An update and a thank you

Last week Bela got an 'everything looks great, see you in six weeks' from her dr. The echo showed her aortic pressure down to 10! That's a great number for Bela. Her valves are still leaking, so the consensus is that we may have to do an earlier Fontan than originally planned to fix that problem. They'll have to do the Fontan work plus some work on the valve at her next surgery. But everything is looking great leading up to that, and her heart will tell us when it is ready for more work. Driving home I physically took deep sighs of relief. I wonder if the worry and nerves that I feel leading up to an appointment will ever lessen! As I drove home I couldn't stop thinking about how strong and fragile my little girl is all at the same time.




She continues to amaze us. She is full of energy and loves life. The mickey button has been the best thing for her, I can't believe I even stressed about what to do! There has not been one second that I have second guessed our desicion to get the g-tube. She is so much happier. She's still eating about the same..somedays she thinks eating is great, somedays she would rather not have one bite of anything. But it's okay now because she can just take as much time as she needs and she is learning that eating can be enjoyable and that is all that matters. She still hasn't hit the 18 llb mark, but we'll get there soon..







I havn't done this and I wanted to publicly 'spotlight' and thank a few people that have each given us a beautiful gift, a piece of themselves. As lot of you already know, there have been several people that have donated breastmilk to Bela. Because of her delicate and unique system, she tolerated breastmilk so much better than formula. When the word got out that I was running out of my own supply and didn't know what to do, there were some amazing people that stepped up and donated their own.

First, an amazing person I DIDN'T EVEN KNOW, Carrie, produced a good amount of milk and offered to donate some. She would get up in the middle of the night to pump milk and then donated that milk to us. Can you imagine? Waking up in the middle of the night a couple times to pump milk for someone else's baby you don't even really know? I had a hard time getting up at night to do that for Bela! I don't even know how to thank her.. she fed Bela for a solid 5 months of her life. It's selfless and incredible, and it got Bela through a very difficult time.

Keisa, sweetheart Eden's mommy donated all of the milk she so lovingly pumped for her baby. I can only imagine the sacrifice that was, to pump through all that she went through, and then have to give it up. Every drop was used with so much gratitude. I never got to meet Eden, but I know she is such a beautiful, perfect little girl who has touched so many people.

I received milk from several women in my ward who would pump some extra milk here and there and periodically drop it by. I always found it difficult to keep my emotions steady when someone would knock on my door with a bag of milk.. SO COOL!

Jersey's mommy Heidi shared some of her milk with Bela as well. Jersey endured so much, taught everyone while she was here, and has definatley left her mark on the world, just like Eden. THere was always a sweet spirit in her hospital room, she is such a princess!

Then there's Jessica's milk that I just recently recieved. Jessica passed away last week. She was born prematurely in February and weighed only 1 llb 10 oz. What an amzazing little girl to endure and fight so much in her lifetime!

I am so grateful to these people for what they have given us. I feel like Bela will always have a little piece of these sweet babies with her, and that she is a stronger person because of them. It has been sad for me, to accept the milk often on the same day they just sent their baby back home. Sometimes I even feel some guilt. But I hope they know how much it meant to us, and I'm grateful they chose to be so selfless at such a difficult time. Thank you!