Thursday, February 19, 2009
Thank you to all of you who have been worrying about Bela lately... I havn't even posted about her last apt yet just because things have been so busy. My mom was visiting last week from Brazil and it was so good to spend time with her. Anyway, the echo last week showed no change, not any worse, but not any better. So we're not really sure why the sudden increase in leakage, and the medication didn't seem to make much difference. They decided not to do a cath right now however, but if the leaking gets even a tiny bit worse they'll have to do one. So we're just watching it now..
Getting an echo and watching elmo
My big girl getting her blood pressure taken...It is her least favorite thing at her appointments.
We've scheduled a consultation with the surgeon that will place Bela's G-tube for March 3rd, so hopefully that actual procedure will follow shortly. Bela now claws at her face to get the NG tube out at night...she wakes up with big nail marks on her cheeks. I feel like I am extremely close to my breaking point with it right now because I know how much it is bothering/hurting her. It seems like all the sudden she doesn't want anything to do with it anymore. This is going to be a long month for us all until it is out for good. She has really regressed the last two weeks with eating. We had her tube out for a few days to give her nose a break and those days were spent force feeding her all day, only to get about half of what she needs down her. Needless to say she had lost a little weight at her appointment. I think since those days of forcing her to eat more than she wanted to she is really not wanting to eat anything now. The only thing she likes are little finger foods that melt quickly in her mouth..
All in all though, she is doing terrific. Every heart baby is so unique and comes with their own set of challenges. I get so caught up in the frusteration of a baby that refuses to eat (and believe me it's frusterating!), but I need to remember and acknowledge the miracles that we've seen in getting her to where we are at... There is a sweet baby girl named Gracie that is a month younger than Bela that is having a very hard time right now. She's in the hosptial waiting for a new heart. If any baby has had challenges and miracles during her little life, it is Gracie. Her story is faith promoting and inspiring.. She needs another miracle!
Just to let you know.. We will be participating in a heart walk for the American Heart Association on Sat. Feb. 28th (Bela's birthday since she dosn't actually have a birthday this year), and we'd love for anyone who'd like to walk with us to join us! We'll be walking with all the other babies from St. Joe's and honoring them for their fight against congenital heart defects.