplets born very early while we were there, and one didn't make it, and that was so sad.

Oh I thought of one more thing: at some point I was by my guys' isolettes and I was crying, and the neonatologist came by and was basically like why the heck are you crying when you have such healthy babies? I wish I had been able to just ignore him. There was no way he could understand the emotions I was going through. Sometimes the NICU staff has a different perspective because so many babies are so sick, and if yours are less sick they view them as healthy...even though obviously they are laying in isolettes in the NICU so they aren't exactly totally fine. But I guess my advice here is to ignore the people who don't understand, and take advantage of it if you have any particularly supportive nurses. There were a few nurses I just adored, and I actually requested that they get assigned to my guys if possible.
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I will write more later, but right now I just have to say that I am completely overwhelmed by all of your stories and support. Thank you.
I was lucky my babies ended up being full term, but while I was pregnant, I got a lot of support and information from my local LLL group re: NICU time and breastfeeding. Other moms could share first-hand experiences or second-hand info about specific hospitals and their policies . . . and for me, personally, having lots of information has always been reassuring. I knew that I had phone numbers of people to call when and if I needed help or another opinion on feeding issues in the NICU.

Best of luck to you and your family
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Just by being open to thinking about the NICU now, you are starting the mental preparation. If you think you will probably have NICU time and prepare for it, you will be happily surprised if things are easier than you fear and prepared for it if things aren't as smooth as you like.

One thing I did during my pregnancy was I read some of the posts in the NICU parenting forum here early in my pregnancy. As I got closer to meeting my babies, I did less reading about the NICU because I wanted to be able to take each day as it came without unnecessary worry. But, by reading the posts early on, I had a sense of the concerns that might come up.

Find out if there are support services offered through the hospital for parents with babies in the NICU. I took advantage of a parent buddy program, where parents with kids in the NICU were paired with parents of NICU grads, and a support group for moms pumping for babies in the NICU. Both were very useful.

Also, find out where you can expect your room to be if you have kids in the NICU. Where I was, mothers with kids in the NICU weren't transferred to the postpartum ward, which was on a different floor from the NICU. I really appreciated that I wasn't on a floor full of moms with healthy babies and it was nice to be able to be wheeled quickly to the NICU during the first 2 days of my c-section recovery. There was a woman on the floor who had twins and one was in the NICU and one was with her. It broke my heart every time I heard the healthy baby cry because I wanted to have my babies with me.

I didn't have to fight much for what I wanted from the NICU, but I did have my nurses tell me to stop pumping so often so I could get some rest. I am so glad I didn't listen to them. I pumped every 2 hours without fail while I was in the hospital and was able to get my supply up quickly.
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Just read your blog, and after reading all these posts, I'm so in tears! Hugs to you, mama, and to all the mamas with NICU experiences behind them. There is so much about the NICU that is hard, but for me, the very experience made me a mother. I know you are already a mama, but just as the NICU is part of the fabric of your life and your parents' lives, mothering in the NICU will add a layer that is so rich, and textured with love, and will forever weave its' experience into your day to day life.
My NICU experience was with my singleton, ironically, my twins were homebirths. You have gotten so much great advice, the only thing I would say is to really trust in your intuition, get out into nature each day, and believe that you CAN have the best experience suited to your babies, yourself and your family.
Know that I will be cheering you on from the sidelines, and I'm sure every mama on this board will too.
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I'm kind of with mama_tigress: I just wanted to let them do what they needed to do so that I could get my girls home. Um, what to add to all the excellent posts above . . .

-Remind yourself that your babies are where they need to be. The NICU was gut-wrenching at the time, but I was so grateful that it existed. And now that I have my almost-toddlers, these beautiful girls with their bright eyes and infectious giggles . . . I am even more grateful for the wonders of CPAP and artificial surfectant and all the rest of it. No, it's not how any baby should start. But my girls wouldn't be here without it. It's helpful to remind yourself why you're doing this awfully hard thing: it's so your babies will live.

-Expect setbacks. Expect weirdness.

-They're yours. They're yours even though they don't come home with you. You are being a loving mother, even though you'll feel like crap when you drive home from the hospital and leave them behind. You aren't crap, you are a loving mother who is seeing that her babies get the best possible care.

-As a fellow momo mom: do rest when you get home. It feels bad to say it, but after that long hospital stay and a c-section (normal momo protocol), the babies' NICU stay does have the benefit of letting you get a few weeks of full-night sleep (minus getting up to pump). Take advantage of it; it's the best thing you can do for your babies, because you will be ready to take care of them when they come home. It's okay to be relieved to be out of the hospital, even if your babies are still there. You can get their home all ready for them.

-In my experience (YMMV) getting breastfeeding started doesn't have to happen in the NICU. I tried nursing a bit in the NICU, but we didn't really work on it till they got home, and they didn't get it till a month after they got home. Pump like mad, of course, but don't freak out if your babies take awhile to learn to nurse. They're busy learning to breathe.

-Don't be afraid to ask the nurses questions. Our nurses were so great about letting us know we could call any time, even at night, just to ask how the girls were doing. We visited every day, but it was good to be able to call before bedtime, just to see how the little ones had settled in for the night, and to talk to the night shift nurse. Almost all the NICU nurses I met loved their job and loved the babies, and were more than willing to talk to us about our girls and about what to expect. They were wonderful. Ask lots of questions - or don't, if what you want to do is just to sit and cuddle with your babies.

-Sing to your babies. This is my most frivolous suggestion.
But I would run out of things to say, or I'd find that saying things like, "we all love you and can't wait for you to come home" would choke me up too much, but I wanted them to hear my voice while I was there, so I'd sing to them, just softly, while I held them. They still love to be sung to.


I don't know what the future has in store for you, but if it's any encouragement, I was where you are last year, and now we're all home, safe and sound. And they're the sweetest babies in the world. And you would never, never know that they had the rough start they did. They're attached and healthy and happy and loving and loved. God bless you. May you have the shortest possible NICU stay, and may it be entirely uneventful.
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