Wednesday, October 27, 2010

Down again...

Cute Profile
Lily wasn't transferred today. I was bummed. It turns out it was because some doc up at Primary's didn't want to deal with a transfer patient on his last day on service. Great. So anyway, hopefully we will transfer to PCMC tomorrow afternoon.
The day didn't get any better. Lily wouldn't eat for me and ended up getting most of her food by tube today. She also got bumped up on her oxygen quite a bit, "graduating" to a whole different meter. Sigh. It was a rough day. Lily was very tired.
Dr. Day the cardiologist called me tonight which I thought was awesome. I have been so impressed by our great doctors and nurses; hopefully that continues. He was just calling to check on how I was doing, how Lily did today, and asked if she looked like Charlotte. (no.) It was comforting and gave me a little hope that once we get up to PCMC we will discover some miracle solution to her heart and lung issues and she'll be ready to come home as healthy and vigorous as any eight pounder would be. I know it's unlikely and I recognize that Lily has been sliding in the wrong direction for a couple days now, which is not encouraging. I'm not saying we are giving up hope but at the same time we are beginning to realize Lily is not doing as wonderfully as we had originally thought, and we have to accept that Lily's hold on life is tenuous.
If we don't get to bring Lily home it's going to be hard but we know she will always be our daughter and part of our family. We can't blame her for wanting to be with her big sister in a much easier and better place. If she's done all she needed to do here, who are we to demand she stay and suffer? Life is rough. Life is painful. If she leaves us soon we can know we did all we could for her and she made the decisions I was so terrified to make.
Be Still my Soul, the hour is hastening on
when we shall be forever with the Lord.
When disappointment, grief and fear are gone
Sorrow forgot, Love's purest joys restored
Be Still my Soul, when change and tears are past
All Safe and Blessed we shall meet at last.

9 comments:

kristen said...

We are thinking about you guys lots! We love you and you are in our prayers. I will bring dinner soon I promise! (this time more suckers for Ella too) :)

MFA Mama said...

Well, poop. Not the update I was hoping to see :(

I hope sweet Lily bounces back and is able to join her sisters at home. I know that technically they're dysmorphic features, but I think her eyes are just beautiful (my youngest has "dysmorphic facial features" and I guess I have a soft spot for sweet babies with wide-set eyes).

ANewKindOfPerfect said...

What a gorgeous profile. Sweet girl ... I hope that she gets transferred safely and they can figure out how to help her be the best she can be.

TMI Tara said...

I'm so sorry you're having to face these kinds of days, these types of decisions, this awful discouragement. We continue to pray for you and Lily and hope you can have the desires of your heart.

katherine said...

gotta love those comforting hymns. those words seem so fitting and perfect (even though it doesn't make it easier!).

you are so awesome to continue to update all of us. love you, erin, zar and girls!!

Anonymous said...

Thinking of you all with love.

Carolyn H.

Michelle said...

Sending prayers! Nothing but positive prayers :)

{ Bethany } said...

*hug*

asplashofsunshine said...

She is gorgeous! I am a first timer to your blog, and am so glad I did.