It's a hard knock life

In 1 hour and 17 minutes, it will officially be 24 hours since I have seen a bed. What a long long day. As I type on the iPod now, I am not being soothed by the sounds of Ruthie sleeping or monitors beeping, but instead, I am listening to the food network and the nurses changing beds for our roommate. As if today has not been long enough, now we are in 7 West and with a roommate that apparently loves tv and loves it loud! Man oh man! I know that I am just venting because my day has not been a good one and when you have a day like that the small things seem to eat at you more than ever. Like, why couldn't we move the beds when the one year old who has been yelling all night was up. Why did we have to wait until the whole room was quiet and everyone asleep? I just don't see the logic behind waking children who need sleep and do not need medical attention. I mean really?!? But I am not giving an update, I am venting. So... Back to the important things in life, not the minor details. Like the duracell commercial I can hear at 2:52AM!!!!

So, ruthie's cath went well today. She took the sedation like a champ and even got to keep her hair up during the whole ordeal! What a treat! She came back from the lab about 4 hours after she left and honestly this time she was not as swollen. Awesome!
However, the good news stops there. Dr. Balzer, dr. Huddleson, and Dr. Goel all agree, Ruth needs a heart transplant. Her pressures are too high to do the Glenn anytime soon, so now as we try to work out those pressures (again) we will also start the process of getting Ruthie qualified for the heart transplant list.

We have a long list of labs, tests, procedures, meetings, doctors, nurses and people to get through before Ruth can even get on the list. Our first bug hurdle to cross is a lung biopsey. In order for Ruth to even continue on thus process she needs to have a lung bioposey done to determine if she has lung damage or disease. On Wednesday, Jan. 27th Ruth will go in for her lung bioposey. Fortunately we are able to get in so soon because we are using her Glenn spot on the surgery board since she won't need it. We won't have much infor on the lung bioposey until Friday because it takes a bit for all the results get in. Once again, God is teaching me that He is in control and that I must have faith. It is so hard waiting. Waiting on an answer. Waiting on a desicion.

We hope to know whether Ruth is a good candidate for a heart by next week. If the heart transplant team which includes all the doctors, therapists, social workers, etc decide that Ruth is not a good candidate (due to lung disease or liver failure or lack of developmental skills for example) then our next step is..... compassionate care. Even now writing those words seem unreal! Really, compassionate care? I haven't heard those words since before Ruths arrival. Compassionate care... knowing there is no answer, no other choice but to watch your baby pass on. I mean I can't even bring myself to say it. I don't want to make it a reality.

But here we are. We are NOT giving up. We will NOT back down! We will fight!

Please, Please, please pray for Ruthie. I just want her to have a chance to get a heart. Please Lord,
protect Ruth from harm, make her strong. Guide her doctors. Give them knowledge and wisdom. Give Ruth strength and courage. We know she is fiesty. And please give us comfort and understanding. We are not to know the Lords ways but to have faith. So let's have faith!!!

I will try to update with more medical details and photos tomorrow. There is only so much you can do with an iPod.
For tonight or this morning, this is all I can give. My mind is not here anymore but apparently learning how to make crab cakes on food network... Seriously, why does the tv have to be on?? Ah well, I will venture on and I will try to fall asleep in spite on this situation. Maybe I should pray for courage to tell these parents that constant tv is not good for a baby to be around. I mean Everyone needs quiet....

Wish me luck! I hope to sleep for a little bit!

Heart hugs!
Prayers out to Lorenzo, cameron, Jacob, Derrick and their families. Big prayers!!!

Laura