Friday, May 29, 2009

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!

19 comments:

Lily's Mama! said...

Bela is looking beautiful as always and she is getting so big. I am so glad she got the all clear for 6 weeks. Six more weeks of rest, or somewhat seeing with two kids at home, resting isn't always what you do. But resting mentally, as heart moms we don't always get many of those days.

I hope everyone else on the home front is well. With the rising temps it is hard to keep the kids cool and having fun at the same time.

Give miss Bela a hug for us.

Sending our Heart Hugs

Jenna and Lily

nicole said...

Avery, thank you for sharing those stories. I am sitting here so touched by these women in the world that are so selfless. And by you, you are such an amazing mom to your kids, they are so lucky!

I love these photos too! They are beautiful!

The Simmons Family said...

Thanks for the update Avery. Bela looks FABULOUS!!! I am so glad you wrote about the Gtube. I had to change Owen's NG last night and he screamed, for the first time ever. My heart sunk and I wanted to take him straight to the hospital today. I now think I know a little how you felt with that darn thing.

Anyway, the women that donate their milk are AMAZING!!! Incredible stories, thanks for sharing.

I was thrilled to read that you get to go six weeks without a Dr. visit and that her pressures are down. Awesome!

Bela... you amaze us!!!

Andrea

TC Jolley said...

Bela is beautiful and she looks so healthy and strong. Thanks for this post, it really touched my heart. And Avery, I admire you and your stregnth. Love always XOXOXO.

Victoria said...

Crying my eyes out over those women bringing you their milk!!! Bela is looking so incredible. Keep up the good work.
--Victoria

Stu and Angie Milne said...

What kind, strong women.. there are so many sweet people watching out for bela! we're so happy to hear that she is clear for a while. she is simply AMAZING.

looove the pictures :)

Sheri Packard said...

Sweet girl! I loved this post, it's just so HAPPY! I am so glad she is here!

The Howards said...

You dont know me I found your blog on Cason and Marie Greens blog,Marie is my sister. Your little Bela is adorable, and what a touching story, thats amazing that someone so little can go through all of that what a little trooper. She is so cute! I hope that everything goes well, so glad that she is doing ok. what a miracle. I loved reading her story and everything that has gone on. good luck!

John and Shelly Hyde said...

Avery dear. How sweet. What wonderful women you have around you. Love you and kiss that little Bela for me.

Evie's Story said...

Beautiful pictures of the princess! Love the stories of those who have come alongside and nurtured sweet Bela by giving of themselves. Beautiful stories!

emcghee said...

Ave, So glad you got good news at the Dr.s. Bel looks wonderful. I enjoyed your post. There are great people out there.

Yeates Family said...

So many people have said the same thing. I am sitting here crying over the gifts of love and nourishment that so many women have shared with you. Life is truly a gift. Thanks for sharing your with us. Wish we lived closer. Love Mickie

Barlow Ohana said...

Avery! It is awesome to see such cute pics of your Bela! She is a cutie! :0)

Kara said...

I just love how women can pull together to help each other in times of need. That is so amazing and touching!

The Silly Nilly Family said...

Amazing. I'm all teared up at the generosity of people and so grateful they did that for you and sweet Bela.

♥ Michele ♥ said...

Bela looks so good. She is lucky to have you as a mom. Keep up the good work!

caitlin wilson said...

i can't believe how big and beautiful bela is! love all her bows too--such a sweet girlie girl. love you!

Dallas and Krista said...

This makes me weep. Mothers are amazing... there is no limit of love for a mother, even when it comes to a perfect strangers baby. Xo.

Vanessa said...

What a beautiful and encouraging story to read today. That all of those women gave milk to Bela (and that you were able to accept their gift) is just outstanding! From someone who lost a baby at birth I can tell you that it would have been a healing thing to have been able to do (donate breastmilk), so I am so glad that it is happening! bless all of you.