Preemies & your personal NICU Experience...

[Ganesh78]

Hi there mamas ~
I am a RN working towards my L&D specialty. I am currently focusing on a paper about families' personal experiences with their preemies in the NICU/SCN. I would love to hear from anyone about their experiences especially as they relate to the attachment process with their babes. Also with a focus on staff (mainly nursing) and what they did (or did not do) that was encouraging and supportive.

Thanks in advance

[Mrs.Music]

You can PM me with questions if you'd like. I had one micropreemie and one preemie. They were both very different experiences.

[ArcticRose]

The nurses that I appreciated most were the ones that emphasized the fact that my hubby and I knew our DD best, that we knew her personality, her wants, etc. The ones that I appreciated the least did the opposite and tried to tell us things that we knew were not true about our DD.

The easiest example of this was swaddling. DD hates to be tied down, bound, contained. She hated to be swaddled! The nurse would swaddle her up tight and DD would squirm and fuss and was obviously unhappy, but the nurse would tell us that it couldn't be the swaddle because "babies love to be swaddled!" I understand that a lot of babies do love to be swaddled, but our DD is not one of them.

DD was supposed to be using all her energy to grow and develop, not fight her swaddling, so DH and I would unwrap her when the nurse wasn't looking. DD could then sleep peacefully.

Some of the nurses did listen to us and would cover DD loosely. We greatly appreciated the fact that they took us seriously and didn't just brush us off as the mere parents, lol.

One of the nurses told us that our DD would never walk correctly if we didn't tightly swaddle her all the time. I am happy to report that this was not true. DD isn't bow legged. She doesn't walk on her toes. (though she can) She was walking by 14 months (12 months age adjusted) and running shortly after that.

Parents feel so helpless in the NICU. We are so limited in what we can do for our babies. Include the parents as much as possible, and always remember that they do know their babies.

That's my 2 cents.

[WednesdayO]

Originally Posted by ArcticRose

The nurses that I appreciated most were the ones that emphasized the fact that my hubby and I knew our DD best, that we knew her personality, her wants, etc.

Support for and encouragement to continue Kangaroo Care as much as possible was important for me. We had one awesome primary nurse, but all of the ones that worked with DD knew about what times we visited the NICU and as long as it worked with her schedule, they'd have at least one chair ready for us and a screen for me to sit behind for privacy.

I felt like I wasn't doing a very good job pumping, but our primary nurse especially just kept telling me I was doing an amazing job and that every little bit counted. I was able to pump for 12 weeks, and by that time DD was eating enough that they started supplementing. (DD had a feeding tube for a while.) I was a little disappointed that I wouldn't be able to breastfeed, but with the words of encouragement, I felt like I had done my best and that it wasn't my fault.

[greenmommy1]

HI Ganesh,
Its been two years since that time. Our daugther was only born two weeks early but due to undetected preeclampsyia, her birth weight was in the premie range.

Big things I remember are
1. the stress about health, weight and size (will she get bigger. are we feeding her enough, comparisons to other children
2. Finding organic dresses for her. Luckily now there are organic brands like Greenbun which carry organic Kimonos for premies (www.greenbun.com)
3. Staying in the NICU. I suspect lots of people like me dont like hospitals and whole experience of testing blood sugar levels, monitors to check things like heartbeats etc all was quite difficult.

The reassuring thing were
1. pictures of other premies who has grown up to be bigger kids
2. Nurses who acted all normal and relaxed and gave us healthy tips for parenting like normal babies
3. Support of both parents in hospital and parents at home

Our daughter had no issues and was out of NICU pretty fast so I can imagine how much more stressful it is for parents who have to spend a lot more time in the hospital

BTW greenbun has a great deal on their website 25%off and free shipping over $25 Coupon RMN201002

[jillybeans]

Originally Posted by ArcticRose

The nurses that I appreciated most were the ones that emphasized the fact that my hubby and I knew our DD best, that we knew her personality, her wants, etc. The ones that I appreciated the least did the opposite and tried to tell us things that we knew were not true about our DD.

Originally Posted by WednesdayO

our primary nurse especially just kept telling me I was doing an amazing job and that every little bit counted.

