Monday, April 2, 2007

Post-Traumatic Stress Disorder

This post has been in my drafts folder for a few weeks. I started it at a time when I was not really in the right frame of mind to be writing about stress. For the moment, my head is a little clearer. But, knowing the stress level in my house can change in an instant, I figured I better get this one out there before something changes.

There are a ton of websites out there devoted to PTSD. I pulled the following symptom list off of Medline. http://www.nlm.nih.gov/medlineplus/ency/article/000925.htm


Symptoms of PTSD fall into three general categories:

1. Repeated "reliving" of the event, which disturbs day-to-day activity
Recurrent distressing memories of the event
Recurrent dreams of the event
Flashback episodes, where the event seems to be recurring
Bodily reactions to situations that remind them of the traumatic event

2. Avoidance
Inability to remember important aspects of the trauma
Lack of interest in normal activities
Feelings of detachment
Sense of having no future
Emotional "numbing", or feeling as though they don’t care about anything
Reduced expression of moods
Staying away from places, people, or objects that remind them of the event

3. Arousal
Irritability or outbursts of anger
Sleeping difficulties
Difficulty concentrating
Exaggerated response to things that startle them
Hypervigilance (click here for a definition)

Let me start by saying that I was never officially diagnosed with PTSD. I was never medicated for it either. But, boy did I ever need it!

When Paige was in the NICU I didn't get to see her every day. We lived 90 minutes away and only had one car (I gave up my company car knowing I was not going back to work). I sat at home in a constant state of anxiety. When the phone would ring I would almost lose consciousness from the fear that it was the hospital on the other end. During the times when we would go see her , on the weekends (we stayed near the hospital on the weekends) or sometimes at night, I would just sit and stare at her. Not only were the monitors incredibly loud (40 bed NICU) but the helicopter landing was above the NICU. Every time we went up to see her, she had a different tube or wire attached to her. We would sit there for hours.

How did I cope? Tylenol 3 with codine. Yep, I admit it. I hardly used the meds after my c-section but sure abused them after I recovered. My doc had no problem giving them to me and I sure had no problem taking them. Right before Paige came home (after 78 days in the NICU) hubby started questioning my intense need for them. By that time I was mostly taking them at night to help me sleep but who the hell was he to tell me that I had a problem? (ummm, my caring husband, that's who) Every time I tried to fall asleep without them, I could hear all of the NICU noise. I would cry myself to sleep.

After Paige came home I was in a constant state of having to be in control in order to silence my anxiety. I questioned everything that was told to me. It was made worse when I caught a dosing mistake on Paige's meds. That put me over the deep end. I felt that I needed to double check everything or Paige would die. I couldn't leave her with anyone for fear that something would happen to her and I wouldn't be there to save her.

It's no wonder why hubby and I were struggling to connect!

One day Paige's OT told me that she had heard about how preemie parents were more at risk (than parents of full term typical kids) for PTSD. I guess I saw it as a sign of weakness. "That's not me. Look how in control I am." On the inside I was drowning. At the time there wasn't much on the internet so I had no way of being validated for the way I was feeling.

The stress was doing a number on my GI system. We couldn't go anywhere because I didn't know when I was going to need to go to the bathroom.

The stress was doing number on my muscles too. I hurt everywhere.

I was not living. I was simply existing.

Like I said above, I was never medicated for it. Had there been others (on line) who were admitting to suffering from PTSD, I would have jumped in and said, "me too." and gotten help. But, no one was talking about it. I am so glad that people are opening up and getting help now.

I am doing fine now but every once in a while it creeps up on me and takes a hold of my world.

PTSD has been discussed on a previous post titled Silence. Please check out the comments section. Many people took the time to discuss their own situations and provide links to research.

34 comments:

terri w/2 said...

When I was discharged after the birth of my girls and being in the hospital for 2 solid weeks. .with near-death and trauma. .I remember just having a weird sensory assault for about 3-4 days after. Everything seemed SO vivid on the outside - the grass SO green, the flowers so vivid - the smells so intense, the birds were almost too loud to enjoy. . It was really a bizarre thing.

Several years later, there had been a plane crash with a number of survivors who ran from the burning wreckage. The flight attendant said in an interview how vivid everything seemed afterward - the sky so blue, the grass so green - extremely heightened senses to everything. I thought - yeah, I know EXACTLY what you are talking about!

