Friday, January 27, 2012

Happy Half-Birthday, Norah!

Well ladies and gentlemen, we've made it six months with our tough little girl. Her life has been saved more times than I'd like to remember, and every scare, every bit of heartache, and every ounce of tough work has been worth it. She is the warmest, happiest baby I've ever met. Though we'll more than likely be celebrating her first birthday in the hospital in July, it will be the best birthday ever.

Nom nom nom!

Look at that playful girl!

Had to sneak in this too-cute photo taken after Harper came traipsing into the living room wearing my glasses.

A few weeks ago, Norah had a dance party with one of our favorite nurses, Cecily. Though developmentally behind due to her medical issues and life in the hospital, she does really well sitting in the Bumbo chair.

Saturday, January 21, 2012

Cranking Up the Volume

Norah finally got her hearing aids! They're cute and sparkly, but that just isn't enough to convince her of their worth. Her first reaction to being able to hear the world? Not good. She immediately began to bawl. She put on her super sad face (with her lower lip out and big genuine tears falling) to let us know that the world was too loud and too scary. Though I don't entirely disagree with her, she will get used to her hearing aids. And as she gets used to them, they'll be slowly turned up to reach typical hearing levels. We're only putting them on in short intervals in a quiet environment. She doesn't mind that too much, as seen in these photos.

We've had a really rough couple of days due to equipment issues coupled with an infection, but she is much better now that they've remedied the equipment problems. Unfortunately, the best way to treat her type of infection is with an antibiotic that she is allergic to. Poor girl. So they're pretreating her with Benadryl and Tylenol prior to running the antibiotic slowly, but she still turns bright red all over.

Saturday, January 14, 2012

Not Getting Any Easier

As Norah grows up at the hospital, our situation becomes increasingly difficult. The truth is that I'm tired of being strong. Though the quality of care at PCMC is unparalleled, I hate leaving her there. I just want to take my sweet girl home. I want to be able to laugh and smile all day with her. I want to tickle her toes and play "Itsy Bitsy Spider". I want to paint her tiny toenails with private giggles and cuddles just for us to share. I want Harper to be able to give her smooches and read books to her. I want family nap time on the weekend. I want to watch Jeff fall asleep while holding her late at night. I don't want to have to worry about test results, treatment plans, x-rays, ventilator settings, hearing aids, and specialty doctors. I don't want Norah feel the pain of blood draws, culture swabs, the tug of the vent on her trachea or her g-tube on her belly, or all of the constant invasive poking and prodding. I want normalcy. I guess our current way of things is "our normal".

I try not to feel sorry for myself too often. After all, I know things could be much more difficult. We are fortunate to have as much as we do. Most of all, we are fortunate that someday, we will be able to take Norah home. She has a challenging but bright future so long as we all be patient and hang in there. Deep breaths aren't easy for our family (especially Norah), but we sure are trying.

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