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Sunday, December 16, 2012

And then....They just let me take her home

"In three words I can sum up everything I've learned about life: it goes on." -Robert Frost

Now I have answers to most of those questions.

No. She would never see her daddy's face.  But, she would see how beautiful his soul is every time he holds her close to his heart.  Every time he fiercely protects his baby girl.

Her brain appeared to be normal but, they would have to do a MRI to be sure.  This would not tell me anything about her cognitive function, however.  I did not realize back then that the words "her brain appears to be normal structurally" did not mean she would have normal cognition.  It turned out to be a blessing that I did not know that then.

Her kidneys were anatomically normal.  Except for some extra fluid in them called hydronephrosis and  something called vesicoureteral reflux. 

What the heck is that?

Pertaining to her story, it was pretty insignificant.  She ended up just having a few procedures and was required to take medication so she wouldn't get a kidney infection. Although the procedure called a VCUG, to test for the reflux, was traumatic for her it was probably more traumatic for me. She eventually grew out of it by the age of 3.

The hearing screen result was a little hairy.  The first screen they ran was normal in one ear and abnormal in the other the first time they did it.

You can imagine my reaction when the hearing screen person told us the results.  I will never forget the look on her face as she tried to be as gentle as possible explaining that they would have to test her again.

She knew that Oli was blind and I could tell that she wanted nothing more than to tell me my baby would be able to hear me.  She could see the look on my face as I silently pleaded with her to tell me the test was normal.

Please let her hearing be okay.

We will have to run the test again tomorrow. This does happen sometimes.  Sometimes we run the test too early after delivery and there is still fluid in the baby's ears.

She came back the next day and tested Oli again.

The results were normal.

She did hear all of my expressions of love. 
She did hear me when I repeated "I am so sorry" over and over again.
She heard me when I vowed to do absolutely everything in my power to ensure she had the best life possible.

And then the nurse came in and told me I could take her home.

Just like any other baby.  They told me to just take her home. 

What was I supposed to do with her next?
They were going to let me just walk right out of the hospital with her?
Were they crazy?
I needed a few more days!
I need to prepare.
I needed a battle plan, an army of soldiers to protect her from the world.
I needed to erect some kind of force field around her.
Wasn't there some sort of pamphlet they were supposed to  give me providing detailed instructions?
Wasn't someone going to tell me what the next step was?

I was absolutely terrified. 
The hospital staff just assumed that I would know what to do?
 Just because I was a NICU nurse?

 I was not NOT a nurse at that point.  I was a new mother and I needed support.  I needed to know there was a path that I was supposed to follow.  I wanted someone to direct me and tell me where to go.

I will let you in on a sad little secret of the special needs world.  Most people do not tell us where to go for help.  Nobody provides us with a list of all the services that our children can benefit from.  The services our children are entitled to.  I guess they think that when we get the diagnosis we automatically absorb this information through osmosis.  By being in close proximity to other special needs parents. 

Why doesn't anyone let us know?

1 comment :

  1. That last paragraph is so so true and upsetting to me. What a crap system.