I mentioned this to a counselor once, and he said that the only time he had seen this, was in extremely traumatic situations, such as prisoners of war. At that point, I began to take notice of PTSD, as you really don't hear about it associated much with hospitalized people. I'm amazed, Stacy, on your Silenced post how many mothers have already admitted to either strongly suspecting they have it also, or who are already in treatment. I think the NICU environment is really doing a number on our long-term mental health - among other things.

And yes, there should be more studies on this being conducted.

The Preemie Experiment said...

Terri wrote: "I remember just having a weird sensory assault for about 3-4 days after. Everything seemed SO vivid on the outside - the grass SO green, the flowers so vivid - the smells so intense, the birds were almost too loud to enjoy. . It was really a bizarre thing."

Oh my gosh Terri! I had totally forgotten about this feeling.

I was in the hospital for a total of 3 1/2 weeks. I went in right before Halloween and came out right before Thanksgiving. I remember standing outside of the hospital, without my baby of course, and looking around at all of the people. It was cold outside and it seemed as if the world was moving in slow motion. You could see everyone's "breath" because it was so cold and it seemed like it just stayed in mid air. The snow was so white. And the night sky was blacker than black.

One very big feeling that nearly knocked me out was how the world continued even though ours came to a halting stop.

Aidan's mom said...

WOW! I had forgotten about this sensation as well. I lost a lot of blood the night of Aidan's delivery due to HELLP. The docs were a little scared for me they later admitted.

Anyway...everything seemed more intense. Sounds, smells, etc. Interesting to read others have had this experience.

And Stacy...I TOTALLY relate to the feeling of watching the world go on as your own had come to a standstill. I was almost indignant that others were living their happy, carefree lives.

I remember feeling it intensely when I went in 3 days after being discharged. I stayed in the hospital for 5 days post c/s. Anyway, this hospital has you and your baby come back 3 days after release to do a postpartum check on you and baby.

Well, I, of course, showed up without baby. I was doing "OK" until I saw two moms in the waiting room with two "porker" full termers and had the receptionist checking me in ask me why I hadn't brought my baby.

I burst into hysterical tears and a nurse took me back to an exam room. Turns out the receptionist had not bothered to read that my baby was in the NICU.

I am sure I seemed nuts to the other women in that room.

I am just the mother said...

I am still in treatment for PTSD. I am on Zoloft which really helps, when I take it. I have such a hard time keeping my boys things in order that sometimes I forget and then it snowballs into me getting really upset or nervous. I have to say that Zoloft has really helped me. I also suffer from depression but that has been going on for more than 20 years. I have been on different meds throughtout my depression and find that Zoloft has helped the most.

I knew that I had a problem with PTSD when I would cry a few nights before we would see the Neo and couldnt sleep. Or I would see something horrible on the news that had happened to a child and I would freak. Now mind you I have triplet boys that are about to turn 1 on Sunday. So I have 3 I have to worry about constantly which leaves me exhausted mentally and of course physically. One is doing fantastic in every way, the second one is doing fine but has a slight delay, and the third is about 4 pounds lighter than the other two and shows almost a 38% delay with his motor skills, although he has no problems with his verbal skills. He talks nonstop. His weight is enough to get me into a tizzy. Our Neo is kinda abrupt and I dont want any trouble. Good news is that we havent seen her in 4 months and she was really cool with his weight then.

Tomorrow is D Day for our one year checkup with the NEO. Since being on Zoloft I am finding that I am not so upset and panicked that we are going. In fact I am kinda looking forward to getting out of the house and talking to some adults!!

Next week we are venturing into the NICU to celebrate the boys birthday with the nurses who cared for them for 3 months. Boys were 27 weeks 4 days. I am a little worried about walking through those doors because of all the memories but I am not one to walk away from what I fear. I cant wait for the nurses to see the boys and see that all their hard work has paid off.

Christine

Lori said...

PE,

I am not sure to which med your daughter's psych was referring. Because I don't treat children, I thought it might've passed under my radar, but a search of the FDA website didn't show any drugs recently approved for the treatment of pediatric anxiety, either. If you find out, I would be interested to know.

Helen,

Thank you for the welcome. I've been reading here and at ND's site for quite a while. Sometimes I find I like to be a listener better than a talker, however, so I haven't posted before today.

