The Daily News

LFCA Latest Issue: Friday, September 25, 2009.

Latest Post on BlogHer: Parenting after Infertility.

My Status: Fed Josh's almonds to the squirrels. They needed them very badly.

Tuesday, September 01, 2009

A Post in Which My Heart and Head Agree to Disagree

Last week or so, the New York Times had an article about PTSD for parents after a NICU experience that Josh forwarded to me, perhaps because I am Tums abuser whenever we need to go remotely near a hospital (though lest you think I am the only neurotic one, Josh commented recently after a doctor's appointment that he couldn't breathe. I think lack of lung power trumps stomachache). I think the most interesting part of the article compares the NICU to being in a war zone:

“The NICU was very much like a war zone, with the alarms, the noises, and death and sickness,” Ms. Roscoe said. “You don’t know who’s going to die and who will go home healthy.”

Experts say parents of NICU infants experience multiple traumas, beginning with the early delivery, which is often unexpected.

The article touches on other interesting points--that seeing sick children other than your own can also play into the trauma and that men experience PTSD at a higher rate than women following a NICU experience. How the NICU experience affects you later is not just the duration of time that you're in the NICU or what your child goes through, it's a whole host of other elements including what you observed, how you dealt with the emotions in the moment, and your coping mechanisms overall.

In other words, it was actually a good thing that I locked myself in the bathroom that night and cried like an animal according to research.

The point of the article is that while NICUs are focusing on the infants, that parents should be considered as well. I actually have to commend our NICU--the nurses and doctors and social workers did an amazing job of addressing our feelings even when they couldn't give us answers and helped us aid them in caring for the twins while they were there.

I would never categorize myself as having PTSD, though I have to admit that I have a lot of anxiety whenever we have any medical issues involving the twins. Sometimes, the heart just can't keep pace with the head. But that may just be my genetic make-up and not a result of their early birth. You can only blame so much on my uterus.

*******
What my head knows: that prematurity was not my fault any more so than infertility was my fault. I do not have control over how my body creates hormones, clots blood, or opens my cervix. That if it wasn't infertility and prematurity, that it would be something else. That sometimes full term babies have health problems too--sometimes the very same ones that premature infants are susceptible to get. That anxiety is anxiety and we can't talk ourselves out of it, but instead, need to slosh through it.

What my heart knows: that I feel a tremendous sense of guilt whenever the topic of prematurity arises. That I have a lot of fears--some well-founded and others the product of my vast and unending chasm of what ifs. That worrying does me no good, yet I also know I can't stop doing it.

*******
The New York Times is providing me with all sorts of food for thought. Today they had four responses on the idea of memoir (and by extension, blog writing) and children's privacy. I think it's pretty obvious where I fall. My story pretty much ends about two millimeters after their story begins. I try not to write about them even though they are the most fascinating people I know beyond Josh. I'm aware that I write about myself enough to provide their schoolmates with endless fodder for taunts (your mum has crusty ovaries, your mum has crusty ovaries!), but I stop at writing about them. I don't need to embarrass the thirteen-year-old Wolvog and ChickieNob with Googleable stories from their childhood (beyond the time that the ChickieNob told the woman in the food store that I had a special bandaid in my underpants--that story was just too good to keep silent. So bullies of the future, feel free to tease the kids about pantiliners).

And this is the place--their health--where our stories are so tightly entwined that it makes it difficult. I don't want to betray their privacy, and yet, I have an overwhelming need to discard my own in exchange for the support one receives when they state they need it. But I can't talk about myself without talking about them when it comes to how I process something in regards to their health, therefore, I remain essentially silent about myself and just disappear into the ether for periods of time. And half the time, no one but myself knows I've been away because I am naturally flakey with email.

I also know how much comfort I have gained from reading other people's prematurity stories--how it makes me feel less alone, so there is also an impulse to share in case our story helps another person feel less alone.

Is it possible that the New York Times has been reading my mind?

*******
I had to look up the origin of the saying "ignorance is bliss" this week. It comes from a poem by Thomas Gray about what lies in wait for these happily oblivious boys at Eton (okay, it's a little more eloquent than that, but you get the point). The verse that struck me the hardest contained the searched-for sentiment:

To each his sufferings: all are men,
Condemn'd alike to groan—
The tender for another's pain,
Th' unfeeling for his own.
Yet, ah! why should they know their fate,
Since sorrow never comes too late,
And happiness too swiftly flies?
Thought would destroy their Paradise.
No more;—where ignorance is bliss,
'Tis folly to be wise.

