Tuesday, September 16, 2008

One week home

I've had lots of worries on my mind this week. I think I had this plan in my head that after we came home from the hospital after the Glenn that things would be 100% different. But I forgot about that fun period that lasts about 2 months called recovery. Normally we're in the hopsital for all of the recovery period and then some, but this time we are definatley doing the recovering at home. Which is good, and bad. It's hard to watch her go through withdrawals. She shakes and vomits and just looks downright scared. We came down on the dose a bit and it made things worse, she has been throwing up every feed since, so we have to go back up.. It's a little discouraging since we don't get our Bela back until those meds are gone. IT's okay though, we just have to move a little bit slower. Her breathing has been very loud and it seems sometimes like she is trying so hard to breathe. Her oxygen sats have dipped into the 60's when she gets really agitated and she turns an awful color. So we took her in today and we actually had some good news. Her heart function looks great and there was no fluid around her heart or her lungs. So they are all just normal recovery things that will just have to get better over time. I was glad to hear that they are normal and expected. She will just need her time, probably about 2 months or so to be all better.

And then there are the meds!! 10 of them at 6 am, 7am, 8 am, 9am, 12pm, 4pm, 8pm, 9pm, 10pm, 12am, and 4am. Around the clock. The nurse told me today I looked tired and I said, 'have you seen her med and feeding schedule?' But her meds will slowly be weaned down and eventually she should only be on about 3 or 4.

I am so looking forward to finding some sort of normal groove to my life. We don't have to go back to see the doctor for another 3 weeks...that seems like forever!! Hopefully Bela will allow that... :)
Some things I'm looking forward to:
Finally getting around to potty training my almost 3 year old.
Being a full time resident in my home now instead of a visitor from time to time.
SHOPPING for Bela!
Holding a calling in church.
Sounder sleep, and more of it.
Weaning meds.
Getting rid of the darn, beeping pulse oximeter.
Doing another swallow study and hoping for good results to be able to start bottle feeding again.
A stronger baby with every passing day.
A lot less stress.
Seeing my friends, hopefully I still have some of those :).
Spending more time with my boys.
Less vomiting, more growing.
Going back to church with my family of four.
Doing my own grocery shopping.
Being able to go outside and not die.

Here's Bela Boo this week...I must say she is looking fabulous for 3 weeks out:










This is Benson sleeping in his "Bat suit" as he calls it. Daddy brought it home with him from work a few days ago as a surprise for Haloween and Benson hasn't taken it off since, except to wash it once. He even wants to sleep in it.



This is what happens lately when I try to take a picture of Benson:




At least I got one! I can't get over how dark Bensons eyes are and how light Bela's are. Some kids come out and look like clones of their parents, not mine!


We're so blessed and are very grateful for those blessings. I'm so humbled and touched at the comments that are left on our blog. I am so amazed at how many lives have been touched in some way by our sweet Bela. We know that the Lord is using her and this experience to teach us and to teach others about patience, love, understanding, compassion, strength, endurance, and the beauty of life, now and in the life to come. I hope that each one of you that reads this has been able to see the hand of God in all this and the love that He has for each of his children. Prayers really do get answered...
Of all the things that I know to be true, I have been most grateful to know that I have a Savior that suffered and died for me, not only for my sins, but also for the pains and sorrows of this life. Through him, I have come to learn that we can recieve strength when we seem too weak, comfort when it gets too hard, and help when our burdens just seem too heavy. I have prayed many many times for Him to take away Bela's pain and suffering because He has already felt all that for her. And each time I do, I feel so much peace that He is doing just that. How blessed I am to know that!

25 comments:

Sheri Packard said...

I love seeing a happy post! Hopefully they just keep getting better! Benson looks so cute trying to be camera-shy! Isn't it funny how kids from the same "mold" can be so different? Thanks for the uplift, I needed it today.

Becky Freestone said...

i am so happy to hear how well bella is doing. she is so adorable. she always has on the cutest little outfits. we'll keep praying for your family that she'll be able to wean off her meds.

mon2e said...

hi

I was asked to look at this blog by a friend, I don't or didn't actually know you and as I read your blog about ur Bella I became more interested, you see I had the opertunity to be a part of a great life many years ago...

