Bela Girl

Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how...

It's been wonderful to be home.. It's just crazy to me that we are done with the Fontan. I can't say how amazing it feels to say that. It's hard to describe what it's like to wonder and worry and speculate and dread a surgery for 4 years. I had no idea what to expect since she was so little with her previous surgeries. And I can't believe 8 days later we were home. Done. It's DONE! Feels soooooo good. The last few days have been a little rough for Bela. She is restless and uncomfortable most of the time. It's just going to take time. It's hard to be patient for her to come back to me because she was just too good before... I have to remind myself that it's only been 10 days. I just miss her. She wants to be held and dosn't want to walk too much. She isn't sleeping too great either. She threw up a couple times yesterday but didn't throw up today at all. I think she just needs to get all the drugs out of her system. She ...

What a difference a day makes.. especially around here. She got her IV fluid turned off because we are feeding her through her Gtube now and she is keeping it all down. That was the last line that was connected so we were able to get rid of her IV pole and lines and pumps. This just makes it SO much easier for her to be mobile. Huge! This morning about 10:00 the neuro doctor came in to tell us that her EEG looked perfect. Absolutely no sign of a stroke and no seizures. Yes yes yes yes yes! and a wahoo too! Can I even express the relief? She is still not using her left arm or hand, but he tested her arm for reflexes and hers were great. He believes it is nerve damage and she just has to regain full function through therapy. We've done that before, we can do that again. I know she'll be just fine, digging in the sand in no time. She got her 'hat' off and all 50 probes that were on her head and we were able to go for another walk. She walked twice as far today....

My dearest Bela-- I was amazed by you when you were a baby. I've been amazing by you your entire life. But right now I've never been more amazed. I keep reading these words from the talk The Atonement Covers All Pain, " I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones." This describes you so well. How many times I have wished that I could take this all from you. I try to stay strong when your eyes are looking into mine. When you fall asleep, I cry for the pain you are enduring, and the fear I see in your eyes. Even if someone comes in just to say hi, you do not take your eyes off them, with a nervous look wondering what they will do to you. You are comforted by me laying by you and when you feel my hand in yours. I am grateful I can help you through this in that tiny way.. I watch you endure this with such ...

An update... It's been hard to find a minute. To catch up from the last post... She had a good night that night after she got her PICC line in and was able to drink. She rested and drank all night...20 ounces of gatorade in one shift! She didn't wake up for the day yesterday until noon. She was sweet and quiet for awhile. She had a few bites of a pancake and some fruit loops...still didn't have a big appetite, but it was nice to see her eat anything at all for the first time. We got the update that we were going to be able to pull her left chest tube! I was SO excited for her. Before getting her tube pulled. Adult patients say that is the most painful part of all. She had only been taken off sedation for a few hours and finally perked up a little bit, so I was a little disappointed they had to give her something again to pull the tube that would take her away again. They suggested a med that would give her an amnesia like response and I felt wrong about it but af...

Finally something good for Bela! Can't tell you how good it felt to be able to tell her YES when she asked for a drink! She's been back from getting her PICC line for about 2 hours and has just been drinking and drinking the last hour. She keeps saying, a little more mommy.. So sweet. She's resting very peacefully now. Sigh.. The day is over. Now we can finally feed her tomorrow and let her be aw...ake. She might even get to take a wagon ride to the playroom if she is up to it. Thank you for your comments and prayers today...I can't tell you what they meant to me. I really can't. It was the toughest day yet, and i hope the toughest day she'll have. I think she is done with vomiting and the tremors and DONE with being NPO (food witheld). I would be miserable too if I hadn't eaten or drank since sunday. All I could think of was how thirsty I feel after one day of fasting and she had gone 5 and was told she couldn't drink for hours. She was so mad she ev...

