Bela Girl

So sorry for the lack of updates.. We are in California for a little getaway and it has been WONDERFUL! Bel is doing so fabulous right now. This week I am at my parents house visiting while my mom is in town from Brasil, but tomorrow we're heading down to San Diego for a week at the beach. I remember when we were in for her G-tube surgery, her nurse Rhonda told us that this summer Bela would be sitting on the sand in a bathing suit having a blast at the beach... well, here we are! She's ready with her toes painted pink. :) Nothing new health wise to report.. thank goodness! She has managed to stay 'well' for an entire almost 2 months now! I am so grateful everyday for the many many prayers offered on her behalf when times weren't going as smoothly. It is wonderful to be where we are, but there is not a day that goes by that i do not remember those days.. They make days like today so sweet.

Last week Bela got an 'everything looks great, see you in six weeks' from her dr. The echo showed her aortic pressure down to 10! That's a great number for Bela. Her valves are still leaking, so the consensus is that we may have to do an earlier Fontan than originally planned to fix that problem. They'll have to do the Fontan work plus some work on the valve at her next surgery. But everything is looking great leading up to that, and her heart will tell us when it is ready for more work. Driving home I physically took deep sighs of relief. I wonder if the worry and nerves that I feel leading up to an appointment will ever lessen! As I drove home I couldn't stop thinking about how strong and fragile my little girl is all at the same time. She continues to amaze us. She is full of energy and loves life. The mickey button has been the best thing for her, I can't believe I even stressed about what to do! There has not been one second that I have second guessed...

There's a tribute to Bela on themeanestmom.blogspot.com today.. Thank you to whatever wonderful person thought I deserved to be nomitated! The meanest mom is a popular mom blog, and she is tributing moms for the month of May. I was honored to be included! And excited about the give-a-ways! I thought I'd post about it bc I love what she wrote about my little one.. I am back and LOVED every minute of my trip.. I have to get us ready to leave for a dr. apt. soon but I will post about it later.. I have an apt. today and one tomorrow, then we leave for California on Thursday for my best friends wedding! So hopefully I will have that time later.. :)

Sorry for the lack of posts.. It's been an eventful week! So after her confirmed ear infection on Thursday last week, her fever still didn't subside until the next morning. Then Friday we noticed a little bit of what looked like a rash show up on her forehead. Bela sometimes gets blotchy on her forehead so I didn't think too much of it. Saturday tho, it started going down onto her cheeks and neck. By Sunday it was all over her chest, tummy, and back. I called Beth and we figured out she had Roseola, on top of her ear infection! My poor baby! The rash is an indicator that the worst is over though, and by Monday most of the rash was gone and she was feeling SO much better. Tuesday she was almsot back to her sweet little self. Ahhh, so glad to have that over with! Today I took her in to have her repeat Echo done... and guess what?! She decided to surprise us all again and have a good echo! Her pressure measurement was around 40 last week (crossing the safe mark) an...

I took Bela in this morning after a long and kinda scary night. She was burning up all night, even with Motrin she was at 103 for awhile. She was breathing kinda funny too. Found out a couple things today.. First, not surprising, she's got another nasty ear infection, pus and everything. Poor thing. Not sure if the one she had a month ago ever really cleared up, or if this is a new one. We think something else viral might be going on also for her to be soo sick. She slept the whole way there, most of the apt, the whole way back, and didn't wake up until about 4. When she got up her fever was 104.8. She's back down and it's 5:00. It just freaks me out. But we got her started on another antibiotic (ugh), and hopefully it'll do the trick and get her feeling better. Second, and kinda surprising, they saw some heart issues. Her aortic arch was more narrowed today creating more pressure on her right ventricle (her only one) to pump the blood through it and out t...

Yesterday Bela got sick..When she gets sick it hits her so fast and she gets REALLY sick. She just can't even stay awake, she has a fever, and she wont eat.. NOT good. Now I'm playing the should I take her in or let her rest game.. will she get better on her own if she just gets lots of sleep? Or does she need to be seen? I never know.. Today she woke up pretty much the same, she has no energy, just wants to be held and keeps falling in and out of sleep. Ugh.. I get so nervous when she's like this.. I hope it goes away SOON!