Update


Thank you to all of you who have been worrying about Bela lately... I havn't even posted about her last apt yet just because things have been so busy. My mom was visiting last week from Brazil and it was so good to spend time with her. Anyway, the echo last week showed no change, not any worse, but not any better. So we're not really sure why the sudden increase in leakage, and the medication didn't seem to make much difference. They decided not to do a cath right now however, but if the leaking gets even a tiny bit worse they'll have to do one. So we're just watching it now..

Getting an echo and watching elmo

My big girl getting her blood pressure taken...It is her least favorite thing at her appointments.

We've scheduled a consultation with the surgeon that will place Bela's G-tube for March 3rd, so hopefully that actual procedure will follow shortly. Bela now claws at her face to get the NG tube out at night...she wakes up with big nail marks on her cheeks. I feel like I am extremely close to my breaking point with it right now because I know how much it is bothering/hurting her. It seems like all the sudden she doesn't want anything to do with it anymore. This is going to be a long month for us all until it is out for good. She has really regressed the last two weeks with eating. We had her tube out for a few days to give her nose a break and those days were spent force feeding her all day, only to get about half of what she needs down her. Needless to say she had lost a little weight at her appointment. I think since those days of forcing her to eat more than she wanted to she is really not wanting to eat anything now. The only thing she likes are little finger foods that melt quickly in her mouth..

All in all though, she is doing terrific. Every heart baby is so unique and comes with their own set of challenges. I get so caught up in the frusteration of a baby that refuses to eat (and believe me it's frusterating!), but I need to remember and acknowledge the miracles that we've seen in getting her to where we are at... There is a sweet baby girl named Gracie that is a month younger than Bela that is having a very hard time right now. She's in the hosptial waiting for a new heart. If any baby has had challenges and miracles during her little life, it is Gracie. Her story is faith promoting and inspiring.. She needs another miracle!

Just to let you know.. We will be participating in a heart walk for the American Heart Association on Sat. Feb. 28th (Bela's birthday since she dosn't actually have a birthday this year), and we'd love for anyone who'd like to walk with us to join us! We'll be walking with all the other babies from St. Joe's and honoring them for their fight against congenital heart defects.

Comments

Life Unscripted said…
Lily watched Elmo the other day when we were there also and was such a good girl through her whole echo. And Lily HATES to have her blood pressure taken just like Bela.

I am glad she is doing well, she looks so good. I hope the apt goes well for the G-button. I can only imagine if lily was still on the NG tube how horrible it would be to try to get it down her nose... meds are difficult enough.

Bela is further along in eating table foods then lily though, Lily will not touch anything that she has to put in her mouth like that. She will eat baby food but that is the extent of it.

I hope you guys have fun at the heart walk, we can't make it due to Lilys party being the same day, there is so much to do that day. I hope to see you at the party, Rachel Earl will be there and I would love to get pics of the girls together.

Well I need to run...Lily just woke up from her nap.

Hope to catch up with you soon
Jenna
February 19, 2009 at 5:08 PM
lundgrenville said…
Yay! For some progress...even just a bit.
She sure is a darling little girl...so cute and cuddly.
I am glad she is getting the G-button...she will have so much relief.
Our little Grayci doesnt like the snuggle hug she gets with the blood pressure cuff either..she is miserable when that is done.
Hugs & Prayers-
February 19, 2009 at 5:54 PM
The Ridgway Family said…
I sure hope they can get the G-tube placed soon. For you and Bela's sake. I can not believe at all that she will be one next week. Such a bittersweet moment for us, but I would not trade that day for a million years because then I would not have my Eden. I wish I could say that we will be walking with you on Saturday, but to tell you the truth we just are not up to it. We pray for you every day and I hope little Bela continues to be stable without any changes in her leak.

