Saturday, September 28, 2013

I Am a Selfish, Money-Sucking NICU Mom. A Reply to the commenters of Radiolab's 23 weeks, 6 days.

Listen to this podcast:

Wow. Wow.

  I was in the car when I first caught this. I listen to Radiolab fairly often, but because I was out and about while this was airing, I had to go back and listen to what I missed. A very moving story. And then I went and read the comments to this podcast, and well...I guess I shouldn't be surprised at the vitriol. The politicization of prematurity.  The insertion of the abortion debate (WTF??).  The viewpoint of selfishness on the part of the parents.

You know what I say to that? You. Have. No. Fucking. Clue.

Yes, premature birth and subsequent NICU care is expensive. The ongoing care beyond the NICU can also be quite expensive, especially for the infants who have disability due to their prematurity. But I venture to guess it probably is no more expensive than an adult with chronic illness like diabetes- or even worse- a progressive neurological disease that will ultimately kill you like ALS or Parkinson's. I've never come across an argument that we should not care for those adults because of the cost. It would seem inhumane, frankly, to say that those people should just be left "out of the system" to fend for themselves and their disability.

Many premature infants are not expected to be premature. About 50% of premature births are of unknown reasons. Vera's birth falls into that category. My water broke, I went into labor, she was born hours later at 31 weeks. There was nothing I did because I was selfish that led to this. There was nothing I could do to prevent it, at least at this point in medical history.

As far as criticizing the parents in the podcast of what they did for their baby and how they read the baby's responses...well, go look above. 

When you have an infant in the NICU, you  are helpless.  All of the things you would normally be doing if you were a new parent of a full term infant is not happening for you.  And so you adapt by doing what you can- which is cuddling (kangaroo care), pumping your milk, and providing whatever comfort you can.  Because of the premature neurological system these babies have, continuous holding, talking, and doing what you would normally do for a full term infant are not "allowed" because it can actually cause them stress.

So- what I did frequently when I was allowed to hold or touch Vera was either tuck her into my cleavage but unable to pat or stroke or rub her as your instinct as a comforting mom would typically do, or I would stand leaning against her heat and humidity controlled incubator with my hands through the port holes while placing one hand firmly on her head and the other cupping her butt.  Applying gentle pressure.  Because that was all her body could handle.  I also spent more time "cuddling" up with a hospital grade breast pump.  Again, because many times that was all I could do to be a useful mom.  Reading or singing quietly was often done in the NICU by parents.  I never did, as I just talked to her about day to day stuff.

And even though we couldn't do all the things we wished for in a normal newborn, Vera did respond to us as her parents.  When Mark did Kangaroo care with her, her heart rate slowed.  When she kangaroo'ed with me, she never had dips in her oxygen levels.  When we talked and she was awake, she would follow the voice and look up at us.  She didn't do this with the nurses or even other family.

I would have done anything I could have to prevented this so she would not have suffered (and yes, I do think she suffered as she did endure painful procedures and care to keep her alive). As far as selfish- I think the notion of wanting to be a parent is the furthest from being selfish.  Being a parent, no matter when the child is born or how conceived is not a selfish job.  There is NOTHING selfish in what I do everyday as a mom.  If calling wanting to put a person in this world that will be raised surround by love and kindness in their family, and allowing them to become an independent, intelligent, creative, kind human being is selfish...well then, sure.  I was selfish.

Before Vera's birth, I knew the NICU was not an easy place.  As a nurse, I had cared for many NICU parents of varying gestational ages.  I knew that they were on a rough road.  I knew that the care their infant(s) were receiving was expensive.  I knew that they may be facing a long, tough path of disability for as long as they all lived.  I also realized that there is a wide gray line between viability and non-viability, which medical science keeps pushing.  In hindsight, I can say that my thoughts on it were just matter of fact, not any true empathy because I just didn't truly get it.  Becoming a mom has really taught me that you just don't know what it is like to walk in anyone else's shoes unless you've experienced it yourself firsthand.

May all those who feel preemies, especially those near that gray line, are left to suffer because their parents are selfish and a financial drain on the system NEVER have to experience a NICU first hand.  I don't think they would be able to walk in with their generalizations worn proudly on their sleeves if they were staring down at their fragile newborn.

So go ahead and call me a selfish, money-sucking NICU mom.  It was worth it.  And should some of my health care expenses go up because there are preemies out there that need medical care, then so be it.  Even disabled, those children have something to contribute.

Thursday, September 19, 2013

NICU Nurses: Don't Say This

When Vera was born, many of her nurses were "old timers".  They had been in neonatal care since it's inception.  They watched viability age decrease over the years.  They worked shift by shift where technology kept growing and helping premature and very sick infants survive at greater rates.  That must be an awesome thing to reflect upon in a career.