Yes and yes to both of those things!
We had two nurses in particular that we actually started requesting. They listened, trusted us! We'd had two previous kiddos, we knew how to change a damned diaper! And they let us. They let us hold her when others didn't want her "touched". They encouraged my pumping (I had an excess of milk by the end!) and told us about every feeding...even the ones we missed. They also really pushed the March of Dimes onto us. We had two older (young) children and the MoD got us tickets to the children's museum, books for the older kids, etc etc. This was so good for them.

As far as the attachment goes...it was hard. Just the simple fact of not being able to be there 24/7 made it very difficult. I think in our modern world we greatly underestimate the importance of that initial bonding experience. I expressed some of that to a few nurses and they really understood that we physically NEEDED to be with her/hold her/touch her. They really advocated that to the doctors.

Being in the more attachment-parenting inclined NW didn't hurt either.

[MeepyCat]

I hear a lot of people talk about the attachment process, but what does that mean? I've never heard a satisfactory explanation.

I'll be honest, I didn't feel attached to my son when they handed him to me, and he was full term and boundingly healthy. My daughter? Born at 32w4d, barely even shown to me before they had to whisk her away and intubate her? She didn't seem like a baby at all. I described her as the physical manifestation of parental anxiety. For months, I felt only sort of dutifully affectionate for her, as if, were she to vanish from my life, I would feel, at most, kinda bummed.

Part of that, honestly, is that I am not a baby person. My affection for my kids appears to increase as they grow.

Part of that is that I was depressed. I had an awful time, with nasty trauma, and a pretty wretched case of PPD, and I needed medication and counseling. Badly.

Part of that is that I was tired. I cannot begin to describe to you how tired I was, except to say that the morning after my daughter slept through the night for the first time, I finally realized what a charming baby she really is.

I do wish that the nurses on our unit had been more encouraging about us holding the baby. The doctors talked a great game about the importance of kangaroo care, but they left decisions about cares and holding to be made cribside, by the nurses. The end result was a maddening series of shift-to-shift variations in whether and how much we could hold the baby, and a persistent feeling that the baby was being dangled tantalizingly in front of us, and could be snatched away.

[happyblessedmama]

the one big thing from our stay in NICU (not with a preemie, but this would apply) is not to tell a parent of a child facing a procedure, large or small, that their child cannot feel pain due to them being so young. I was actually told this by a nurse that I had a creepy feeling about anyway re: IV starts (and no, he wasn't referring to any type of anesthetics used topically - he just said 'babies this age don't feel pain anyway' re restarting IVs). Not only is that incorrect, it's horribly insensitive to say to parents in a bad spot...

[jkpmomtoboys]

Well the thing about many, many NICU experiences is that there is virtually no attachment due to PTSD issues relating to the early birth. It is helpful of course to do Kangaroo care if possible, but I had no (seriously, NO) attachment to my son for many, many months. Yes, I wanted to get him the hell out of the NICU but emotional attachment? No way. And that had everything to do with my PTSD from the birth.

Don't know if that helps - but there has been a lot of research done on PTSD as it relates to preemie birth and I wish more hospital staff understood the ramifications of that.

(Oh, my son was 29w and was in the NICU for 50 days.)

[winfield]

Originally Posted by jkpmomtoboys

Well the thing about many, many NICU experiences is that there is virtually no attachment due to PTSD issues relating to the early birth. It is helpful of course to do Kangaroo care if possible, but I had no (seriously, NO) attachment to my son for many, many months. Yes, I wanted to get him the hell out of the NICU but emotional attachment? No way. And that had everything to do with my PTSD from the birth.

Don't know if that helps - but there has been a lot of research done on PTSD as it relates to preemie birth and I wish more hospital staff understood the ramifications of that.

(Oh, my son was 29w and was in the NICU for 50 days.)