As I said, my daughter Kate was born at 27 weeks and is now 9 years old. Until about a year ago, my husband and I thought she had escaped relatively unscathed. Recently, however, she has started to display some psychiatric symptoms which I am convinced are related to her prematurity. She has always been a very emotional child, but in the last year or so, her affect has become increasingly labile. She will come to me sobbing and when I ask what's wrong, all she can say is, "I don't know, mommy. I just feel SAD." An hour later, she appears happy and carefree...and an hour after that she can be so angry and frustrated she's pulling her hair out (yes, she has literally started doing this).

Were she an adult, I would tend to label her symptoms as something lying on the borderline personality disorder spectrum. Her main problem seems to be an inability to regulate her emotions and to categorize and react appropriately to stimuli.

I contacted her primary neonatalogist (also my friend), who gave me some statistics. End result being...yes, this is probably a preemie thing. Kate is now seeing an LCSW who specializes in working with children, and I think it's helping. But, the fact of the matter is it's breaking my heart...

Our situation has rekindled my interest in neonatology, which is part of what has brought me here. The other is a desire to see if anyone else has experience with this.

Take care,

Lori

Helen Harrison said...

Lori,

I'm so sorry to hear about your daughter's problems.

Many of us here, to a greater or lesser extent, are dealing with our children's psychiatric impacts from prematurity. The issues you have described are very familiar to those of us who are also on the Preemie-Child list (for parents of preemies over the age of 4.)

On the Preemie-Child list many children have ADHD and/or autism diagnoses or symptoms; then there is OCD, bipolar, depression, tics, the self-injurious behaviors, and more. In some cases, these problems seem even more disabling then those handicaps usually mentioned in neonatal follow-up studies.

MRI studies are offering new insights into the possible origins of these problems. I hope that they someday result in better treatments, but in the meantime it seems really important for parents, teachers, and the children themselves to have a better understanding of the possible psychiatric aftermath of prematurity.

I'd love to invite Dr. Terrie Inder to be part of this discussion, but I suspect she is too busy doing these MRI studies. Ditto, Dr. Joseph Volpe. And there are many others...it is hard to keep up with all the emerging research.

It would be really valuable to merge their insights from their MRI studies with your own as a psychiatrist and mother of a premature child.

Two MRI studies I'm working my way through right now seem especially relevant to this discussion.

The first by Thompson et al.(Terrie Inder is also an author)is "Perinatal risk factors altering regional brain structure in the preterm infant."
_Brain_2006 (my copy is from the Internet _Brain Advance Access published September 28, 2006.)

In this study, the orbitofrontal region in preemies was found to be reduced by 1/3. "This region," the authors write, "is known to be sensitive to stress and mediates emotional responses. Patients with lesions within this region may display irritability, social inappropriateness, poor judgement, lack of persistence, poor frustration tolerances, and inflexibility."

Another study that I've just started reading is Skranes et al. "Clinical findings and white matter abnormalities seen on diffusion tensor imaging in adolescents with very low birth weight." _Brain_2007;130:654-666.

When examined by this special MRI technique, adolescents born prematurely were found to have abnormalities in several white matter areas associated with perceptual, cognitive, motor and mental health impairments -- including autism.

The diffusion tensor imaging method of MRI seems to be better able to detect structural changes in white matter than conventional MRI.

I also would like to see MRI studies of, say, the hippocampi of mothers of preemies. I bet the consequences of prematurity can be seen in *our* brains, too.

Joan McKenty said...

In retrospect, I can look back and see issues that I would see are likely PTSD. I can see now that I was in a kind of shock.

I also remember in my first days after the birth there were SO much going through my mind - on all levels and SO intensely. I remember thinking that if I could type what was actually going through my mind I would probably have a best seller.

I was just too exhausted to even BEGIN to think of typing! I WISH I could remember what was going through my mind in those few days or weeks but the thoughts and feelings faded away like a dream very shortly after.

I speculated that on one level, with the surgery and anesthesia and the unnatural childbirth, my mind and body had responded as if I had gone through a death and spewed out a life review that would likely ordinarily occur at that time - the time of death.

On the spiritual level, at the time of birth, when my mind and body were anesthetized, I imagined that my son and I were in some spiritual realm poised between life and death, battling between warring forces, and we made the leap into life.

And it having been such a battle - that when I finally did awake, I was completely spent. I wondered, too, in that battle, in that realm between worlds, between life and death, did I rescue him? Or did we make the choice to leap into this world, into this life, together?

And I entered a new world where all those thoughts and feelings faded away like a dream and I was a mother, first at home without a child in my arms and then, later, at home holding an infant.

