But that is not what is pissing me off today. What is annoying the bejesus out of me is that I have read yet another total crap story about a "miracle baby" and have seen an even more ridiculous interview with parents who are deluded because they think since their babies (25 weekers) have been released from a nearby NICU that they are "just fine."
It takes a one very, very tough baby, a boatload of hard work, incredibly smart and dedicated doctors, nurses and parents (yes, we do deserve a smidgen of credit), dozens of medications, countless medical procedures (many painful beyond your average person's imagination), thousands of hours of therapy, a couple of million dollars of medical care, some really excellent guess work to figure out what is wrong and how to fix it and at least a moderate sense of humor so you (the parent) is not placed in a locked ward, to get from this:
to this:
So can someone riddle me this: why does the media insist on portraying these babies as perfectly fine once they walk (figuratively) through the platinum door of the NICU? Why isn't the media interviewing the parents a year later when the reality of raising a micropreemie has really set in because the baby still can't roll over? Where is the Today three years later when your child is still on a liquid diet and you are wasting another day of your life arguing yet again with some dimwit at Oxford United HealthCare who still isn't not grasping that your toddler really doesn't eat actual food?
I suppose these are rhetorical questions, since those of us on the cruise ship known as the SS. Micropreemie have figured out that people only want to hear the happy hoo-ha and gloss over the "details" of our children's' lives.
Sigh.
I know what you mean. My husband has heard many many rants from me about how the media portrays preemies...and the sad parents who are reassured their child will be 'fine'. We were told right off the bat the million things that could go wrong...in the first second in my mind I was offended and overwhelmed that they were placing a stereotype on this tiny one pound of a baby...but a second later I said "okay, we'll deal with all that when we get there. What are we looking at right now?" Sorry to drawl on, but I agree with every point you have made. We are only a year into our micro preemie adventure, but my kiddo does not eat by mouth, has a g tube, just started sitting up, and has a host of other problems. It's life and we live with it day to day.
ReplyDeleteBecause no one wants to hear the truth.
ReplyDeleteRecently Erik and I have had a helluva a time trying to set up a trust fund for Emery. You see, in IL (a great NON corrupt state haha) has little options for pathetic blue collars like Erik and me, but one option is a state-funded savings plan for Illinois colleges.
Except, I don't know if Emery is going to go to college, or live independently for that matter.
So, we went to the bank and tried to get financial advice.
Do you know what we heard?
"But I thought he was fine? What do you mean he might not go to college? Don't you think he'll just grow out of it?"
Amen. Thanks. I'm so sick of hearing "fine" and "okay." I feel like my life is a constant "yes, but..."
ReplyDeleteYes to all of this. Most definitely. People never want to hear about the babies that don't leave the NICU 'just fine' or about any later problems that might develop.
ReplyDeleteThank you for writing this piece.
It's so ridiculous. But people just don't want to hear it and the crazy misinformation spreads.
ReplyDeleteLaw and Order last night touched briefly on the topic last night, making the spurious claim that babies after 22w were viable. Yeah, maybe, some of them, but at what cost? I wanted to throw something at the television.
If I had a dollar for every "but he's ok? right?" I could pay off all these past medical bills.
ReplyDeleteHello Annie,
ReplyDeleteYou had to do lot of hard work to make Eliza this way. Did you give her H1N1 shot? Is it safe to give? Does it have mercury for preservatives?
My child is in the spectrum so I am worried about the shot. I know H1N1 is deadly also. I am confused.
Thank you.
Kathy.
Hi Kathy,
ReplyDeleteFrom what I have read, the H1N1 is manufactured in the same manner as the regular flu vaccine. The multi-dose vials do contain a preservative (thimerosol) but the single dose vials do not. The injections are made from killed virus and the mist is made from a live attenuated virus.
Here are two links to some helpful information from the CDC:
http://www.cdc.gov/h1n1flu/vaccination/public/vaccination_qa_pub.htm
http://www.cdc.gov/h1n1flu/vaccination/vaccine_safety_qa.htm
Eliza will be getting her H1N1 injection next week from a single dose vial. Given the potential seriousness of the regular flu and the H1N1, I think for us, getting vaccinated is the right thing to do. I am pretty "pro vaccine" but respect the informed choices made by others for what is right for their family.
I found these two websites to be very helpful in my decision making about whether or not to vaccinate Eliza and hopefully you will find them helpful too.
I've had it up to "here" with that stuff as well. "But LOOK at her, she's FINE. And just think about where she came from! She's FINE!"
ReplyDeleteOh, FINE means a GTube tube and refusing to eat food like an average 18 month old? FINE is still not able to stand without help and needing leg braces? Is that what FINE is?
Last time I checked, that wasn't FINE.
My personal favorite is "but what can you expect when she was born so small?" My new stock answer is that what I expect is just the smallest amount of empathy and heaven forbid, compassion.
ReplyDeleteAnne, as someone who has been watching this blog for a while, I just had to tell you that not everyone wants the story glossed over and I LOVED and appreciated your piece in the newest SMC newsletter. Thanks so much for sharing your story and your perspective and helping those of us who haven't had your experience know how best to try connect.
ReplyDeleteBarb,
ReplyDeleteThanks for the kind words and the support!