Thursday, August 28, 2008

Pictures and update

Here is my view of my babydoll as I type this. Not really how you want to see your baby..



Has it really only been one day?
Sorry to make you wait, but what a day it has been! A couple times now I've wanted to steal some of Bela's calming meds for myself. I asked the nurse to order a constant drip for me too, but she wouldn't. :)
So, her night went pretty good with no major happenings. She woke up a few times very mad, but was able to get settled with her drug of choice, Adavan. It's her happy drug..most of the other ones don't really touch her. Anyway, everytime it was almost time for the next dose she'd wake up with a vengeance, thrashing around and super mad. It is extremely hard to watch. I can't even imagine what goes through her head when she starts to wake up or how she feels. I don't want to. It rips my heart in two. She tried to cry but can't because of the breathing tube, but the tears still flow from her eyes. I try and calm her by talking to her and touching her but she seems to react so much to my voice and so I don't want to get her even more worked up. She must wonder why I'm here and I'm not doing anything about the way she feels. So when she gets agitated, they have been able to give her more meds and she usually calms back down. But just a few hours ago she started getting really mad again. We gave her meds and the nurse changed her position. For some reason she did NOT like that. She didn't tolerate the change in position at all. Her oxygen sats were getting low as well as her pressures. She turned beet red, and was working very hard against the ventilator to breathe. She was not letting it do the work for her, she was fighting it like crazy which was wierd with all the sedation she had been given. Then just about an hour ago her sats drops in seconds to the 40's. It was one of those moments when the world stops and you can't remember to breathe. My body was flooded with fear. There were a bunch of people in here trying to figure out what was going on. They gave her manual breathes with the bag, but she was still fighting those. They got her sats to come back up though when they gave her very heavy sedation and she finally calmed down. She is back to resting and is stabalized again. Just another day in the life of little Bela right?!
This morning we were working towards getting the breathing tube out, now she's back on full support and the weaning is being held off. Doesn't really even look like it'll be out by tomorrow at this point, but Bela will tell us. They like to get the tube out as early as possible after the Glenn because they have so much pressure built up in their heads from increased blood flow to the head and the tube can add to that pressure. So needless to say I was excited to be going towards getting it out. But I know better than to get excited about things... You have to put your emotions in check and take everything minute by minute. The ICU floor right now is craziness...there has been WAY too much happening. When your daughter is critical, you want everything to be calm so that she gets more attention, but it seems that 3/4s of the floor is critical right now.
So for now she is resting and I'm so grateful for that. She's now 24 hours out of surgery...HORRAY!

Since I havn't posted pictures in awhile, here's some from the last couple of weeks til today.
Here's Bela on the day of her Cath, before it obviously..

And here's after her cath. She slept for awhile, then watched some TV..:


This is Bel the day before surgery, my beauty:



This is after they got the IV in and the bloodwork...She was exhausted and drifted off to sleep with her IV sock hand.

And here's yesterdays pics, immediatley post op:


These are from today, she's a little more puffy today, but she still looks really good for what she went through, I think.



27 comments:

AL and ALI said...

she looks great avery! what a strong little girl. praying for a peaceful night. thanks for the update. call if there is anything we can do

S & K said...

What a day. I'm SO glad you posted though, I've wanted to know how she was doing so badly today. I'm proud of her for still fighting and amazing us all. I hope the night will be a little LESS eventful as will tomorrow. Good luck with everything. Let me know what I can do.

Carolyn said...

Wow Avery! you are such a strong and amazing mother. Even i feel like i'm counting down the hours until you get to cuddle that sweet girl and love her without all the madness. I can't even imagine the helplessness you feel in trying to comfort her when she can't be held. You are truly inspiring parents in the face of such a trial. We are wishing you all the best...as always!

The Ridgway Family said...

I am so glad they got her stabilized again. I know all too well how scary and tense those moments can be. I think that Bela looks fabulous considering what her surgery entailed and I don't think she looks that swollen at all.

Try to stay as calm as you can and try to get your rest. You will need it and she is in the absolute best hands possible right now.

We love you, Keisa

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

I'm so glad that they were able to stabilize her and let her rest. Your right, she will tell you when it is time to take the vent out. In our household, we call that "Lindsay" time because she would tell us if something was happening too soon. Oh Bela, we are so proud of you and making your mommy and daddy love you on an even deeper level than before...if that is possible right? Stay strong and Bela will too. Praying for an uneventful next 24 hours. Keep taking things minute by minute. I think that is the best way otherwise you drive yourself crazy! Will be checking again later!
Love, Suzie

Amanda said...

Thank you for posting. I've been checking all day to see how things have been going. Please know that you all are still in my prayers.

La said...

hooray for pictures. she is too cute in that one with the little skirt. and she looks really good post op. i almost like her puffy face, reminds me of charlie! i hope you manage some sleep tonight. big hugs from us.

Jennifer said...

What an incredibly stressful 24 hours you and Tanner have had...Thank you for the update. Your family continues in our thoughts and prayers. I will call you when I get back in town next week. Keep fighting Bela!

Lily's Mama! said...

I LOVED the pics, she is getting so big...she looks so well. I cried as I read what happend...the memories flooded back even though I tried to supress them. I could hear the moniters and the alarms, and the rush of nurses and doctors flying into the room. The stopping of the heart, the catch of the breath, and at that moment in time, you almost want to fall to the floor and start praying but you are to imobilzed by fear.