And then at home, mother and child, the window into that other world closed. The memories of the time of the birth slipped away into a forgotten realm - back into the unconscious, half-conscious realm I had been in at the time of birth.

Slipped away until years later when, like a detective, I had to go looking for clues to what happened, had to go searching for records, had to start reading and researching and find out - what happened to me and my child when I lay unconscious.

I still don't know. I still don't have all of those records fifteen years later.

Joan McKenty

Anonymous said...

I was first diagnosed with PTSD during my 3rd pregnancy. This pregnancy came on the heels of the death of my 23 week preemie son and a miscarriage. My OB consistently told me that this baby would be fine and most likely go to term. From the moment I hit 18 weeks I was overcome by PTSD. All my worst fears came true and I was hospitalized with preterm labor at 20 weeks. My daugter was born 4 weeks later. I took klonopin during my hosptial stay but never seemed to need it during the 125 NICU days. My symptoms come alive whenever I think, see or read about pregnancy or birth. I can talk all day long about my daughters NICU experience but can't mention a word about giving birth (both were vaginal births) without having some sort of physical response.
Before I was a stay at home mom, or as I like to call myself 'domestic engineer,' I was a very successful consultant. I think the lack of control that I felt during my pregnancy contributed to my PTSD and I think those same fears of the unknown sometimes capture my mind at home.
Before klonopin, I wasn't a big fan of meds but I really like this drug b/c you only need to take it at the onset of an episode. And it works within 15 minutes so you can start to regain control of your mind and emotions. PTSD is a very real thing. I feel like most people dismiss it as being an 'emotional woman.' PTSD forces you to keep distant from certain thoughts b/c they evoke such serious emotions. It saddens me that I feel this way about pregnancy as I always wanted more children but I know my mind couldnt handle it so I have to give into that dream and accept that PTSD is a part of my life now

Anonymous said...

Meant to say:
I have to give into that dream and accept that PTSD is a part of my life now AND MORE CHILDREN AREN'T

C & V said...

Lori said about her daughter:
Her main problem seems to be an inability to regulate her emotions and to categorize and react appropriately to stimuli.

"Modulate" is another term I have heard/read related to the all-or-nothing behaviors. For example, our ex-preemies seem to have a very big reaction to pain or they under-react to pain. We have talked about pain on the preemie-L and preemie-Child lists many times, and many mothers have agreed that their children are like this. Kids who crave deep pressure cannot tolerate being accidentally bumped as they stand in line. Kids who cannot stand certain noises (or pitches) seem to like loud music . . . which often enough blind-sides a parent who is trying to modulate the environment for her child and protect her child. It seems contradictory, and you cannot figure out how your child will react (lability), and you cannot protect him nor even comfort him/her after the fact.

So, is this sensory-related lability a form of PTSD in ex-preemies, do you think?
Chris and Vic

Jennifer said...

I, an ex 30 weeker, had big swings in emotions as a child/pre-teen in regards to pain. I was very ridiculed in school because of it.

I found that my reaction to pain changed when I became a teenager and it suddenly didn't bother me as much anymore.

I've actually seen this is many things that could be attributed to prematurity - I'm not as affected anymore.

It frequently makes me wonder about how my prematurity affected me and if I have 'outgrown' many of the problems associated with it now?

Thats the hope I hold onto with my preemie.

Katie said...

Wow. I've long expected some sort of PTSD with me, though I've never been diagnosed (but have self-medicated, yes). I can't tell you what a feeling of relief it is to read the first few comments here talking about that sensory overload reaction after discharge. I had that...I still sometimes experience it after flashbacks or dreams of my son's NICU experience and losing him.

terri w/2 said...

Hi Lori;

I've read the account of your daughter's current difficulties - have been there, and maybe can offer some support?

My 2nd twin began to deteriorate (is the only word I can use to describe) right around that 9-10 year old mark as well. She began menstruating at approximately 11, but those pre-pubescent years were already showing signs of cycling similar to PMS.

I have to say, she responded well to an anti-depressant - it seemed to level her mood and helped her get to sleep and stay asleep. She had gone off them for a number of years, but currently has been placed back on them again. She needs to be on antidepressants lifelong, I'm sure, and I think she's realizing this finally as well.

She's been dx with AS and NLD (not saying that your daughter has this) however, both of these disorders seem to carry an anxiety component to them. The antidepressant seemed to help as you know, with the anxiety issues too.

Teresa

Sharee said...

