Sunday, December 14, 2008

Happy Girl

It's been awhile since I've updated on how Bela is doing. It's so nice for me as a heart mommy to read up on the progress of other little ones to realize 1)I'm not alone and 2)she's doing some 'normal' things (for a heart baby).
I can say (with a huge smile on my face) that Bela is doing BETTER THAN EVER, and life is getting so much easier.

Things that have changed since last update:
--Her entire life, I had to feed her every hour..it was the only way she'd keep down more of her food. It's all I did, finish one feed, start another. Over the last couple of months I have slowly increased her amount and have gotten her up to 5 ounces at one time!! It's changed my life! So now I just feed her 5 or 6 times a day over a half an hour and it's amazing.. I have so much time back!
--She still dosn't want anything to do with drinking her liquids, no bottle or sippy cup can get near her lips. I'm coming to grips that she will have the NG for awhile and most likely a G-tube. I'm not sure what to do about it and her lack of eating has been pretty frusterating. I'm hoping and praying that soon she'll decide eating is not so bad.
--She is however, starting to take more bites of baby food. Three days ago was the first time she actually opened up her mouth, choosing to eat. Three times a day I'd put her in her chair for what usually was a VERY frusterating 15 minutes and try everything I could to get a few bites down her. She just did not want to eat. But halleluja, every now and then she will open up for bites, usually just a few and then she's done, but that is a GREAT start! I've learned too that pears and sweet potatoes are all she likes. Bananas are NOT okay with her. She is also starting to eat little finger foods, yogurt melts being her favorite. That was actually the first thing she ever ate. I am SO happy (happy dosn't do it justice) about this progress. I'm hopeful she'll keep eating more and more..
--She's rolling all around and ALMOST sitting. She'll sit for seconds, sometimes up to a minute but still toples over most of the time. She still dosn't love tummy time by any means and usually just rolls right onto her back. So the crawling thing is not really coming along at all. The problem is I get about 3 minutes of floor time out of her before she's crying to be picked up again. I'm the weakest of the weak when it comes to hearing my babies cry and so I give in and pick her up every time. She is the happiest in my arms and MY arms only. This month she decided that no one else is good enough to hold her, not even her daddy who used to be her most favorite. So if she is not sleeping, she's in my arms. Not the best for learning to crawl, (or for my back) but I have to admit I enjoy the favoritism, and I LOVE to hold her..
--Because of her favoritism, it is impossible for therapists to work with her. we are starting feeding therapy this week and I'm gearing up for a disaster. She dosn't like other people very much, especially people who try to make her work. Her home therapy was not working so I actually asked for a new therapists hoping that might help. We'll see..
--Perhaps the most welcomed change...I'm not sure if everyone knows the severity of her reflux.. She threw up every single day of her life about 4-8 times a day, it was a rare thing if she did not throw up a feeding. About 4 weeks ago she just stopped. It was that quick. I don't know what did it, but I am sure glad for whatever it was. That more than anything else has changed life around here. I was so tired of watching her throw up, forcefully, and then scream in pain after.
--We were asked to participate in the St. Joe's Miracle Tour last month and were asked to share Bela's story. After her cardiologist introduced us and explained from the medical side of things how bad the odds against Bela making it looked, we got to show her off and share our little miracle with everyone.. I think it was one of those things that touched us way more than anyone else that was there. Revisiting some of what we went through humbled me. The Lord has truely blessed our family this year.


We were able to make it to California to spend time with me family and it was wonderful...the highlight for me was just the fact that she was 'healthy' enough to be on a trip.. I kept thinking about that the whole time and marveling that she was. I don't know why, but I still have so many memories and flash backs (maybe because this time of year last year was sooo awful) of doctor after doctor telling us that her prognosis was not good. Don't expect to have her long, if at all. I guess I'll remember that her whole life, and its a good thing because it reminds me constantly what a miracle we've been blessed with. I was very emotional at my parents ward when we were home because so many people came up to me so excited to finally meet Bela, the baby they prayed for. Everytime someone tells me they pray for Bela I seriously get a lump in my throat. Someone I admire so much told me that it was an honor for her to have been able to be near such a noble spirit. I was very touched by that. It was a great trip.. We even made it to the beach and Disneyland. Bela was an angel the whole trip, I would have to say she did better than her big brother..:)

I hope everyone is having a very merry Christmas time..

Maybe next year she'll like Santa a little better..

22 comments:

The Simmons Family said...

HORRAY FOR BELA!! I am so happy that she's eating SOMETHING and she's not refluxing!! Things are starting to move forward and pretty soon, she won't need the tubes (at least that's what I tell myself).

I'm so happy that you got to California and had a great time... you deserved it!

Hopefully things will get better from here, Bela is doing so well!!

I am so excited for you Avery!

HAPPY HOLIDAYS!!
Andrea

Dana said...

I am so excited that Bela is doing so well and that life for you is getting a little easier. I am so happy for you that you were able to go visit your family in Cali and see the beach and Disneyland!!!!! I hope Bela starts eating for you - and HOORAY for no more reflux!!! I miss you guys! Hope you have a very Merry Christmas!!!

Matt and Stacey said...

Cute Pictures! She looks GREAT! Hope you guys have a wonderful Christmas as a family. Take care of yourselves and we will see you soon.
Love Ya,
Stacey and Addie

The Ridgway Family said...

Avery, Bela looks so fabulous. I am so happy for you and what a miracle she is. Can you believe what a year this has been and I have a hard time thinking that it will almost be a full year since they were born. I pray that you have many more Merry Christmas's with your Bela girl.

