Sunday, September 29, 2013

Do people still say 'retarded' ???

September 29, 2013
Seven and a half months

I haven’t met my new doctor yet but I had my first appointment with a registered nurse. The office is at Maternal Fetal Medicine (MFM).  It was an interesting morning.

Two older, robust women were in the waiting room including everyone in their conversation, poking at kids and discussing how often one of them was going to use the bathroom (I wish I was kidding).  I didn’t care even though we were all sat there for 45 minutes until one of them blurts out “How did I not know that, I’m so retarded.”

A mom across the waiting room caught my disgusted look and she smiled that knowing look and pointed down at her tiny daughter in her arms and mouthed the words “I know, she has Downs Syndrome.”

I just sat there and cried.

A few minutes later a pregnant woman and her mother walked in pushing a stroller with a kid about H’s age.  The pregnant woman refused to sit down and instead chose to lean against the wall staring into space.  Same spot I picked when I lost Joe. She looked about 20-25 weeks along.  She wouldn’t look at her toddler who was chattering away to everyone in sight.  They were all escorted inside by an ultrasound technician and about ten minutes later, the technician came out looking for the next patient.  The previous family had been shuffled out the back.  I have a hunch I know what their weekend turned into.

I thought about those encounters while I sat through my appointment.  I was told about hospital policies and the chances of the doctor I’ve signed on with delivering my baby – one in 15.  She covers two nights and one weekend out of the month.  Except when she’s on vacation.  There are 14 other doctors who do rotations.

Maine Medical Center (MMC) is a teaching hospital so the nurse was explaining what that will mean for me - residents and students and an audience of people with no direct impact on my health care.  I brushed her off and said, no need to discuss that, I won’t have residents involved in my delivery.  Well that’s not how it works, nurse continued, it’s part of the hospital’s setup, the residents have to learn somehow.  

I replied, "Not to worry. I’ll put it in my birth plan that I don’t want residents."

“You probably shouldn’t deliver at Maine Med then.”

Forced from my docile, pregnant cocoon, I explained that my decision on where to deliver was made already and having delivered two babies there I knew a thing or two about what I could and should do, thank you, let’s move on.

I’m almost glad she tried to give me advice because it left me feeling compelled to share what I know and have learned in the past three years.

#1.  You do NOT have to be touched or seen by a resident in a teaching hospital.  You are not only allowed, you are entitled to see a real doctor.

#2.  You do NOT have to give birth in front of a team of students so they can see how it’s done.  Someone else can be on display if they choose – you don’t have to submit to any public viewings by people not involved in your care.

#3.  Nurses don’t know everything.

#4.  Doctors don’t know everything.

#5.  Nobody knows everything.

#6.  Hospital policies don’t supersede your right to privacy or qualified doctors.

#7.  If you request an actual doctor, the nurses may be irritated with you and it may take longer to see someone.

While I’m at it, here’s another list.

1.  The silver nitrate eyedrops they put in a newborn’s eyes make his/her vision blurry and they sting.  Translation, he/she is brand new to the world and instead of seeing your face, his/her eyes are burning.  Unless you have an STD (chlamydia, syphilis, gonorrhea, etc.) the drops are unnecessary and you can request they not be used.

2.  The vernix that covers a newborn baby is good for their skin.  It does not need to be washed off for days.  If a baby is not washed, the nurses have to wear gloves when handling the baby.  It’s a pain and some extra work for hospital staff but waiting to bathe your baby is an option.  The nurse who handled H in the Neonatal Intensive Care Unit (NICU) ignored my request and cleaned my baby when I wasn’t there, later explaining that the vernix was getting on her nerves.

3.  The heel stick blood draw to run routine state screenings in the hospital can give false results because so many of your hormones and blood and guts are still running around in the baby.  A new set of tests would have to be ran to confirm anything they find anyway.  You can wait to have the testing done through your pediatrician so that A) the results are reliable and B) you don’t run the risk of driving yourself crazy with worry if there’s a false positive.

4.  You don’t have to bottle feed your baby while waiting for your breast milk to come in.  Even if a resident doctor comes in full of piss and vinegar demanding to know why you are starving your baby.  Even if she asks if the 5ml you wrote on the feeding chart was a mistake.  I would never have known that had I not taken a breastfeeding seminar.  Or that a first-time mom can take up to three or four days for her milk to come in.  H not only survived, he was off the charts for weight gain in a week.

5.  You can cram all the diapers and diaper shirts you can manage into your hospital bag before you leave.  I don’t know if there are any consequences but it helped those first few days.

