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Thread: Things I had wished I had known about having a preemie before

  1. #1

    Default Things I had wished I had known about having a preemie before

    I've seen a lot of these types of threads in other rooms (STC, bfing, etc). I figure it would be a good thread to start here. For any new preemie moms or moms that aren't as far into their preemie journey.
    Moms can post here things they had wished they'd known about the NICU, or about preemie care at home.

    I'll start, but my list is pretty short.

    1: Don't put too much importance on your due date. Some babies leave the NICU weeks before, some leave right near it, and some won't leave for weeks after their due date.

    2: Doctors and nurses are trained to know what isn't 'right' or what looks wrong in babies. But NOBODY will notice the little details of your little one like you will. If you think anything looks wrong or even just "different" than it used to be speak up, and don't be afraid to keep asking until you get an answer that feels right.

    3: When it is time to be discharged from the hospital without you baby, you may want to leave, that doesn't make you a bad mom and that doesn't change your love for your baby.

    4: There will be days when you don't want to go to the hospital and there will be times when you want to leave the hospital rather quickly. Just like above, that doesn't make you a bad mom, and doesn't change your love for your baby.

    5: If there is ever a nurse that you don't feel comfortable leaving you baby in their care, feel free to let the charge nurse know you don't want that nurse to take care of you baby. That nurse will never know, and it won't be held against you. It is important that you feel good about the care your baby is getting.

    6: Just because your baby is alive, doesn't mean you didn't experience a form of "pregnancy loss." You lost the last months/weeks of your pregnancy, and it is okay for you to mourn your pregnancy loss.

    7: No matter how traumatic or horrible the birth or your baby was it doesn't change the fact that an amazing little person has come into your world to change your life forever. It is okay to celebrate your baby's birth; in fact I recommend it.

    8: Most people will quickly tell you not to feel guilty, because there wasn't anything you could do. But I say it is ok to feel guilty, as long as you know it isn't your fault. Knowing and feeling are different.

    That is all I have for now. Please add to the list!
    Last edited by intactivstmom; 04-17-2010 at 10:55 AM. Reason: just adding to my list.

    "We cannot withhold facts for fear of offending because the importance of the information outweighs people's right to not be challenged in their beliefs." -Maddy Reid
    In memory of all APA babies gone too soon; always loved and never forgotten

  2. #2

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    1. Its okay to call the NICU anytime, day or night, they are always open.

    2. Remember that YOU and only YOU are the mom. The docs and nurses may currently be your LOs caregiver but YOU are mom.

    3. Just because your baby was born early, and you "skipped" the last part of your pregnancy or because you are "not having to deal with a newborn" does not mean your experience shouldnt be shared. Each birth is unique and special, that includes yours.

    4. Its okay if you dont feel totally attached to your baby. That doesnt mean you are a bad mom.

    5. Its okay to cry.

    6. Take notes. Its hard to remember details when you are standing in a stuffy NICU room with beeping monitors and lights, write it down so you can review it later, also makes a nice keepsake.

    7. As much as it hurts and feels like it will never end, it will, you WILL go home eventually.

    8. The pain of a baby in the NICU doesnt leave when you go home. It just changes.

    9. No one else will "get it." As hard as you try to explain it, they just wont. They will be insensitive and hurt your feelings. They dont get it and never can or will.


    I'm sure I'll think of more later. Can we get a sticky?

  3. #3

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    -Dont let the monitors rule you, when the nurses walk over glance at your lo and leave its ok. Pay attention to your baby not those monitors.
    (Leads slip off, baby moves...etc)

    -Please get some rest, I ignored all the get some rest advice and once Lilly came home I regreted it. I was dizzy for 2 weeks.



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    *that you are your baby's advocate. YOU know what is best for your baby, and they work for you looking after your LO, not the other way around. If you dont want something done - DO NOT LET THEM DO IT.


    Freebirthing Mama. My body. My birth. My way.

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    Be your baby's advocate. Noone else will. The doctors and nurses are doing their jobs, but they won't always make the right decision for your baby. You can stand up for your baby.