I'm having this problem now. My son was planned...I was told I may not be able to have kids. I've always wanted a child more than anything, so we started trying right away. We were fairly surprised when I was pregnant after only 4 months of trying. He was born by c-section at 32 weeks because I had preeclampsia. I never felt like I was at the hospital because I had a baby, I felt like I was there because I was sick. I was on Magnesium before my c-section and it made me feel terrible. I remember thinking, "ok let's call the nurse and have her take this crap out of my arm, I'm going home." I thought the same thing during my c-section. I wasn't excited about the baby coming...I felt like just jumping off the table and walking out the door, with or without a baby. They showed me the baby after the section, and I had a terrible look on my face. I always thought that when a mother sees her baby the first time, she instantly falls in love. I didn't. It was a very disappointing experience. After 29 days in the NICU, I brought my baby home yesterday, and I still don't feel like I've had a baby, I don't feel like he's mine. I'm glad he's not in the NICU anymore, but I'm not emotionally connected to him at all. I feel like I'm babysitting someone else's baby and they're gonna come pick him up anytime now, and I'll just go back to my life the way it was before I had him and that would be OK. The fact that I feel that way bothers me SO much but I don't know what to do about it except deal with it the best I can and hope that emotional attachment comes sooner rather than later.

As far as my experience in the NICU, the most frustrating thing was NO ONE was on the same page. You could ask the same question to 3 different people and get three different answers.
Example: the first time we got to hold our son, the nurse said we could hold him 30 minutes once a day. The next day we had a different nurse, and she said no more than 10 minutes a day.
Another example: Our NICU allows siblings over the age of 2 to visit for 15 minutes a day. My baby is an only child, but I have a 5 year old brother that is so excited to be an uncle and couldn't wait to see his new nephew. Our nurse got permission from her charge nurse to let him in just like a regular sibling. The next day, we had a different nurse and a different charge nurse, and after my mom drove an hour to get there they wouldn't let him in.

There were several other things that happened, those were just the two most frustrating for us.

[jkpmomtoboys]

Originally Posted by winfield

I'm having this problem now. My son was planned...I was told I may not be able to have kids. I've always wanted a child more than anything, so we started trying right away. We were fairly surprised when I was pregnant after only 4 months of trying. He was born by c-section at 32 weeks because I had preeclampsia. I never felt like I was at the hospital because I had a baby, I felt like I was there because I was sick. I was on Magnesium before my c-section and it made me feel terrible. I remember thinking, "ok let's call the nurse and have her take this crap out of my arm, I'm going home." I thought the same thing during my c-section. I wasn't excited about the baby coming...I felt like just jumping off the table and walking out the door, with or without a baby. They showed me the baby after the section, and I had a terrible look on my face. I always thought that when a mother sees her baby the first time, she instantly falls in love. I didn't. It was a very disappointing experience. After 29 days in the NICU, I brought my baby home yesterday, and I still don't feel like I've had a baby, I don't feel like he's mine. I'm glad he's not in the NICU anymore, but I'm not emotionally connected to him at all. I feel like I'm babysitting someone else's baby and they're gonna come pick him up anytime now, and I'll just go back to my life the way it was before I had him and that would be OK. The fact that I feel that way bothers me SO much but I don't know what to do about it except deal with it the best I can and hope that emotional attachment comes sooner rather than later.

I want to come out to Alabama and give you a huge.

This is normal. Seriously. It feels terrible and not everyone feels like this but normal, normal, normal. Even for full-term parents.

One of the best things I was told is that for some parents emotional bonding and falling in love with their baby comes step by step. With every step that you wear pacing back and forth in the middle of the night, you become more connected. For many parents, it doesn't happen overnight. It takes time but is no less strong.

I remember exactly what it felt like to seem like I was in the hospital during bedrest because I was sick, not because I was having a baby. In fact, the social worker made me repeat after her that I was not sick; I was in fact having a baby. I remember what it was like to feel like I hadn't had a baby at all. One of my friends who fell in love with her baby instantly felt so sorry for me because right after I had ds I said I didn't even feel like a mother.

But you know what - the connection happens. Just keep doing what you're doing - but continue to be aware (like you are) of how you are feeling and check in with your dr. periodically.

Feel free to PM me. I have BEEN there. There is a light at the end of the tunnel and you will get there.

[MeepyCat]

Originally Posted by jkpmomtoboys

This is normal. Seriously. It feels terrible and not everyone feels like this but normal, normal, normal. Even for full-term parents.