But, please, NICU nurses, please don't tell a mom of a new preemie baby that when you started your career that her baby would not have survived when you started in the field.  Don't say, "We would just provide comfort measures for a baby of this gestation age."  Don't reflect that it was awful watching a 31 weeker back in the day struggle with breathing in his or her few hours of life, or if they managed to survive the respiratory distress syndrome how disabled they'd be.

None of that is helpful to the mom who is looking at her 31 week newborn, hooked up to CPAP to survive, swollen, jaundiced, and getting poked with multiple needles and heel sticks.  She doesn't know how her own infant will do, what long standing effects they will be faced with, or whether her infant will come out healthy and unscathed from such a traumatic event.  To know that her infant would have been left to die in another time of your career is fucking awful.

Let me repeat: It's fucking awful.

Because when it was said to me, I stewed over this for days, with the worst kind of scenario going on in my head, visualizing my little baby struggle for breath and dying.  Because what I was seeing in the present was an infant struggling to breathe despite having all the high tech help possible.  How could it possibly be any worse?  Those words just make it seem that whatever I might be feeling now, it is not worthy of my present day fear.  Because, you know, it could be worse.  And really, I couldn't handle worse.

And, if you want to know how much these sorts of things could effect the mom of a premature infant?  Vera is now a healthy, thriving 2 year old.  I'm still bothered by those words.

Friday, September 13, 2013

Blogtember: Self Portrait

Today's Blogtember topic: Post a self portrait.

Here you go!

It's been three months since I shaved my head.  My hair now show's its natural curl.

Thursday, September 12, 2013

Blogtember: How Social Media and Blogging Has Changed My Life

It has sucked more time away from my days.  Ha ha.  Seriously.  I say this tongue in cheek, but it really has.

For one, here I am blogging instead of working.  At night, instead of reading every night, I am scrolling through Pinterest, Facebook, and Twitter.  I'm reading blogs that I follow, and finding new ones.

So I can't say it's changed for the better.

But what it has changed in a good way is being able to connect with people I would never had the opportunity to otherwise.  There are so many nurses, midwives, moms, birth advocates, craft people, sewists, the list goes on and on....that I can learn from and communicate with!

It's also framed how my business is marketed.  The majority of the marketing I do is via social media, which ultimately leads to word of mouth (or word of screens, clicks, and pins!).  Traditional advertising just doesn't work for my type of clientele, as 100% of them are connected online.  Social media and blogging has certainly made for competitive marketing for me, as I think every online business (or any business, really) wants that one viral pin on pinterest, or video on You Tube to help boost their profits.  So I certainly have changed in regards to that, which brings me to my very first sentence above.

It sucks my time away from me!

Wednesday, September 11, 2013

Pin Test: Peasant Bread

I love a good hearty, home baked bread.  I have never made a homemade bread, thinking that it would be super difficult.  But then I realized that this notion was inherited from my mother, who is a self proclaims "I'm no Betty Crocker" and finds making cookies from premade dough difficult and time consuming, and so she was likely pretty off on this one, too.

Scouring my cook books and Pinterest, I came across a simple recipe for a Peasant Bread.  I had all of the ingredients, and the afternoon to allow for good dough rise so I gave it a go.

So, the only down side to any of this was the actual web post this came from: it is way too long!  Too much commentary to skim through to get to the actual steps of putting this together.  Now, I realize that people who live in glass houses shouldn't throw stones, but really, I would have liked the commentary below all of the ingredients and directions.  I do read everything, but I would have liked to have what I needed to know immediately up front, then all the nice to know things after.

What I did differently (because I hate being told there is only one way to do things):
- Original recipe calls for unbleached flour.  The first time I did this I only had bleached on hand.  As it turned out, I found that version tastier than the unbleached.
- The original recipe makes a VERY LARGE loaf, or two loaves, so if you don't want to have a lot of bread or any leftovers, half the recipe.
- I greased my pyrex bowl with olive oil and cracked black pepper for a little extra flavor.  Turns out awesome, except the top part of the bread stuck to the bowl and needed to be scrapped out. If you are going for presentation, I suggest you stick with using butter as the original recipe states.

My thoughts on this Pin:
My husband ate his toasted with butter, me dipped in herb flavored olive oil, and my daughter ripped straight from the loaf.  It really is the easiest bread to make with out kneading or special mixers, etc.  It's a keeper!

Tuesday, September 10, 2013

Blogtember: Moment When Life Took A Turn

I purposely skipped yesterday, as it involved taking a personality quiz.  I'm not into taking quizzes about myself, as I find them generic and rigid, when people are fluid and ever-changing.

So today's post: Describe a distinct moment when your life took a turn.

Without a doubt, it was Vera's birth.  Becoming a mother.  It really does change everything, and in more ways than you could ever fathom.  I am sure that the fact that your life changes once you become a mother is not news; everyone hears this at least several times when you are pregnant.  However, despite hearing this, I didn't really know what it meant until she came into my world.

