Resuscitating Old Memories

It sort of happened.  I had my first PTSD moment surrounding my job, although it wasn't at all what I thought would trigger it.

It wasn't caused by a patient, or a family, or a real live situation.  Nope, it was caused by a book.  A book that I had to read for a course I have to take in order to ensure I am competent to work in the NICU.  The book is more of a manual and it's called "Neonatal Resuscitation Program, 6th Ed". I had to read it before taking the course to get re-certified in neonatal resuscitation. The book is divided into 9 lessons.  Lesson one states that 90% of babies make the transition to extra-uterine life without any other interventions than drying, warmth and stimulation. They go from that awful blue-grey to pink and screaming while everyone laughs and cries and hugs.  However, about 10% of babies need some extra help.  Lessons 2 through 8 work through these extra steps using a handy flow chart.  Generally the steps become more and more invasive. They including suctioning, providing free-flow oxygen with a mask, initiating positive pressure ventilation ('bagging' a non-breathing baby), starting chest compressions, intubating, giving epinephrine and fluid boluses to get the heart rate and blood pressure to rise, and needling the chest in case of a pneumothorax.  

Lesson 9 covers "End of Life Care".  In the rare event Lessons 1 through 8 fail to solve the problem.

Lesson 9 begins with a 'case study' of a woman who is admitted at 23 weeks in labour with ruptured membranes and a possible infection.  The health care provider is suppose to sit down with her and her support person prior to delivery and rationally discuss what the family would like done when the baby is born.  The health care provider should be sure to include in their discussion both survival rates, possible complications, as well as the possibility of providing only 'comfort care' to a baby who has a low chance of survival or a high possibility of 'morbidity' (ie: likely to have on-going life threatening problems).  The family is then expected to tell the health care professional what they would like done, and the health care professional is suppose to respond that they will do everything possible in order to honour the family's wishes, however plans may need to be changed depending on the condition of the baby when he or she is born.

Yes, of course, this all sounds reasonable and well planned out.

Lesson 9 made it sound so simple.  So clean.  So clear.  Books are like that.

But I remember that exact situation being much more messy, painful, confusing and terrifying.  There was shouting, bright lights, running feet, blank faces, pain, pain and more pain.  

The question asked by the delivery team moments after Aidan was born:

"What would you like us to do?"

Save him, of course!? (But he's so small...it's too early)

Don't hurt him?!!!  (Oh, baby boy, I don't want them to hurt you)

*beat*

....?

"What's his condition?"

"Do what you can."  

(Make this better.  Make it stop.  Turn back time.  He doesn't belong on the table over there.  He belongs with me.  Inside me...  Sorry baby boy, mommy's so sorry.)

***

Lessons 1 through 9 brought it all back.  Brought back the pain of both deliveries.  Aidan's that was the beginning of the biggest tragedy of my life, and Kaia's that could have been.  It made me panicky and shaky thinking of all that Kaia went through after she was born.  I remember reading her chart in the hospital during her first week of life, and noting how long, and how much effort it took to get her oxygen saturations to normalize. She was in a 100% oxygen at one point and they couldn't get her sats above the 60s.  That's when they started nitric oxide...a method generally of last resort. I thank my lucky stars every day that it worked.  It's scary to even think about what could have happened.

And I thought a lot about Aidan.  His delivery.  How rushed and overwhelming it was.  How unprepared we were.  How that question of what to do is not so easy when it's asked of you.  I remembered how awful the NICU doctor was who came to 'assess' Aidan.  He spoke with the nurse, took one look at Aidan, shook his head, turned around and walked out.  He never came to tell us what steps had been taken to revive Aidan (oxygen? bagging? I don't *think* they intubated him...but I'm not sure....). The neonatologist never spoke with us at all.  After he walked out, the nurse asked if I wanted to hold him.  It was obvious he was going to die.

Reading that manual made me think back. How hard did they try to save him?  Did they do everything they could?  Could they have done more?  What steps were taken?  How far down the flow chart did they make it? I never asked.  Maybe I should have.

Maybe most of all, it made me remember how wishy-washy our answers were when we were asked in the delivery room what we wanted done. We didn't scream "SAVE HIM!!!  I don't care what you have to do!!!"  Brian didn't follow the doctor when he walked out of the room, pulling at his sleeve, yelling "Get back here and do something!!!"  I quietly accepted when they asked if I wanted to hold him, knowing what it meant. We accepted that he wasn't going to survive without any protest.  What parent does that?  Certainly not some of the parents I encounter in the NICU.  The really tenacious ones reject any possibility of ever turning off the ventilator, insist everything be done, and often refuse to believe any bad news at all. Maybe if we had done that, Aidan would have survived.  Maybe they are better parents than I am.

But, how hard would I have wanted them to try?  My overwhelming thought in the delivery room after 'save him' was 'don't hurt him'.  To save him, he would have had to hurt.  Possibly a lot.  Probably for a long time. Possibly for his whole life.  I don't believe in life at any cost.  Not for myself, and therefore, not for my child.  Resuscitation worked and worked well for Kaia.  My gut tells me it wouldn't have for Aidan.