Isn't it so true? We all have shit to deal with; we all think we are being so compassionate to others and lament how no one understands our pain. And at the same time, would we ever want to know the future knowing full well that happiness is fleeting so we should enjoy it when we have it since "sorrow never comes too late."

In the prematurity article, the second point that moves people towards PTSD is the idea that prematurity often comes with no warning. And unlike the ripping-the-bandaid-off-quickly mentality, it's the surprise of the premature birth that brings about such fear in the future. What else don't I know? What else am I about to be told that I have no clue is on the table? That's all I can say about prematurity--that once you've had one surprise, followed by another and another and another, you become very wary of all surprises--both good ones and bad. Which I think is true of most off-the-beaten path situations with conception since we are taught from such an early age that if we so much as think about a boy, we will become easily pregnant, carry a baby for 9 months, give birth to a little pink or blue bundle and live happily ever after.

And when that doesn't happen, you start wondering in all aspects of life, what the hell else do I not know?

And perhaps this is more indicative of a child who overall is healthy. That when the issues pop up, they are so wholly unexpected because you're lulled into this idea that prematurity is an event rather than a life course. That once you move through babyhood, prematurity is over. Therefore, it sucks to read studies following the results of prematurity well into the later years--both for the child and for the adult.

Because we are so over prematurity.

*******
And so, without going into details that I don't feel are mine to tell, I would like your general good thoughts on Thursday. To feel like you're with me just as I mentally took you with me for my sonohystogram last year.

While Show & Tell will go up Wednesday night, I won't be around a lot for the rest of this week. There will be directions in that top post on where to go to pick up Thursday's clue for Blogger Bingo (where the clue is usually listed, there will be a link to the person posting it for me).

If you need directions with the good thoughts, you can just apply them to wishing for peace-of-heart for me. I think that walks the line between their privacy and my need for human contact. Which makes me sound like one of Maslow's monkeys wanting cloth mommy over the wire one. But, as the New York Times points out, it's a fine line to walk.

65 comments:

luna said...

sending you a huge virtual hug and wishing you peace of heart and mind. thinking of you all.

Kate said...

I work at a children's hospital, and we were giving a tour to some local big wigs, all dressed up and polished. We were about to give a tour of the NICU and one of the men, a handsome man six feet tall and broad shouldered just went pale and shook his head, "I can't go in there". He had twins who had been in the NICU for four weeks. His children are 13 now, but his fear remained.

Mel, I understand your need for privacy about your children and respect that. Please know I'm thinking of you and hope that you have people in your life that you can tell what is weighing on your heart. It is so important not to hold those feelings inside of yourself. When and IF you are ready to ever tell us, we will be here with support and love for you. *hugs and prayers your way*

Stacie said...

NICU PTSD sufferer here. I am working through it, but...well, it is a long process, especially because issues remain. Sigh.

Sending peace of heart and much love to you as always, Mel. Hugs.

Heather said...

Wishing for you all peace of heart and mind.

Jen said...

{{{hugs}}} Sending you the sincerest wish for peace. I hope that all ends well and that any fears are unfounded. Thinking of you and sending you comfort...

Jennifer said...

My daughter is one of those full-term babies who ended up in the NICU immediately after birth due to seizures that wouldn't stop. She stayed for two weeks and they were hands down the scariest days of my life. I understand with all my heart what you are saying, and I have a healthy dose of NICU PTSD and fear of surprises. I dread my daughter's follow-up appointments and always will, because I expect the other shoe to drop at any time. I will be sending you lots of positive thoughts that there is no shoe dropping for you all on Thursday. Sometimes no news really IS the best news!

Not on Fire said...

I will be sending good thoughts your way. I am hoping for the best.

Trinity said...

Sending heartfelt vibes of peace and comfort your way, Mel.