PTSD is common among soldiers who come back from the warzone. A study conducted by researchers at the US Army Soldier Support Institute in Fort Jackson, South Carolina have linked PTSD to miscarriage, but who knew the effects on parents who've survived the NICU!

When my 24-weeker died in the NICU I suffered from depression, but when my 25-weeker died in the NICU less than 9 months later, I suffered from unexplained chills that shook my entire body. Even heat packs under my arms and around my groin, heated blankets and my husband in the hospital bed couldn't quell them. Unexplained fever and infection that the triple dose of antibiotics (as a layman, I can't remember the clinical name) couldn't eradicate.

Anti-depressants and counseling were no match for my depression and immediately after my son died, I was extremely sensitive to lights and sounds. I was jumpy, prone to hyperventilation and I would scream with rage when I heard laughter. I remember wondering what could possibly cause laughter at a time like this?

Only God brought me back from insanity's edge.

Miracles said...

I am new here, and just wanted to say "thank you" for sharing some of the best information and personal experiences I have read in a long time. It gives me a better understanding of a lot of things.

Just when you think your the only one feeling a certain way, you find others who are experiencing similar feelings. Gives me a little comfort. Thanks Ladies!!

Helen Harrison said...

On the PTSD issue, I sometimes feel that our son's birth and the NICU experience, as unspeakably horrible as it was, was not as traumatic as what came afterwards.

I wonder how much of the early NICU pain was buffered for us by having a supportive NICU staff, which, of course, later disappeared.

It's the constant ongoing legacy of prematurity -- the recurring shocks, the shoes dropping over 30 years later -- that really has taken its toll with us.

Anyone else feel that way?

The Preemie Experiment said...

Helen wrote: "On the PTSD issue, I sometimes feel that our son's birth and the NICU experience, as unspeakably horrible as it was, was not as traumatic as what came afterwards....Anyone else feel that way?"

I sure do Helen! The past 8 years has been one big roller coaster-without any of the thrill. Just when we all get used to life with one diagnosis, something else slaps us out of our comfort zone.

Then, when the medical stuff gives us a break, the mental health stuff is always there.

Just when I think we are all going to be ok, Paige goes and hurts her brother because "her thoughts told her to".

Waiting for the shoe to drop keeps me in a constant state of anxiety.

Anonymous said...

My husband and I have had 'stomach issues' ever since our 24 weeker came home from the hospital last summer....coincidence? I don't think so.

Helen Harrison said...

To Anonymous:

I also had stomach issues right after Edward's birth -- heavy duty pain in my mid and upper chest and abdomen, radiating to my back.I wrote it off as stress for a while but it turned out to be gall stones requiring surgery.

It is entirely possible that this whole syndrome had, underlying it, some element of stress.

But is is a good idea to have serious physical symptoms investigated medically.

The Preemie Experiment said...

I agree with Helen regarding seeking medical care to investigate all symptoms.

A few years after having Paige I got fed up with my GI issues. I went to a few docs, had every test imaginable but nothing was detectable. And, while I was already down, just to get kicked one more time, the GI told me that it was clearly "all in my head" since nothing could be found.

I gave up.

Then, while discussing Paige's GI issues (chronic constipation-common in prematurity) with her pediatrician he talked about how probiotics were being used with great success for many issues. I told him about my issues (chronic diarrhea-I would eat and immediately be in the bathroom) and he suggested trying lactobacillius.

It took about 2 weeks to see some improvement. But, after about a month I felt cured.

To be honest, I still believe that stress was and is the main cause of my issues. To this day, when I become extremely anxious my gut yells at me. I immediately start the probiotics.

I get mine from any natural foods store and I suggest only getting ones that are refridgerated.

Anonymous said...

Directly following my delivery/death of our first twin, I received huge amounts of narcotics for several days. After our second twin died in the NICU, I had nothing.

I had PTSD symptoms centered around both deaths, but the second, which I always thought of as "uncushioned", was much, much, much worse in terms of flashbacks, emotional distress, etc. It always felt like that event in and of itsself caused an actual brain injury. I totally get the T#3, though it would be difficult to endorse medicating someone through an entire 100+ day NICU stay with narcotics, if something like inderal works, maybe it would be worth it.

sce

terri w/2 said...