***

The Neonatal Resuscitation Program condenses 9 lessons into a one page, easy to read and follow flow chart.  This helps health care workers make fast, evidence based, critical decisions when newborn babies face life threatening situations. 

If only such a flow chart existed for parents.

Did you have to make life altering decisions around your child's birth/death?  Did you ever question those decisions in hind-sight?  Was the medical care your child received transparent in its application and to your satisfaction?

Hi ho, Hi ho...

I've been back to work in the NICU for a few weeks now and it's actually going quite well.  My manager gave me 7 shifts 'buddied' which means I've been working with another nurse to cover one assignment so I have time to get my skills up to scratch without worrying about being totally 'in charge' of the babies.  I'm kind of surprised how much I (so far) enjoy working and don't long to be home with Kaia (at least not TOO much).  I realize how much I missed the NICU and how much I like 'high tech-ness' of it compared with the contract job I did in between pregnancies.  The NICU is a much more difficult job and a more stressful place to work, but more interesting too.  I'm only doing 2 shifts a week though, so I think it will be manageable.

Being with the babies does bring up a lot of feelings though.  I've been missing Aidan and thinking about my pregnancies more than I have in awhile.  Partly that is due to working with people I haven't seen in over 2 1/2 years who of course, want to know what I've been doing all this time. (Was on bed rest, had a dead kid, worked somewhere else, was on bed rest, had a live kid, then looked after her and pumped breast milk for a year. Thanks for asking!)  A lot of people have sort of kept up with me via facebook and immediately ask "How's your daughter?!"  It's a safe thing to ask.  Every parent likes talking about their kid.  It's nice to be able to respond about how well she is doing.  How happy she is.  How healthy.

No one mentions Aidan unless I do.

In between taking care of the babies, and when there are no parents in the room or while we're on break, I've shared with some of my colleagues what we've been through in the last few years.  What it's like having a pregnancy that's in danger.  What it's like having a child that died.  What it's like having a baby in the NICU.  As much as my colleagues 'get it', since they work with families in similar situations to mine every day, it's an impossible situation truly to understand until it's you.  The fear.  The anger.  The hope. The disbelief.  The sense of loss.  

Seeing the babies isn't as hard as I expected.  I haven't had any really strong reactions or flashbacks or feeling like I can't cope. That being said, I haven't had to look after a brand new extreme preemie yet (< 25 weeks).  I'm kind of dreading having to admit a brand new 23 or 24 weeker, but I'll cross that bridge when I get to it.  I know it will be difficult looking after a child who is closer to Aidan's gestational age.

There are a few babies on the unit who are former extreme preemies.  One I looked after a couple of weeks ago is now many months old and still not doing well.  May never do well.  This baby may have spent months and months in the hospital, parents hovering, hoping, praying; enduring many, many painful and invasive procedures and surgery...and may still die.  In situations like this, my colleagues have a hard time wholeheartedly agreeing with the parent's decision to continue care, and 'nurse me' gets this.  It's awful to watch a child have to endure so much suffering day after day.  As a medical professional you begin to feel more like you are hurting the child, than helping him or her.  You begin to question what type of life a child is going to have after surviving so much.  Will he or she grow to enjoy life, able to actively participate in society?  Are you doing the family a service by saving their baby?  Or will life be a constant battle from one medical crisis to the next?  It's also a struggle to balance the wishes of the parents who may want to continue no matter what, while being afraid you are no longer 'doing good' for the child.  How much is too much? There are no right answers.

However, coming back to work I find I am much more sensitive to the decision making processes that parents of these types of children might face.  I have a much better appreciation of what it's like to have to make very hard choices when there is a lot of doubt surrounding the outcome. How hard it is to keep up hope day after day, in the face of so much adversity. How angry you feel at doctors, nurses, social workers, as they look at you with pity, as if you're not *quite* understanding how serious the situation is. As a parent you feel it's your job to have hope for your child.  Hope that he or she will be okay, that your baby will end up on the good side of statistics.  It's hard to do this when you never get any good news and never see much progress.  I have a feeling, this will be another area I might have difficulty coping with.  Identifying too strongly with the parents of 'hopeless' cases.  We'll see how it goes.

One other thing that I have found really interesting is that I'm finally beginning to have that sense myself as a changed person.  The one I was 'before Aidan' versus 'after Aidan'.   I often read on others blogs how they feel they are a very different person person before and after their baby died.  They don't recognize their 'before' self in photos.  They don't identify with the same values or concerns they had prior.  They feel like a changed person.  I honestly never really felt that way after Aidan died.  I definitely saw the timeline of my life as 'before' and 'after' but I couldn't say I really felt like a different person.  I felt like me, only sadder.

Being back in the NICU, I'm really getting a sense of myself 'before' and 'after'. I realize that I never entirely assimilated back into who I use to be, because I never returned to all the same routines that comprised my life before him.  Aidan died, and then I started a whole new 'work life'.  I had new colleagues, I worked different hours and I worked on a different floor with an entirely different patient population. I didn't have to make myself 'fit' into my old life entirely, because I just never went back to it.