I know what you mean about the flashbacks as I have them quite a bit and they will even wake me up at night. I think that too will get better over time. I have learned that time really is a master healer.

I hope you have a very happy and healthy 2009. You and your little family definitely deserve it!

Love, Keisa

Evie's Story said...

what a beautiful new picture of her. Oh, those EYES!! Encouraging for me too to read another mom's journey with a baby that just doest fit the mold.....and thats OK!! what special girls they are. She is absolutely beautiful and we keep her in our prayers!

Camille Gould said...

I love that Bela is doing so great! She is a miracle and she is so beatufiul and precious!! Benson is a little sweetheart too!

ashley said...

sooooo good to hear! glad you guys got to go to california too, i am sure you needed a vacation!

merry christmas!

The Silly Nilly Family said...

I so love that she is crying on Santa's lap!!! lol!!! that is so great!!
I'm glad she's still improving.
I don't know how you keep on! Bless your hearts, you are amazing.

Lily's Mama! said...

So I have to tell you...Im jealous...Bela has teeth...lily has none...she still has that toothless grin on her face.Oh well, they will be in soon enough.

I LOVE that picture of Bela on Santas lap...halrious..I have wanted to take the kids to get their pictures taken with Santa, but I am not brave enough to take Lily anywhere. Oh well, maybe next year....you know how it goes, going out, you are in fear every where you go.

I hope you have a great Christmas and we WILL have to get the girls together soon....when we are all feeling well and have time...so maybe when they are 5?

Talk with you soon.

Jenna

ps...did you ever get Bela's pump switched over to the Kangaroo? If you did..I have TONS of bags for it that I need to get rid of. If you haven't but know someone that has that type of pump, let me know. I dont want to throw them away, but at the same time I don't need them anymore!

Matt and Jennae Porter said...

Even though you told me all of this stuff on Friday night it still made me cry to read it. I can't wait to see her in person one of these days. It was SO GREAT to see you guys this past weekend! We are so glad that you came! Bela is amazing and you must feel so honored to be her mommy. What a special little lady. Merry Christmas to all of you!

Doreen said...

She's beautiful. I'm so glad she's doing so well. One of my friends just lost her little daughter, she had HRHS. It's encouraging to know that among all the tears, there are also little miracles happening. :o)

Likes Chocolate said...

Roman had the same reaction to Santa. We are so glad she is doing better. Wishing you a very Merry Christmas and all the best to come in 2009!!!

Andrea said...

She is so beautiful! So glad things are going well. Have a wonderful Christmas!!

Heidi Ainge said...

Hi Milne Family. This is Heidi Farnsworth Ainge. I think Tanner might remember. Anyway, I just stumbled upon your blog through Billy and Christy's and I have been sitting here crying for the last hour while reading about Bela's journey. I just had to tell you amazing people that just being able to get a glimpse of what you have been through humbles me and really does put the important things in perspective. I love being reminded that nothing but your family and the Lord matter. I hope you are well and I am glad to see that Bela is going strong.

lundgrenville said...

This was a very touching post to witness the miraculous progress that Little Bela has made. She sure has a sweet and tender spirit that is amazing. Its been a spiritually uplifting journey for us to follow your story, to pray in your behalf...and to love Bela as if she were our own...
Children have Christ like spirits and as a result...we all desire to magnitize ourselves to them....as mentioned before...what an honor!

Marshall, Nany and Max said...

Hi Avery, this is Marshall Manley. Just wanted you to know that I look at your blog often and pray for your little girl. Also, I am in Brazil right now with my wife, about 10 min from your parents house. We are going over there sunday night to hang out and catch up. Hope all is well. Happy new year.

emcghee said...

Everybody has got to have one of those--a picture of their kid screaming on Santa's lap. Yet another awful but wonderful thing.

Michele said...

So many of your comments sound EXACTLY like Gracie. She will only take a few bites of food and then she is DONE. She also DOES NOT like her therapists. It is really becoming a joke at this point. The minute they walk in and start to hold her or do something to her, she cries basically until they leave. These little stinkers!! They are a lot smarter than everybody thinks. If I have learned anything through this process it is that just when I think eveything is hopeless, I try to refocus and realize that our babies just take a very, very long time to progress with even the smallest things. YAY for no more reflux!! That is HUGE progress!! Only moms who have watched their babies wretch, throw up and scream in pain can understand what an absolute miracle that is for her to stop throwing up. Way to go Bela!!

Victoria said...

So happy that you guys are doing so well. Whenever I need a shot of miracle, I come over and read your blog. Yay for Bela, but even more, yay for your whole family. I hope 2009 is an amazingly wonderful year for you all!

Rich and Shelly said...

Thank you for sharing your story with me! Her story is truely amazing and inspiring! She is so lucky to have such wonderful and strong parents! I hope that I can have the strength that you have this next year! I will keep you updated on Baby London! I'm glad to see that Bela is doing so well!

Lindsay Dean said...

YEAH Bela! What a wonderful thing to not have to clean up puke!! ha ha I am so happy that she suddenly stopped and will pray that she start to like her baby food more. Maybe it will just take a little time like the vomiting did. Who knows! These girls ARE truly amazing and blessings from God that were given to us. I am convinced that we were chosen for a reason and that just may be why I am a better person today for it. We learn so much from our heart babies and one of the things is that the word HOPE has a whole new meaning now. Love to you my friend and kiss Bela for me!
Love, Suzie

Carmen said...

Every! Ela esta uma gracinha... muito bonitinha e com um sorriso lindissimo... E muito bom ver essas fotos dela tao feliz, mas com ums pais assim como voces, ela so pode estar feliz...
abracos a todos...
Carmen