Today was a good day for Bela girl. Her doctors and surgeons are meeting tomorrow morning to discuss her situation and the exact plan for her surgery. They will most likely do the surgery on Friday. It will be the next huge hurdle for her to get past. She has been doing so well latley, but she is just being kept stable. Her real work will start once they operate on her little heart and her body must go through the hard work of recovering from bypass surgery at 1 week old. We are meeting with the genetisist tomorrow to discuss the success rate for these babies using the little data that is out there. We're a little nervous to hear what she will say to us, but have to keep positive even if the data isn't. One great news of today is that they are going to start giving her my breast milk!! THey are putting an NG tube down her nose to her tummy right now. I'm so excited to feel like I am doing something for her. It's been difficult for me to feel like I'm not doing anything for her that I would normally be able to do for my baby, so I am really happy about that.. They aren't sure if she will accept the milk though so we'll have to wait and see how it goes. We are praying that she will..
Benson stayed with us all day today at the hospital and did really well. It was so good to be with both my babies today at the same time. Tanner is with Bela tonight, and I got to come home tonight to put Bens to bed and it was soo nice to do his normal bedtime routine with him. He has been an angel through all of this. We left Bela's room to take a little walk outside today and before we left he stopped at the door and said, "We'll be right back Bela."
I feel very hopeful at times and then something will happen that brings me back down to the reality of the situation. It's constantly up and down. It's so hard to see her going through so much. I just pray my heart out that she gets strong enough over the next couple of days to be ready to take on surgery...that is all I can do.
I almost forgot...the best moment of our time with her so far was last night. Tanner and I both got to hold our sweet girl for the first time. It took three nurses to move her and all her tubes and cords, but we got to hold her each for a little while. We sang to her and she tried so hard to open her eyes and look at us. We knew she was trying to tell us she knew we were there. She is pretty sedated right now, so it's hard for her to get her eyes open, but she kept on trying and trying. It was the most response we have gotten from her yet. It was a very sweet experience for us, and one we hope to have again before Friday.
Thanks for all your comments..it means so much to us to know that there are so many people thinking and praying for her, and it really helps to get through this. I'll update again soon..

Comments

Danielle said…
You don't know me, but my sister knows you and she told me about your situation. I am due in a few weeks, so your story hits home to me- we've had a few minor concerns with this pregnancy. I just wanted you to know that you and your sweet family are in my prayers. I will pray for little Bella that she will be strengthened and blessed with health and that you and your husband will also be blessed. You have such a great attitude and are an example to me. Good luck!
La said…
i am so glad you got to hold her!!! do you have pics of that sweet moment? i am constantly thinking about you and praying of course. hopefully we can come back to phoenix soon. love love love you.
Jennifer said…
How wonderful you got to hold Bela in your arms -- something that so many mothers take for granted. I am sure that moment has been deeply engrained in your heart. You are in my prayers.
Wendy said…
Hi Ave, CONGRATULATIONS!!! I've been out of town and this was the first chance I had to check your blog. Bela is adorable!!! I am so happy that she arrived safely and is doing well with all the procedures thus far. I am so happy that you got to hold her...what a special moment for you and Tanner after all you've been through. Your story brings tears to my eyes every time I read it and your strength is amazing to me. You are continually in my prayers and I hope for all the best for your family!!! Good luck on Friday, I'll be thinking of you!!!!!
Ali said…
thats so great that you got to hold your little girl. you are right, she knows you're there.
Ani said…
I don't know you really well (our parents know eachother), but have been following your story. Your little girl is so beautiful! She and your family are in our prayers everyday.
mandy said…
I'm so happy you were able to hold her. It was a week later when I was finally able to hold Carter and I remember how special that moment was. She is so beautiful and strong-like her mom! You absolutely amaze me Avery! Thank you for being an example of faith and strength to all of us. Your family is in our prayers.
Trent and Mandy
cait said…
so glad that she is doing so well! i just cried as i read your words about holding her for the first time...so tender. keep up the good work bela- you're doing great!
TC Jolley said…
Avery, it's TC Jolley. I'm so happy for you, she is so beautiful. We are thinking and praying for you and your family. If you need help with Benson let me know, my boys would love to have him over to play. Thanks for keeping us posted.
Candice said…
Ave, Tanner and Benson~ Congratulations! We are so happy that Bella made it into this world safely. I know that she is one lucky girl to have you guys as parents. Our thoughts and prayers are with you guys. I posted something about Bella on my blog. Everything I have to write about doesn't compare to her. Her story has touched my heart deeply. Avery you seem to do doing so well, your attitude and strength is amazing. We hope nothing but the best for you and your family.
Best Wishes,
Candice and Michael
Kristen said…
I don't know you very well, we just moved in down the street from you guys. I found your blog through another in the ward. I just wanted you to know that I am praying for your sweet baby girl.
Bart and Kellie said…
Tanner & Avery,
I clicked on a blog of a friend in my ward, and then a friend of her's and they listed Tanner & Avery on their blogroll. I thought there's no way its our Tanner & Avery and it is! We've been keeping up with you through your mom and Mickie. But it's so great to see your little angel! We're so happy she's doing so well, and you're in our thoughts and prayers. It's so fun to see our family (even when we're not near you!) Hope you don't mind us checking how she's doing ! Bart & Kellie Yeates
Unknown said…
Hello,

I just wanted you to know that you are not alone. My wife and I are expecting our first child (to be induced mid-May) that also has Turners and HLHS. Both my wife and I are so happy everything is going so well for all of you and you are in our prayers.

We have recently become very good friends with the family of a adorable 5 year old girl who has the same thing as well. They have been sharing their stories and just brining us into their lives. While things do look grim there are a few of us out there that share your experiences. If you ever need to talk please contact me at jeffdrouet at gmail dot com.
The Collins said…
Congratulations Avery!! I am so happy to see that Bela is doing so well. She is GORGEOUS!! She looks so good, you would never even know all of her internal problems by looking at her. It breaks my heart to see your sweet little Bela hooked up and going through all she has to go through. I feel for you and your family too. THis is a exciting but hard time. I am sure she will be a fighter! I am so glad that your delivery went well for you and her. We will be praying for Bela and your family. I am so impressed with your positive, uplifting attitude. You're amazing. I am so glad that you got to hold her and love her in your arms. Such a special, sweet thing. We only hope the best for baby Bela! She is so sweet. Love you guys and miss you! Congratulations again!!
Oh Bela Boo...hang in there sweetie! Can I do anything yet?
Hey Ave and fam! She's such a darling little baby! You guys are troopers. I sure hope that things work out for the best with Bela! Love, your cousin Britt
Mimi said…
What an incredible little girl! Please, Please let us know if there is anything we can do to help. I'm sure you have a million people telling you that, but honestly! Good luck in the coming days, you guys are in our prayers!
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