Wednesday, September 18, 2013

One Year at Home!

Wow! It has been a long time since I posted.  I've posted frequently in my head... those posts just never make it to publish.

Tomorrow will mark Ella's 1 year anniversary of her discharge from NICU and finally coming HOME!   A year ago tonight was our her last night in NICU.

164 days.

That's 2 weeks shy of SIX MONTHS.

With the exception of those 2 weeks over Christmas last year, we have stayed away from the hospital (knock on wood)!

Nearly six months of not having my baby at home.  Packing up my pump, laptop, notebook each day to spend hours upon hours at her bedside.

Not knowing what the day will bring. Will I get to hold my daughter?
2 days old - first time I held Ella

Will she have any breathing episodes?  Will she have any heart rate drops?

What tests will be run today?

First x-ray after her bloody stool, leading to her NEC surgery

What is her direct bilirubin level this week?  Will she be allowed to eat today? How much will she be allowed to eat?  What is her weight today?
Ella on her actual Due Date 7/21/12

When will she be able to wear clothes? Does she have another ROP exam today (if you never watched your child go through these exams you have no idea how lucky you are)? Will she need another surgery (Please God, NO!)?

Will the doctor come by while I'm pumping and I'll miss him?  Am I really THAT hungry to walk all the way to the cafeteria?
My view down the NICU hall from Ella's space at our 2nd NICU

Am I really that thirsty to have to leave NICU to have a soda or water and have to wash my hands for yet another 3 minutes before I can get back to Ella's bedside?

When will it be our turn for the car seat test?

Car Seat Test - a NICU milestone that occurs shortly before discharge

When will the doctor even entertain discussing DISCHARGE?

164 days of NO CONTROL. Few answers.

While it was a tough adjustment (putting it mildly) when Ella came home, due to her medical needs when she first got home - there are so many luxuries to being home with your baby, after so long in the hospital, that I am still thankful for today.

We're both HOME... together!

Besides being thankful for bringing your child home from the hospital, parents with children who had long NICU stays are thankful for the little luxuries of home that most people don't think about...

Ella is home and I'm...

  • barefoot!
  • braless!
  • in my PJ's!
  • watching TV (the news, a football game, a movie, anything!)
  • with my dogs!
  • having dinner/wine!
  • able to go to bed and still get up with her in the middle of the night (she sleeps through the night now, but this was a luxury in the early days)
  • able to clean my house.
  • able to take Ella for a walk whenever I want
I know I'm forgetting many luxuries... we've been home a year!  Help me out NICU families... what luxuries were you so happy to have because your baby finally came home?

When a child is born a micro-preemie, it doesn't end when he/she is discharged from NICU.  Homecoming is a next step (a GREAT next step) in her story.  This year has been a wonderful year of adjusting, balancing, enjoying, being and LOTs of therapy!  She works hard every single day to do things that come naturally to most.  That's another post.

Ella (courtesy of Grandma) in late August