Preemies

Difficulty connecting with other moms?

Does anyone else feel this way?  Having a terrifying birth experience, a sick baby and a NICU stay is traumatic.  I feel like I just can't connect with a lot of moms.  I hate swapping birth stories.  Mine was scary and sad.  I was literally raced into surgery and put under general anesthesia.  It's hard for me to understand how another mom was upset for days because her birth plan didn't go exactly as planned and she had to take some medication instead of having a natural birth.  I was out and not even present for the birth of my babies.  When moms talk about how they MUST have a home birth, I cringe thinking about all the things that could go wrong and how I would've lost both of my babies if I had a home birth (given I was full term).  Preemie moms fears are different from "normal" moms.  We have had kids fighting for their lives.  I've also experienced losing a child.  I don't know what it's like to bring a newborn home or immediately hold my baby and bond.  Childbirth was not a beautiful or magical experience for me.  I'm not "being crazy" for fearing my baby might get sick.  They don't understand that it's different for a preemie to get sick.  I just hate feeling so isolated.   Does anyone feel like this and/or found a solution?


2 year TTC journey with successful IVF in Nov 2012- B/G Twins!
Baby Boy diagnosed with omphalocele and diaphragmatic hernia
Born at 32 weeks due to PROM.  Emergency c-section due to prolapsed cord.
Said Goodbye to our sweet Bennett after 5 short hours.  
Spent 35 days in the NICU with our little girl.

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Re: Difficulty connecting with other moms?

  • I feel the same way. None of my friends have preemies. None of them get it. 
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  • I do feel this as well. Before my twins, I did have another child who was full term and while his birth was anything but ordinary, it does not compare to NICU stays and having one twin flown to another hospital and being on bed rest for 8 weeks prior to delivery. I have a VERY hard time listening to moms who are all bent out of shape because after their very easy pregnancy and carrying to full term, they have a "horrific birth experience" because their plan was not exactly followed. Big hugs!!
    DS#1 born 9/23/06 
    Twins DS#2 and 3 born at 31 weeks, 3 days due to a short cervix on 8/2/13.
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  • I feel this way a lot. My favorite is when anyone who had an unplanned c-section know "exactly" what I went through. Not that unplanned c/s are any fun but it isn't the same. 

    Do you have any preemie groups in your area? Or maybe look for a FB group, like Graham's Foundation. That has helped me the most. I love coming to this board because I can write CPAP and FIO2 and no one asks me to explain :) We were part of a preemie group through our hospital and I have become good friends with some of the moms and dads there. Ask around; maybe your hospital has a group or maybe someone online is in your area! (Just don't hang out with anyone who wants to sniff you... those people are not friendly.) GL!





    I'm not new. I just hate The Bump. 

  • I absolutely felt that way. There were many days, even long after DD came home from NICU, that I would be overwhelmed with it and just break down crying. I struggled with the idea that my body failed me and my DD. No one really understood, not even my mother or my DH. Apart from the ladies on this forum, the general consensus was that "she made it home, so shouldn't everything be okay now?" 

    It did get better over time, but even a year and a half later and being well into my second pregnancy it's frustrating when I see friends/acquaintances complaining on Facebook about how uncomfortable they are being 36, 37, 38 weeks pregnant and how ready they are for it to be over. In my mind I'm just shouting "you have no idea how lucky you are to be that 'miserable'!" I'm so sorry that you have to deal with these emotions on top of the already impossible weight of losing a child. 
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  • I feel this way exactly! My friend had her term baby 10 days before I had my 27 weeker and she's constantly trying to give me advice and I have to explain to her that it's different for a preemie. She's always down playing how traumatizing having a preemie is, and telling me "oh he'll get so big before you know it!" Uh no he won't, he doesn't grow fast and he has tiny bones. Her baby weighed at birth as much as mine weighs at 4 months actual, 1 month adjusted.
    My mom tries to understand but it's impossible when your on the outside. Which makes me wonder are we on the outside of normal or are they on the outside of our experiences?
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  • What I dislike most is when we go places and I tell people she was a preemie because they ask about her development compared to their baby.  Then they think I'm trying to tell a birth story and I hear all about their 2 days of labor just because I was trying to explain that she wasn't delayed because she isn't walking at 13 months since she's 11 months adjusted. But they don't know about adjusting.  I luckily somehow avoided people discussing their disappointment over their birth plans (perhaps you will find people get over this once it is later).  I didn't even have a birth plan because it was so early and I sort of see that part as a blessing.  Sure, it would have been nice to know some pain management instead of just screaming my way into the delivery room, but at the same time, I wasn't worried about a lot of stuff that didn't matter.  I did not make close friends in the NICU, and I think that is too bad.  Part of the problem was that some of the NICU moms just had very very bad problems and I felt like a jerk being like, "oh my baby is just learning to feed."  Plus, it seemed most of the people in our NICU came from very bad circumstances.  One of the people with a very early baby was homeless, but was hoping to be able to take her baby to her parents' house when she left the Ronald McDonald House.  It made me feel bad to be like, oh, I just live down the street, and these are my parents, and this is my husband, when many of the moms were very young and single.  Overall, now that LO is bigger, it isn't too hard to relate to full term moms, and I just steer clear of the super competitive women who want to compare milestone dates, etc.  Preemie blogs are a very good way to connect with other people's experiences too.
  • Thank you ladies! It's good to not feel alone with these feelings. @BostonKisses2- not snarky at all! Part of my issue is that I totally agree with your thinking. Everyone has difficult things in their life. There is no comparison. Pain is pain. If I had a perfect birth, normal baby, etc and then had to take my child to daycare, I would be beyond heartbroken and struggling emotionally to deal with that. I am extremely lucky to stay at home. Part of my issue is that I can see that everyone else has difficulties too and then feel bad because we just don't mesh. I think it's just with a young baby, there is a lot of talk about birth, early days, development, etc. I am a new mom too, but also a grieving mom. My worries are very different. It's just that our experiences are SO different that its hard to connect and find things in common. It's just different experiences and different perspectives. I need to stop feeling bad for not seeing a friendship in the future with some moms I've met and tried with recently.
    2 year TTC journey with successful IVF in Nov 2012- B/G Twins!
    Baby Boy diagnosed with omphalocele and diaphragmatic hernia
    Born at 32 weeks due to PROM.  Emergency c-section due to prolapsed cord.
    Said Goodbye to our sweet Bennett after 5 short hours.  
    Spent 35 days in the NICU with our little girl.