And I'm not talking about the day to day changes with mothering.  Waking early, having to plan regular meals, having to make appointments and plans around naps.  Sure, those change things from pre-motherhood life.  What I am talking about is what changes within your head that changes you as a person.

For me, it was caring for myself in a way that I never had before.  I actually began thinking, "I can not die for many years to come- Vera needs me like no other".  This might sound crazy, but I really felt that I was important in someone's life enough that it might mess them up irrevocably so I better make sure I stay alive and healthy for another 30+ years.  At least!  I'd never really cared much before.

It also changed what I felt was important in my life.  Having a high level of education? A respected career?  Making good money?  Who cares.... those things drained me and hacked down my self esteem and I realized that continuing down the path I was on before would not allow me to be the best mother I could be.  And I don't miss any part of my previous career.  (Well, the money was good, and I'd plan to make that kind of money again, but it's not important enough now to keep on this new path).  Instead, I decided to go for a dream of using my creativity and craftiness as well as be my own boss.  And I love it!

And lastly, what others might think of me?  The little bit I might have cared about before has completely gone.  And even more importantly, I have come to accept that I am who I am, and if that means being a fat lady with a super short hair cut because damn it, it is so freeing!  So be it!  For proof, you can see this naked pic of me here.  Ya, really.

Friday, September 6, 2013

Blogtember Resumes; Fear

Today's topic: A story about a time you were very afraid.

Hmmmm..... is one, where the time I was actually afraid in the pure sense of "afraid" only lasted about five minutes, but none the less, I was afraid.

Shortly after my daughter was born, my husband lost his shit.  Like totally snapped, began doing things that most sane people would be like, "What in the freaking world is going on in his head?".  This went on for well over a year.

There is a lot of crap that contributed to his behavior, but ultimately he was making some very bad choices.  He held a lot of anger towards the circumstances around Vera's birth.  He never planned on having children, although had always told me that he would (as I wanted to have them).  And we had struggled in our marriage at one point on whether we would move forward together because I was pushing for children NOW and he was finding every reason not to.

Ultimately, we moved forward in having children.  Enter Vera.  Her fragile status at birth, the unpredictable course that was ahead of us as parents, and his deep rooted fears of being a father had culminated into chaos for him.  So he began drinking, doing drugs (narcotics, benzodiapines, and bath salts), and generally behaving like a slovenly fool.  Mind you, none of this was out in the open, and what was presented was just this absolute asshole who never went to bed, never interacted with his family, and at times disappeared overnight.  Or passed out in his car and pissed his pants.  Or something along these lines.  Despite this, he did manage to go to work every day.

When Vera was about 4 months old, it became obvious exactly what he was up to.  At the same time I was struggling with severe postpartum depression and anxiety (without knowing it, but my mom certainly knew) and was barely able to take care of Vera and myself on a day to day basis.  My mom could see things were not right, and like the wonderful mom she is (despite her outer hard shell), swooped in and helped me.

Over the course of a few weeks I did end up seeking help with my own postpartum depression and anxiety, and started to be able to see things more clearly.  I knew that things would not  be able to move forward with my husband if he didn't get his act together.  But in the meantime I was doing the best I could for my daughter and I.

One of those things was making sure we got plenty of good night time sleep.  We both have white noise machines, and slept with the doors closed.  This was because my husband would come home (or inside from the garage) at god-awful hours of the night and decide to play with the dog.  It was noisy.

My tricks of keeping out the noise worked really well.  So well, in fact, that one night early that winter I hadn't heard my phone ringing for the previous 30 minutes.  And I didn't hear the banging on my front door for the first 10 minutes.  For the next 5 minutes of being awake and listening to the banging on the front door (oh, did I mention that this was at 2 AM?) and getting myself in quite a tizzy of anger at my husband because I couldn't believe that he would have the gall to bang on our front door at this time.  He knew, after my many threats of "If you dare wake up the baby" speeches, that if he forgot his house key he was shit out of luck and would have to sleep in the car, that he'd be messing with a very angry woman.  And previously, he knew I wasn't kidding and HAD slept in the car on those nights he forgot his keys.

So as I laid in bed listening to the banging getting louder and louder, I think steam started coming out of my ears.  And then I decided I better go down and let him in before Vera did wake.

I got to the top of the stairs and angrily stomped down a few stairs before I noticed out the porthole window in the stairwell that there was a police car in front of my house.  My heart stopped.  I couldn't take a breath.

This is it, I thought.  He's dead.  He either killed himself willingly or accidentally, but he's dead.  With his current behavior, it was the only logical explanation of why the police were at my house in the middle of the night.  I was so afraid of opening that door. 