And now I have.   

I will say, it's weird.  I belong and yet...I've experienced so much. And I realize that changing jobs when I did, was entirely the right thing to do.  I'm glad my career moved in a different direction after Aidan died.  It helped me cope, and not just because it removed me from 'the babies'.  It helped pull me out of myself by having to interact with new people and learn new things.  It kept me feeling like I was moving forward rather than just that awful feeling your life 'circling' after your baby dies.  I've realized that that would be my advice to anyone who has lost a child.  Once you come to the point where you can get out of bed and walk out the door, try something new.  Anything.  It doesn't have to be as big a change as a new job.  Just change your routine, even if it's something small.  It helps to get you out of that mindset of what 'should' be and helps you to focus on what is.  That, in my opinion, is an important step in moving forward.

Coming back to the NICU, I feel like I'm picking up where I left off.  It's strange, but also kind of good.  My life is different now.  I'm mom to a living baby, and mom to a dead one.  I've faced some of the situations that were my worst nightmares.  I've grown and lost and gained and hurt and survived so much that I realize I'll never be able to truly go back to the person I use to be.  I'm not the same person that I was on my last 'before' shift in January 2010.

And now, that's finally okay.

Do you feel you are a different person 'before' and 'after'?  Does that bother you?  What do you think of my advice to change your routine after your baby dies?  Would you agree or disagree?

Melancholy and the Infinite Sadness

I have a much longer post that I'm working on about my return to work (which is actually going rather well), but I don't feel like being happy and positive tonight. 

Tonight I feel like being a bit sad.

My cousin (finally) had her baby.  16 days over due. (!!!!)

I know, right? 

Dead baby mom me was screaming "holy crap....get that child out now!  It's fully cooked!  You don't want anything to go WRONG AT THE LAST MINUTE!!!!"   It didn't.  (Whew).

It was a boy. 

Since their family lives on the other side of the continent and I likely won't see this little guy very often, I was slightly surprised to feel a twinge of envy mixed with sadness.  Perhaps I should come to expect this when hearing about the birth of a baby boy.  Especially one born so close to both Aidan and Kaia's due dates. (It's kind of odd that he was due two years plus a day after Aidan and he was actually born one year plus a day after Kaia's due date.)  Just like when my nephew was born back in February, I'm very grateful the baby is healthy, and happy for my cousin and her husband who have waited a lot time for this, but there is that lingering heartache about hearing of another healthy, full term first baby boy.  Someone other than me got that wonderful moment of giving birth for the first time and hearing a cry.   Happy for them.  Sad for me.

It's also coming at a time where I feel we really have to decide whether we are going to try for another baby or not.  Kaia is 14 months old now and more and more every day she is moving away from babyhood.  It makes me a bit sad to look back at her pictures and think "my goodness, how she's changed! She's not a baby anymore!" On the other hand...hallelujah!  She's a lot of fun at one! She often sleeps through the night. She's becoming much more communicative.  She eats by herself in her high chair and easily holds her own bottle or sippy cup.  She gives hugs now.  She has 7, and is working on 8 teeth.  She is *just* starting to cruise a bit along the furniture, although I think it will be awhile before she walks independently. I sense that both Brian and I feel more relaxed about Kaia. She is thriving.

So...where do we go from here?

Do we keep with the status quo?  Do we settle into being a one child family?  Do I start to focus on my career, free to return to school in a year or two to work on my Masters?  Wave good-bye to my baby making days for good?  This would be the safe, comfortable way to go.  It would be easier financially, physically and possibly emotionally.  I know it's what some of my family members and friends would like for us.  They don't see a reason to ever risk it again.  Twice was enough.

But it's hard to let it go.  Both Brian and I would like another child.  Not desperately the way we wanted (and needed) Kaia, but there is a definite desire there.  We love her so much.  We love watching her grow.  Love watching her develop into her own person.  We would love for her to have a sibling.  Kaia should have an older brother.  Someone to play with, to learn from and to rely on, but she doesn't.  Since we and she can't have Aidan, maybe we could create some one new.  Not a replacement, but an addition.  I see so many parents with two or more kids, and how they have such love and pride watching their children interact.  I want that too.  I want that for us.  I want that for Kaia.

There is also a definite desire on my part to have the happy pregnancy and birth experience.  I keep wondering if 'next time' could be wonderful.  What if I don't risk it?  What if I never find out?  Would I regret it?  Could I deal with it if it's not?  Could I go through everything again only to have another terrible outcome?  At the end could I say it was 'worth it'?  I don't know.  The entire pregnancy process alone seems daunting. From the 'trying" (is our timing right?) to the 'finding out' (is that a line?) to the blood work (doubling betas?) and ultrasounds(does that placenta look okay??!!!) and doctors visits (hours and hours in the waiting room) and worry, worry and more WORRY.

It's a confusing muddle.  I wish the answer would just come to me.  I wish the outcome was already known.  

I would do it all again in a second to have another outcome like Kaia...but not for another one like Aidan.

Maybe that's my answer.