Preemies & your personal NICU Experience... - Mothering Forums

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#1 of 25 Old 10-19-2010, 03:39 AM - Thread Starter
 
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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
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#2 of 25 Old 10-19-2010, 03:46 AM
 
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You can PM me with questions if you'd like. I had one micropreemie and one preemie. They were both very different experiences.

Bri helpmeet to Chaise mama to K(2/07)  M(3/09) & A(2/11)

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#3 of 25 Old 10-26-2010, 12:26 AM
 
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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.

Married to an Ogre, Mother of Danora Rose 12/31/2008 and missing Evan Michael 12/31/2008 Expecting someone new 7/11/2011
 
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#4 of 25 Old 10-26-2010, 10:14 AM
 
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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.

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#5 of 25 Old 10-26-2010, 07:10 PM
 
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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
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#6 of 25 Old 10-26-2010, 07:13 PM
 
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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.
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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.

Jill, mama to three fiery girlies and a sweet baby boy: Grace, 11.30.2005,  Ayla, 3.22.2008, Norah 9.5.09, Reed 8.19.11 & dfs Gage 2.29.12   angel1.gif x4
 

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#7 of 25 Old 10-26-2010, 11:36 PM
 
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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.
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#8 of 25 Old 10-27-2010, 10:01 PM
 
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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...

Mom of 7, ages 13, 12, 9, 7, 5, 4, and 2.5!
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#9 of 25 Old 10-28-2010, 05:11 PM
 
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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.)

Jen, former attorney and now SAHM to 11 yo ds and 8 yo ds

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#10 of 25 Old 10-29-2010, 06:05 PM
 
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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.
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#11 of 25 Old 11-01-2010, 06:53 AM
 
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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.

Jen, former attorney and now SAHM to 11 yo ds and 8 yo ds

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#12 of 25 Old 11-01-2010, 11:24 PM
 
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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.)
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#13 of 25 Old 11-02-2010, 09:04 PM
 
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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.
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#14 of 25 Old 11-10-2010, 10:47 PM
 
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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.

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#15 of 25 Old 11-10-2010, 10:56 PM
 
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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.

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#16 of 25 Old 11-11-2010, 03:23 PM
 
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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 .

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#17 of 25 Old 11-20-2010, 05:26 PM
 
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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?

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#18 of 25 Old 11-20-2010, 05:28 PM
 
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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

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#19 of 25 Old 11-20-2010, 09:01 PM
 
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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.

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#20 of 25 Old 11-23-2010, 11:44 PM
 
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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. [email protected]

 

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.

 

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#21 of 25 Old 12-08-2010, 11:29 PM
 
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My daughter was born at 34.5 weeks. I was planning a home birth, so when my water broke early I was in deep conflict about what to do. I decided to stay home because I have worked in hospitals before and knew that if I went to the hospital she would be immediately whisked into NICU and probably kept there just based on her gestational age. My midwives agreed to support me (I am also a midwife). I knew that chances were she would be absolutely fine and trusted that if she was not, we could transport. The birth was fast and she was fine- 5lbs 11oz, came out crying, latched right away, etc.

But, she lost a full lb in the first week and despite vigorous breastfeeding and exposure to sunlight, she developed severe jaundice. So at 7 days old we had to bring her in to the NICU to be under the bilirubin lights. The experience was horrendous from start to finish. We went to the hospital that my pediatrician has privileges at, instead of the one with the best NICU- so this was mistake number one. We should have just walked into the ER at the better hospital. Anyway our NICU stay went like this:

 

1. When we walked in they brought her into the back, wouldn't let me go with her, and gave her an umbilical line without my permission because they thought they 'might' need to do a full blood transfusion. I understand that it gets harder and harder to put in and was basically a miracle that they got it in at all at 7 days old, but I would have preferred to put her under the lights for 5 hours and then retest her bilirubin to see if it was going down enough to avoid a transfusion- which is exactly what happened. Her numbers went down steadily and she never needed the transfusion.

 

2. The NICU did not have CHAIRS in it for parents to sit in. Nor did they have a waiting room. They simply had a few chairs in the vending machine room down the hall. So there I was, 7 days post partum having to stand for hours on end and my mother was sleeping on a chair next to the pop machine.  I was the only parent who refused to leave the room when visiting hour (singular) was over, so the nurses hated me, but I really didn't care. I felt like if my baby was going to experience this trauma, I needed to at least be there with my voice and smell as a constant presence. We had already had a week of breastfeeding and cuddling under our belts. I stood for 12 hours the first day that she was there. That is just cruel. One of the nurses asked why I didn't just go home and sleep and I explained that I felt my presence and constant touch (albeit one hand through the incubator) was comforting for her and crucial to attachment in this early phase. The nurse said "you don't actually think she knows you are here or can hear you and recognize your voice, do you?"... uh, she has jaundice, not deafness. At that point they called in some random midwives from the L&D floor to try to coerce me to come hang with them- anything to get me out of there so they could talk shit about the patients/parents in peace, which is what they did with me in the room anyway.