*nods*

Anne Lamott has a line in Operating Instructions about feeling like she's babysitting for her son. And she's waiting for the real parents to get home, "because we're all out of chips and Diet Coke." Michael Lewis wrote a whole essay for Slate about not loving his infant daughter, which begins with the reflection that he wouldn't much mind if she was run over by a truck, and concludes: "It's because you want to hurl it off the balcony and don't that you come to love it." (FTR, Lewis's writing about fatherhood is sort of deliberately apathetic in tone, but when you read what he describes himself actually doing - getting concussed while taking his daughter skating, calling in the pediatrician for what turned out not to be chicken pox, guarding his son against unnecessary wakings while he was in the hospital for pneumonia - he seems to be a very devoted father.)

[winfield]

Thanks.

I think I made it worse for myself because I had a very specific idea of what things would be like and how I would feel when all this happened. My only experiences with birth were things I saw on TV, and I really just expected them to hand me my baby and this motherly love would take over. I thought he would be the most beautiful thing I'd ever seen. Instead they showed me this little creature that looked a lot like Benjamin Button. I was very disappointed.

I talked to my doctor today about the way I've been feeling, and he made me feel a lot better. Hearing from him and reading that it's normal from people who have been there have helps me feel like not such a terrible person for feeling the way I do.

I'm supposed to go back to work November 29. I think I've decided I'm going to quit and stay home with him for a while, because I feel like 4 weeks is not enough time to bond with him before I send him to daycare. Plus his due date was the 26, so I think he'll still be too small for daycare.

[babygirlie]

I think I was lucky in that the NICU was very new and they were trying super hard to do a good job. Overall I had a good experience. There was a few things that rubbed me the wrong way. That there were twins about 10 feet from my NICU preemie with MSRP (is that it?). For a long time there was no quarentine just open air. Finally they put up signs and a curtain and would change robes. Same nurses would care for all kids and I have no idea how my kid didn't get the flu bug thing. Not much you could do about that situation though.

The main thing though was the shift change! During a shift change my baby stopped breathing. NO ONE came!!! I hit the button but the speaker answered in the hallway and I just hoped someone would come. I was scared shtless! Thank God I was camping there. It's a blur now but somehow I got the green snot out that had clogged her throat/nose and she started breathing again. I was beside myself in tears. The nurse casually comes in and I'm so upset... I start to describe what happens and she WAVED ME AWAY to shut up!!! NEVER EVER EVER dismiss a mom (especially when distraught). I was writing when it happened so I DID drop my pen in the cradle in the emergency. She snotted out who left a pen in the cradle (it was there all of 5 seconds and I was holding the baby at the time). Ok my first mistake as a parent, but at least I was THERE to get her breathing again! (which so happened she stopped breathing like that 5 times a day when I got her home. Maybe THAT'S why she's delayed now. Who knows.

My chest just tightens up thinking about that "person" waving me off when my baby just about died because they were in their meeting. BTW, no one came after I got her breathing either until a good 5-10 minutes later.

Suffice to say I did NOT leave my baby that night. As tired and as sick as I was I stayed up with her and beat that "person" to feeding her every time. I became adapt at the feeding tube. Not to mention all the hormones flowing through you.. every time she was near I had to do everything not to sob in front of her. She was utterly heartless, didn't catch a clue to my dead pan stare and tenseness when she was around.

In the morning after her shift I made sure she was to never ever to come near my child again. They told me she was a temp nurse anyway and wasn't likely to be back. I saw her taking care of other preemies later and felt I should check on them. Ugh horrible experience.

