Bela Girl

Thursday's cardiology visit was great! For the past year or so we've been watching a leaky valve and the pressure in her aortic arch. For a little while there they were both considered moderate/severe, and there was talk of cath and talk of early surgery (20-24 months). The last few visits is went from moderate/severe to moderate to moderate/mild, and then on Thursday, completley MILD!! Beth asked us what our secret was, and Dr. Pophal said her echo looked fabulous, better than it's ever looked. If you've ever taken your baby in with that nervous pit in your stomach then you know what hearing that feels like! I wanted to take a couple victory laps around the office! I thought there was a good chance an upcoming surgery might be tentatively scheduled for the next couple months, and the thought of having that planned was just making me sick. But Beth told us that there was no way they were going to do anything with Bela looking as good as she does. Her heart just ke...

Ethan returned home this morning.. Please, say a prayer for his family today. What a courageous and strong boy, and an incredible 6 months on earth. We will miss you buddy..

Bela came down with something again.. SIGH... Despite her hospital time, I think the thing that delays her the most is how often she is sick. I worry about it a lot.. how much can one little body, one sick little body, take? It seems like we just get a couple weeks of health in between being sick. Today will be day 3 which is usually always her worst day. She was up last night from 2 a.m until 6 a.m. I stayed up til midnight to feed her one more time because she didn't get enough calories or ounces in the day, and then at 2 am she was crying. She just wanted to be held and was okay if she wasn't put back in bed. SHe was however wheezeing a little when she breathed and she had a nasty little cough that sounds too much like croup. I could handle it until about 4 and then Tan took over. He took her downstairs and watched TV with her and at 6 he woke up to her head right up next to his, sound asleep. So sweet..:) I already had a cardiology apt. scheduled for today so we...

I want to share this.. This is part of a posting off Paul Cardall's site. A quick background on Paul: Paul was born in 1973 with a single ventricle, just like Bela. He has lived and survived longer than most. But his heart is now in failure and he is waiting for a transplant. He is married and has a daughter, Eden. If you want to be inspired and uplifted, read his blog! This post just made me appreciate the little moments I have with my family more, and I thought it might do the same for you... Our rocking chairs: In lieu of our situation I said to my wife, “Go out and by our rocking chairs. I don’t want to wait to grow old with you. I would love to sit with you on the porch today!” Lynnette brought home two beautiful chairs. The only problem is that we need a third chair for Eden. My sweet little girl is jealous and wants her own chair. She cracks me up. And so, tomorrow we’ll start looking for a third chair. The store evidently sold us the last two black rocking chairs. I...

Thank you everyone for being so nice to me!! I have the best friends in the world... I got so many kind comments after my downer post and it has really helped. I had a rough go for a few days. Well...I'll say more like a few weeks. I was just struggling with my own attitude and things were just getting to me a little more than normal. The vomiting nonstop there at the end was just what took me over the edge. After I spent and hour making it and feeding her, 10 minutes later as she's crawling on the floor, happily playing, up it all comes and all our work is wasted!! (and there's a big, stinky mess to clean up!) She didn't get any of the food I made, or calories I counted. And I am left just plain frusterated. That was how that month was going, and Benson was just being hard because he wasn't really getting too much positive attention. But... this week I just decided I didn't want to feel like that any more. I honestly was not enjoying being a mom. And...

I just heard Bela on the monitor and walked in to her room to find her gagging and retching and trying to rid her body of thick, nasty formula. For some reason, her body does not like the stuff. It was so thick she was choking on it as it came up and her poor little eyes were all red and bulging from gagging so hard. I picked her up and cleaned her off and held her little trembling body for awhile til she fell back asleep in my arms. I havn't mentioned her throwing up lately on the blog, but she still is, a lot, and I am SICK to death of watching her do it! It's so sad that it's not what she's choosing to put into her body that she's throwing up, mommy pumps it in her and how should I know when it's too much? It's sooo aweful, I feel so bad. So we went to the GI doc yesterday (a brand new doctor who had just met Bela for the first time) who told me that she wasn't growing quickly enough. She had only gained about 4 grams a day and she's suppo...

I havn't had to request prayers for one of our heart buddies in awhile, but sweet baby Ethan is having a rough time right now. He and his family need prayers. He is under our heart friends if you'd like to read about his story.

Saturday August 22 @ 3:30pm. Come have a dinner picnic on the field, run the bases, tour the dugouts, get tickets for a 2009-2010 game, professional pictures. . . ALL INCLUDED while watching the Diamondbacks and Houston Astros game live on the jumbo-tron! We are selling tickets to this event to help raise money for the Heart Center at St. Joes. The Diamondbacks foundation will donate $20,000 to the Eller Heart Program at St. Joe's. Tickets are Adult $45, Children over 3 are $35. If you are interested in attending this, please let me know by Friday August 7th and I will get you tickets. Email me at averymilne@yahoo.com for more info.