Improvement!

I guess I was just frustrated when I was writing my last post...she was actually doing very well considering everything she has been through, and to latch on at all was great news for her. I guess I was expecting her to take right to it because that's how it was with Benson. He never had a single problem which I'm realizing now is definatley not the norm. We actually did much better today. She had one 13 minute feeding!! The last 3 feedings they havn't been giving her any supplemental tube feedings. She was actually throwing up during her tube feedings so they determined she was probably getting too much in her tummy, so she was getting more from me than they thought. She seems content after each nursing and goes about 3-3 1/2 hours in between so she is obviously getting enough. We'll see tomorrow morning when she is weighed in again if she is getting enough though. I'm really hoping for a good number so I can continue to nurse her. She has been improving each feeding and I could not be happier or more proud of her. She's doing so well.
We've been given a tentative discharge day of next Monday or Tuesday!!! It's soo exciting but scary at the same time. I just got a little training on how to insert and feed her through her nose tube should we have to go home with it. I'll continue to get more trainings for how to take care of her and signs to watch for over the next week. It's so comforting having her here with nurses at her bedside all the time when things happen. It's very scary to think of having her all by myself. But having her home will be so wonderful. Today Benson said "should we take baby bela home today?". He's been really interested in her lately. He wants to know about everything that's on her and we try and come up with ways to explain what everything is to a 2 year old. To him she just has lots of stickers and bandaids and he thinks it's pretty cool. They also told us that they're going to try and hold off on having the second operation until she's closer to 6 months if all goes well with her heart until then. I'm glad that she can wait that long and be that much stronger. The cardiologist that saw her today said that with her size and anatomy she just would not have made it through the Norwood. I just know that it was a blessing from heaven that she was able to receive the Hybrid. It's the first one they've ever performed here for HLHS, and the first one ever performed for a baby with Turners and HLHS, so she is making history. We've been contacted by public relations and they are trying to get news releases out about her story and the success of the hybrid procedure. We're all about getting the news out if it helps anyone else learn about it that would benefit from it. It has been lifesaving for Bela and we are so grateful for it.
I'm gonna try to get some shut eye now...hopefully we'll get some more good feeding in tonight. It's worth it to stay here and get about 2-3 hours of sleep if we do. :)

Comments

Meggan said…
Good luck Avery! I'm sending good latch on vibes your way now.
Anonymous said…
Such good news!! I bet that is so neat to be able to nurse your little sweetie. She truly is a miracle baby.
So wonderful that Bela will be coming home! I'm so glad to hear that you are able to nurse. I hope things continue to improve each day. She is an amazing little girl!
Yay! Good job Bela Boo! I'm excited to see Benson today! Have a great day!
milenab said…
Hey Avery!

Do you remember me? I was Sister da Silva and your parents were my president mission...I am glad I found you! I am from Curitiba but I got married to a american (he is not from our mission :0) and now live in Hawaii! I saw your parents here last year...I love them so much, I remember you being a girl and now you are a mom! Good luck with your baby girl, she is adorable! Take a look at my website and maybe you will remember who I am :0) My email address is milenabarlow@yahoo.com and my website is www.thebarlows.multiply.com I have two little girls and I am expecting my first boy in May! I am so happy and I LOVE to be a mom! Have a great day and be in touch! Love, Milena Barlow (Sister da Silva :0)
Wow! Way to go Bela! Nursing can just be so hard for the little tinys sometimes- I'm so glad that she is learning!

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