I really appreciate the NY Times PTSD/NICU article link... I am a hospital social worker, and one of the areas I cover is our NICU. It's true, the focus of care is on the baby, and often the needs of the parents are placed on the back burner. I do try to give as much attention and support as I can, but I know it's probably not enough, sadly. I get frustrated when some of my nursing counterparts pass judgement on parents, especially surrounding the frequency of visits. (Not saying our NICU nurses are lacking--we have some really genuine and sharp ones!) I feel like this article and the studies cited in it are super validating. Thanks for sharing! This has given me some good resources and food for thought....

Meghan said...

Sending you thoughts, luck, and love for Thursday.

And I may be way off base here because I am assuming and you know what they say about assuming (and if I am off base my sincerest, sincerest apologies) but based on some things I've picked up in your other posts, plese let me know if I can be resouce to you. You know where I work and what I do. I've been doing it for 11 yrs now and have tons of resources on our community. If I can in any way help to ease your pain, please do not hesitiate

much love, meghan

loribeth said...

Mel, sending you some (((hugs))).

jenn said...

Sending you some positive & peaceful thoughts for not just thursday, but everyday. I don't comment often, but I read almost everyday (guilty lurker...)
My pumpkin only spent about 12 hours in the NICU following her birth & it was not the easiest, though her later hospital stay at 5 days was tougher. My heart & thoughts are with you this week.

areyoukiddingme said...

My daughter was never in the NICU, but I have every parent's fear that something awful will happen to her. I'm sure that's heightened when you've been through prematurity. So my hearfelt wishes for your peace of mind are headed in your direction and I'll say a prayer for you and your family.

HereWeGoAJen said...

We are sending much love and many good thoughts from all of our family to all of your family.

m said...

1. first and foremost, sending you wishes for peace, and peace of mind. And if you need some tums, I just bought a TON so I could float you some of those too.

2. haven't delved into the Times article yet but its sitting here on my stack of stuff we swipe from M's parents' house every Sunday. The PTSD discussion is SO timely. I was listening to an NPR story the other night about a soldier with PTSD (the story was about his service dog) and all I could think of was, holy SHIT, he is describing how I FEEL! Wait. Does that mean I have PTSD?

And I must have been talking out loud because M. said, of course you do, dumbass. Why wouldn't we? Did something incredibly unexpected and traumatic occur? Yes. Do things that never caused us stress before now do? Is that fucked up? Disordered, as it were? Sadly, yes.

The NICU causing PTSD makes a helluva lot of sense to me. And I also have to think that those of us suffering and trying to live through loss, and even infertility itself carry a bit of PTSD with us every day.

Mel, I too am in a place where things feel like the story, the telling isn't something that is owned by me and me only and I am struggling with wanting to blab to the world and keeping things very tight out of privacy and respect for others. For now, I am very, very comforted just by reading and commenting - still participating, but not writing in first person for a little bit. Hoping that you are finding some ease in stories of others.

once said...

Head and heart at it again, huh? It's knock-down drag-out in my house. So it's a good sign you've been able to corral your two lovebirds and get them to work out some sort of peace.

Respecting your privacy but also busting through the door to give you a large hug and good wishes and tell you my heart and head are with you throughout this week and onward. They might not agree with each other, but one thing they do agree on is holding out love & hope for people who've cared for them in the past (as you have).

-C

Kristin said...

Mel, my thoughts and prayers are with all of you...you, Josh, ChickieNob, and Wolvog. I hope you are able to maintain some peace of mind and that whatever is being checked or taken care of has no long term negative effects.

Cassandra said...

I had a very reassuring meeting with a neonatologist today. Soon I will tour the NICU. I have to think that such preparation will ultimately be good for me -- removing much of the element of surprise that seems to be so damaging to many parents. 'Luckily' I have advance warning that my babies will probably end up in the NICU. The downside is that if I miraculously make it to term, my anxiety and preparation will have freaked me out for no reason, but I think I'm better off being over-prepared than under-prepared.

I will be thinking of you so much on Thursday, and in the troubling hours that precede it.

Mrs. Gamgee said...

Sending you hugs, good thoughts and prayers...

projectkjetil said...

Thinking peaceful thoughts for your heart and mind this week.

Lesley said...

I was really glad to read the NYT article last week. While I may not have met the strict diagnostic criteria for PTSD, I agree wholeheartedly.

My son was the only non-preemie in the 40+ bed NICU. The social worker kept handing me BROCHURES to tell me how to interact with my premature baby and all of the NICU logistics. Nurses were fab and the NICU docs were great, but there was ZERO acknowledgment of mental health issues of the parents.