    Do everything you can to take care of your baby. It's amazing how empowered you'll feel changing a diaper.

    Learn from the nurses. Noone knows your baby like you do, but the nurses have taken care of hundreds of babies. They'll be able to teach you little tricks like how to burp the baby a different way.

    Don't expect the feelings of anger and pain to go away when your baby comes home. The feelings will change, and may even dim, but there will always be triggers.

    It's ok to resent mothers who got to have "normal" pregnancies and births, but don't let that resentment control you.

    I think my Dad said it best: Embrace the fact that your baby is special. Not different, but special. Right after my baby was born, he told me that I have a very special baby and that's stuck with me.



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    Bumping and adding to my list in my first post.

    "We cannot withhold facts for fear of offending because the importance of the information outweighs people's right to not be challenged in their beliefs." -Maddy Reid
    In memory of all APA babies gone too soon; always loved and never forgotten

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    I wish I'd known that it's not just women with high risk pregnancies or high risk behavior who end up with a preemie. I would have never expected that being pregnant in my twenties, eating and living healthfully, with no family history of premature birth that I would end up having my pregnancy cut short and my baby stolen away to the NICU. It can happen to anyone, and EVERYONE needs to have a basic understanding of premature birth.

  8. #8

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    Quote Originally Posted by JamieMonsterMama View Post
    I wish I'd known that it's not just women with high risk pregnancies or high risk behavior who end up with a preemie. I would have never expected that being pregnant in my twenties, eating and living healthfully, with no family history of premature birth that I would end up having my pregnancy cut short and my baby stolen away to the NICU. It can happen to anyone, and EVERYONE needs to have a basic understanding of premature birth.
    ITA with this..


  9. #9

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    Quote Originally Posted by JamieMonsterMama View Post
    I wish I'd known that it's not just women with high risk pregnancies or high risk behavior who end up with a preemie. I would have never expected that being pregnant in my twenties, eating and living healthfully, with no family history of premature birth that I would end up having my pregnancy cut short and my baby stolen away to the NICU. It can happen to anyone, and EVERYONE needs to have a basic understanding of premature birth.
    AMEN AMEN AMEN!

    Even "perfect" pregnancies can end in premature birth.

  10. #10

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    Quote Originally Posted by JamieMonsterMama View Post
    I wish I'd known that it's not just women with high risk pregnancies or high risk behavior who end up with a preemie. I would have never expected that being pregnant in my twenties, eating and living healthfully, with no family history of premature birth that I would end up having my pregnancy cut short and my baby stolen away to the NICU. It can happen to anyone, and EVERYONE needs to have a basic understanding of premature birth.
    So true. I took excellent care of myself during pregnancy, and had wonderful prenatal care and still ended up having my baby at 34 weeks. Yet other women I know smoke, and drink a ton of caffeine and God only knows what else during pregnancy and go on to have healthy full term babies.

    That brings up another thing...Don't blame yourself. It's not your fault that your pregnancy ended early and your baby is in NICU. You did NOTHING wrong.



  11. #11

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    Another one I just thought of...

    I wish I'd known that the Mommy-guilt over imperfection would be worse than for moms of "regular" children. It doesn't matter that I nursed him for two years, it should have been three to help keep him from being so sick these days. It doesn't matter that we still co-sleep, because I'll never make up for the two weeks he had to sleep alone. Nothing will ever undo what his prematurity did to him, and it will always be my fault that I am unable to figure out the impossible way to fix that.

    I don't blame myself for him being born early and know it's not my fault, but the maternal urge to "make it all better" will never be satisfied. I wish I'd been prepared for these feelings to follow once the initial guilt resolved.
    Last edited by JamieMonsterMama; 10-17-2009 at 10:07 AM.

  12. #12

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    I know what you mean, I still have guilt too. I ask myself everyday...what would have happened if I called my doc that morning and told her about my "pains" (aka labor!) could they have stopped them?

    How can we get this stickied?

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    I'll PM a mod and ask them to sticky it for us.

