Monday, September 29, 2008

Slow progress..

So slow...if you blink you might miss it. But it's definaltey getting better, and we'll take every little bit of progress that comes Bela's way...
Anyway, I keep thinking I'm going to get some time here or there to write a good post on the happenings around here, but the time just never seems to come. So I'll use whatever little time I have left before Bela wakes up to write a little something. It's been a hard, sometimes very frusterating week. Bela is supposed to be getting better, but somedays it feels like she's getting worse! She still continues to throw up, about the same amount if not more than before. We took her off formula because it got to a point where she just wasn't keeping anything down and she seems to do much better with just breast milk. I add a little rice cereal to the milk since she should be eating that now. She throws up still, but seems to keep much more of it down. I feed her every hour for 15-20 minutes so it seems like its all I do! Especially when she throws it up...I get her cleaned up and do it all over again. We have seen improvements in the last few days since we made the change so I hope she can keep that up. We got her off all her medications that she was addicted to just a few days ago and I've noticed lots of improvements since then too. She still isn't sleeping very good and I'm sure it has a lot to do with the throwing up since she is never full and content. She takes maybe two 15 minute naps all day. I try soo hard to get her to sleep, then 15 minutes later something wakes her up, whether it's to throw up or because she's in some kind of pain. I hope that gets better, for all our sakes. She just likes to be held and walking around, so it gets very tiring, and by the afternoon she is just so exhausted. She is still sleeping okay at night, she does wake up and throw up sometimes, but she sleeps pretty good. We're heading in the right direction, it's just a long road...
It's still just so wonderful to have her here, although she is my drama queen and is extremely high maintenance, she is an angel and we love her to death. She has the ability to just comptletley melt your heart with her smiles..
We have our second apt. with the cardiologist tomorrow since the surgery and I hope we get all good news. I think we will...she seems to be recovering little by little. Her coloring looks much better and her breathing sounds better too. She paralyzed a vocal chord while intubated so she still sounds hoarse, but it'll come back on it's own in a few more weeks. She probably won't have gained much weight from all the throwing up, but as long as her heart function is good, all is well. We'll work on the feeding issues.
SHe's started some therapies, but they don't do much work with her yet since she is still in recovery and has some serious stranger anxiety...wonder why. HOpefully we can start speech therapy soon and get her eating even a teaspoon orally. That would be a start!
So we're doing good...in survival mode most days, but we are getting through and are being blessed along the way with some very sweet blessings. Thank you for being concerned with us, lots of people have called and asked how things are since I haven't posted. It's really hard to get around to updating when she dosn't sleep, so I'm either feeding her or holding her pacing the house... sitting does not work for her. It'll be a great day when I can sit down again..:)
Thanks for all your continued help to us...I know it's been 7 months, but we are still grateful for any help we can get!

Hey...that turned out to be a pretty lengthy post! Til next time, here's some pictures of the last couple weeks...

this is probably my favorite picture...she loves her brother..

and her brother loves her. It is so nice to not be so scared to let Benson get close to her for fear of her getting sick.

I realize there are a lot of bumbo pictures, but she is just too darn cute in that thing.. She only lasts for about 3 minutes before she decided she'd like to be held again, but it's a start..





My brother Jordan and his wife Lauren welcomed their first baby into the world last Friday. I got to be there for the birth and it was a very emotional experience for me. He is just beautiful and perfect. I was amazed the whole time at how calm everything seemed to be and I decided that I'd like to do it that way next time I deliver..:)




Benson likes to be 'just like Daddy!'


Her tiny little hands and feet... But look! Her arms are filling out a little! :) I love how she looks posed for these pics.

24 comments:

mon2e said...

It is amazing to see the hand of god......

when my son Demitrie came home from the Hospital after being there for almost two months, it was also hard, he lost two pounds while in there, and because of that they put him on a liquid fat diet for three months and no milk, except brest milk also.... we were takeing him to appointments once a week and after about three months It got better....his older sister and him did grow to be very close and she was always very gentle with him....she had just turned one and it was like she knew and understood.....she started calling him "my Petty Boy" and that has always stuck....till now.. lol.

he has definitely been a blessing in our life's...

you have a remarkable baby and with you as her parents and by her side she will be fine.......in time, watching her feel pain must kill you inside, trust me I know....but she is stronger then you know.....

I used to think that things like this only happened to people on the TLC channel or lifetime, I used to say things like this don't happen to real people....


your in our prayers,

Tony

Andrea said...

Oh Avery. I've thought of you so much lately. I can't even begin to imagine all that you are going through. We continue to pray for all of you and are glad that Bela is progressing, even if it is slowly. Hang in there and I wish I was closer so that I could help in some way. Just know that our prayers are with you!

lundgrenville said...