I agree, SCE on medicating the parents during the NICU stay! If Inderal works to control anxiety, lessen PTSD - why not? My God, if just the few of us here have had these types of reactions, imagine how wide-spread but undiagnosed this is among NICU parents. .
Save the T3 though until the parents bring the baby home (kidding of course). .don't think there are any docs who would prescribe T3 for the next 21 years or so. .:)

Aidan's mom said...

Honestly there is so little that is done to help moms and dads recognize what is happening too. Gratefully my husband suggested we start seeing counselors to be able to talk some of this out. I think it helped me from going completely mad to have a 3rd party to spill my guts to. No judging, no hurting my DH's feelings (we went to our own individual counselors), just a safe place to rage, cry, you name it.

I was shocked nobody in the NICU suggested this. When I asked the social worker for a referral to somebody experienced in dealing with stresses of preemie parenting she had NADA for me. I had to go on my own search.

I am pretty sure I was dealing with PTSD but didn't want to say the word and I think my counselor was leaning more toward situational depression. But nonetheless...I almost feel like a referral to a mental health professional should be part of the "Welcome" info you get when your child enters the NICU.

Lori

Chris and Vic said...

Since we have discussed going to a counselor and the use of meds, I am wondering if anybody used FMLOA (Family Medical Leave of Absence) and if you did, was it helpful? How long did you stay out of your job, if you did? How did your employer view your being gone? What was your timetable and criteria for returning to work?
Was your job held open? What about the financial strain of loss-of-income?
Chris and Vic

terri w/2 said...

No for me - once the girls were born, I was not gainfully employed again. .or as my ex-husband says - "didn't work" - (there's a reason he's my ex:). .

Lori said...

First of all, thank you for the kind comments about my daughter. I apologize for not responding sooner...things have been crazy the last few days.

At this point, after much discussion with Kate's therapist, my husband and I are considering making an appointment with a child psychiatrist and exploring medication. I am not a big fan of using psychotropic meds on young children, but neither am I a big fan of watching my daughter suffer. So, no decisions have been made yet, but we are definitely leaning towards exploring this option. Interestingly enough, I found this story on MSN this morning:

http://health.msn.com/centers/adhd/articlepage.aspx?cp-documentid=100159734

To answer Chris & Vic's question, I took off for Kate's entire NICU stay (83 days), and for 4 weeks afterwards. Because I am a partner in my practice, I didn't have to use FMLA or any other "official" means to have the time off. At the end of those almost 4 months, I was ready to go back to work, to be completely honest. I love what I do, and I missed it...and I was emotionally drained from the whole NICU experience and after care. I was fortunate enough to be able to hire an RN to look after Kate while I worked. Otherwise, I would've just sucked it up and stayed home longer.

Thank you again to all of you -

Take care,

Lori

Shannon said...

When Ashton was born I spent 227 days with him in the NICU. Didn't go back to work and I am still not working. He will be two in June.

Sure the financial aspect is hard but it isn't like I really have a choice in the matter.

As for the beginning, I was given twelve weeks of sick leave before my maternity/paternity started which is of course a further 52 weeks.

Aidan's mom said...

I took FMLA, but was shocked to learn my employer started my FMLA clock on the day I went on bedrest. So, I had already spent 4 of my 12 weeks when my son was born. My FMLA expired while he was in the NICU and I wasn't about to go back to work. My counselor filed paperwork for long term disability for me, which gratefully was granted until after Aidan was home a couple of months. I still didn't feel ready to return as it would have meant putting a former 28 weeker into daycare and expose him to RSV during RSV season.

Ultimately my DH and I decided to cash in my company stock options to finance me staying home for at least another year. That year is now almost up and neither one of us wants me to go back to work.

We are actually in the process of selling our house in Seattle (very expensive market) and relocating to Phoenix where it will be possible to live on my DH's salary, still own a home, and have me home with Aidan.

I was somewhat surprised to learn that my employer fully expected me to return to work while my son was still in the NICU. While I see my employer's POV (and they were certainly operating within legal parameters), it would have almost killed me to go to work at that point.

FMLA was a good step in the right direction...but somehow we need something more.

Lori

buddhist mama said...

I felt completely wired after the birth of my twins, despite the fact that I'd just been through 27 hours active labor, 4 days mixed active/early labor and very little sleep for the past 5 days. It felt like I was on speed--not that I would know, but from what I've read.

I didn't sleep most of the night after my afternoon birth and my first visit to the NICU a few hours after the birth. The sight of my bright red twins, splayed like frogs in their warming trays, surrounded by wires, tubes, and bili lights, is seared indelibly into my memory.

