Wednesday, April 29, 2009

Much Better!

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) and today it was back down to 26! Back in the safe zone! So no cath in the very near future. Hopefully it was just bc her body was so sick that her heart was in overload. Her dr. sorta just shrugged his shoulders when he gave me the news.. I think they were surprised. I was totally prepared for bad news and a cath date.. so it was great news! The Bela roller coaster ride continues.. I hope we can keep her healthy and hospital free for a long time!
I had a trip with girlfriends planned this weekend, but I wasn't sure if I was going to be able to go because of possible heart issues, but looks like I'm going! I leave tomorrow a.m., and I'm so excited! I know I'll worry (of course) and I'll miss my little munchkins, but I know it will be so nice to have a break.. Hopfully Tanner will survive.. :)
bye for now!

Thursday, April 23, 2009

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 to the body. The narrowing also is causing both her valves to have worse leakage. It's now crossed the 'safe' mark, so a cath seems to be in the near future to balloon open the narrowing. First though, we'll redo the echo again on Wednesday to make sure the numbers weren't affected by her high fever, but sounds like either way a cath is going to be necessary soon. Not the worst news, but I was just hoping things with her heart would be the same and not worse. It always stinks to get any 'worse' news. It's kinda like getting a kick back into reality, and it just bring all the feelings of being so scared for her back to the surface. Her recent symptoms could be caused by the extra workload on her heart right now .. Because blood flow is restricted to the body right now, her lungs are getting an excess of fluid and so she's pretty congested. She also hasn't wanted to eat at all since the last time I posted. She sort of just stopped one day... a red flag somethings up.

But she'll get better, her drs will know what she needs, we'll do it, and move on. She's so darn sweet when she's sick. I could hold her all day long and let her sleep on me.. I have so much empathy for her, and also so much respect. She's been 'healthy' such a short amount of her life, yet she's such a trooper through it all. When she is feeling her best, she just shines. What a priviledge it is to be her mom.
I miss this girl..

Hopefully she'll be back soon.

Wednesday, April 22, 2009

Sick again..

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!

Wednesday, April 15, 2009

sweetie gwirl

As Benson so lovingly calls his sister..

April has been a wonderful month. My birthday was at the end of March and although it began with a trip to the Urgent Care at 2 a.m., it was so much better than last year. Last year I was worried sick about my sweet little girl and her life. I didn't know if my days were numbered with her, what her future held.. I was stressed beyond belief having just brought her home, but realizing really quick that something was still very not right with her, and she was admitted again a few days later. It was such a crazy time, and I thought about that a lot on my birthday. It was the best gift for me to see how far she's come, and to have the overall feeling of the day be so different. The urgent care visit after she screamed for 3 hours turned out to just be an ear infection. Thank goodness. It's amazing to just get that news, something so normal as an ear infection. We'll take it!

This month she learned how to pull up on everything.. everytime I go into her room to get her in the morning when she wakes up or after her nap she's standing up, waiting for me. It's so cute!! She is scooching across the room, cruising along the furniture, and wants to walk (with my help) constantly. She's so miniature it's almost funny to see..

We havn't had a cardiology apt. in about a month, but last check up went well. Her endocrinology apt. was monday and he was very pleased with her 16 lb 10 ounce little frame. At least she's still following her own curve, however off the charts that may be.

She is eating so much better lately.. It's still not by any means her favorite thing to do, but she is taking in orally more and more every week. She eats anywhere from 1-4 baby foods a day, depending on the day, and loves to munch on little finger foods. Her problem is quantity..she will take a few bites of everything and anything, but just dosn't want to eat a whole lot of anything. So I let her eat what she wants, then we just put the rest right into her tummy. SOmetimes it's almost the whole feed, and sometimes it's just a tiny bit of food. She drinks about 5-8 ounces a day, so we're still having to give her most of her liquid through the tube. It's great progress tho, it's been amazing to see her improve so quickly. I always knew that darn tube was the problem. I can clearly see now that it hurt her to swallow. I am SO glad we went ahead with the mickey button. It has changed EVERYTHING around here. Not only is Bela so much happier, but there is a different feeling in our home.. no more stress or crying over eating or reinserting it. I knew things would be different, but I didn't know how much better it would really be.

Some pics from Easter Sunday.. She only lasted the first hour as usual, but at least we got to put her in her dress!

Bela and her buddy Mark at the St. Joe's 'heart picnic' in pheonix..

Happy Spring!