  14. #14

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    Wu HOOO We are stickied! =)

  15. #15

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    I wish I would have know how hard visiting a friend in the hospital with her baby, even over a year later is still hard. I cant help but be jealous of them, sitting in there with their families, taking pics, getting visitors, etc. I'm so happy for them but yeah, its not fair....

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    I wish I would have known how hard it would be to look at mementos from that time. My mom wants to make a scrapbook for Trinity, and I haven't been able to bring myself to give her the mementos from her first few weeks. I just can't do it yet.



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    I also wish I would have known how alone I'd feel. I feel even more alone now, DH seems to have fully moved on. I still have nightmares, and freak at the very thought of anything harming my baby.



  18. #18

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    Quote Originally Posted by EKZZS View Post
    I wish I would have know how hard visiting a friend in the hospital with her baby, even over a year later is still hard. I cant help but be jealous of them, sitting in there with their families, taking pics, getting visitors, etc. I'm so happy for them but yeah, its not fair....

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    I wish I had been prepared for the ignorant comments. That I was lucky I didn't have to "deal with him" for the first two weeks, or get swollen/stretch marks/heavier. That parents of preemies are overprotective and can't let go (because I didn't leave him overnight till 19 months). That it's really not a big deal that he was in the NICU because he can't remember.

    Not only will people not understand how you feel, some of them will make absolutely no effort to take your feelings into account before they open their mouths. Be prepared for it. If you can respond-- whether it's with honesty, saying how much they hurt you, or with an angry comeback-- you will feel a lot better about it both then and later on. Don't be ashamed to vent to your support system, or to admit to them the things that make you want to cry or scream.

    A positive one:

    I wish I'd known how amazed people would be to hear Jamie was premature. He's off the charts for height and so amazingly bright-- for every bit harder the mommy guilt is with a preemie, the mommy pride is that much stronger as well.

  20. #20

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    Quote Originally Posted by JamieMonsterMama View Post
    A positive one:

    I wish I'd known how amazed people would be to hear Jamie was premature. He's off the charts for height and so amazingly bright-- for every bit harder the mommy guilt is with a preemie, the mommy pride is that much stronger as well.
    This is true. I am VERY proud when people say "WOW, I cant believe how big he is now and how you cant even tell he was a preemie and what a miracle he is"
    And how when people tell you "I used your story today to make a new mom of a preemie feel better" I got that one this week, it make me feel like maybe it was all for a reason and I should use what I've been given by God to make a difference, which is why I wont stop talking about it.

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    I copied and pasted this to print it out. I passed it on to some of the other new mom's in the NICU and told them where it came from. They all breathed a sigh of relief after they read it.
    Thank you to all of you who contributed to this list.. for all of the hundreds of things they tell you when you have a preemie they never tell you any of the things on this post which I think are some of the most important things you need to hear. After I read it I felt much better and less alone. Thank you.

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    Thank you for this! I have a friend who's been in and out of premature labor the last week, and is at 33 wks now. She's facing having a NICU baby eventually, but she's really young and not prepared. This was a HUGE help for her (I copied/pasted into an email since she wasn't sure she wanted to join a forum just yet). You ladies are some strong mamas! You should be proud of yourselves
    Courtney (28) & DH (31) | Brock born 2/20/10 @ 43+1 weeks
    Ask me about our unmedicated birth!



  23. #23
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    Thanks for this sticky. While I don't have a NICU baby, I do have a late term preemie baby that has yet to room with me or leave the hospital nursery. We are only five days in and I feel so many of these same feelings that you lovely ladies have posted about. Everyday I second guess so many of the things that got us to this point. My only thing to add to this great list is to choose to be positive, even if it is about something so small. That has really helped me get through some long days. I mean celebrating passing the hearing test made my day.

    Jeanne, mom to Dev0n (5) Isabe11e (4) and C0rbin (3) Vio1et (16 months)


  24. #24

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    I <3 this thread...since I posted in this a long time ago I've become a preemie mom x2 and currently struggling to not make it x3. Made me tear up tonight.

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