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...

So many emotions flood through you when you're going through this... It's really overwhelming to walk back into the room and see her and all the equipment that surrounds her. I thought this time might be easier because we've done this, twice, but it's really not. This was Bel's first surgery with actual corrective work and I'm starting to realize that her first surgery was a piece of cake. But, I do have to say that everything has gone very very smooth. We've been with her now for about four hours. The first three hours were craziness, but it has settled down quite a bit and Bela is just resting very peacefully. Her blood pressures were high at first, but they are right where they should be now. Dr. Nigro, her surgeon, said that all her numbers are right where they should be at this point. He did say that the next 48 hours however will be critical. For now she looks great and we are all SO glad to have this day come to an end. We have a very good nu...

We FINALLY got an update after what seemed like FOREVER. One of the surgeons came in and said they finished the repairs, and everything 'looked good' to him. they are always very careful with the words they use, but we were happy with the report. They were able to do everything they needed to do and there were no surprises. They were happy with how things went.. There was a lot of scar tissue to get through since she has been opened twice already, so they may not be able to close her up due to swelling. I have not had to see her chest open yet and I hope I don't have to, but we'll see in the next hour or so. They had to cool the room down to slow down blood flow and preserve organ function during some of the procedure, so they are warming her body back up now. They will keep her down there for a few more hours to watch for bleeding and/or problems. I just can't wait to have her back. One of my biggest fears throughout all this was coming off the bypass mac...

Bela's chest was opened up around nine and she is now on the heart and lung bypass machine, so now the real work is beginning.. That's not much, but it's all the update we've recieved so far..

Dad here. Bela had a really calm night and was so sweet this morning. We just got back from taking her to the operating room and that is never fun, we feel calm and at peace with everything. The anethesiologist emphasized how long our day was going to be so you might see periodic posts from Avery and I just to pass the time. Thank you again for all the prayers in our behalf. And now mom... I just sat here for a couple minutes without knowing what to type... And that's just how I feel. No words really to explain the feelings, but it's a lot of emotions mixed up together. My nerves woke up with me this morning bright and early. Yesterday I was having a hard time with sending her off so 'perfect' to come back so beat up, but my mom corrected me and told me she's going off pretty beat up, and will come back more 'perfect' than she is now. At least that is the plan... So I'm trying my hardest to think that way, the postive way. This will make her ...

I'm going to attempt to make a post, but really I am so dead tired so I hope it ends up making some sense.. :) Bela hasn't been sleeping too great the last few nights.. Tanner and I are always running into people or hearing of people that say they check our blog a lot. I knew that there were lots of good people out there keeping tabs on Bela and her progress. I keep getting more and more nervous to write posts thinking of how many people might read them... We decided to install a counter on our blog to see just how many people come by to check up on her. In 5 days we've had 2200 people. WOW. At first it made me never want to write again for fear of how many people read this. :) But then it made me amazed to have so many people that care about us and what we're going through. It makes me so grateful to think of so many people supporting us and going through this whole journey with us. Today was a good day because a lot of you spent today fasting and praying for ...

Dad here. Bela has finally achieved her 5 kilo weight goal! The cardiologist said that we should celebrate, so I have booked a room at St. Joes for an indefinate period of time starting this Tuesday. They provide complementary soft drinks, with great crushed ice and terrible cafeteria dining. The surgery is on track for Wednesday. They have scheduled Bela with the surgeon's for the entire day. Needless to say Avery is a little emotional and I try and mask it by working and eating. We are now trying to prepare emotionally and spiritually for this long awaited procedure. Many of you have expressed prayers and concern thinking the surgery was this week. We know come Tuesday and Wednesday Avery and I will need the prayers as much as Bela. As many of you can imagine we look forward to this surgery because Bela's heart can not continue much longer without it, but can't stomach the unknown. We have faith in the plan of salvation and trust that whatever is supposed to ha...

I'm so proud of my little Bel. She did SO well!! Tanner was so nice to make those last two posts for me to keep everyone updated while I was at the hospital all day today with Bela. Like he said, she did wonderfully well, we saw her right after they finished and she was already extubated and sucking hard on her binky..just like always. It was so good to see her so 'normal'. I never know what she'll come back like. Everyone was so excited to see her (this was our longest stay away), and everyone kept coming in to see her and commenting on how 'huge' she is!:) The cath took about half the time they told us to expect and the findings were basically that she is in a very good position for her Glenn Procedure. They thought there was a good chance that they'd have to balloon open an area in her aorta, but they did not think that was necessary once they were in there. It was all great news. She slept a lot of the day and was sound asleep when I forced myself...

Bela's cath went as good if not better than could have been expected. All the prayers were felt today. The cardiologist was able to get into the vein much faster than planned and his findings were as good as could have been hoped for. At this point any news other than bad news, is great news, if that makes sense. For today, Bela is scheduled for surgery two weeks from today. They wanted to make sure the A-Team was all scheduled and available. We haven't gotten a full play by play of what they surgery will entail, but for today, Bela is fine. Cath went well. We are blessed. More to come.

Dad here..... Wanted to give everyone an update, or should I say not much of one. By about 1:00 pm today, they decided they would push the cath off until tomorrow. Bela is right now set for her cath at 7:30 am. We appreciate all the comments and prayers in our behalf, if you don't mind, please keep em coming. More to come following the cath.

In a couple hours we'll take Bel in for her cath...I'm trying not to, but I keep thinking that this might be our last morning at home for a long time. We've been told that it's very likely we'll just stay in the ICU until her surgery. We don't know much right now, the cath is supposed to give us some answers and direction, but the surgery will most likely be anywhere from a few days from today to 3 weeks. I can't believe it's all here already.. Please, for those of you who read this today, say a little prayer for her. Although Cath's are not a huge deal compared to what she's been through and will go through, anything for Bela can be hard on her. Thank you for your prayers, your words of comfort and support, and for following Bela's journey with us. I will update more when we know..

My sweet little Benson had his procedure done today. All went well. He was starving and nervous while we waited. He relaxed a little when the PA came out and started talking to him about going with her to pick out a balloon and eat a popcicle. After a little convicing, he decided that sounded like fun so he took her hand and walked out of the room with her. It was a different experience to watch my child 'walk' away from us to the OR instead of pushed away in a crib. I'm not really sure if he ever got the popcicle or if it's just a way to get him back there...I hope he did. Anyway, it took about an hour, the doctor came out and said 'it' (that's what we'll call it) was farther up than originally anticipated and he thought he might have to do a more serious proecdure to bring it all the way down (involving cutting veins and yadda yadda--my first thought was, OH PLEASE NO!), but he was able to bring it down far enough to keep it safely functioning. ...