Trigger! IUGR-Preemie. Will these wounds ever heal? - Mothering Forums

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#1 of 11 Old 12-05-2016, 05:07 AM - Thread Starter
 
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Trigger! IUGR-Preemie. Will these wounds ever heal?

Dear fellow moms,

Please don't read this if you are currently pregnant or haven't completed your family planning yet, as it may be very hard and painful to read. I myself have a very hard time to write this without crying...

The following is what I have experienced in a German university hospital.
_______________________________

It would be easy if I could say this is the first time ever something terrible happened to me. It would be easy if I hadn't any other horrible experiences to compare it with. But I'm a survivor of childhood brutality, alcoholic and mentally ill parents. I used to be the "weird kid" who had no friends, was fat and bullied a lot in school. By teachers and other children.

I'm gay. Still my deepest wish was to have a family. Children. (No, not to "compensate what I never had." Please don't ask me this and don't suggest that either. It isn't the case!) Four years ago, when meeting my wife I came out. Until then my environment viewed me as "the loser fatty who no guy wants to date."

Yes, life has not been kind to me. But it continued spiraling downwards when finding out we would be dependent on IVF due to Poly-cystic Ovarian Syndrome.

I got pregnant, but was wrongly diagnosed with blighted ovum/missed miscarriage shortly after. The diagnosis was a mistake, but cytotec didn't work on me and two weeks later an embryo with heartbeat was detected on the ultrasound, however she was way too small for the gestational week and already considered a non-intact pregnancy or beginning miscarriage.

From this day on, I was pushed into attending daily ultrasounds, convinced I would be miscarrying for sure and that it can be the case any day. When my daughter was still alive, yet still growing extremely bad at 14 weeks of gestation, the ultrasounds were scheduled once per week. At this point doctors were still convinced my child would die and her heart could just stop any moment.

At 18 weeks, I was still on Metformin because of my insulin resistance. This was known to the diabetic clinic, yet they still did a glucose tolerance test which of course came back with very bad results. I was put on insulin, despite having neither gestational, nor manifest type 1 or 2, and a strict no-carb diet "To prevent fetal macrosomia" which was ridiculous because my daughter was obviously growth restricted! I lost eight pounds of weight in four weeks.
The blood-gucose-debacle tyrannized my entire pregnancy, even if my levels never were truly bad - which I only found out about afterwards.

I went to a specialist for blood clotting diseases on my own, where it was discovered that I would have "Faktor-V-Mutation." Heparin would help, but the specialist couldn't prescribe it to me, however the hospital insisted that at this state of pregnancy, it would be "useless at best and harmful at worst" and denied me medication proven to be helpful.

At 23 weeks the university clinic took me hostage the first time, according to the ultrasound my daughter was two weeks behind in growth. They wanted to take her from me by cesarean section, but before they insisted in doing an amniocentesis as her femoral bone was very short. Results came back negative. "So it's cesarean, not inducing." Was what the nurse told me. I became aware of the meanings of her words only much much later...

I left the clinic by choice - which was OK, since my health and life was not affected negatively by the pregnancy. One day before I was supposed to get the first steroid shot.

The Gyn consulted a shrink, insisting I wasn't right in the head for not consenting to such an early cesarean anymore. On one hand they decided an amniocentesis for me, which could have resulted in a late miscarriage - then they wanted to abort my child, had the results of it shown any chromosomal anomalies, but then deny me the decision to make, that my child should rather die in it's mother's womb instead of a NICU Unit. The shrink eventually confirmed it would be my choice alone to make.

At 27 weeks, a driver crashed into my car at the parking spot of the mall. Nothing happened, but I was rushed to the hospital for observation. That's when I was kidnapped again and got two steroid shots against my declared wish. "Your child will die otherwise" was what the doctor yelled me in the face with.

I still refused the cesarean, but was forced to stay in the hospital for observation - which means daily Ultrasound with Doppler and CTG three times a day.

At 33 Weeks I developed Pre-Ecampsia due to stress, lack of sleep, emotional torment and inappropriate nutrition in the hospital. I refused to take medication to lower blood pressure, as it can be very dangerous for IUGR children, therefor the hospital insisted on inducing labor.

After 24 hours of being left alone in one of their birth rooms, random people checking the dilation occasionally, my daughter's heart rate began dropping.

Without saying a word, I was transported to the surgery room, had the anesthesia-mask pushed on my face and when I woke up my daughter was in another clinic.

I didn't see her for three days. She had been given formula, despite my wish to breastfeed. She had 1600g and was in a very good condition, healthy and breathing on her own. Still the NICU insisted on isolating her from me.

