NICU trama, anyone else have PTSD?

[twinpossible]

Months later I am still having nightmares and can't tell anyone ALL of what I experienced in those NICU weeks. I begin to panic and cry. We were there for 11 weeks and still came home on feeding tubes. I was there by myself with out hubby for 9 of those weeks because his paternity leave ran out and the girls were at a speacial hospital far from home. My girls are healthy now but I'm still traumatized. Beginning to think about getting some counseling. Anyone else out there feeling similarly?

[TiredX2]

I couldn't read and not reply.  If you're not getting any information here, you might want to try a couple other forums.  These both come to mind (I know they're not a perfect fit, but you might find someone going through some of the same things/ having the same emotions/have had them in the past):

Postpartum Depression:

http://www.mothering.com/community/f/28/postpartum-depression

Special Needs Parenting:

http://www.mothering.com/community/f/157/special-needs-parenting

Parenting Multiples:

http://www.mothering.com/community/f/158/parenting-multiples

Especially in the last, you might not find people going through what you are *right now* but people who have been there in the past.  I can only imagine the horror to have your babies so ill for so long and be doing it removed from  your support network.  I think counseling is a great idea and am really impressed that you can see your need for it.

[Amys1st]

We have been out of the NICU for 5 1/2 years now, since my DD will turn 6 in Feb. We spent 3 mos and 3 day at the NICU and took home a baby on O2 and she had very little issues and was healthy quickly and a bouncing baby within months.

All that, we spent about 15-18 mos dealing with PTSD. It was really rough when she turned one. Mainly, we had issues when a few parents we knew from the experience who had kids who had a rough time. Also, a mom of multis lost all the babies. Also a few parents ended up splitting up. From the NICU? Nope, they most likely had issues before hand and this just sent it over the edge.

But yes, we had it as well and everyone is different how you deal with it.

[twinpossible]

Thank you Amy. Luckily we did not loose any NICU babies while we were there but I was always troubled how seldom I saw other parents. I was there for 15-18 hours every day and only went to my sisters (our hospital was very far from our house, over 7 hours away) to sleep. There were some children there that were only visited once a week for an hour. Really? How horrific. What was hard for me in regards to the other children was watching all them them go home before we did. One day I walked into the NICU and we were the last ones left :( that was a hard day. I was happy they went home but sad it was not us.

Our babies are healthy now, thank God! Our doctor is amazed and says if I never told him their past he would never know what they had been through. I count myself lucky and very blessed. I guess I am just still really hurt about how my babies came into this world and my first months with them as a momma. Don't know how to let that go.

[Zan&Zav]

I'm here with you. Just over 5 years later and still panic at alarms, the smell of hand sanitizer. My little guy had to in for eye surgery right before Christmas and I was fine. Until they passed me the yellow paper gown. It was awful. but, that said, I was lucky and so is he. He has taught me so much appreciation for life, for love, faith in God. He is an amazing little guy. From his rough start at 25 weeks 4 days and 1 lb 14 oz. He is now happy, mostly healthy, and excells at everything he does.

A long answer to a short question I guess. Yes PTSD and I don't think it ever goes away. I just kinda live with it


Eta, someone above mentioned marriage problems, my husband left with the nicu as well. Some people just can't handle it.

[Siera]

Originally Posted by twinpossible 

Thank you Amy. Luckily we did not loose any NICU babies while we were there but I was always troubled how seldom I saw other parents. I was there for 15-18 hours every day and only went to my sisters (our hospital was very far from our house, over 7 hours away) to sleep. There were some children there that were only visited once a week for an hour. Really? How horrific. What was hard for me in regards to the other children was watching all them them go home before we did. One day I walked into the NICU and we were the last ones left :( that was a hard day. I was happy they went home but sad it was not us.

Same here.  I lived with my preemie 24/7 and saw other parents maybe every other day?  It was awful.  I too suffered from PTSD and I thought it would be great to have some sort of support group with other moms in the NICU, but they just weren't there!  And, like you, I would get so down when I saw other babies go home and not us.  I really struggled with that.

I don't think its atypical to have some sort of PTSD after such an event.  For me, the whole delivery (abruption)  and subsequent NICU stay (7 weeks) was very traumatic.  You go into pregnancy with an idealized version of what is supposed to happen and our whole culture prepares you for what you are supposed to experience, and then it doesn't happen the way you expected.  Its hard to stay sane through something like that!!  It is a traumatic experience and your body and mind deals with it the best way it can: it tries to protect you from a bad experience.
 

