Bela Girl

Today has been great! No problems, no real scares. The feel in our room has changed substantially since yesterday. I feel like things are going in the right direction and we're close to having our Bela back. She is much less of a marshmellow today and much more Bela today. I can see her little expressions in her face that I have missed. She held onto my finger today and squeezed it tight...I got so excited and told the nurse, she squeezed my finger, she squeezed my finger!! She probably thought I was a little wierd, but it was the greatest! She'd been sooo sedated, and they have been letting her be a lot more awake today. She been able to stay calm today being less sedated, so she must be feeling a little better. It's a good sign for going towards getting off the ventilator too. She's been brought down on her ventilator settings some today and has tolerated it great. She got her chest tubes pulled today becuase her draining has stopped. I was glad to see the...

The day has improved, in that Bela has been able to maintain her sats and heartrate all day, but she is still not ready to be pushed at all towards doing more of the workload by herself and getting the breating tube out. We are just glad she's been stable for so long, but I'm hoping to see some progress made towards getting that tube out. THere is only so much progress that can be made in her overall recovery and in how she feels with the tube still in. Once it comes out so much more healing can take place and she'll feel so much better. She is peeing well still and getting more fluid off her, she's not quite so puffy, but getting the tube out is what will really get most of the fluid off. It's been a pretty quite day which is just great with us! I never again want to go through something like we went through last night. I've never felt that way in my life, I can't even begin to explain what that felt like. I was overwhelmingly scared and helpless and ...

Dad here. A hard night is probably not a proper title and Avery doesn't really want to re-live last night so I am going to attempt to explain the constant fragile state of little Bela's life. At about 11:00 pm Bela's O2 sats were dropping into the 60s and suddenly her heart rate dropped below the 100s, so Nicole, Bela's nurse began assessing. Within 30 seconds her sats dropped into the 20s and heart rate in the low 40s as well. By then, things were in crisis mode, doctors and nurses scrambling all over. Bela's nurse was manually giving Bela breathes as she was fighting against her respirator. Bela was completely Blue and lifeless. As Avery cried explaining this all to me over the phone just after happening, she said that she thought that was it and that Bela was gone. One of the ICU docs was standing over Bela prepared to shock her heart and bring her back, but just as she was about to shock, Bela's heart rate began to rise and her sats as well. Within ...

Well...she did really well for awhile on a little less sedation. Just a little while ago she woke up some more and started really moving and it sent her sats down a little so they drugged her up some more. She is making progress though and doing great, we could not ask her to do anything more than she is doing. Today she is 6 months old. What a journey this has been.. I plan to save these blog entries for her later to read and so I wanted to write specifically to her for a minute.... Happy 6 month birthday, little miracle. You are incredible. You've given us more joy in these 6 months than I could ever tell you. I have learned and grown so much from you. You teach me about patience, strength, endurance, hope, love, compassion, gratitude and so much more. You make everyone around you want to be better and live better lives. I lack the words sometimes to tell you what you mean to me, what you do to my heart. Mommy loves you and I am so proud of you, my little angel. Look at wh...

They are going to attempt to let Bela 'wake up' a bit to see how she reacts to being less sedated. She's been complelety out all day just to let her get some rest, but they want to see how she'll do coming out of it a little. Both times she's been a little less sedated she's had a very hard time, so please pray that she does okay this time. If she does, we can move forward some. She's starting to move her little feet and I have to say I love it!! She looks a little less puffy too, and they're actually going to come off her diaretic a little now. Way to go Bela!

Today has been a little up and down. We were woken up around 4:30 because Bela was having a little crisis. Her heart rate should be in the 120's or so and it was about 210 for awhile. No one knew what was going on or why it was so high. That's the worst part. They gave her a drug that stops the heart for just a second, in hopes that it will start beating again right away with a better, slower rythm. They had the pacer wires all ready to start her heart again for her if it didn't start back up on it's own but thankfully it did. It jumped right back up however to the low 200's. The tension in the room was thick, or maybe I was just so nervous that's how it felt. We're not sure what is provoking these scary periods for her. Her heart rate has slowly been making its way down all day today, right now it is about 140, so the rest of the day has been much better. At one point a few hours ago her saturations came down again, not as low as yesterday, but they ha...

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...