We never had skin-to-skin contact in the hospital and I couldn't express any milk for my little baby girl.

She was kept prisoner in a back room of the NICU for three months, despite her being healthy. They put a CD with "nature sounds" for her in endless slope. I had no idea nature sounds could be so depressing and I'm triggered by them so much now that I don't even leave the house.

More than twice the hospital wanted to have me locked up in a psychiatric clinic. I have no mental illness and am not suicidal, that's why they didn't get it through.

My daughter was sent home because we hired a nurse for a year. Privately. Even if we couldn't afford it and she wasn't actually necessary. We just wanted our daughter home with us. But despite living with her for 15 months now, she's almost a stranger to me... too much has happened. I will tell you in detail on another occasion.

I'm sorry you had to read all this but maybe I'm not alone.

Thank you for reading,

Love and Hugs.
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#2 of 11 Old 12-05-2016, 06:18 AM
 
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Your story is sad

if true. But I recommend holding onto the fact that you are all still alive, with your health mostly intact and that your daughter will grow and probably thrive despite your perception of a hard beginning. I had a hard pregnancy too, my hubby did not want kids so he was distant and not always helpful, my boss at the time was angry I had gotten pregnant right into a new job (unintentional) and I was battling weird health issues like a partially open cervix which meant spotting if I tried to do too much and eventually high blood pressure. So I was facing the possibility of single parenthood with unemployment in my future. Like you I had preeclampsia and a preemie. It was hard starting off from birth, feeling like a failure as a parent (which I couldn't help feeling) and it was a fight to get my son out of the hospital, and up to a normal baby weight by the end of the year. It was far far from what I'd imagine many people would think of as first year home with baby, and my son was very very fussy/colicy to boot. Then when things started settling down and I started getting a more positive outlook on things I found out I was unable to have more kids (or at least never naturally). This is when everyone I knew started having kids of their own. It's hard not to feel like I've gotten an unfair amount of the crap life can dish out but I try to turn back to the positives. It's all you can do, life keeps going. My son had minimal health issues from being a preemie, he's a huge kid who's weird and smart and funny.
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#3 of 11 Old 12-05-2016, 09:49 AM - Thread Starter
 
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Hello momto1,

yes, it is true. Unfortunately yes. But I understand you may be skeptical, I'd be too if I read such a testimony of a new user.

I'm terribly sorry to hear you had to go through all of this, especially that your husband was not supportive.

What are the reasons you can't have any further children if I may ask? If you rather not talk about it it's alright. I don't know if I can still have kids, we'd love to but my doctor recommended that I should not get pregnant again.

Sorry if my Grammar is not so good sometimes, I'm German and English is not my native language.

Which health issues did your son have and in which week was he born if it's OK for you to talk about it?

My daughter is currently not diagnosed with anything. Growth rate is alright, she is delayed in her physical development but her cognitive and social abilities seem age appropriate.

Happy to be alive and well is sometimes difficult if I'm honest. All my life I wanted to be a mom, but something so essential to it was taken from me. I might never know how it is to give birth, to have my newborn baby on my chest, to breastfeed and to have my newborn peacefully at home. It just feels so wrong.
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#4 of 11 Old 12-05-2016, 11:33 AM
 
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OK. I hope you're seeing a therapist or specialist now. You're clearly having a hard time processing a traumatic pregnancy and birth. Try to remember that all those people really just wanted what was best for your baby. They may have been wrong, but it's unlikely they had evil intent.


The best thing you can do now is move forward. For me, the most upsetting thing about your post is that you said your daughter is almost a stranger to you after being home for 15 months. You can see in my signature. I had twin boys born at 31 weeks. It was a very rough pregnancy. One past away and the other one was in the NICU for 9 weeks. It was horrific. But, now, 22 months later, it's no big deal. He's my baby boy.


You need to start bonding with the baby you have in front of you right now. Do something with her every day. What does she like? Coloring, running around the park, playing with stuffed animals? Do that. Be silly with her. Every kid loves silly mom. Put something funny on your head. Say, Where's that thing? And, act all shocked when they find it on your head. Pay peek a boo. Act surprised when she finds you under the blanket. Then tickle her. Smell her feet and exaggeratedly say how stinky they are as you fall over. She'll be putting her feet in your face for hours and laughing the whole time. Nothing bonds more than laughter.