I was a part of a great blessing that changed my life. a young couple had just had their second child, a baby boy and 2 weeks after birth they were tried by one of the hardest things they would ever have to endure. that sunday was a day they would never forget, their faith was put to the test after taking their two week old baby boy to the ER because he was turning blue and they didn't know why. later that day they were told that their baby was born with heart dieseas and had a 12% chance of making it through the night. my heart broke. earlier that day my self and his grandfather had given him a blessing and we were told the baby wouldn't die this day, but something kind of difficult to swallow seeing the baby lieing there with docters all around and not knowing what to do.

he was born with a transpostion of the two main arttreis. he was transported to the childrens hospital at Stanford hospital in Ca. after several hours and a team 12 docters trying to figure out the best plan of action was, they concluded that their wasn't anything they could do and gave us a 3% chance of the baby making it through the night. we were taken in to say our last goodbys...and it was the hardest thing to ever have to do....

the young couple prayed and thanked the lord for that little gift that they were able to have and enjoy even if it was for a short time and told the Lord to do his will what ever it might be...

He turned 13 this year and holds the pristhood and passes out the sacrament every sunday, he is also a Boyscout, loves to play the guitar, skateboards, paintballs and loves Football too. he has had 2 open heart surgeries, one at 3 weeks old and another at 5 weeks old, he has had numbers cath lab procidures and during both open heart surgeries he was pronounced clinkly dead and came back both times.....he was given to live to the age of 8 years old because of all the stress and damage his heart has gone through.....but he's still here and I thank the lord for every moment I have with him......

it does get better and the nights do get less stressfull...the heavy breathing idk...never really stops and till this day if I don't hear it I still get up to check on him....

You and your husband are great and if anything continue to hold on to the gosple because that's the only thing that got me through it all and still does.

this April he was going to have another surgery but because of a blessing they found no reason to... he's not out of the woods yet, but since he was born technology has come along way and were thankful for that. we are now talking of a possible heart transplant in the future and are very hopefull....

you have a grat testimony and I am very happy that ur baby is doing great, she has been in our prayers for some time now and I pray that she continues to get better. she will one day know all that you did for her and it will make ur day that much better, she will one day walk and run and even talk, its amazing to watch them grow, especially when all the odds are against them...the strongest and best were saved for these last days...

its still kinda hard to talk about it because in a way it still hurts to remember all his sufering.... My testimony grew so much when I while we went through it all and has grown so much more reading ur updats and hearing how the gosple has made a difference in your family's life. this has also helped my son to grow his own testimony of the power of prayer and mircles and to give him a glimpse of some of the things we went through with him....

I tell this story but if u didn't figure it out yet I am also Demitrie's dad and would love to meet you sometime and your family. we go to the Skyline ward in Queen Creek Az. I don't have my own blog but if u wish this is my email: tonymontuy@yahoo.com

my the Lord continue to bless you and your family

Tony

The Butcher Family said...

Bela looks amazing and so do you, Avery! Thanks for the update! Keeping you close in love & prayer~ Rebecca

Amber said...

What a beautiful family....you all captivated me until the very last paragraph....
You brought tears to my eyes...I'm so grateful He gave himself for us!
Continue to be well...as always, thank you for sharing!

Shannon said...

You all look so wonderful. It's so great to see Bela at home with her family. We're thinking of and praying for you all the time. Keep up the good work, Bela!

Andrea said...

Thank you for your sweet testimony. Bela and your family truly have taught us all many important lessons. You guys are amazing! Hope things continue to get better.

Auburn said...

You amaze me, just about as much as little Bela does!! Your family is great and we have grown by watching you all go through this experience!

Bart & Kellie Yeates said...

Bella looks great! We've been checking everyday and so far figured no news was good news right? We're so thrilled that she's been doing so well, and can't get over how blessed this little girl is! What a doll! Can't wait for the day when she's doing so well we can come visit and meet this amazing little angel. I don't leave comments very often, but want you to know we're always checking and praying for little Bella (I even used her as part of a talk in sacrament meeting on Sunday). We love all four of you!

Carrie said...

That was a great update and Bela looks so cute in her pictures. It was great to see you at the park the other night and get to chat with you. Your family is so amazing and has gone through so much! We admire you and hope each day gets a little bit better! :o)

lundgrenville said...

Avery-

I am so impressed as to your strength and courage. Its apparent that your little Bela has felt the love and prayers of others. I think this has been a remarkable experience for everyone who is involved. It always amazes me how children can bring the light of Christ out in everyone.

They sure have sweet spirits...dont they.

I know the road that lies ahead will be difficult. Its much harder not having the nurses to guide you through...especially during her struggling moments. Know that the Lord loves you and His sweet little Bela. When no one is around...your husband at work....no one there to help...remember the Lord will carry you through.

Know that you are always in my thoughts and prayers. I am always refreshed in the morning when I come to your blog (the first thing I read in the morning) I love hearing about that little Angel of yours.....her progress....her downfalls....most importantly her sweet & tender spirit. The pictures too always warm my heart. Although she isnt mine...I could just hold her...hug her...love on her...as many would do.

I know we have yet to meet...but I do want to bring you a meal....some icecream....a sonic slushie....better yet a jamba juice special....Please let me help in some way....I also have a 2year old that would love to play....I would even watch that little boy of yours...!