 

3. While pumping was encouraged, I was not allowed to breastfeed. Ridiculous. She wasn't hooked up to any machines other than the lights so they could have just shone the light on her while she nursed but they were not having it. Not that I could have breastfed- there were no chairs! I remember one day I walked into the pump room (basically a closet with a curtain) and the pump wouldn't turn on. I popped my head out to the nurses station to ask for help and the nurse said verbatim "Even if I wanted to help you, I wouldn't know how".

 

4. After my making a fuss about the umbilical line being placed unecessarely and without consent, the doctor tried to convince me that the up side of the line was that they wouldn't need to do a heel stick every time they had to take her blood (every 4 hours)- so she would be spared a bunch of needles. This was comforting until the nurses started coming in and sticking her heel. When I asked them to use the line since that is what it was there for, they said they were told not to use it because it increased risk of infection. I asked that they then remove the line, but they refused. So basically everyone was full of BS and everyone hated me because I was the only parent who questioned what they were doing to my baby and attempted to advocate for her. I felt like everyone else was just in too much shock and did whatever the doctors told them too because they just wanted their babies to be ok.

 

5. Her numbers went rapidly down. By day two they were at a reasonable/normal infant level. By day three they took her off the lights. They wanted to keep her in the hospital another day so that they could observe her and make sure her numbers continued to go down. I requested that since her numbers were low and they weren't going to test again for 10 hours, they let me bring her home where I could breastfeed and hold her and I would bring her back they next morning so they could retest her. To me this seemed perfectly logical- but the doctor refused to sign off on it because once they discharge her I couldn't bring her back into the NICU for testing. I told them I would bring her to my pediatrician for testing, or outpatient or ANYwhere, just let me hold and feed my baby and get some sleep! I had been awake for 3 days and standing basically the whole time at a week post-partum. The doc refused, so after consulting with my pediatrician and my sister who is an internist who both thought it was insane that they were holding her, I decided to take her out AMA. Apparently this is against hospital policy, so they told me if I took her they would call the police and child protective services on me. They then literally locked me out of the NICU saying there might be a fire drill and I couldn't be in there if there was. WTF???

 

This really set me into a post partum, hormonal, mama bear rage. I called a friend who is a lawyer and she got in her car to come down. I called a friend who is the editor for one of the cities largest newspapers to come down and write a story on how this NICU was completely un-mother/baby friendly. I called a friend from medical school who is the head of child protective services for the city to come down, so that when I walked my baby out they couldn't threaten to illegally arrest me (it's not state law that you can't sign a baby out AMA, just hospital policy) or call cps, because they were already there.

So when these three people walked into the NICU, the doctor immediately signed her out and made arrangements for me to bring her in the next morning for retesting. I was followed out of the hospital by some super apologetic administrators who kept saying "we can't have a newspaper article about this".

 

We went home, got skin to skin, nursed to sleep, and came back in the morning to retest and her numbers were great. She had an umbilical hernia as a result of the line for several months, but it eventually went in. I think in the end, I was way more traumatized than she was.

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#22 of 25 Old 12-13-2010, 12:00 PM
 
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I am sure you have already had to turn in your paper by now, but thought I would respond anyway.  My DD was born at 27 weeks and was in the NICU for 11 weeks.  My biggest issue was continuity of care.  We were there long enough that by the end of her stay, we had primary coverage for most of the time, but in the beginning, we saw new nurse after new nurse and it was frustrating.  The best nurses were the ones that realized that my DH and I were there everyday and that our information was reliable (like when her new feeding orders were transcribed incorrectly).  The worst nurses most assuredly went out of their way to prove they knew what was best over some lowly parent.  I came to blows with at least two nurses and had them removed from my daughters service because of this type of behavior.  In both cases, a simple call to the Attending would have cleared up the problem, which I suggested and the nurses in both cases refused. 

 

The attachment process was difficult for me.  I felt like I wasn't doing enough, I am sure there was some level of depression at work, and I was absolutely exhausted.  After day 10, when the humidity was turned down and we were able to hold her, we had one of the best nurses working with us that day.  She was so excited that we were going to hold DD and that made me excited.  Her enthusiasm may or may not have been genuine, but she could see I was in need of a boost and she took it upon herself to give it to me.  She let me hold her a bit longer than the prescribed time because all of DD's stats were holding fine or improved and she kept a watchful eye from a distance and let me have that time with her and my DH.

 

Overall, my NICU experience was pretty special.  We are 10 months removed from discharge and I can see now that I was changed for the better.  It was trying, difficult, exhausting, terrifying, and by no means a picnic, but we pulled together and made it through.  My marriage is stronger, I am stronger, and my DD is most certainly the beneficiary of that.   I remain close with several of the nurses and doctors, along with some support staff.  I send emails with pictures and updates of DD and occasionally we stop by the NICU to say hello and show off :)

 

Things are what you make it, this is true for parents AND nurses.

