Monday, August 15, 2011

Many looks of Lucy

Sorry to be a "Debbie Downer", wah wah. But this post pretty much is.

This is Lucy with a pig nose. It only lasted an hour or so.

But this is cute right?

Then they changed it to this dinosaur look. I particularly hate this one but it stays on the best. See the white strap under her eye, well it's super tight and often slips into her eye. She hates it.

I never took a before picture, and it's a good thing. Two weeks ago her chin and neck were super blistered. They think it's from her being in the O.R. for so long.

Daddy holding Lucy for the first time in 12 days.

This has been a rough week. We got a bill for an enormous amount of money from the hospital the girls were born at. ( Yes, more than a year later.) It should have been covered by our insurance but because of a silly mistake we made they are denying coverage. Awesome.
Lucy has been acting super depressed. She's coming off a lot of the drugs so she's a lot more aware of what's going on. She's really mad at Chuck and me. When I held her today she wouldn't look at me. She kept whacking me away. It really is the worst feeling in the world when you no longer are able to comfort your child and they are so miserable. With every surgery Lucy has had respiratory problems coming off the ventilator. Every four hours a respiratory therapist comes into Lucy's room, whacks her on the chest and back for 10 mins or so, sticks a tube through Lucy's nostril and down her throat and suctions. It's horrible. My dad was there Saturday night and brought him to tears.
The surgeon left the day after Lucy's surgery and didn't get back until today. So we've kind of been waiting in the dark. We didn't learn a whole lot. We've been waiting for news about Lucy's next surgery. The surgery would require going through her side, through the ribs and lungs to get to her right collateral. Then they would tie that collateral into her Right pulmonary artery. The MRI results show that there is narrowing in the artery in two places. This would means the odds of this being a worthwhile surgery go way down. If we do the surgery it could mean a lot of maintenance in the future with lots of cardiac caths. Chuck and I both feel pretty good about admitting defeat. We don't want to put Lucy through more useless surgeries. If we don't do anything I think it will mean decreased lung function for the rest of her life. I'm not exactly sure what it will do to her heart. No one is deciding anything quite yet. Lucy will have another cardiac cath in maybe a month or so. They'll figure out how much oxygenated blood is going to her lungs without that collateral. We'll have more to make a decision from there. They'll also be stenting her left pulmonary artery and hoping that it helps get more blood through.
People tell me all the time that this must be a lot harder on me than on Lucy. I understand why they do. But truly it's harder on her. Lucy, you get all the credit my dear. You are a much stronger woman than me.


Katie said...

You're both fighters. Just reading this brings me to tears. I need to come up again to see you both. Big Hugs!

Meesh said...

I hate that therapist... seriously.

Anaise said...

I'm sorry. I'm sorry for all of these hard things. Your very understatedness is a testimony to the true unspeakableness of the situation.

I'm still praying. For Lucy. For all of you.

DizzyLizzy said...

My heart goes out to you and your family. I know a tiny bit what it is like to live at PCMC for a part of your baby's life. Everyday seems like 12 years or more.

Thank you for your courage and strength and for inspiring so many with your thoughts and experience. You are in our prayers.
P.S. I know we don't know each other, but I used to live next door to Carlie. You have a wonderful family!!!

Jacqueline said...

Our prayers are with you! Poor Lucy and poor mom and dad. I am sorry she is mad at you! Poor little thing. Your photos are beautiful. May you all be blessed as you go through this ordeal!

Tom/Tabitha said...

Just know you all have our prayers, here, too. And hugs! Keep on letting us know what is happening!

Christin Foscarini said...

Lucy is a fighter! Love you guys!