And as this fear came fully awake within my head, I realized my phone was ringing nonstop as well.  I made it to the bottom of the stairs and cracked open the front door.  I was only in a tank top and my underwear, so I told the cop that I needed my robe.  I'd be right back.  But I let him in.

When I wobbled back down stairs, because at this point I was shaking quite a bit, wondering how was I going to hear how my husband had died, and should I call my mother now or wait until I knew she'd be awake?

I sat down before the cop started talking.  I was taking deep, gulping breaths, bracing myself for the news.

"It's about your husband," the cop said.  He was young.  Maybe 10 years younger than me.  I remember thinking he seemed composed for such a young cop about to deliver terrible news.

I looked up at him, and he continued. "He's been arrested for drinking and driving."

Suddenly all that fear, all that terrible shaking, breath gulping, and terror....gone.

"Oh, why are you here to tell me?"  Because really, I was so pissed now, and did anyone really think I was going to bail him out at this time, with a 5 month old baby in tow?  At two in the morning?

Hell, no!

Turns out that he was arrested with the dog.  They wanted me to get the dog.  I said no.  The dog can go to doggy jail for being his accomplice for all I cared, and I would pick her up when I was good in ready in the morning.  As far as my husband, he could bail himself out and walk home.  And yes, I said this to the cop.

I also told him to make sure they searched the car very well.  I was told that they did, but didn't find anything illegal.

Obviously, my anger well overtook any fear I had, but this was very much the biggest fear I'd felt in recent times.

And, as an aside- a friend of my husband's picked up the dog and dropped her off that night.  One thing I remember clearly that night was watching them pull in the driveway; Freida (my dog) was sitting in the passenger seat of the truck, her eyes quite relieved to see her house.

My husband walked home from the police station. 

Thursday, September 5, 2013

I'm All Over Blogtember!

I came across this awesome idea from Sew Fantastic and found the original blog source and wanted in! I was one of those kids in school that beamed at the thought of an essay assignment, which continued through college. Even in grad school our scholarly papers were never a bother; except that I was frequently told to keep my page limits within the guidelines. That is how much I love writing. I could just write, and write, and write. Life seems to get in the way of it, though, so this daily blog challenge is going to truly be a challenge. But a fun one.

The topic for today is: Pass on some useful advice or information you learned and always remembered.

Of course, this one is actually hard.

The first thing that comes to mind is actually something from my former career. When I first entered maternity care nursing, labor and delivery gave me palpitations. It seemed so scary. Life or death scary. So much so that my first L&D job was a total clusterfuck (on everyone's part). My anxiety was awful, and working in one of the roughest places was probably not the best choice. So I had given up on L&D nursing for quite some time until I moved to NH and took a job that required that I learn labor and birth.

I was several years older, and had told my NH employer that I was scared. My previous experiences were not pleasant, to say the least, and they actually cared to make sure I was successful. They gave me to an experienced nurse for precepting, and it was she that wiped away any anxiety left in my brain.

We were reviewing fetal monitoring strips, discussing the fine points of our interpretation, when she said to me, "Jamie, always look for the positive. Don't go searching for the negative right away."
This advice was the best given to me, as almost always, there were positive findings to be had. She certainly hadn't meant to ignore troublesome tracings, or question something, but to change my viewpoint to always go for positive first was a game changer.

So I think that this came to my mind because it is actually something I remind myself to do everyday. It's not easy to follow. I think my brain is hard wired to immediately go to the negative. I am typically a glass half empty person, or at the very least a person waiting for someone to empty the glass!
Several years back a friend and I began to test the theory of The Secret. I am embarrassed to say that I watched the movie and bought the book, but it actually was an interesting experiment. My brother had been using The Law of Attraction for years, and it did appear to work for him. He started a very successful business, began dating his wife, and is comfortable financially. So, what the friend and I began using positive language during conversation, and I even tried the tricks they talk about in The Secret. And they worked. Mind you, this was a very heavy time in my life: I was looking for a midwifery job, trying to pay off debt, attempting to lose a significant amount of weight, and dealing with the day to day with my mother's extremely rare cancer diagnosis- a diagnosis in which even the world renowned specialists at Dana Farber didn't quite know how to treat.
I even started training my brain to think and look for the positive. I read affirmations to myself every day. As I fell asleep at night, I would also say them to myself. I never let myself get too deep into negative thoughts.

What happened with surrounding myself in positive thoughts?
Well, I lost 75 pounds. My mom was "cured". (She is almost 5 years cancer free!). I ended up being contacted for a midwifery job that was the perfect fit. I was able to pay off all of the debt, except for my student loan.
And then life went I mentioned before my brain is hard wired for negativity. I wasn't keeping up with the positive. I wasn't looking for it the way I was. And things changed. Not necessarily for the better at the time, although, having brought myself back to the positive mindset things are better. But it's work.
I guess this was easier than I thought for my first Blogtember post. Bottom line: Always look for the positive.