Actually. Now that I write this. I think you should see a family therapist or play therapist. Explain your situation. I suspect you have no idea how to parent because you never saw loving, happy child-parent interaction. Honestly, I doubt the problem is the birth. The pregnancy and birth sucked. But, that's not why your child is a stranger to you today. Everything that happened in the last 15 months is why your child is a stranger to you today. You need to fix that problem right now. Don't do to your daughter what was done to you. Be the parent you wish you had. No. No excuses. Don't just be better than your parents. Be a great parent. It's your choice. You have it in you to stop the cycle. Do it.

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#5 of 11 Old 12-05-2016, 12:47 PM
 
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I agree

it sounds like the poster has suffered a trauma, that she now may be transferring to her daughter. I suspect health care staff saw or felt something that made them (perhaps pushily) recommend extra health care. The fact that you mention suicide at all is alarming, and that you feel so distant from your daughter. It did take until my son was nearly 4 to even consider having another kid as I think I probably was still feeling traumatized by the whole pregnancy/birth scenario, and even now I cry every time I see or hear or read about anything nearly related to birth, loss, health issues etc. and my son is 14. (I also had multiple miscarriages which exacerbated everything). I can tell you, I was never like this before my son was born. It turns out I have an immune disorder, I have no problem getting pregnant but every time I do my body kills the fetus (my son was just lucky because he was my first). It's like a horrible joke. I would not be brushing off your feelings, but try to surround yourself with help and support. I don't think you're over the trauma yet.
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#6 of 11 Old 12-05-2016, 01:20 PM - Thread Starter
 
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Hi Xerx!

I'm so sorry for your loss and the terrible experience you've had in the NICU.

I know you mean well when you say these people only wanted to do what was best for my daughter and me, though I have to disagree unfortunately. The doctors in the hospital knew me for several months and knew how devastated I was, since we wanted this little girl so much. They knew how much it would have meant for me to have a normal birth, to cuddle with my baby after birth, to breastfeed and to have her with me. Everything was denied rigorously, despite my daughter's good condition and the fact that it was logistically possible AND was done for other parents as well. My wife suspects that we were dealt with so awfully because we are a lesbian couple, however it's just a hypothesis.

Currently I'm not seeing a therapist. Please DM me if you want to know the reason why, as I don't want to post this in a public forum.

You are right, I don't want to be the parent that my parents were. And I'm actually doing what you described, especially the feet part and the hide and seek! She's so freaking cute when we do that. It's just that I can't really feel the happiness for long. The memories return and I can't help but thinking about all the health issues my daughter will have to face as she grows older. Diabetes, Asthma, Allergies and mental illness. Everything because I wasn't capable of delivering her full term and spontaneously. She deserved better. She deserved so much better and it's my fault that she can never reach her full potential. I'm so sorry and hope she will forgive me one day. Forgive me that I couldn't - and wasn't allowed to give her the birth she deserved, forgive me that I couldn't give her the mother's milk she deserved.

Even my mother was capable of giving birth to and breastfeeding me - despite all the flaws she has and had. I failed my daughter even in these regards... These first moments, days, weeks after birth are so important... I don't think anything can ever fix this again. We do move on, we do live on. We survive. Somehow.

I have forgiven my parents for everything they have done. However, I will never forgive the people in the NICU that they let me hold my baby girl when she was already eight days old. I won't forgive and don't want to learn to.

You said the pregnancy and "birth" weren't the problem and I have to disagree with this again. The problem was the deliberate and radical separation from my daughter without any medical reason - and which actually went completely against the guidelines of how preemies and their parents are treated in Germany.

The thing is, I meant she feels like a stranger to me on the emotional part. Please consider that I mentally prepared myself for the worst case scenario during the whole pregnancy. Not because I'm generally such a negative person, but because every doctor I met told me so. I don't view the cesarean as a birth. I wasn't even present when my daughter was "born". Absolutely nothing about the surgery and the time after reminded me in motherhood or childbirth. How can someone even when you only see your child for an hour per week, starting at the third day of it's life?
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#7 of 11 Old 12-05-2016, 01:40 PM - Thread Starter
 