Definitely PTSD. I didn't realize it until more than 2 years later as I began to write about the experience of preterm labor, birth, and the summer spent in the NICU. I had these visceral physical reactions to things I'd read that related to my experiences during/after the birth. Not only physical descriptions of epidurals, drugs, and other interventions during the labor, but the endless NICU interventions including intubation, surgeries, and so forth would send me into tears without warning. All symptoms of PTSD.

One of the hardest things for me was talking to new moms who had so little clue of what our family was experiencing. But that is where blogging and therapy have helped the most...

Jennifer said...

I'll never forget the week after my daughter's birth. I got about 24 hours of sleep total for the entire week after i was in the hospital and broke out in the worst hives I've ever had. I even saw a dermatologist who, shook his head, had no idea how to treat it.

I'd cry at the drop of a hat and fall asleep if left in the same position for more than 5 minutes (only to wake up completely wired just a few moments later).

I went back to work just 3 weeks after she was born. My entire day was: up at 6 AM, go to work for 7:30, leave at 4:00 get to hospital for 4:30 feeding, leave at 11 PM, try to sleep (mostly unsucessfully), up at 6 AM...

It was actually going ok until the day the audiologist told us 'your daughter has failed her 3rd ABR test, she may be deaf' - I cried for 30 min. in the step down nursery. The nurses couldn't console me, the audiologist felt bad and eventually they got me a family room and a counselor to talk to. All the couselor could say was 'its ok to feel how you do'. I felt sudden rage and wanted to scream that I hated feeling like this and being in this position - but it was like no one understood.

We had no family to help and the nICU was in lockdown for RSV so no one even visited. I felt like I was on an island waiting for my rescue boat...

I still don't think its come. Just 2 weeks after her NICU discharge she got para-influenza and stopped breathing on the way to the doctors office - turning all shades of grey - she almost died. To get through the NICU experience and finally feel like you can get on with being a normal mom... only to have this happen. I cried, for so long that night. I tossed pillows in our bedroom and screamed until I was hoarse. I felt so betrayed by God, I felt so abandoned by family and friends, I felt so much anger.

And when my daughters EI caseworker, when I voiced my concerns over having another preemie, simply said 'but she's doing so well!', it took all my might to not get stern with her - no one who hasn't been a preemie mom can really understand the emotions and mental anguish you go through.

It's enough to make you not want to try again, ya know?

The Preemie Experiment said...

Jennifer wrote: "It's enough to make you not want to try again, ya know? "

I sure do understand. We weren't going to have anymore kids since the cause of my PROM was unknown. I didn't want to put another child through the whole experience, just so I could have more children.

7 1/2 years after Paige was born, I got pregnant. HUGE surprise!! (I wrote about this on a previous posts entitled "and then there were 2". He was born at 35.4 weeks and will be 1 year old next month.

I had my tubes tied during my c-section.

terri w/2 said...

Jennifer - yes, I certainly do understand as well. Twins run heavily in the maternal side of my family - lots and lots of them. One of my aunts had 1 set and died of hypertension while carrying her 2nd. I could not take a chance of doing this again and having that happen (the NICU) to future children.

I feel that neonatal robbed me of anything resembling normal parenthood. Angry - yes, I am so very angry that my children have to suffer forever as a result of decisions beyond my control.

The anger flares at the oddest times still - 21 years later. I read a post recently about a student nurse who "enjoyed" her NICU rotation - enjoyed? ENJOYED? That for me is like saying I ENJOYED being a guard at Auschwitz.

I've forever been changed by this experience.

23wktwins'mommy said...

I think this would be an interesting post...deciding to have more children after having a preemie(s).
I am only 24 and we definitely planned on having more children....I still do, but I am worried. In my case, we have no idea why I went into premature labor. My high-risk, highly recommended OB insisted it was due to the twin pregnancy...I'm not convinced. They never tested the amniotic fluid at delivery, but I did get very ill 2 days after they were born. The not knowing makes the decision to have more even harder. If I knew it was something with my cervix or an issue I had, it might change things. But just not knowing and hearing about people who have early labor and premature birth with twins and then go on to have normal full term pregnancies makes me not want to give up on the idea of having more.
I should really only have one or two more pregnancies because of my classical c-section, but that's okay, 4 children would definitely be enough for us!
Anyway, I wonder how many have had a preemie and then went on to have a healthy full term baby...I know TPE has...who else?

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