Tanner came to the hopsital from work.. it was the first time he had left her, but I called with a not so good update and he came right back. He is such a good daddy and a comfort to her. I just came back from leaving the room for the first time and took a little walk. Wow. I had lots of anxiety about this surgery and knew it was going to be tough but I had no idea. There is no way to prepare yourself to see your child suffer. And the worst part for me is being able to do nothing for her. To go into a little more detail, now that Tanner is here trying to comfort Bela, she was awake from 3:30 a.m yesterday until about midnight last night. Then she slept very horribly off and on for the next 5 or so hours. Starting at about noon yesterday she started throwing up very forcefully. She got a lot of meds to try to help her but everything seemed to just make it worse. We were told to start a sedation med at 10:30 and I kept waiting for it to kick in. By 1 or so I asked to go up beca...

I've tried a couple times to grab a minute to do an update but it never happened. Today's been long. And hard. I feel so much strength sometimes that I actually wonder how and where it's coming from. And those moments are tender for me because I KNOW exactly where it's coming from. It's certainly not coming from me. But I have moments where I feel everything. I remember this rollercoaster ride all too well... One hour they are doing fantastic and you feel on top of the world. Then the next you're watching them suffer and it overtakes you. (that was avery typing and I know many want to know how bela is doing so I am finishing the update for her) Bela had a very rough night which meant being awake for 24 hours and throwing up since about 1 pm yesterday. Of course Avery dealt with all the stressful moments and a very difficult night because as I sit here and type at the moment she is sleeping a little. I have Paul Cardall playing for Bela which she love a...

This is Tanner. Avery asked me to give an update. Bela had a good day overall. She woke up a few times and asked for water. She sat up for about 2.5 hours which was great and stayed awake for about 30 min. She was pretty out of it but at least she is not in pain. We have had a dozen updates from the nurses, doctors, and her surgeon all of which saying that "she is doing great." Great day. We could not have asked for better. She is so amazing.

The surgery is the scary part, the post op is the hard part. What a night! The surgeon told us two things are different this time around that make it much harder... 1. she's older so she'll have to wake up sooner and will feel it more and can also tell us how she's feeling. And 2. that she could be here awhile draining fluid. We are seeing the first.. She whimpers with every breathe. Every h our or so she wakes up in intense pain and has to be given more morphine. She's got a high tolerance to pain meds. She's so uncomfortable and it is literally heart breaking. When she opens her eyes they are so pained and scared. One of us is always right there for when she wakes up a little. All I feel like I can do for her is hold her hand. Hopefully today we are going to come down on all her meds (she is still getting 6 different ones) and then we should be able to get some of her lines out and by the end of the day the goal is to have her sitting up and drinking. It'll be...

We've been back with Bela for about an hour.. I can't take my eyes off her. She's done and I can't believe it. It's so nice to be through with that part. She is resting pretty peacefully and still pretty sedated, but is beginning to stir. When she does she gets a pained look on her face. This is a very tricky period and one that is always really difficult for us to watch. She needs to wake up enough to be able to come of the breathing machine and so she will feel pain and discomfort and get really upset. Her little arms are already restrained in anticipation of her waking up. She did have a couple issues during surgery we were just told about. She had some arrhythmia issues and SVT (her heart rate was way too fast) and she needed to be paced back to a normal rhythm a few times. But since she has been back her numbers have all looked good. Praying they stay that way. I feel so bad this time around wondering what she's thinking and feeling. If she is...

Bela was in great spirits this morning. She really could not have been in better shape heading in to this surgery. The best thing we did for her was get her gtube back in. Everyone that sees her says how much more filled out she looks. She looks and acts like a different girl since December. She was talkative and happy from the moment we pulled her out of bed until they took her back. That makes ALL the difference in the world to me. I have been praying for that very specifically...that she wouldn't the least bit anxious or scared. I have tried very to hard to appear like nothing is wrong or bothering me the last few days, especially this morning. We laughed and played like it was just a regular appointment and she didn't skip a beat. They gave her versed and 10 minutes later she was completley loopy and after kisses and hugs they carried her away from us with a carefree smile on her face. It was perfect. And then I buried my face in Tanners chest and let the tears c...