Wednesday, September 9, 2009

Deceptively Normal

Only time to do a quick post as need to pump to get some more mama's milk for the little Miss. Right now we are still moving along. Carolena is still managing quite well on her own. We are pretty much in a holding pattern just waiting to see how Carolena will progress as she gets bigger and older.

My meeting with the cardio doctor today pretty much confirmed that we are just waiting.

Waiting.

Waiting for Carolena to have symptoms.

Which of course will scare the crap out of me. She will have a hard time breathing, will turn blue, will not want to eat, etc. I am hoping I do not have to watch her health start failing. I am hoping we have a firm plan of action by then.

Right now I am okay with waiting. Being a scheduled person I am not sure how long I will be okay with waiting but for now with waiting, we get to be at home.

Carolena likes to be home. Tonight, she is the most relaxed I have seen her in two days. Not that Pappi and her house are not fantastic but I really think Carolena already understands what is going on and she appreciates her home. I want her days at home to far outnumber her days in the hospital. I hope we are successful.

Just to add to Kevin's post...the cardio doctor said today that we are just waiting to see how Carolena progresses. We do not have any heart procedures currently scheduled. We will not have anything scheduled until Carolena needs to have a procedure, including the heart catherization. We could go one day, one week, one month or more until Carolena needs a procedure. It all depends on her right now. The one additional procedure we will be having is surgery for her malrotation. The GI doctor really wants to address this and correct with surgery sooner rather than later (of course we the okay of her cardio doctors).

So, all in all things around here are deceptively normal...definitely maybe.

3 comments:

karen said...

Praying for the deception to continue! I hope the flu-ridden boys are well enough to mix with Carolena again, too - the separation must drive you (all of you) nuts.

Laura said...

{{{hugs}}} to all of you. You are doing such a phenomenal job of caring for Carolena! She is certainly an amazing little girl and you have given her the love and security to want to be here with us. She is truly a fighter!

I am so in awe of how well you and Kevin have handled this entire situation. I admire you so much for the courage you have shown, not to say you haven't dealt with fear, but facing that fear "head on" to give your baby every chance to be as normal as possible. Ashley, you and Kevin are just heroes in my book...Carolena's heroes. I am so thankful that you have the support you need to enable you to be there for her right now.

You are still on our church prayer list. I forward info. to our minister so Carolena won't drop off anyone's list. Prayers are still going up!

♥ you all bunches!

Cherie said...

Sending you my love and prayers Ash. She is alucky to have such a strong and passionate Mama!