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  • I hear you. In fact I often feel unsure of where to post on these boards. Being a loss mom, a micro-preemie mom, and a special needs mom, there are not many who can empathize with me. Obviously this is a good thing in that I don't want more babies to die or struggle, but it can be tough to feel so isolated. 

    You are right that pain is pain and everyone is entitled to their own feelings. I am a trained counselor and try my best to empathize, but often now I am just unable to protect myself which is one reason I am not counseling now. I can't empathize with a client who is overwhelmed with the number of healthy children she has, nor can I empathize with a friend who is really upset about her child's ear infection. It's not that I want it to all be about me all the time, but I cannot tell someone how sorry I am for them without intensifying my own pain, yet. So I stay sort of in my own little bubble for now. 


      Our Angel Patricia born sleeping 3/30/12 at 31 weeks
    Our Fighter Anna born early 1/8/13 at 26 weeks
    Hoping to bring home #3 due 9/9/15
  • I had my twins on my birthday... Everyone was so excited and congratulated me and said things like "what a great birthday present!!" I wanted to scream that the best present would have been keeping them in for 10 more weeks.. Or when people say "at least you don't have to go through the 3rd trimester". I would kill to be miserable! Or my fav is "now you can catch up on sleep"... So you've never left a chunk of your heart at the hospital and physically ache because you've carried them for 6 months and they should be with you. Or getting up and pumping every 3 hours because that is literally the only thing you can do At home to help your child... My own mother doesn't get it and just keeps asking when SHE gets to hold them and doesn't understand why she can't go up
    To the hospital whenever she wants... Thank goodness there are places like this where we can feel normal and justified in our emotions..
  • I totally agree. It's something that no one can understand unless they have gone through it.
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  • My friend told me about her daughter getting her first vaccines and how she cried more than her baby. So I explained what a picc line was and put an end to her bs real quick. I don't wish a NICU stay on anyone but unless you've been there you'll never get it. We are stronger mommies for all of this. I know that sometimes "just staying positive" is impossible but... they need it and so do we. <3
  • Definitely. I have struggled a LOT with the isolation -- both that which comes with the whole lock-down impact of cold/flu season, but the rest of it, as well. That's compounded by the fact that we have two. So, we're surrounded by a peer set of Type-A parents, with one, FT baby. Natural births, cloth diapers, tumbling classes, infant swim lessons and general overanalyzing of baby's daily activities are the top of mind focus areas  (namely, how borderline genius these babies are, obviously). Hell, if I had a normal pregnancy with only one baby I might think about those things, too. But, now, it's just grating. I don't have a lot of patience for it. Obviously, that's probably be just being snarky and jealous (can you imagine how nice it would be if my biggest challenge today was to worry about which sippy cup to use?)-- but at the same time, I feel like the whole experience just reframed where I choose to spend my time and energy. 


    TTC Since 11/10 due to Unexplained IF 
    4 Rounds of Clomid, 2 Rounds of Femara + IUI, 2 rounds of IUI+ Injectables (Bravelle + Menopur) = First BFP! TWIN GIRLS!

    November 2, 2012 - Claire (2lbs 8.9oz) and Paige (2lbs 10oz) arrive at 29w3d due to PTL and pPROM at 28w5d 
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  • JoJoGeeJoJoGee member
    edited February 2014
    I felt the same way for a long time, like I couldn't connect with typical parents.  Over time I learned to forgive them their ignorance.  Typical parents just don't know any better, thank goodness.  

    But, then I had a hard time dealing with the parents of late term preemies, and preemie parents whose children suffered no ill effects from their prematurity.  Which is why I stayed away from this board for so long and only recently re-introduced myself.  But, again, I am learning to forgive people their ignorance.  As the parent of a late term preemie, or a preemie who has not suffered any complications from their prematurity, you (not you specifically) just don't know what it is like to be the parent of a micro-preemie with multiple afflictions and disabilities (all thanks to her prematurity).

