Wednesday, March 5, 2008
Lots of News..
Bela was busy today...we all were. We met today with Bela's team of cardiologists and surgeons and got lots of news. When they left we all looked at eachother and just sighed...it's so exhausting and draining to listen to doctors tell us the harsh reality of our situation and try and wrap our brains around what they are going to try to do to save our little girl. We felt that way a lot during the pregnancy, but everything hits a lot harder now that she is here. My mom and Tanner's parents were here with us and it was nice to have someone else hear everything and help us sort it all out. They are hopeful for Bela, and believe they will get her through this, but they do admit they are not exactly sure of what they will find with her. Bela is a rare little case...and no one really knows what to expect from her. Because of how high risk she is, they are actually going to perform a different surgery than they previously thought they would do. Instead of the Norwood procedure that most babies with HLHS have they are going to do a hybrid procedure, combining surgery with catheterization to make it a more milder procedure for her. It wont have to be a bypass surgery, which is A LOT easier on Bela. This will allow the Norwood procedure to be postponed until she is 3-6 months old and her body is much stronger to recover from such an invasive surgery. We may or may not be able to bring her home in between the two surgeries..we certainly hope we will be able to. It all depends on how she is doing. She may have problems with retaining fluid in her lungs in which case they'll have to put tubes in her chest to drain it. She may also deal with feeding and thriving issues. There are lots of things that could happen. 'One day at a time' has become my motto to live by through this, each day we get though is one more day with her and one more day to be grateful that she is in our lives. She is a blessing. We have a lot of hope for her and are trying to stay positive. It is helping. As I was leaving the hospital late last night, I told the nurse what I always tell the nurse when I leave, to please take good care of her for me until I got back. He told me that he would take care of her like she was his own because she is an angel from God. :) I really feel like she is getting the best care she could be getting, and that is such a blessing.
So we await Friday a bit nervously. We asked them what the best thing for us to be doing during the surgery, and they told us to try and go out and get lunch and not think about it. That sounds easy huh? Not so much, but we will get through this. They will give us updates every half hour or so. We know we are in the Lord's hands and He is in charge of things. He is not leaving us alone..we feel His peace, and I know she is precious to Him and she will be taken care of, no matter what.
I have been made aware of a fast that will take place tomorrow on behalf of Bela. I cannot tell all of you who are participating in that how much that means to us. It is extremely uplifting and encouraging to know that so many people are fasting and praying, and are behind us. We've been overloaded with love and support and cannot express enough our appreciation for it all. All the notes, emails, phone calls, visits, and things sent to the hospital, everything that everyone has been doing means so much. Thank you from the bottom of our hearts. We feel your prayers and support. It is extremely touching and we've been brought to tears many times over the love we have felt from people. THANK YOU.
Until Friday, Bela is just keeping stable, resting, and getting stronger. She is so sweet and precious and we love to talk and sing to her and hold her hand. She is doing as good as she could be doing right now. She's getting a little bit of my milk..I love it! She's tolerating it great..so far so good. Hopefully after the surgery she'll continue to tolerate it and take it from a bottle once we can get the oxygen tube out of her throat. She's beating the odds and looking better pre op than anyone expected! We are being so blessed!!
That's it for today I guess..I'll post again soon.