Bela Girl

We know that many of you have worried from not hearing from us, we are sorry. For a least a week, we didn't post because there wasn't much of an update other than enduring out time at the hospital and wondering why we were still there. The good news from all of the waiting and lack of posts is that Bela is now HOME! Brining her home felt like it was the first time all over again. I can't begin to tell you how nice it is to be home together. We know that we are home because of the prayers and faith of all of you. As for the last two days, Bela seems like a normal baby; happy, calm, content, not much throwing up, sleeping regularly, and through the night. It is almost too good to be true. I am sure I am leaving out so many details, but we wanted to make sure everyone knows we are home and so far so good. We will now take advantage of our time at home together not knowing when we return to our favorite vacation spot, ST. JOES!

I spent about 7 hours today at the hospital with both my kids by myself... Pretty sure I won't be doing that again anytime soon. It wasn't too bad for the first 6, but the last hour Benson was absolutley done with anything to do with the hospital, but Bela wasn't too sure she was ready for us to leave. She was wide awake and sorta fussy. She looked starving, so I asked the nurse if she could start her feeds early. Then I waited and waited some more. And then some more. I contemplated nursing but didn't want her to get too much all at once so I didn't. Meanwhile Benson is ripping off his shirt because he got a quarter sized wet spot from his juice on it and yelling 'get this off me mommy!' at the top of his lungs. So I take it off and he starts pulling on my legs saying I wanna go home, I wanna go home about 50 times. All the while I'm still waiting for her to bring the food in for Bela who was getting madder my the minute. Finally 15 minutes AFTER...

I broke the promise that said I'd post Sunday...but then again, Tanner promised that and not me! I'm starting to learn that I shouldn't make any promises these days because most of them time I can't keep them.. This life is crazy crazy. And some more crazy. But we're doing it somehow, day by day. It's hard to not get caught up in the day to day struggles or difficulties. But I can't. I have to keep the big picture in my head at all times. I am constantly following other journeys of babies born with congenital heart defects and it is very very difficult to read the update that no mother or father ever wants to have to write, but so many do. That their sweet baby couldn't fight any longer...it got too hard and it was their time to go back to heaven. I just heard of the passing of another baby today, and yet another who was just given a couple months more to live. Bela's sweet little friend Eden is undergoing a nine hour surgery to attempt to ...

We have had no internet connection at the hospital this week so sorry for the week delay without posting. Overall pretty uneventful week for Bela and that is all we can ask for. She is still scheduled to go into the cath lab on Thursday to get a real picture of what is going on with her heart and if there are any additional threates that are not being see with the ecco-cardiograms. She is on continual feeds and is back to gaining weight slowly. If I remember right, she was 8 lbs 4 oz when they weighed her this morning. The main goal, aside from keeping her heart working, is to gain weight and get her prepared for the next surgery. We have learned that we can never expect or rely on a schedule at the hospital and have to take it a day at a time, but for now we are anticipating the surgery in 6-8 weeks. At this point we are not absolutely certain that we can bring Bela home before the next surgery and only the cath on Thursday will determine the schedule for the next month or so. ...

It has been several weeks since my last post and I feel like I am past due. I wanted to start with a specific yet general thank you. We want to thank you from the bottom of our hearts, for the meals, the drop bys with treats, watching our Benson Guy, mowing our lawn, helping Avery with Bela, the list goes on and on and I am sure there are so many random acts of kindness that I didn't even know took place. If time permitted, you would all receive a peronal thank you card for everything you have done. We just want you to know that nothing you all have done for us, has gone unnoticed. You know who you are and what you have done and we pray that you have been blessed for your service and kindness because we have. I have had a great day by myself with Bela. Bela is my HERO. To think a week ago right now, I was standing in this same hospital room pleading with Heavenly Father to let her stay here with us as she went into heart failure. I stood and cried completely helpless consid...

I woke up today feeling very optimistic... I got to be with Benson for the morning, he played with Krew for awhile, then got to spend the rest of the day with Daddy at Tempe town lake. He's having fun, but Tanner just called and said he doesn't want to get too wet and won't go down the slide by himself. :) Sounds just like Benson! I'm so glad Benson has been able to have fun this week amongst all the craziness. I try really hard to not show the stress of all this to Benson. I do my worrying and my crying away from him. I think he is doing just fine through all this, I love that boy. So easy going and happy all the time. So about Bela, she's not letting anyone get too relaxed yet.. She is still off the breathing tube, but she's was put on a high flow nasal cannula from her normal flow yesterday because she was still having some difficulty breathing and keeping her sats up where they should be. She was still having tons of stuff pulled out of her lungs and...

Today I've been able to breathe a little deeper and I am soo grateful that. Bel's lung looked a ton better this morning, you could actually see lots of dark areas where there was no fluid at all. Just what we wanted to see. They have been clearing and suctioning out her lungs all night and all day today so she should be feeling much more comfortable now and breathing a little easier. Yeah!! They have actually taken her down quite a bit on her ventilator settings, she is now doing all her own breathing, but is still intubated so that the machine can kick in if needed. I love to see her doing some of her own work and not the machines doing all the work for her. It shows that she is more stable and getting stronger. She is so strong and so good at bouncing back from all her stumbles. I'm just so proud of her! She woke up for a little while this afternoon to say hello. She looked in my eyes and I talked to her for a few moments and it was a beautiful moment with her. I ...

My Bela is keeping everyone on their toes today... There has hardly been a few seconds when someone is not in here doing something or checking this or that. I just got back from looking at her last x-ray with her dr. and we all couldn't believe what it looked like. Her entire left lung and about half of her right lung are completley white, meaning they are completley filled up with something whether it's fluid or mucous or some other thing. It wasn't a pretty x-ray. They thought it may have collapsed, but now they are thinking that it may be pneumonia. Very scary for Bela. They just pulled some of it out of her lungs and it looked really thick. They sent it off to be cultured again to see what grows and will then try to tailor her antibiotics for what she needs. We don't know where she could've picked something like this up. Her little systems are having to work so hard to support her through this. I found out that her BNP number which basically tells how good h...

I don't really have much time to write this, but I just wanted to get a post up letting everyone know what is going on. Last night Bela went into heart failure twice. They have gotten her stabablized now. We noticed Bela was very weak yesterday, not alert, and had very bad color. She all the sudden started to looked pale and gray. We hooked her up to her pulse ox and her saturations were in the 50's. I wanted to throw up. We have never seen them go below 75. We called her cardiologist and he stayed on the phone with us as we tried to wake her up and see if her sats would come up at all. They began dropping into the 40's. They got to 38, she was completley blue. I thought I might be losing her. We hung up the phone, Tanner gave her a very quick blessing that she would make it to the hospital and got in the car. I sat in the backseat with her, held her hand and kept telling her to breathe baby, breathe. She was struggling to breathe, her notstils were flaring and ...