Love you all,
Keisa
February 19, 2009 at 7:06 PM
www.amiestarks.typepad.com said…
Avery,

You don't know me...my name is Amie Starks and my Cousin is Jillian Farnsworth. I've been reading your blog for awhile and we have a very similar story. Our daughter has Tetrology of Fallot with Pulmonary Atresia. She has had a G-tube since she was about a month old and we have had a very extensive GI road. Anyway, if you would like to email me I would love to chat about what you might expect with your daughters G-tube placement coming up? I'm not a Doctor and I'm sure you will be given some great advice but I just thought I would offer.

We live in Gilbert so if you would ever like to get together, you seem like such an amazing Mother - I would love to be of any help possible. Sometimes medical personnel make things a little too clinical and I remember being a little scared and wished I had someone to give me some real life training.

amie.starks@gmail.com

I won't be offended if you decline! My heart and prayers are with you!

Love,
Amie
February 19, 2009 at 7:36 PM
emcghee said…
That first picture is so cute of her. Such a bummer that she has regressed with her eating. It was so good to see you guys. I love you all.
February 19, 2009 at 7:50 PM
Sally Jensen Interiors said…
Such a great little peanut! I can't wait for you to not have to stress about food...
February 19, 2009 at 8:38 PM
Cindy said…
Hi Avery--

Your mom told me about your blog and I check in to see how you are all doing.

My daughter-in-law, Meredith, worked last year at a Montessori preschool in Phoenix where there was a little girl with similar heart situation. She had just started preschool and still did not want to eat and just use her tube. As soon as she was in a social setting with peers, she wanted to eat everything like her friends did and the tube came out and she learned to enjoy eating. I'm not sure of the exact situations, but Meredith said it was really rewarding to be a part of that progress with that little girl.

I just wanted to tell you about this and hope it gives you encouragement!

With Love,

Cindy Duffy
February 19, 2009 at 10:17 PM
likeschocolate said…
I love the little pony tail!
February 19, 2009 at 10:21 PM
♥ Michele ♥ said…
Bela looks so great! You may not notice because you are with her every day, but it seems to me that she has made wonderful progress. Sitting up, eating some food by mouth is a milestone!! Good job, keep up the good work! Thanks for mentioning our Gracie Girl. We could use all the prayers we can get!
February 19, 2009 at 10:23 PM
The Simmons Family said…
Bela looks so fantastic!! I think the GTube will make a world of difference for her. I wish we could do the walk, but too many germs for Mr. Owen... bummer.

Even though Bela has digressed with eating a little... she's still eating and that's great!!!

Andrea
February 20, 2009 at 8:24 AM
Courtney N said…
This comment has been removed by the author.
February 20, 2009 at 9:55 PM
Tiersha said…
Hey Avery. It's Tiersha Neilson (if you remember me). I just want to say that I know how this all is. I just had my second open-heart surgery in Dec. 2007 and another operation recently. I know what you are going through and I wish you and your beautiful baby girl all the luck. It does get better!!! I don't like getting my BP taken either :)
February 20, 2009 at 9:56 PM
The B Family said…
What a dollbaby! Bela has gotten so big (well, you know what I mean)! She is just precious, Avery.
We continue to keep y'all in our prayers and will be praying for everything to go well with her g-tube procedure. I think everyone will be so much happier once it's in!
Love to you~ Rebecca
February 22, 2009 at 11:59 AM
Kristine said…
Just a quick suggestion...worked for us.

I posted this on my blog...

http://leeleenews.blogspot.com/2009/02/miracle-spoon-for-non-eating-babies.html

Worked for another mom as well.
February 23, 2009 at 5:11 PM
The Silly Nilly Family said…
Hi Avery, I'm still reading all the time but I don't always comment. I'm so glad Bela is coming along! Bless your hearts! Love you guys.
March 1, 2009 at 10:12 PM
Anonymous said…
Happy Birthday to Bela. The Yeates' in Washington are cheering for you. We love the blog and are so thankful that you keep it up to date. Your entire family is in our prayers. May the Lord bless and keep you. We miss your family.
Love, Carl, Mickie and the rest.
March 2, 2009 at 1:10 PM
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