Friday, June 6, 2008

Survivor

I woke up today feeling very optimistic... I got to be with Benson for the morning, he played with Krew for awhile, then got to spend the rest of the day with Daddy at Tempe town lake. He's having fun, but Tanner just called and said he doesn't want to get too wet and won't go down the slide by himself. :) Sounds just like Benson! I'm so glad Benson has been able to have fun this week amongst all the craziness. I try really hard to not show the stress of all this to Benson. I do my worrying and my crying away from him. I think he is doing just fine through all this, I love that boy. So easy going and happy all the time.
So about Bela, she's not letting anyone get too relaxed yet.. She is still off the breathing tube, but she's was put on a high flow nasal cannula from her normal flow yesterday because she was still having some difficulty breathing and keeping her sats up where they should be. She was still having tons of stuff pulled out of her lungs and finally this afternoon she is starting to sound much clearer. Hopefully now after a few days of antibiotics her lungs will start to stay clear and not keep filling up. Nothing has still grown on the culture that was sent, but that dosn't necessarily mean that she doesn't have a virus, just that she doesn't have one of the viruses they can test for. So they are keeping her on antibiotics just to make sure they treat anything she may have. Her BNP number (that measures how well her heart is functioning and should be below 200) spiked again today. It was back up to 1300 this morning. Anything above 500 makes them worry, so to be above 1000 indicates a problem. Looks like she will still be going in for a cardiac catheterization to get a clearer picture of what is going on with her heart function. That will probably be the beginning of next week. Her body is slowly recovering from serious heart failure, so she is just going to need a good amount of time to get back to where she was. We've got two months or so to get her ready for her surgery and I just pray everyday that passes makes her stronger. So it was scary to hear that her number was up so high again today. I'm so glad she's here and being monitered so closely.
She's been awake a ton since her breathing tube came out. I love to see those beautiful baby blues!! It's such a good sight when I don't see them for awhile. Today she has been called 'a survivor' a few times, and 'Determined little Bela'. Makes me smile from ear to ear..:)


Bela checking out her mobile.

12 comments:

AL and ALI said...

I love these pictures, her eyes really are so pretty - so big!

Ryan and Holly Gibb said...

I love the title of this post! That's truly what Bela is. We pray for Bela everyday and will continue to do so. It's good to see her big, blue eyes in this picture. So sweet. Thanks for the updates. We love you guys!

Lily's Mama! said...

You take the good with the bad and you just pray that the good will ultimately out weigh the bad. Last night was an up and down night for us over here....Lily turned blue twice and was breathing quite rapidly for a good part of the night but finally calmed down and went to sleep...I am so on edge right now and what we are dealing with is nothing compaired with you right now, so I can only imagine what you are feeling emotionally. It was great to see you yesterday and I hope you enjoyed the CD. Hope to talk with you soon. Give precious Bela kisses for us!

~~Heart Hugs~~

Simmons Family: said...

Bela is definetly a survivor!! I am so sorry she's back in the hospital.. but she is getting better everyday! Hopefully the cath will give you some insight into what is going on with that little heart of hers!

She looks like she's content and happy in her hospital crib and DARN that sensor they always stick on their forheads... I just hated that thing!!

Continue to be strong!!

Andrea

Scott, Rebecca, Wyatt & Annabelle Butcher said...

So beautiful! Still praying...

camillian said...

She is so precious. I love the mobile that she has in the hospital, too cute...
I posted some pictures on my blog from our recent photo shoot (I hope you're ok with that...). There are several on there that you haven't seen yet!
I tried to drop off some berries (blackberries, raspberries, strawberries) for "Berry boy" Benson this evening, I'll try again tomorrow. Plus I have a CD with the pics. on it for you.

Dallas & Krista said...

What a little gal. She is the strongest little tiny- it is truly amazing. We loved having Benson today- let us know when he can play again! :)

Sally said...

I'm so glad she has a fun mobile to look at. Shes so sweet! Do you need help with bens this weekend or dinner? What days next week can I help you? Please...call me...I'm so bad and just coming and doing it!

Mom said...

Tanner and Avery,
I get on your blog all the time - but have never commented. I just want you to know that our family is thinking of and praying for you and Bela - what an inspiration you two and Bela have been to so many people. She is a beautiful little girl - certainly a little miracle. We love you guys! Janet

Erin said...

Survivor pretty much sums up Bela all right! She is definitely not a quitter...takes after her family! We sure hope she continues to improve and that you can get some answers next week as to what is going on. Our prayers are with you guys as always.

Hess Fam said...

Tanner & Avery,
I just heard about your story from Kippy. I've spent the last hour+ glued to your blog trying to read through my tears. What an amazing journey you guys have taken these past couple months. I admire your strength. I admire your testimony and faith. Thank you for sharing your beautiful story of your sweet Bela. She truly is an angel. You and your family will definitely be in my prayers.
Love,
Megan (Price) Hess

AL and ALI said...

i went to camille's blog and saw more of the pictures...they are so beautiful!