6.  You can spread out vaccines if you choose to get them for your baby.  Two and three and four needles at a pediatrician visit sounds like a lot because it is a lot.  Some of them are required before kids start school but I think if you sign some documents taking responsibility for a scurvy outbreak there’s no rush to make baby a pin cushion.

7.  First-time moms are not idiots, they just aren’t respected or listened to.  You won’t get a do-over so don’t be afraid to be a bitch the first time around.

8.  Losing a baby is the hardest thing you will ever go through.  Don’t assume you are over-emotional or too demanding if you find anything triggering or stressful after a loss.

9.  Being sexually abused as a child is an absolutely acceptable reason to ask for less vaginal exams.  Especially if you have never seen the doctor before. 

10.  Checking for dilation during office appointments is completely worthless information before you are in labor.  It helped to know I was four centimeters at my last office visit before I went into labor but it didn’t make the next 36 hours go any faster.  (I was induced after Joe died and not checked once).

11.  It’s okay to ask questions about anything you don’t understand.  What’s being done to you or your baby is 100% your business.   Pregnancy is not an illness and even though deliveries happen in hospitals, you are not a traditional ‘patient.’  You are a consumer and everyone has a supervisor.

So often over the course of my life, I have walked away from experiences feeling like a complete failure wishing I had said something but not wanting to rock the boat or be disliked.  It hasn’t gotten me anywhere.  I still feel awful after I speak up but it does more damage to me when I stay quiet.

I didn’t cause a scene in the waiting room because all I could think of was to point out the little girl who had Trisomy 21 and demand those ignorant women apologize.  I’m not sure I handled it well to be honest.  I feel like I let Joe down.  I did go over and tell the mom about my little boy and congratulate her on the beautiful little miracle in her arms.  That was all I was capable of at the time.

I’m a mom of a child with special needs.  I didn’t dodge that bullet because Joe died.  You just can’t see him with me.  It hurts to the core when I hear the word retarded or even the more subtle things like pretending to finger spell or making noise as though you can’t talk or make jokes about riding the short bus or say someone belongs at the blah, blah, blah school.  It all amounts to the same thing.

You know me though.  Much braver on my blog than in person.

Saturday, September 14, 2013

Leaving midwives behind

September 15, 2013
Seven months

Joe will be gone seven months tomorrow.  I came across a blog from exactly a year ago when I was worried about finishing my psychology degree and how I would handle H starting school. Tonight we re-lit three of Joe’s candles.  One for the new baby, one for Joe and one for H – the three leaves in my lucky clover.  We’re watching a dvd of the ultrasound we had earlier today.  H keeps saying ‘Baby Joe!’ and we have to keep reminding him, no, not Joe, new baby.

Joe will always be a part of our lives.  We didn’t throw away or hide the big brother shirts and we talk about how much we love him often.  We are already a family of four.

Sometimes it feels like he’s really gone and other days, it’s like he’s sitting beside me holding my hand when life gets too real.  I’ve been extra anxious now that the baby is approaching the same size Joe was (1 pound, 11 ounces) and the kicks are just as strong.  It’s not easy.  I wonder if this will be the last kick; if little one is getting enough of the things a baby needs; if we missed another Trisomy the tests can’t pick up.  Mostly I feel guilty for wanting a healthy baby, for not wanting another still, motionless child in my arms.  I don’t know how I got through this far.  I don’t think I could survive it again.

Over the past couple of months I’ve been seeing a group of midwives who promised to focus on both mom and baby while I’m pregnant.  I was upfront in the beginning about my anxiety, PTSD and fears.  They reassured me time and again, we are here for whatever you need.  Come in as often as you want to hear the heartbeat if that will help ease your mind.  Chase us down the road if you see us in public if that’s what you need.  Call anytime. It only takes two minutes to drop some gel on your belly and put the Doppler on there.  That’s what we’re here for.

I’ve also been meeting more and more loss moms whose stories haunt my nights and my days.  I know the things that can go wrong.  I know there are hundreds of other possibilities.  I’m also in my first year of loss.  I am a nightmare patient.  I’m also a nightmare wife and friend.  Some people have signed on anyway and are loving me through this process.

The midwives – not on that list.  The exact reason I left my OB was because a secretary told me my request for an ultrasound was unnecessary and not an emergency and at the very least I should go to the more equipped facility to do this pregnancy right and refused to ask the professional I trusted to take care of me.  All three things have been said to me at the midwives practice.  By a secretary.  I gave up a great doctor to avoid going back there (granted he didn't address the secretary's behavior but he was a good OB). 

