Thursday, January 7, 2010

waiting for good news

Update:
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?

11 comments:

Victoria said...

Oh Avery, that is agonizing:( praying for you right now. There is no worse feeling than knowing something feels wrong. We love you and your family and will keep you in our prayers.

The Simmons Family said...

Avery.. I've been thinking about Bela alot lately. I don't know why, but I've been checking your blog waiting an update, almost daily. I pray things are okay and that it's just a darn bug she's trying to fight off. I know exactly what you are feeling when you say that they are so mature. My heart breaks when I am holding Owen down whispering "it's going to be okay!" when I know darn well how bad it stinks.

Know that we are praying and thinking of you. Keep me posted.

Andrea

S and K said...

Thank heavens heart failure is ruled out! I wish the apt. could have given you more insight as to what is bringing her down. I'm praying that this will go away quickly. She might just be worn out from just being so darn cute and amazing and she's just waiting for a second wind!! ....right? :) I think it’s safe to say that Bela is my hero too! She has such a pull to her, she just draws you in and you love her instantly, she is most assuredly one special daughter of our Heavenly Father.
And as always my hat is off to you for the way you just tackle it day by day, ups and downs, I really can't fathom how you do it (other than you are completely amazing in your own right!)...and NO you do not complain...and I think you have the RIGHT to do some, heck I complain WAY more than you and for really nothing! You know how they say trials make you stronger...just imagine what Bela will accomplish with all this 'strength' she's gained in under 2 years!!!!

Lindsay said...

Well I'm glad that by the time I read this you had already heard from Beth or I'd be freaking out with you! It's so crazy with these kids how you just never know...virus, just tired, growth spurt or heart failure? Man the stress! I hope she gets feeling better soon though so that you don't have to worry about her so much! You really are strong and amazing!

Sally said...

Oh Ave...I am so sorry you have been going through this. I am glad that all these tests can reassure you. I hope she continues to act more normal! Let us know if you need any help with anything.

Clare said...

Hi I came across your blog via the heartheroeslist blog and I like the red "heartMom" badge you have on yours...wondering if you know who made it and if it would be OK to repost it? thanks!

sending good thoughts for Bela!

Evie's Story said...

Avery
There is no medical reassurance for that motherly intuition - I KNOW! Praying they get to the bottom and find something treatable. Praising the Lord it was not heart failure (we've sat waiting for those numbers to come back before too - maddening!!)

Lots of people checking in on the princess and praying! Keep us updated!

Amanda said...

Hi Avery, Sister Fish here. Seriously Avery, you need essential oils. I know they may not cure Bela, but they will give you so much relief for fighting off the little things like flus and colds and bacteria. As far as kids go, the best thing about them is they are kid-friendly. My little girl loves having the oils rubbed on her feet or on her tummy. They are all natural and truly are a gift of the earth. I've talked to your mom about it, and she's a believer. I know you'll love them. If you want, I'll send you some. There are some that have even been used for heart patients. My email address is amandajpew@yahoo.com. If you want me to send you some and more info, email me your address and I'll get some to you. I'd love to hear how you enjoy them with your family. Let me know. I think about you and your family often. You are very strong, and you and your family are an inspiration to me. Thank you!

The Silly Nilly Family said...

What a sweet girl. If experience is what earns wisdom, she is certainly wise. She has experienced so so much. More than I could ever image going through myself.

emcghee said...

Thanks for the update, talk to you soon.

Anonymous said...

What a great resource!