[robin7373]

I had my twin boys a little over 7mths ago & yes I am still traumatized & Yes I do have PTSD. My boys were in the NICU as well, I cried everyday, under the whole story of mine I was affected in a nasty way. I have nightmares about doctors & they attack me & in actuality they were full on attack mode to start because I'm bi-polar & they said it doesn't look good on paper & the rest of what they did to me I just am still stuck & being further stressed from these same people. So I know exactly how you feel, I'd like to think it possible to get over but to me at this time seems impossible & I am unsure when I would overcome what was done to me. I don't have the answer but I can still hope there will be a time I can move past it.

[AmyJeanneBee]

Yes, PTSD is normal for NICU parents. It is not just limited to the Mother either. I read somewhere that 76% of preemie parents have PTSD. Right now, I'd really like to go get an IUD inserted but for some reason that just really bothers me. The thought of more medical treatment and being in the stirrups makes me feel panicky. I'm working with an excellent therapist who has experience with Mothers pre and post baby. She has really helped a lot. I recommend searching out therapist familiar with traumatic births. Also, I once read a book called Waking the Tiger by Dr. Levine. It was helpful on how trauma "lives" in the body. 

PTSD triggers: the image of watching my baby gasp for air in his isolette, every eye exam, the look on my doctor's face after that first cervical exam when she discovered I was 5cm dilated, and just walking by the emergency entrance where my ambulance came in makes me feel panicky,... ugh....plus so many others. It is a heavy burden some days.

I have faith some day these memories won't be so charged for me. We are stronger than we know and this too shall pass.

[aliciar]

I just read your post and the many responses. Wow! It's so good to know I am not alone it these feelings! My little girls was in the NICU for 5 weeks and 2 days. Short compared to other experiences but those were the longest days of my life. I too spent all my waking hours in the NICU. And yes every night when I went home to sleep I would wake up screaming and crying because my baby always stopped breathing in my nightmares. The nurses constantly told me to go home and twice they asked the doctors to talk to me about caring for myself first. But how do you do that when your baby is laying in a plastic box with lights and wires all around. I stayed and did anything I could for my little girl. When I couldn't hold her or touch her I stood there and told her how beautiful she was and how strong and brave she was being, I told her about our God that loved her and was holding her when I wasn't. When I could sit there and hold her with all those stupid wires getting tangled and all the machines freaking out I did. I sat there and held her until they made me put her back. I cried everyday and ate very little. No one understood. And very few people ever will. For 4 months after we brought our little girl home I still had nightmares every night. And even now the smell hand sanitizers and latex make me nauseas. Beeping, and squeaking shoes make me angry. Most of the time these days (my little girl is 10 months now!) I feel fine, happy, normal, but every now and again it all comes crashing back or one little reminder causes me to snap. I say all this to let you know it's ok to feel the way you do. But you must find a way to cope, to get through the things that will hamper your ability to parent and things that will cause damage to relationships. For me that was the anger at all that had happened and the frustration at people who took my experience lightly. Sometimes this was even directed at my husband, he also didn't quite get what I was going through. Whatever you may feel talking with a counselor or even someone with a similar experience wouldn't hurt right? And counting what is a blessing and forgetting what hurt in the past. I heard a quote the other day it goes, "Yesterday is history, tomorrow is a mystery but today is a gift that's why they call it the present."

[bandgeek]

I definitely have issues.  I don't really know what to do about them, but after 4 years I finally have medicaid, so I'm going to bring it up at my first doctor's appointment.  I figure they'll either send me for therapy, or give me some pills.  I'm down for either.

[otheramerica]

I didn't have the typical NICU experience in that my son was not born premature, but I am working through PTSD. My son was born at 40w3d.  About an hour after birth he started to turn blue. The MW put the O2 monitor on him and found out his O2 sats were in the 60s.  Fire department was called and he was rushed to the nearest hospital. My dh left to be with him. My oldest ds met his brother for the first time while he was being loaded into the back of an ambulance.  He was only in the NICU for 8 days but it was the longest 8 days of my life. I have the images of him laying there sedated and on the ventilator burned into my memory.

After he came home I was fine for a few months. Then I started to have nightmares, auditory hallucinations, and crying spells. I once broke down in the grocery store because the beeping of the check-out thing sounded like the beeping the machines would do when he stopped breathing or when his heart rate went too high.  18 months later and I still get chills at the sound of a siren. My MIL gave ds2 a book about a fire truck that has a button you can push to make the siren go. I had to give it away because it was bringing back my anxiety attacks. Someone mentioned hand sanitizer; that still gets me too.  