She is truly a fighter Avery...and just think of it as, when she wakes up mad, that she is thinking, I want this all behind me so I can go home with my mommy and daddy and my brother...because even though she cant string all that together...you know that is what she wants. She wants normality, just like you do.

Give her a kiss for me...we are praying, like always. I told Lily before bed tonight that her friend Bela is doing well and to rest easy...she gave me a smile and rolled over.

I miss talking to you, I hope you are trying to get some rest. I will talk with you soon.

Heart Hugs,
Jenna and Lily

Erin said...

It was good to get an update tonight and see some beautiful pics of your sweet Bela. I have to say she looks much better than I thought she would after such a huge surgery. I am glad that they have been able to get her stabilized and back to some comfort level...I guess there is one good thing about heavy drugs. We have been praying hard for her and hope that she makes a very speedy recovery. She is such a fighter and there is no doubt she is going to battle through this and come out on top...but look who she has for a mom! Anyway, I will try and call you on your cell tomorrow and chat for just a sec. Sherrine and I want to help where we can and we have some fun ideas. I hope your night is uneventful and Bela rests peacefully. Take care and try and get some much needed rest yourself.

Kara said...

You are amazing Avery. And Bela is so beautiful. I, like many others, am watching your progress. She is lucky to have such a loving, intelligent and capable mother. You are very inspiring. There are so many rooting for you both.

Jennae Porter said...

Tanner - It's Matt. I'm officially blog-stalking you now.

Ryan and Chelsea said...

Hi, I hope you don't mind me commenting. I don't think you know me. My family is new in the ward, but we have been hearing a lot about you and little Bela. Looking at these pictures of your sweet baby girl brings tears to my eyes. It must be a very special spirit that is chosen to go through such trials at such a young age. Please know that you are in our prayers.

Heather said...

Hi Avery,
It's been more than twelve years since the last time I saw you, with your little head band on, walking down the hill from your parents house into the Warnick's backyard to see Wendy. The last time I saw you, your family was about to leave for South America. And now you're this amazing mother to two precious kids. I've been following your blog since Bela was born. She is a little fighter and it's clear she gets her strength from her mommy. You and your family will be in our thoughts and prayers. - Heather Sutton (Sarah's friend from high school)

Sally said...

I'm so gad everything got stabilized...modern meds...wow. She really does look amazing for all that she has gone through. I just cry thinking of you and seeing her like this, but it will soon be better and so will she...if Bens wants to come play or have a sleepover this weekend let me know. He had fun and is such a good little guy. I love him!

The Silly Nilly Family said...

Those pictures just take my breath away. She is a real princess, and strong fighter. The crazy thing for all that medical equipment, which is an overwhelming amount, her little calm spirit just shines right through in the pictures. Do you know what I mean? Bless your heart Avery. Bella blessed to have such a wonderful mom and dad.

Andrea said...

Thanks for the update. She is so amazing. Hang in there and know that we are still praying for all of you. That picture of her holding her hands together is too cute.

Branton Family said...

Oh Avery. . .I know this time is so difficult. I am not a fan of the "40's" either and I remember that roller coaster ride. Please know our prayers are with you. Hang in there. . .this time will pass even though it seems it will never end. Love, Amy

Godoy said...

What a day! And what a strong girl!!! Maybe she don't understand what's going on, but I'm sure she feels your love for her! I'm a thousand miles far from you and I can feel your love for Her just for reading this post... You are a great mother Avery, congratulations!

I'm praying for Bela and I keep her in my mind every day.

Love ya,
Godoy

Dana said...

I am so happy to read your post and hear that she is doing okay and is such a fighter!!! Those photos of her pre-op are adorable - and for what she went through during her surgery she looks amazing. I hope she has a great day today and the breathing tube can come out soon. Here's to hoping today is very uneventful. Lots of love to the Milne family!!!

camillian said...

Those pictures are so sad to see but it's so good to know that she is still holding on strong. She is really determined to make it through this! Way to go again Bela!

Dallas and Krista said...

oh what strong girls you are. This overwhelms me, I cannot imagine what you must feel. We love you so much.

Katie said...

Hang in there...those first few days after surgery are incredibly stressful on the mama! Bela has shown that she's a very tough little girl and she'll get through this. Praying for her up here in Washington!
Love,
Katie (Maddie's mom, HRHS buddy)

Wendy said...

She looks really good and she's getting so big. She looks so adorable in her pink onesie. I can't believe how calm she looks, but I guess she's pretty medicated. I totally would have asked for the meds too is it were me...too bad they wouldn't give you any:) One day down!!!

John and Shelly Hyde said...

Oh man! We are still praying for you guys. She is so beautiful... tubes and tape and sock hands and all.

Amanda said...

just read the entire blog--danny mentioned to mark at breakfast the other day that the big surgery day was coming up. we've been thinking of your sweet family. glad everything seems to be going well! and keep posting; we love checking in. =) love to all...

Perley Family said...

Avery,
She is so beautiful and so strong. I am so glad that she is recovering nicely. I think you and Tanner are amazing parents and have such a great outlook. You are truly inspiring. We will keep your family in our thoughts and prayers.
Love,
Kris (Daly) Perley