    On the other end, while I have experienced two miscarriages, I just do not know what it is like to experience the loss of a child.  And, I don't know what it is like to have had infertility issues.

    But, what I have come to realize is that we all carry around pain - everyone in this world carries pain with them every day.  And, while our pains might not be the same, they all hurt.  And, I think knowing that (along with the passing of time) has helped me see others in a new light.  I think knowing that has given me the opportunity to connect with others I may never have been able to connect with.
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  • Honestly, it takes awhile to start to connect with other moms, especially term moms. Sometimes it's hard for me to feel connected to moms here because DD was a 32 weeker without lasting issues. She has a sensory processing disorder, but they don't know if her being preemie has anything to do with it, or if it's something we would have still dealt with had she made it to term. I spend a lot of time feeling like I'm in some grey area category, I'm a preemie mom, but aside from the SPD, DD acts like a termie. I always wonder where I really fit. This board does help, even though things are different for us now, it still helps to connect with the ladies here who understand that it wasn't always this way. We had our share of scares, and nearly lost DD in the nicu numerous times, that's something my full term mom friends don't understand. Something else that really has helped is having friends with preemies. I have two very good friends who both had 27 weekers, but neither of their los have any lasting issues other than being small. One of them I knew before she had a preemie, the other I was very fortunate to meet and become close with.
    DD is 20 months and I have started to be able to lose some of that isolated feeling. I'm still not where I want to be in regards to how I interact with my friends who made it full term, but I can actually handle being around them for more than a few minutes now, so that's a plus. The further away we get from DD's traumatic entrance into the world, and the more we learn to manage her SPD the easier it gets.
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  • I have felt the same way so many times! There's about a million coworkers who are pregnant or were pregnant the same time as me. They'd complain about not being able to hold LO for a few minutes (I didn't see mine for two days), complaining about a two day NICU observation like it's the end of the world (we were only about half way into ours) and other things I would've killed for. Just hard to have those conversations when my experience was so completely different.

    After having IF issues and getting pg on our second IVF, losing a twin, having horrible morning sickness that just bled into preeclampsia and eventually HELLP, emergency c section, mag, nine weeks in the NICU, I still feel some resentment. I got the comments like "at least you didn't have to feel miserable in the middle of the summer" or "at least you got to avoid contractions/labor" and smile and weakly agree, but each one stabs my heart a little.

    My lifesavers were a couple colleagues who had preemies and walked me through the journey...still are helpful when talking about actual/adjusted age and milestones.
  • I understand how you feel about the birthing experience. Both of my pregnancies ended with me being whisked away to an unplanned emergency c/s under anesthesia. Besides people in the OR there was no other witnesses to the birth of my daughters (not myself or husband). With DD2, I had to receive blood products because I was very sick. I have no idea what labor feels like, which I cannot stand when people say "consider yourself lucky". LUCKY!!!! I had very traumatic birth experiences that scare the crap out of people, would not consider myself lucky. With DD1, I do not remember the 24 hours after her birth. With DD2, I did not get to hold her for a week. 

    As far as relating to preemie moms, I actually am having a hard time relating because my daughter is a late term preemie. She was born at 35w3d, weighing 6 lbs and 19 inches long. She had respiratory distress upon birth because of her age and had to go to NICU to be placed on CPAP then ventilator because she did not respond to CPAP. She spend a total of 3 weeks in the hospital (almost 2.5 weeks in the NICU). Just brought her home on Sunday evening. Though she was sick and her respiratory issue was serious (required much more oxygen support than originally thought would be needed), there were other babies in a more delicate state. She was not in an incubator and was the biggest baby in there. Everyone I met was nice but I felt bad due to being able to hold my daughter while other parents were only getting to touch their babies. I just felt like an outcast, I feel that I really should not categorize my daughter as a preemie. It was hard for me to be happy on the outside about progress in my daughter's condition when I knew there were people around us who were having to make difficult decisions because of lack of progress. Luckily I had a friend who had MoMo Twins at 30 weeks who was a big help in dealing with my emotions. 
  • I think all if us have stories we could share about the same feelings and people's conversations. My family and friends were very supportive and for the most part, didn't make stupid comments. At a staff meeting one day, one coworker announced that her daughter just had her baby--6 weeks early. She said she was going to be coming home without her baby, so please pray for her. I started bawling, because she looked over at me knowing I had the same experience. Someone at my table said, "Tara, it's ok." That doesn't sound bad now, but the tone of voice she used was like "Tara, don't cry. It's not that bad." I just wanted to smack her, because even now, 2 years later, I'm crying just thinking about leaving my baby at the hospital. It's hard and always will be. It's been really hard to see other pregnant people at work or on Facebook have "easy" full-term pregnancies (compared to mine). It's mostly, for me, that I'm insanely jealous of a normal pregnancy. I dream of being big and uncomfortable, and I don't know if I'll ever experience that. Anyway, long story short, we all know how you feel and you have every right to feel that way. It does get a little easier with time, but for me, I don't think will ever completely go away.
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