I went to therapy for a while but it was too expensive so I stopped.  One thing I learned was "grounding".  When I start to feel anxious (doesn't happen as often any more), I would hold onto my wedding ring and remind myself that Paul is healthy and out of the NICU.  The sirens aren't coming for him. He is staying at home with us because he is better. I quote the bible verse that I have in my signature.  Maybe you could think of something tangible you can use to ground yourself. It helps to have a phrase that you repeat too.  Best of luck! This is a long road, but you will make it!!

[Amanda Leigh]

I was just looking on this group for information about anxiety about the NICU. We only had 17 days in the NICU, but they were still very hard. My boys are 7.5 months old and I still have a full body anxiety attack when driving the route from my home to/past the NICU. We have had to go to some appointments in the medical offices next to the hospital and I have to plan extra time to allow me to calm down. I have a hard time not just "getting through it." By that I mean that I spent the last 6 weeks of my pregnancy in the hospital and 2.5 weeks with the boys in the NICU then lots of therapy and follow up appointments just doing it. I didn't realize that was a problem until recently. When people asked me how I did/do it, I would answer, "you just do."

I would go for counseling if you can afford it or insurance covers it. I regret not saying something earlier about PPD because I felt like I missed out on a lot of the boys early days/weeks/months. I have a NICU follow-up clinic this Wednesday and I'm also going to see if there is a NICU parents support group, so maybe that's an idea for you too.

I hope you can get some relief and peace about your experience, good luck!

[~bookcase~]

my preemies just turned 3 and i am mostly ok now

but there are still triggers that make my heart beat a little faster, i have to ground myself in the here and now, breathe deeply and let it out like steam. i did a lot of EFT for the trauma and had some amazing results. i was looking into EMDR but EFT and kinesiology got me to a new level of letting go.

i needed something that went deeper than just talking about it. these other therapies can release pain without so many eeeeeeendless words and words and words.

what **** me off most about nicu staff at the time, is that nearly every day they would tell me that i'd forget all about the start. i cannot understand how any mother would go through nicu without a tearing pain right through her soul. it's like almost losing your baby every.single.day. who can get through that and forget it??? yes, feelings will (eventually) change over time, sometimes only after outside help, but each child's start is unique and part of their biography.

i also get mad that ptsd seems to be fobbed off as postnatal depression sometimes (no ref to above links pp - there are similar coping mechanisms that can be useful and pnd can exist alongside ptsd) as if grief is something to be medicated and numbed out. we need safe space to feel the emotions and know that we can stay whole.

what you feel is real and true and valid. and yes, you can heal.

i love to look at my children, touch their arm or head, breathe their smell and thank God that we survived. it's like that sense of every moment being precious that you get in nicu, lasts forever. so gratitude can creep into the abyss and bring some light when your child is still around. in reality none of us know how long anyone will stay with us/ we will stay with them.

[mommykerrie]

I had no idea this could even happen. I'm doing research for a follow up to my article about 12 ways to support a friend with a nicu baby. A parent wanted an article about AFTER, coming home, dealing with family and friends and all that. I came across these posts about PTSD and am crying! My Sam was in the NICU only 7 days in October 2009 after having meconium aspiration and a super fast birth. It was hard to balance the needs of our other 4 kids and I always felt guilty not being at the hospital when he could have easily died at any time. I still get panicky when I think about it and savor this kid like you would not believe. It's also made me afraid to have another child because I had endometriitis (maybe, or maybe not ... my doctor seemed not too sure but antibiotics fixed it), and can't imagine doing the NICU stint again. If I feel this way after only a week dealing with it, how must those who have a baby (or more than one) in the NICU for months feel? My heart goes out to them. We need to be a little gentler with NICU parents, both while they are in the hospital and when they come home.

[Cassius17]

I'm 99.99% sure I've got post-NICU PTSD. My son was a 27/5 weeker, now 4 mo actual/5 weeks adjusted. He spent 77 days in the NICU. Since we've come home on April 2nd, I have violently attacked my boyfriend and gotten into a huge almost violent screaming match with my mom. This behavior is completely out of my character. I have almost no recollection of the NICU experience, because I have blocked most of it out. The baby I brought home, in my mind, is not the baby that was in the hospital. So many strange, mental and emotional feelings and/or lack of feelings that I had no idea were related to PTSD. I was very aware in the hospital that I would have some sort of reaction to all of the trauma, and I remember verbally expressing my curiosity as to how the trauma would eventually manifest itself. Well, apparently in a violent rage, unfortunately. And blacking out most of the event, which I'm not too upset about.