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.
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.
Comments
~~Heart Hugs~~
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
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.
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
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