They were very concerned about my physical health since I discharged from my hospital at 12 hours postpartum (that freaked them out), but no questions or concerns about our emotional state.

Can you tell I'm still pissed 2 1/2 years later?

Now I need to read the NYT article about privacy...

Sunny said...

Thursday... thoughts and prayers for Mel's peace-of-hear... got it.

I have never been in the NICU and I have tremendous fear of it. Now compounded by our recent news. I can certainly understand why that would stay with you, forever.

tireegal68 said...

And I thought I was the only person who thinks that they give out all this love and hope and no-one cares about ME! You are not alone; maybe you could start a secret blog in which you could share all with the ' sphere ? So many thanks to you for your mothering of this community and I hope in turn that you feel cared for by us. Sending hopeful, healthy thoughts to you and your little ones and your hubs.:)

Hillary said...

Thinking of you, Mel. ((hugs))

Lavender Luz said...

Abiding. Loving. We are all supporting you, like that scene in The Red Tent where the one sister sat on a throne of her other sisters as they attended to her and her child.

Busted Tube said...

I'll be thinking of you on Thursday, I hope all goes well for you and yours. It'll be a good distraction for me to be thinking of you because I'll be waiting on beta results that day (I hope that doesn't sound selfish). Lots of good thoughts headed your way!

Beautiful Mess said...

Sending you lots of love, strength and peace. As much as you need.
*HUGS*

Rebecca said...

I'll be with you on Thursday, sending you peace and strength. Put us all in your pocket as your touchstone to get you through.

Trish said...

Good thoughts of peace coming your way. Prematurity blows.

Caro said...

Sending good thoughts

Jenn said...

Sending you and the family a tons of hugs, peace and serenity!

SassyIfLady said...

I read that article in the paper when it first came out and it really helped me put two and two together. PTSD can affect anyone who has been through a tramatic event in life - not just war heroes. What's most important, especially as someone begins to feel their way out, is family and friends.

Know that you have a lot of people thinking of you. Take care of yourself! Hugs!

IdleMindOfBeth said...

Holding you all in my heart as you face whatever it is Thursday has in store for you. Wishing you peace and strength.

And a virtual martini, if you think it will help (wink).

Ann said...

Sending good thoughts your way, and hoping everything works out just fine. You do so much for others, you should know how many people will be pulling for you.

JuliaS said...

You always have my best of thoughts. :0)

I still get cold and shaky thinking or talking about it - 12 & 9 years later. My NICU experience was short compared to some, even with two separate preemie stays. Still, I had no idea what I was in for. Even the second time around - I had a better grasp of what was going on, but it still felt pretty intense.

I still cry when I see the bottom of my daughter's feet and the scars from the countless heel sticks she had to have. The scars from the iv's, pneumothorax and her arterial lines I don't see as much anymore. But sometimes when she was very small - I'd be dressing her and catch that small dot where they needled her chest and I'd be moved to tears. She was so tough and is one of my healthiest kids now - but her strength seemed to become my enduring weakness.

Shelli said...

Thinking of you always.

Dora said...

Sending many good thoughts your way. Just think of all of us as Team Lollipop!

becomingwhole said...

Wishing my virtual hug could be real and I could do more than write words.

Thursday is Mel day.

erica said...

Sending you good thoughts, and hoping all goes well.

Pie said...

Wishing you strength, tranquility and peace in facing your next few days.

Caitlin said...

((((HUGS)))) and peace to you in your next few days away.

A.M.S. said...

Holding you in my heart this week.


Can't talk about my response to that article. Hits a little too close to the heart, if you know what I mean.

exileinkidville said...

peace, love, and light to you and your family, Mel. xo

annacyclopedia said...

I love Lori's image - we are all encircling you with our love and care and wishes for your peace of heart. May you feel us all lifting you up, today and Thursday and every day.

karlindaadoption said...

Whilst you may suffer with memories from their NICU days, you can take comfort from the fact that your kids won't. I think it was the BBC series 'Child of Our Time' that took toddlers to visit a hospital & took them into a room with the usual NICU equipment. The children who hadn't been in NICU themselves were wary & stuck close to their parents, but those that had been in NICU were perfectly comfortable, happy to explore the equipment, push buttons, & ask questions.