Two days ago the eldest dirt mother at the midwifery group read off all the dates that I’ve called in and told me what I expected of the practice was abusive and they couldn’t have one pregnant woman ruling the roost.

Okay then, so see you in a few weeks and then eventually I will trust ye crowd to make decisions that are best for me and my baby and not let your petty, bitchy grudges against someone who was asking you to do your fucking job get in the way.  Alrighty then.

She had taken offense when I asked if I could start having ultrasound each month.  I’m approaching the time I lost Joe.  There’s only so much yoga a person can do to ease anxiety.  Ultrasounds are relatively harmless (unless you are the rat in the study that they held an ultrasound on for those 72 hours) and maybe I changed my mind about how many I wanted.  I went from the none suggested by some folks to the amount some of my mom friends had for much less reason than a previous loss.  My ‘care provider’ told me she would refer me for one more but unless it was recommended by the high risk doctors at Maternal Fetal Medicine, that was it – she was not going to be directed by me.  Then she asked in her best condescension ‘do you understand what I’m saying?’

It flashed though my mind to spew ugly things at her about death and loss and grief and cold bitches who let a tiny bit of power convince them they have some magical ability to keep babies alive – but instead I stayed calm.  I felt something in the room that kept my hand steady and my voice from cracking. 

I had already spoken to the folks at Maternal Fetal Medicine who were not surprised to hear from me at 21 weeks and were bending over backwards to fit me in to check on my baby.  And what do you know – given my history, they were more than happy to schedule me for each month from here on out for as long as I’m lucky enough to still be pregnant.

I need to be surrounded with love right now.  With excitement at the miracle in my body. 

The midwives are the only act in town unless I want to do a home birth or go back to an OB/GYN.  I can’t imagine they aren’t aware of that.  I wanted a more empowered birth experience and I fail to see how cutting someone down is supposed to be helpful.  Perhaps if they had returned my husband’s calls when he tried to act as my birth partner and called for me.  Or if the two ladies in the office the day I asked for a heartbeat check could have stuck around for a couple of minutes before taking their hour and a half lunch break, I would have felt supported.

I know at least a couple of people who read my blog regularly who will roll their eyes and pat themselves on the back for always knowing what a screw up I am.  What a disappointment and wreck I’ve made of H’s and my husband’s life.  Whether that exists in my head in the wee hours of the morning or if it’s real, I don’t know.  What I do know is that being dismissed and accused of being abusive when I’m just asking for help puts me right back into those relationships where I’m nothing – someone whose birth was a mistake, whose existence is simply a scourge on humanity. 

I already feel low enough.  I have a son who looks to me for cues on how to allow people to treat you.  How to pick yourself back up when you fall down and when people are mean to you.  NOTHING else matters.  I refuse to be anyone’s doormat while he’s watching.  I owe it to him and Joe to take care of myself even when I am struggling to face the day.

And to this little miracle here in the picture below.  

I went to my ultrasound yesterday and it was incredible.  My baby is beautiful.  All the organs are functioning like they should, everything is in the right place and this little snippet from the scan is the most amazing piece of artwork I’ve ever seen.  How did I get so lucky?  How has this been happening while I deal with grief and loss and the everyday crap that happens?

Possibly a little grace from the universe.  Perhaps a little help from Joe Grayson. We can all feel the kicks now and baby is happily growing.  I’m not na├»ve enough to expect one more day of this.  Horrible things happen all the time.  But if I get up tomorrow and feel more kicks and some pain in my back and a little queasiness from the hormones, I’ll know I get a little more time being Mama.  There’s so much joy in my life alongside the grief.  A hand that is almost the size of mine (even though he’s not even 3 years old yet) feeling his baby brother/sister moving and planning for next year when we go to the hospital to bring baby home is almost too much to take.

If I didn’t have people who overlook the crazy and still want to be in my life, I would give in to the jerks.  So if you’re a jerk and you can’t figure out why I don’t just disappear, blame the good people in my life.  Until I can stand on my own, I will keep relying on those who think I’m awesome.  If inspirational Facebook e-cards have taught me anything, it’s that you can’t please everyone.  To hell with the rest of them.

The search is on for an OB/GYN in the Portland, Scarborough, Falmouth, South Portland area who has experience dealing with rainbow pregnancies.  I bought my own Doppler so we have time.  And for the record, I have a lot of respect for midwives.  Just not a lot for those who struggle with simple things like feelings.