Wednesday, September 24, 2008

Another night in paradise part II

Here' a riddle for ya: What do you get when a baby who already has sleeping problems is possibly coming down with a respiratory infection?

Exhausted Parents.

Despite not writing about it on the blog, Faith has been sick a lot this summer. Nothing major. But when you have a child with chronic lung disease who is trach/vented the littlest cold can throw everyone off the edge. As if nights with Faith weren't hard enough, when she is sick there is not a wink of sleep in our house. Faith has needed so much suctioning the past few nights.

Although Brian and I take turns taking care of Faith during the night, when push comes to shove and 3 am hits it's usually a two person job. It's very exhausting to be up night after night, work with kids all day, come home and do it all over again.

On these particular nights my heart goes out to Faith. She just looks so miserable. She wants to sleep... she just can't. During the day she still has copious amounts of secretions but is her smiley self. So obviously she's not that sick, but sick enough to make us all a little out of sorts this week.

As with any parent, however exhausted we are, when we see our baby girl's smiling face it makes it all worthwhile. :) Here's a few pics that will (hopefully) make you smile:

Faith out and about for her Uncle Josh's (Jen's brother) birthday party. It was also her Uncle Kevin's (Brian's brother in Buffalo) birthday last week so happy birthday to all of the uncles!
(And Uncle John in Atlanta if you are reading this happy belated b-day to you too!)

Faith on another adventure at Bass Pro Shop.

had a nice surprise last week when Faith's friend Noel was in the area and stopped by. The hit toy of the play date? Noel's ventilator. Y'up. The two girls got up close and personal with the machine that keeps both of them alive. I tell ya..never a dull moment...

We hope the rest of your week goes more smoothly than ours!

Brian and Jen :)


Anonymous said...

Oh Jen I am so sorry you guys have had such a hard week.I will be praying for you, Brian and Faith that she will feel better and you guys will be able to get some rest. You are in my thoughts! Love you all!

Dana said...

Thanks for your post on my blog it was exactly what I needed to hear.

Laneah also had a summer filled with sickness. I finally gave up on taking her to the ER. Why was summer so bad? No idea. Maybe we will have a mild winter though. Here's hoping :)

I too check everyone's blog daily. Love to see how everyone is doing.

Thanks again for your kind words.

Hope Faith feels better soon.

If I was starting over with Laneah I would try and tell myself to stop seeing limits for her. We just have to find a way for them to do what everyone else does or if they can't then focus on what they can. YOu're doing a wonderful job.

Ann said...

Love the picture of Faith and Noel playing with the vent -- not a picture you see every day :-) Priceless!

Ahhhh, if I could wave my wand (my pretend wand) and wish for anything, it would be that we could all at least get a good night's sleep every night. There is no worse "torture" in my book than lack of sleep.

Sending positives and healing vibes your way.


Karen said...

Dear Jen,
I am sorry to hear there is sickness in your house. How is Faith today? Are you and Brian getting it too? Nothing I can say will make it better but know you are not alone. We're feeling for you on the East Coast and praying for better days ahead. Take care,
P.S. Are you hooked up with Starlight Starbright Foundation?