[babygirlie]

same same and same. Maybe it's hard to bond with a baby who is instantly taken from you. you're sitting in the hospital bed... alone, empty still crackin out on crappy hellish magnesium and there's not even a baby to show for it. You don't know what's right. You can't walk to the NICU, you don't want to demand anything from anyone making sure the baby stays alive. You're just there.. alone. And preemies could be delayed and when you get home.. they just don't need you. They are use to any random person shoving their dirty finger in their mouth and it wasn't your finger. They don't latch on or can't rather... all the fairy tales don't apply to you. It's like it's not your baby because everyone else has seniority over it. Everyone else has gotten to touch, hold, make big choices for it and you weren't even there. You feel you've already failed. but you fake it.  After 18 months I still don't quite feel that bond. I feel like I'm babysitting. Though now and then she'll do something that's so me so I know those are my genes. It's hard to explain you love them but it's like a different kind of love. It turns into a love that needs to build up.. not first glance true love. You do the job you think you're suppose to but silently wait for the doorbell to ring for someone to say Psych! This ones yours. It's really hard to explain. It sounds horrible but at the same time I'd rip someones face off if they tried to kidnap her.. well now at least. Back then I might have thought it for the best. Maybe anyone but me could do a better job.

[Karmabat]

my daughter was only in nicu for about 10-12 hours (4 weeks early, needed to be monitored) but I still hate it when I think about  it. When I finally saw her I felt as if the nurses werent giving me a choice about anything and was just given formula to give her, they wouldnt even tell me how she was doing. They weren't friendly at all (to me at least, they were super nice to my husband) and when they would pay attention they just gave me looks like I had done/was about to do something to DD. by the time i finally got dd to my room i felt so disconnected from her.  I really expected better care fom the best nicu in our city .

[Nyrie]

Hi

It is sad to hear that your birthing experience should have been special. It really concerns me when parents have these type of experiences. Did you let the hospital know how you wee feeling?

[Nyrie]

Yes I totally agree, Moms need to be giving KangarooCare to their babies - it is linked to the reduction of Post Natal Depression due to the release of hormones

[MeepyCat]

Originally Posted by Nyrie 

Yes I totally agree, Moms need to be giving KangarooCare to their babies - it is linked to the reduction of Post Natal Depression due to the release of hormones

Nyrie, I see where you're coming from (and I'm a huge fan of kangaroo care), but there's this problem whenever someone says "moms need." 

Mothers are not some monolith.  Mothers have different needs.  Plenty of mothers have been guilt tripped like crazy (including by NICU staff) for not kangarooing enough, and then there's the fact that as wonderful as KC is, it *isn't* always possible or advisable.

I'd love a link to the research on kangaroo care and PND if you have it - my suspicion (unfortunately) is that the mom's emotional health is one of those benefits that gets tossed into the conversation, but no one has actual scientific support for.  Depression is extremely common - nearly universal - in mothers of preemies, and I don't think the explanation is as simple as hormones.  Significant parts of PPD/PND have been linked to the difficulty of having a new baby, to the sleeplessness and stress and work.  NICU babies are a lot of stress, and a lot of work.  None of the things that are supposed to be easy are easy, and parents feel powerless and disconnected.  No amount of hormones is going to fix that.

[Nyrie]

Hi

I absolutely agree with what you are saying, Mums ar not a monolith and have very individual and unique situations and needs. I feel that I have an understanding of Mums have felt and been made feel in NICU's and in other areas of their lives, we all have different competing priorities adn demands, and this is a very stressful, or can be, time for a new parent. I understand that some feel that KMC is not always advisable, that we should ahve a good look at the Swedish NICUs practices, and this is certainly an area that requires more evidnce based research. Are we sometimes placing barriers up? Just a question for some thought.

OI have just completed some research into the are of KMC and it has been an eye opener for me, challenging the way I have viewed what is "best", and I suppose part of this comes from my indoctrinaction as a health professional in western ways. As for the PND, there is one reference I can give you as a starting point. It is

Kangaroo (skin-to-skin) care with a postpartum woman who felt depressed.

Dombrowski MA, Anderson GC, Santori C, Burkhammer M.

Frances Payne Bolton School of Nursing, Case Western Reserve University, 10900 Euclid Avenue, Cleveland, OH 44106-4904, USA. [e-mail]

I suppose the point I am trying to make is that if a Mom can make a strong connection with her newborn then this can only be beneficial for all concerned. In the research I have just conducted this was a very real experience for Mums who experienced PND and for their own unique reasons, linked this to the level of KMC they could provide and how they generally felyt about their experience and circumstances. One Mom even reported feeling the relief of PND for her when she gave up work and provided this. This was her story and experience.