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.

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