As my sister-in-law would say. "Your a daugther of a King"

Tonya :)

Ps. Alma 37:36-37 ( One of my favs)

lundgrenville said...

Pps. If you need anything....
www.lundgrenville@msn.com

camillian said...

Bela is so darn cute! I love seeing all the pictures. Benson is so cute too, I love that he won't take off his bat suit. Okay so now that you're home more I want to have Benson come over and play some with Ellah!!

Lily's Mama! said...

Avery, her color is WONDERFUL...she is so pink... it is such a beautiful color on her. She looks so much stronger in the pictures but yet you can see in her eyes that she isn't her self quite yet. I know how chaotic it is trying to readjust to being at home, if I lived closer by I would offer to take Benson so he could play with the boys so you could have a little break. Withdrawls are NEVER easy to watch...it breaks your heart because there is nothing that we can do to make it better other then being there with them and shedding tears with them. I have faith that she will come off of them quickly and be back to the same Bela she was before surgery...(Just with a better heart)If you need anythng and I am able to help you know I will. Oh...on that note...I have TONS of clothes if you would like them for Bela...Lily out grew a ton of clothes and I know Bela will fit in them, some are warmer and some are cooler...let me know...I will donate them otherwise. Well, I need to run, its almost time to leave for Lily's Cardi apt....sending you Heart Hugs

Sending Our Love,
Jenna and Lilyana

mae said...

Oh, my sweet angel girls -- Bela and her mommy. What did I ever do to deserve such valiant little people in my life! You are both an inspiration to me!

te amo muito,
mae

Simmons Family: said...

Bela looks so much healthier!! Wow what a little plumbing to the heart can do!! :) I pray that you have some easier months ahead. No more hospitals, no more surgeries, no more pokes! Owen is still on 9 meds and it's crappy, but I think the withdrawl was the worst!

Benson cracks me up with his squinty shut eyes in every picture.

You have been very blessed this year and I pray that the blessings continue!!

Andrea

S and K said...

What a great post, I think it may be my favorite so far. Not that all the others don't make me cry, as did this one. But this one just gives a great overview and such an amazing perspective---and Bela truly has taught me all of those things. Which is such a blessing to have been taught those truths by such an angel!!! She is incredible, what is up with the family of incredibleness (yes that is a word!;)) I feel a little inadequate! But nevertheless I'm lucky to know you and to have that example in my life. I really would like to help out a little more though......so between all of those feed and meds call me! Haha, just kidding I'll call you----and you know I don't stop until I get you...sorry to bug! Keep up the great work and keep your eye on the prize of the day with NO MEDS and MORE SLEEP!!! and the best a BIGGER HAPPIER HEALTHIER BELA!!!! WHAOOoooo for that day (may it come as quickly as possible.)

ashley said...

bella totally looks like a woff. in that third picture (i think) of her smiling profile she totally looks like your family, so there is some resemblance. so happy to hear things are getting better, you have a lot to look forward to, and i am sure it will all happen!

Anonymous said...

Still praying for you in Kansas. Life sure turns out differently than you ever imagine, doesn't it? That Bela is a muffin of deliciousness - and Benson is adorable too. (PS I now have 3 kids who look NOTHING like me in 3 different ways...in photos I look like the nanny. Again, one more small example of "not what one expects" huh?) Angela

emcghee said...

Ave, I never know quite what to say. I'm always left a little speechless after reading most of your posts. Too many feelings to put into words. I can't believe what you do. I love you so much and, like always, am in awe of you.

Branton Family said...

Tanner and Avery,
Ray and I couldn't be happier for you guys. I know it's still a struggle but you are on your way. Your kids are beautiful and look so healthy and strong. Take care of yourselves and know we are thinking of you! Amy

Wendy said...

She looks great! I love Benson's bat suit. It's awesome. I am happy to hear things are still going well at home. We keep praying for you guys. We love you!

Erin said...

So fun to see these great pics of those adorable kids! I am glad things are headed in the right direction and you are really starting on the road to recovery with your sweet little peanut!!!! Know we love ya and I will continue to check in...we still have some unfinished business for YOU missy!!! Take care and happy potty training:)

The Zemp Family said...

The strength of your family is so amazing and inspiring. Thank you for sharing your story it has greatly increased my testimony. Please call if you need ANYTHING!! I can't even imagine how tired you must be.

Jr, Suzie, Cole, Cruz, and Lindsay Dean said...

I hope no news is good news! Praying for her everyday. She looks absolutely perfect and Avery, you don't look like a sleep deprived heart mommy, that is for sure! Thanks again for sharing the beautiful photos.
Love always,
Suzie and Lindsay