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#23 of 25 Old 01-30-2011, 09:24 PM
 
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I am glad to find out that I am not the only one who felt "not connected" with my baby.  I am a mom of a 23 weeker who was in the NICU for 4 months and 1 week.  They all looked at me crazy when she was getting discharged and I told them I didnt feel connected to her.  It is getting better now.  I didnt get to kangaroo with her often because she was on the high frequency oscillator for 2 and a half months.  Even afterwards I could only hold her for an hour and it seemed like a big process to take her out of her isolette.  I dont know if that had anything to do with it but it could also be the fact that I didnt cary her for very long.

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#24 of 25 Old 03-10-2011, 06:46 PM
 
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I am still in the NICU experience.  My daughter was born at 28 weeks gestation and she is 36w 1 day today.  She is moving forward.  She has no more tubes and she eats from a bottle, she just needs to be desat free for three days and we can bring her home.

 

The first time we did Kangaroo care was very special.

 

The nurse that bundled her so she could hold her own paci was great.

 

The time the nurse sicked lactation on me because I was crying next to the isolette when my milk had dried up ticked me off because duh of course I had already tried everything and had talked to lactaion a million times.

 

We moved her to a smaller hospital closer to home where they each get their own room.  It has been great.

 

Until today when the nurse wouldn't even let me help bathe her (I have done solo baths the last three times).  Then took over feeding her twice when I really do know better.  And when I did need something from her she hadn't even written her name and number on the board so I knew who to call.  Then when I was upset she told me that if I was stressed out I could just call for an update instead of coming in everyday.

 

I know I am stressed but I need to be with her everyday and she needs me there.  I do feel bonded to her I feel like I physically need to be with her.  I sometimes get frustrated that I can't do anything to help her sometimes I get angry because the nurses act like I don't know anything.

 

Today I did call the charge nurse.  I hope to never see that nurse again.

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#25 of 25 Old 03-25-2011, 03:32 PM
 
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Our first day in the NICU a nurse told us how much she loves taking care of her babies.  That really says it all -- parents didn't seem to have a role there.  The babies didn't belong to the families - they belonged to the nurses. It was very frustrating because we had a healthy preemie.  We slipped through the cracks.  They didn't get around to writing a care plan for her until the 3rd day.   Every time we went in, a nurse would tell us something different.  The day nurses always seemed to want us to leave.  Night nurses seemed to like us there - we were the only parents who were ever there and they seemed to enjoy the company.

The hospital told us that we would have to accept leaving our baby there and go home.  I told them that I was staying as long as my child was in the hospital and refused to leave.  We knew our stay was short term - it ended up being one week.  Our preemie was a 35 weeker with an apgar score of 9.  They deducted a point for oxygen, then decided that it hadn't been necessary.  She was rolling over in the NICU.  To be honest, the only reason we were there was her weight - 4 lbs.  In another hospital, they would have had us room in, breastfeed (and pump if necessary) and kept us longer until our daughter gained weight.  I knew that she didn't need to be there, but they made us so scared.  She never had a single spell or episode, yet they enforced their standard policies around feeding and how long we were allowed to hold her/be there.  It was really hard to look at her in the crib and know that she wasn't being held and cuddled the way newborns are designed to be.

Lactation refused to work with us because we were in the NICU and NICU wanted us to pump and bottle.  No one supported breastfeeding (which should have been possible to try at 35 weeks).

I ended up having an intense amount of resentment towards the hospital and the NICU.  The communication was abysmal and I felt like I had to constantly fight for everything - when I was recovering from giving birth.  I didn't feel like they were helping me or my daughter.  I felt like they were separating us. 

If I could do it again, the first thing I would choose is a different hospital!  I would demand meetings with a nurse supervisors and doctors on day one.  Setting up communication and understanding the policies and what could be done differently in my daughters case because she was healthy.  (IE - rooming in, more kangaroo care, lactation assistance).

I feel like the hospital set us up for a rough 3 months that was unnecessary.  They are so much about measuring and controlling everything that they forget that there are people and families involved.  The superior attitude is so frustrating.  Parents are already scared.  They need warmth, support and knowledge - not attitude.  

Now, I am pregnant with my second child and I will be at a different hospital.  Hopefully, we will not have to do the NICU route again.  We have checked their policies, just in case. They do rooming in and encourage parents to stay as long as the baby is there.  If we encounter problems, I would not hesitate to look into other hospitals to transfer to.  I will again never be treated the way I was at the first hospital.

ETA:  After 4 years, I am still angry about our experience.  It makes me so sad that so many families have to start this way.  They really need a lot more support for parents to be involved from the beginning - as much as the parent wants to be involved.  If they want to sit next to the crib all day, let them.   If there isn't a medical reason preventing it, let them kangaroo care as much as possible.  Don't try to tell a parent how to be a parent.  The NICU is there for medical support, not to replace Mom and Dad.

 

 

 

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