Tuesday, January 19, 2010

Baby Mine

Track number 1 on the cd that is almost always in Bela's CD player is Baby Mine, by Alison Krauss. Jenna, Lily's mom, made us the CD during Bela's second surgery. Every song on that CD does something to me when I hear them. They stir many memories for me. I sing Baby Mine to her every night as I rock her before she goes to bed. She snuggles right up to me, it is my most favorite moment of the day. Tonight was particularly tender for me as I thought about little Lily, born the same day as Bela, in a hopsital bed recovering from her 4th open heart surgery. It is amazing really, that someone so little can endure so much. My thoughts and prayers are with her and her mommy tonight.

I am extremeley grateful tonight for how blessed we've been. Bela's health has been amazing lately considering all that is against her. Sometimes it's so easy to want to believe that it's all not real, that she is a whole and healthy little girl.

When you've imagined life without your baby girl, EVERYTHING, every moment, every tear, every word, every laugh, every second is precious.

Sunday, January 10, 2010

All better!

This little girl.. she sure does know how to throw us for a loop. After 10 days of not being herself, she has totally rebounded 100%. She is back to her beautiful enegetic little self and I love it!! I missed her! I hate all the worrying. She has been so happy the last two days. Just tonight we played peekaboo and chased her all around the house as she giggled her little head off. So whatever it was, it never got too bad and went away! Horray! I just hate when the words heart failure are mentioned...they are sickening words to hear!

It's been way too long since I posted pictures of her and of Bens.. So I'm gonna go way back..

Halloween (WAY back, I know)

Bens's bday party. My little man is 4!

Some random shots of the last couple months:

And just as I was uploading some christmas pictures, my computer has decided to stop working right. I'll try again tomorrow..

Thursday, January 7, 2010

waiting for good news

Great news! No sign of heart failure.. BNP looks "beautiful" in Beth's words.. YEAH!! I honestly wasn't even worried about heart failure until it was suggested.. I'm glad that's over and it's ruled out! We're assuming its just something viral she's fighting.. life can resume..:)

It's been a rough couple of weeks with Bela. We've all been worried.. something isn't right but I can't put a finger on it. She just hasn't had that usual sparkle in her eyes or her normal bubbly personality. She's been really tired, quiet, and calm. But she never had any other symptoms. I ALMOST called her doctors several time, ALMOST wrote or texted Beth, but everytime I'd be reassured by a little spark of energy that would last for an hour or so. I just havn't been sure what was wrong. Bens was sick after christmas and I just was sure her body was just fighting something. And it could be..
I've had her into see most of her doctors this week to thouroughly check things out. Ped told me to go see cardiology (figures). GI surgeon thought her feeding tube looked very chronically inflamed and red. Her darn tube is always giving her problems. So she gave me some medicated pads and changed out her button. Told me it shouldn't be the cause of her current behavior though. Today we went to see her cardiologists. Echo looked okay, not horrible not great. Bela started out the apt. literally freaking out like I've never seen her freak out before. She was so upset at anyone that came near her that no one could get any vitals on her. She fought and screamed and kicked, puked everywhere, and then all the sudden she was comptlelty wiped out and pretty much laid like a rag doll over my shoulder for the last half of the appointment. She was half asleep on me and just limp, which is not normal for her. Shes usually halfway down the hall playing peekaboo with the nurses and techs. SO.. after I'd explained the last 2 wks to Beth she thought we should draw blood to get a BNP number, the number that tells if her heart is in failure or not. So here I sit, cell phone and house phone close by, waiting for it to ring.
As I held her down for what felt like the hundreth time as the needle was moved around in her arm trying to find her tiny little veins, I felt that same desperate feeling I always get when I'm so helpless to help her. I wish I could take it all away for her. All the pain that she dosn't understand. It is just so heartbreaking for me, there aren't words to decribe the feelings. As I've said before, she is my hero. This may sound wierd, but sometimes when she is just acting like her adorable baby self, it just dosn't even seem right. To me, she is so wise, so mature, so seasoned for her little tender age. Like she should all the sudden open her mouth and just start saying something profound and amazing. I know that probably dosn't make sense, but it's like this mature spirit is inside her little baby body. I have just learned so much from her already, been so changed by her life. It is frightening to think there could be a problem right now because I am nowhere near ready for one. But are you ever?