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it sounds like the poster has suffered a trauma, that she now may be transferring to her daughter. I suspect health care staff saw or felt something that made them (perhaps pushily) recommend extra health care. The fact that you mention suicide at all is alarming, and that you feel so distant from your daughter. It did take until my son was nearly 4 to even consider having another kid as I think I probably was still feeling traumatized by the whole pregnancy/birth scenario, and even now I cry every time I see or hear or read about anything nearly related to birth, loss, health issues etc. and my son is 14. (I also had multiple miscarriages which exacerbated everything). I can tell you, I was never like this before my son was born. It turns out I have an immune disorder, I have no problem getting pregnant but every time I do my body kills the fetus (my son was just lucky because he was my first). It's like a horrible joke. I would not be brushing off your feelings, but try to surround yourself with help and support. I don't think you're over the trauma yet.
Wow wait a second! I never mentioned suicide. I just said it's hard to be thankful and happy about what happened, just because we're both alive and healthy. That I'm sick of this "at least alive and physically healthy" attitude that was shoved down my throat for so many months by literally everybody.
Several decades ago, most hospital births were vacuum or forceps extractions, often done unnecessarily. Separation of mothers and newborns was common practice until the early 2000's. We are beyond this, because even medical professionals had to realize that birth experiences matter. That breastfeeding matters and that bonding with your newborn matters. This isn't just a problem in my head.

Life is about more than being alive and "at least physically healthy" which I am also not. Yes, the well being of a child is important, but even the strongest and healthiest child deserves better than growing up in the shadows of a broken mother.

And yes, I am nowhere near over my trauma, that's why I posted here in this part of the forum which is about traumatic birth experiences. As far as I'm concerned, isn't this the purpose of this sector? Or does it say explicitly it's just for mothers that have successfully overcome their traumatic experiences?

I wanted to find other moms who might be able to relate to what has happened to me. I know you all mean well, however telling someone to "suck it up" and be happy with everything is not helpful and is exactly the reason why traumatized mothers might not be able to heal.
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OK, I'm calm, I apologize.

I'm sorry that I yelled.

It's just a really emotional and sensitive topic for me. 15 months aren't 15 years.

When my daughter was three months old, one week home, my therapist at the time asked me "are you still not over it yet?" and couldn't believe this was more than "just a tiny shock because of the sudden and unexpected birth."

It's just tiring and exhausting that everybody who I tell my story is questioning me - and is defending the medical staff, despite their obvious violations.
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If you read it from the other angle, I'm telling you I'm still dealing with it FOURTEEN years later. I'm a bit less angry now though. I had a midwife tell me that I should stop partying and look after my baby better (I don't think she actually read my file because midwives don't generally have care of preemies) and I had one mom tell me I should have done yoga and I would have had a better birth. It took all I could muster in the face of all the bu__t to not rip people's faces off. And yes I had a doctor in the NICU ask me why the h--;; wasn't I happy? (about 2 weeks or less after birth) and he was shocked when I told him all the moms I had talked to in the NICU were similarly traumatized and angry and depressed (what a senseless idiot). But to make your peace in the world will give you more happiness.
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Trigger! IUGR-Preemie. Will these wounds ever heal?

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Originally Posted by Pugtato-Chaihuahua View Post
Hi Xerx!



I'm so sorry for your loss and the terrible experience you've had in the NICU.



I know you mean well when you say these people only wanted to do what was best for my daughter and me, though I have to disagree unfortunately. The doctors in the hospital knew me for several months and knew how devastated I was, since we wanted this little girl so much. They knew how much it would have meant for me to have a normal birth, to cuddle with my baby after birth, to breastfeed and to have her with me. Everything was denied rigorously, despite my daughter's good condition and the fact that it was logistically possible AND was done for other parents as well. My wife suspects that we were dealt with so awfully because we are a lesbian couple, however it's just a hypothesis.



Currently I'm not seeing a therapist. Please DM me if you want to know the reason why, as I don't want to post this in a public forum.



You are right, I don't want to be the parent that my parents were. And I'm actually doing what you described, especially the feet part and the hide and seek! She's so freaking cute when we do that. It's just that I can't really feel the happiness for long. The memories return and I can't help but thinking about all the health issues my daughter will have to face as she grows older. Diabetes, Asthma, Allergies and mental illness. Everything because I wasn't capable of delivering her full term and spontaneously. She deserved better. She deserved so much better and it's my fault that she can never reach her full potential. I'm so sorry and hope she will forgive me one day. Forgive me that I couldn't - and wasn't allowed to give her the birth she deserved, forgive me that I couldn't give her the mother's milk she deserved.



Even my mother was capable of giving birth to and breastfeeding me - despite all the flaws she has and had. I failed my daughter even in these regards... These first moments, days, weeks after birth are so important... I don't think anything can ever fix this again. We do move on, we do live on. We survive. Somehow.



I have forgiven my parents for everything they have done. However, I will never forgive the people in the NICU that they let me hold my baby girl when she was already eight days old. I won't forgive and don't want to learn to.



