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.
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.
Comments
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
Love, Suzie
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
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)
I'm praying for Bela and I keep her in my mind every day.
Love ya,
Godoy
Love,
Katie (Maddie's mom, HRHS buddy)
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