Bluebird said...

Good thoughts for peace of mind. . .

Furrow said...

I'm wishing you and yours all the best, including peace of heart.

birdsandsquirrels said...

I completely understand and respect the need for privacy for the twins. I love reading the stories about them that you do post once in a while. They seem like they are absolutely wonderful, funny, and kind little people. I am sending you all good thoughts and hugs and wishes for health and peace of mind.

Kami said...

May everything turn out better than imagined.

Paz said...

I am with you and Josh. Sending you much peace for tomorrow.

My son was in the NICU for just 2 days. It was only because I Had a fever during labor. The NICU nurse, the doctor all told me he was fine. They predicted that as soon as the normal bloodwork came back he would be out. And he was. Yet. It was traumatizing! Waking up after an unplanned csection, confused, alone, and hearing babies crying and not knowing where mine was. Was that MY baby crying? I wouldn't even know. It took awhile for the details to come back to me and it then took about an hour – a lifetime – to go see him in the NICU. So, beyond the health issues — the NICU experience traumatizes because we NEED to have our babes in our arms. Those two days were devoid of fear for my baby's health but they were far from stressful. They were filled with fear. I was not yet bonded with him but all I felt was fear for him to be so far away from me, a palpable fear. I know I was lucky. But just hearing the word NICU and I feel my heart rate go uppp.

back to tomorrow, you're in my thoughts!

Lisa said...

Sending you good thoughts and a peaceful heart. Will think of you and yours tomorrow.

Martha said...

((Hugs)) Mel, I have the privilege to work with families of premature children and have friends w/teen premature children. I walk along side you and send you peace.

caitsmom said...

I couldn't finish the article. My daughter lived her life in the NICU and died in the CICU. Too difficult. But, your discussion of it was enough to confirm the likely hood that PTSD was a factor in my healing.

Ah, well. Sending some hugs to you for Thursday. Peace.

luna said...

still thinking of you, still sending big strong hugs, and a scoop of everyone's favorite ice cream too. xo.

Once A Mother said...

Mel,
sending you peace of mind and calming reassuring thoughts as you navigate this week. I'm throwing my prayers up to God using your pseudonym to watch over Ms. Lollipop Goldstein figuring that since its not a name he comes across every day... I am sure he will take notice and listen. ((Hugs))

I also wanted to say a HUGE thank you for posting this post, I had not come across the article. I was diagnosed with PTSD shortly after my daughter's NICU stay and passing, and have been working with someone for the last 9 months who specializes in this. Thank you for showing me that I am not the only one to have this reaction to such an environment.

Thinking of you xoxo

Delenn said...

Thinking of you and yours, Mel.

battynurse said...

The concept that having an infant in the NICU can lead to PTSD doesn't surprise me at all. I remember watching people fall apart or roar like a mama bear when it came to their babies and want so much and yet be so afraid. So many different reactions.
Whatever is happening in your life this week I hope it passes with minimal surprise and that things end calmly and with only good outcomes. Sending you many wishes of peace and many hugs.

meandbaby said...

Thinking good thoughts for you.

annacyclopedia said...

I'm saying lovingkindness for you today, Mel, and for Josh and the twins, too.

May you be happy and peaceful.
May you be healthy and well.
May you be safe from inner and outer danger.
May you live with ease in this world.

Working Girl said...

Thinking of you and your family today. Wishing you peace of heart and mind.
Megan

Coffeegrl said...

I'll be holding you in my thoughts and close to my virtual heart today.

Deathstar said...

Nam myo ho renge kyo - like the roar of a lion protecting its cubs.

itsazooaroundhere said...

I'm sorry I am late in posting this, but I am sending a million good wishes your way, and thinking of you and your family tonight and the rest of this week. ((((hugs)))))

Billy said...

Wishing for peace of heart for you.
~hugs~

Cara said...

Mel - my heart is with you right now. I feel similarly with Bear and her miracle arrival followed by issue after issue.

My emotions can only be told so far before hers become involved.

Hope you find your way through this.

xoxo

tbonegrl said...

Sending my belated thoughts, and thanks for pointing me towards the article. I have PTSD for my delivery and the NICU experience of my boys, and probably my DH does too.

A wonderful blog if you've never been is thepreemieexperiment.blogspot.com