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.

13 comments:

Sally said...

Your posts always make me cry. She is so sweet and the whole experience is so close to God. I'm so glad that she will get a less extensive surgery. She will have time to get stronger. That is so great that Benson got to touch her little hands.

Krista said...

Oh, such good news for Bela. Look at how much her brother loves her already. Beautiful. xo

Jolley Family said...

Good luck with everything, we are thinking about you guys and praying for little Bela.

Erin said...

We were happy to hear the news of how well Bela is doing...she is definitely a fighter. She is just a peanut and looks like she already has her big brother watching over her. We continue to pray for your family and know the Lord will sustain you. Our thoughts are with you for tomorrow.

Jennifer Gardner said...

Thank you so much for sharing your updates with all of us who love you and are praying for your family. I will treasure my visit with you yesterday and my first meeting with Bela -- What a little angel. I still get teary-eyed as I think about her reaction to her Mommy's voice. There is no doubt that she knows who you are and that you love her. Hang in there...The Lord is watching over you and sweet Bela.

The Joslyn Family said...

Ave-Thanks so much for keeping us informed. I check everyday to see how Bela is doing. Such sweet pictures with her and Benson. Good luck on friday, Bela will continue to be in our thoughts and prayers.

Trevor and Kimmie said...

I just cried through your whole post! She is sweet! You are doing great, Avery. So strong and full of faith. We love you and you are all in our prayers.

Trent Perley said...

Hi Avery, this is Kris (Daly) Perley, I'm not sure if you remember me or not. I found your blog through Shannon Davis' and I had heard about all what was going on with you from my mom. I just want you to know that we are praying for you and little Bela. I cannot even imagine what you are going through.

Our son Tyler was born premature and he was in the NICU for 2 weeks. It felt like FOREVER before we were able to hold him, and that was even with all of his wires, breathing tube, feeding tube, etc. So I can understand what you were feeling there. But I know that you guys have a long road ahead. Bela is such a beautiful baby and she has already proven that she is a fighter. I can really tell what an amazing girl you are by the words you write. Bela is very blessed to have such wonderful parents. Stay strong and know that there are so many people thinking about you and praying for you!
Love,
Kris

Ryan and Holly Gibb said...

What a sweetie. I, too, always cry when I read your posts. I love the pictures of your cute family together. I bet it was the best to finally hold your little angel. You are so positive and faithful and that is such a strength to all of us. Give Bela our love.

Tanner, Avery, and Benson Milne said...

You're so good Girtie! Talk about "angels"! mom

cait&brig said...

i love seeing your mom call you "girtie"- one of my favorite nicknames! she's right, you are an angel...in every way. Keep up the positivity, sounds like she's alot like you! We'll be praying extra hard tomorrow!

Lindsay Brummer said...

We love you guys and are praying for your family. She is so beautiful.

The Sola's said...

Our thoughts and prayers are with you and your family.I've asked my friends and family to pray for you guys as well. Bela is so beautiful and God has a plan for her precious life. He will be holding her and keeping her strong through this whole thing.