You said the pregnancy and "birth" weren't the problem and I have to disagree with this again. The problem was the deliberate and radical separation from my daughter without any medical reason - and which actually went completely against the guidelines of how preemies and their parents are treated in Germany.



The thing is, I meant she feels like a stranger to me on the emotional part. Please consider that I mentally prepared myself for the worst case scenario during the whole pregnancy. Not because I'm generally such a negative person, but because every doctor I met told me so. I don't view the cesarean as a birth. I wasn't even present when my daughter was "born". Absolutely nothing about the surgery and the time after reminded me in motherhood or childbirth. How can someone even when you only see your child for an hour per week, starting at the third day of it's life?


I'm sure the doctors didn't know how much a calm birth would've meant to you. Oh. I'm sure you told them vociferously. I'm also sure they figured they knew better and they figured it needed to be done.

I don't know the LGBT atmosphere in Germany. I thought it was at least as tolerant as the US. I can't imagine some doc thinking to "punish" an LGBT mom in such a way in the US. If it's that intolerant, I am so, so very sorry. That is truly unacceptable.

You're reasons for not seeing a therapist are your own and you're under no obligation to share them with anyone. However, you clearly need to work through these issues with someone.

I don't understand the comment that you "don't feel the happiness for long". Parenting isn't continuous joy. It's like any relationship. It's more about finding a peace and harmony and caring. IMO, you need to continue to build the connectedness one moment at a time.

I don't know why you're worried about diabetes, allergies, asthma and mental illness. Plenty of people are c sectioned, formula fed, etc and they turn out fine. Its not like her health is ruined because things didn't work out fine. Frankly, you're more injured than your dd by the experience. It would never occur to me to seek my son's forgiveness someday because he had such a rough start to life (c section, formula, no skin to skin, intubated, the full NICU experience). Neither of us did anything wrong. Shit happened. Bad things happen to good people. And if she does have some health problems down the road, you'll deal with them. There's nothing you can do about it now, so why beat yourself up about it?

Overall, your birth experience sucked. It was horrible and the fates/God/the universe took it from you. And you should deal with the pain. You have every right to be upset by it. But, much, much more importantly, you need to deal with your daughter in front of you. She needs you now and you need to do whatever it takes to form that relationship.

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#11 of 11 Old 12-06-2016, 04:23 AM - Thread Starter
 
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If you read it from the other angle, I'm telling you I'm still dealing with it FOURTEEN years later. I'm a bit less angry now though. I had a midwife tell me that I should stop partying and look after my baby better (I don't think she actually read my file because midwives don't generally have care of preemies) and I had one mom tell me I should have done yoga and I would have had a better birth. It took all I could muster in the face of all the bu__t to not rip people's faces off. And yes I had a doctor in the NICU ask me why the h--;; wasn't I happy? (about 2 weeks or less after birth) and he was shocked when I told him all the moms I had talked to in the NICU were similarly traumatized and angry and depressed (what a senseless idiot). But to make your peace in the world will give you more happiness.
Let me give you a hug. You have no idea how much I can relate to that. What the doctor in the NICU said to you seems to be the common opinion in NICUs, sadly. I was also told that "no other woman ever" would have been this devastated "with a living child that actually has a good prognosis." I got the impression that everybody was so insistent on me moving forward, forgetting what happened and put the checkmark at "awesome but tough birth experience." Nurses have also told me that in comparison to other moms I would have it nice, since I "got around" a vaginal birth and would have others who take care of my baby while I can sleep "and doesn't even have to pay for this service." Oh and one relatively old doctor told me "My son is 21 and went to Australia, shark diving. Believe me, I'm also worried." As if a child in the womb/preemie/newborn were the exact same as an adult young man who can decide for himself.

Xerx, the overall LGBT atmosphere in Germany is first of all no marriage equality. We have a civil union though and a rather stupid law that regulates adoptions.

We live in the southwest which is very conservative and several medical professionals at the hospital downright insulted me, saying how sad it is that our daughter, who is such a cute baby would have to grow up with the two of us. I had the overall impression that to the doctor it would be incredibly important that I won't have another baby ever again, as he stated this several times.

The reason why I lost faith in the medical professionals was the fact that they were so eager to deliver my daughter at 23 or 24 weeks, when the pregnancy actually lasted almost ten weeks longer. I don't see any benefits my daughter would have had from such an early delivery.

Last edited by Pugtato-Chaihuahua; 12-06-2016 at 04:26 AM.
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Most users ever online was 449,755, 06-25-2014 at 12:21 PM.