Oh Avery, how I longed for this post. You and your family have been in my constant thoughts and prayers.
I thought much of you while sitting at the womans broadcast Saturday night and hoped that you had the same opportunity. The meeting was so spiritually uplifting and edifying...and I thought of the many mothers who have difficult trials in their lives...I thought of you and just prayed that the Lord would carry you through. I can only imagine the difficult tasks that are minute to minute in your household.
The Lord has a special place for you and your family & sweet Bela.
Its amazing the strength and endurance you continue to share with others even in the midst of constant struggle.
The Lord loves you and that sweet little darling.
Perhaps it will be a blessing to have conference this weekend...not only for spiritual boost or rather recharge, but rather so that you can have church meetings with the entire family in the comfort of your own home. What may be something small for others...is a gift to others.
Our love and thoughts remain with you.

JJ,Kristy,Braylon and Jax said...

Hi Avery-
I Just wanted to let you know that your precious Bela and your family are in our prayers. I had my baby Jax on friday and he has been in NICU ever since which was a complete surprise. He is finally starting to recover and will be okay but it has been the hardest week of my life and I have thought about you everyday since I had him and how strong you have been though all of this with Bela and it has helped me stay strong at times I wanna just break down. You are an amazing mom and are a true inspiration to me and many others. I just wanted you to know that you helped me through a really tough time in my life. I hope Bela keeps improving. Keep up your good spirit.

Carl & Mickie Yeates said...

We are finally breathing again in Quincy. (Your new blog)We look each day for your blog and we know that you have no time to keep the masses informed. We think of you everyday in our prayers and know you are the best parents in the whole world. Just keep on "keeping on". Inch by inch you will win the race. Bela is a doll and you and Tanner are angels. Lots of Love

Ryan and Holly Gibb said...

Cute, cute pics! Such a big girl in the Bumbo! It was so great to see you guys at CPK the other night. I loved seeing Bela in person!! She's a doll and looked so good. It was fun to talk to you and Tanner. Your parents are so cute and look so young. Anyways, hope the appt. goes well for Bela.

Simmons Family: said...

Bela looks so healthy!! I love that she is so loving with Benson. The puking goes in phases... it gets better and then it gets bad again. Hopefully this is a short phase and she'll outgrow it soon! :)

I don't get the sleeping thing... Owen sleeps NON STOP...which cardiology doesn't really like. It's always something... right?

I'm glad that you are all a little more settled and HOME together!

Andrea

Lindsay Brummer said...

beautiful you guys! we love you!

Lily's Mama! said...

I didnt know she was back in the hospital. I have been watching for updates on both of you guys. I am glad Bela is making progress, even though it is slow, it is a step in the right direction.

I feel that Lily is back sliding, she is sleeping a lot again, and her breathing is really wet sounding and her lips have been turning blue a lot more often and her legs if you put your fingers on them, will leave a fingerprint for about 10secs afterwards. I am on the nervous side, I am numb mostly, having prepared myself for all the outcomes of this cath, so now it is just wait and see.

To me the waiting and seeing is the worst part. I pray for strenght daily for Lily, to get her through these days ahead, months, and even years ahead. You know the fears, they are never ending, I dont think they will ever go away...I think it will get better when they can talk and tell us things...but in the mean time, it is our judgement and our judgement alone, that catchs heart failure and near disastor.

Oh and yes....once we get home from the heart cath, a play date is a for sure thing. oh yes...I still have that breast milk, I am not sure how often you make it to St.Joes, but...if you are in the neighborhood next week on wed, I will make sure to have it with me...just give me a heads up.

Talk with you soon.

Sending our Love and Heart Hugs,
Jenna and Lilyana

The Butcher Family said...

Thanks for the update, Avery...you all are always in our prayers. Bela is the most precious little thing...and Benson has become quite the big brother! What a handsome guy!
We will pray specifically for Bela's eating/feeding to improve. She is so blessed to have you love her and care for her. She is so beautiful...and I love her little poses! She knows she's very special!
Heart hugs~ Rebecca

La said...

thank you for the post. especially the pictures. we are working on a time to come out to phoenix. we need to meet our little nephew and hang out with B & B!

Ryan & Brytten Pettit said...

We too are post Glenn and struggle with feeding, the pukeing got so bad we finally did a Nissen and G-tube and I am so glad we did. T and Bella are very close in age, so it is nice to read your blog, feel free to check us out.

Wendy said...

Hey Ave, I was happy to see your post and that Bela is progressing. She looks great for just having surgery a little while ago. I love the pictures of she and Benson...it just warms the heart. They are so cute together. I love hearing good news from you, it just makes my day. You guys are always in our prayers and thoughts. You are the best mom ever!

Danielle said...

Thanks for the update. I have been checking to see how things are going. I am so glad that she is slowly making progress- even if it is a long road.

I know how things must be rough for you right now- with your 2 little ones and all of Bela's needs- but one day you'll look back and all of this will just be a memory. Hang in there and keep doing a great job! My family will continue to pray for Bela's health and your strength and patience!

I'm sure you've read this before, but whenever I get frustrated with my kiddo's, I really enjoy reading Sister Beck's talk from Oct '07 conference- Mother's Who Know. It helps me refocus and remember the importance of our work. Just thought it might give you a little boost!

Juliana Lopes said...

Hi Avery! I dont know if you going to remember me. Im Juliana from Belo Horizonte. Marcelos wifw now. Im going to write in portuguese, i hope you understand!!! Fiquei sabendo das coisas que aconteceram com sua filhinha e me emocionei demais vendo seu Blog. Tenho orado pra que tudo dê certo, que sua filhinha melhore logo e te dê muitas alegrias. Tenho três filhos e imagino como tudo tem sido tão difícil pra vocês. Obrigada por seu exemplo de força e de amor incondicional. Espero que o Pai Celestial derrame bençãos sobre sua família. Grande beijo. Juliana

Sally said...

Oh my goodness Ave...I had no idea she was sleeping that little. Benson is coming to play at my house on Monday. I will pick him up at 10. I'll bring him back home at around 1 so he can nap. Is that ok? Do you have dinner plans on Sunday? We'll bring some at around 5:00.

Melissa said...

I've never met you, i'm just a faithful fan of your darling blog. I'm not sure if this will help but you might want to ask your doctor about alimentum formula. My niece had to go on it because she would throw up all the time too, it's kinda expensive but it's totally worth it if it helps. Hope she continues to gain weight...good luck! melissa karren

The Silly Nilly Family said...

Yeah, I am just so grateful for the amazing blessings and miracles! I love the picture also of Bela reaching out to Benson and then it's perfect that the next one is him reaching out to her. Sweet children, both so special. Thanks for sharing, I know it takes a lot of precious, valuable time to get those photo's and words down and they are golden. You're awesome Avery, your husband too. I sure love you guys.

Brittany & Barry said...

Oh, man...I know how exhausted you must be. I had a healthy baby and I remember how tired I always was.

I love the pic of Benson and Bela with his hand on her head. Cute.

Camille Gould said...

I'm so glad I got to see you guys for a few mnutes tonight. Bela looked great today and she is beautiful! I love her smiles! I would love to have Benson over to play on Tuesday morning with the other kids (all boys but Ellah so he should have fun!. And as always I'm available to help out with holding Bela or anything else that you need!

Katie said...

Avery,
I have commented before on your blog but thought I should introduce myself- I'm Katie, Maddie's mom (HRHS). My daughter is 6 mo. old and we're from Washington. I've been reading your blog for a while now. Bela is such a sweet baby and I'm happy things are getting better for you. It's amazing what she's been through- we too, are post-Glenn (2 mo.) and Maddie's just taken off since her surgery. It's nice to see her doing the "normal" baby things. I wanted to let you know that I have a friend who's grown daughter has Turners. She is in college now, such a beautiful girl and does wonderfully. If you would like to get in touch with Lisa(mom) or Kaitlyn, let me know. I have told Lisa about Bela and she'd be more than willing to visit with you. Kaitlyn truly is a remarkable young woman, she goes to BYU. I just wanted to offer that to you :) As with many of our little heart friends, I keep Bela in our prayers as well! She's sure a cutie pie. Take care-
Love,
Katie
http://allredbabygirl.blogspot.com

Evie's Story said...

Avery,
Bela looks amazing. We have been following you for months as friends of the Butchers. Annabelle and Evie were in cribs beside eachother in Charleston and they have linked us to a precious network of other heart babies. Each of my kids has a 'heart baby' now that they pray for and Tristan (my 5-year-old) refers to Bela as "his baby".
I know what a slow process of healing it is and we do pray for your sweet family in the process. She just looks like the picture of health. Thank you for sharing your story and letting others love on your baby too!
Mandy, Evie and company:-)

angie said...

This makes me so happy! Avery you are so amazing! Honestly I hope to be as good of a wife and mother as you, I know I have a lot to live up to! Bela sounds like she is doing so well! She's such a little trooper. Stu and I are coming back next weekend and I'm so excited to see her after these couple months! We'll keep praying for her little heart.. Love, Ang

Dianne said...

Thanks for checking in on Ashlyn. She has the same car seat as Bela :) You must be so exhausted. I'll pray that the progress starts picking up more quickly.