Saturday, June 28, 2008

We are back together.

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!

Wednesday, June 18, 2008

No cath tomorrow...

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 she was supposed to get fed in the first place she brings in some FROZEN milk to start thawing out. Normally I wouldn't be annoyed because the nurses have a lot going on at all times, but not today. Our nurse was just s-l-o-w. Anyway, it really was very nice most of the day to be with both of them. It's rare that I get to be with them both. We had a 'picnic' on the floor in Bela's room. She joined us on the floor in her bouncy seat and was loving being able to be part of the action and watch Benson do all his crazy moves. It was fun. Today was really the first day Bela took real notice to Benson and focused right on him like crazy. It's been almost a month since she was 'healthy' and at home, and up until a few days ago, she hasn't really focused on anyone. But not anymore...she is soo alert and loves to look right at people and give them huge smiles. She seems to have really realized that she's got some serious entertainment in her big brother. Benson thinks his sister is pretty neat too.. He tells most everyone that we meet, 'I have a baby Bela and she's at the hospital!' I'm sure people wonder about that, but he's pretty proud to talk about her. Everyone that comes in the room can't believe how great she looks and how far she has come. I got some great news today...she went up a good amount in weight last night, and so looking at her average weight gain over the last two weeks, she has gained an average of 40 grams a day! I know that dosn't mean much to most of you, but that is amazing weight gain for Bela!! If fact, her nurse was saying if she continued at that rate, she'd probably even have to go DOWN in calories!! As she was saying it she said, 'I can't even believe I'm saying that about Bela, but it's true!' So yeah for Bela! SHe feels and looks much heavier to me (I know, I know, she's still about the size of the average newborn, but she' growing!)
Also, Bela has most likely been bumped to Friday for her Cath. Her cardiologist (the one doing the cath) has been at a conference (on hybrid procedures :)) all week and dosn't get back til late tonight. Her ICU docs cancelled her cath for tomorrow because they think he might reevaluate doing a cath on her at all right now based on the great progress she has made. He was pretty adamant about doing one on her before he left, so chances are he won't change his mind and she'll still go on Friday, but he is going to meet with us tomorrow, assess her, and discuss it with us. So once again, change of plans with no new sure plans made. We should know more tomorrow.
Another good day and more good news. I got to dress Bela today, and actually got to take her out of her room for some walks around the was great. We were moved a couple days ago to the 'healthy' side of the unit. We've never ever been there before, so it was nice to know that we've finally been considered 'healthy' (all relative). We have spent most of our time in the complete opposite corner, so that was a welcomed change. I love days like today. You really come to appreciate days that are slow, non-painful, and are spent together, days that are sorta rare when you are blessed with a heart baby... but we'll take however many we can get and hope for many, many more!
I'm home with Benson tonight while Tan is taking the late shift tonight. Bens is about to watch his 'one show' that he gets to watch every night before going to bed, and he just came in and asked, 'mommy, do you wanna come sit next to me and get comfy?' How can I resist that?! Bye for now!

Tuesday, June 17, 2008

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 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 correct her heart as I type this and my heart goes out to them. Please remember them in your prayers tonight, as her surgery will most likely go late into the night. It's all very sobering and makes a person do lots and lots of reflecting. I didn't mean for this post to be in any way negative or depressing... in fact I hope that I can convey just the opposite feelings. I have been blessed to feel the Lord's love and know that he is aware of me, when I need to feel that. I know that He does love us, He does know us, He IS there for us ALWAYS if we ask him to be. I got to go to church on Sunday and was able to listen to a talk about being prepared when our time comes to leave this earth. He said that mortality is so fragile and that we need to always keep the big picture in mind, that all we do here and become here is ultimatley just preparing us to live forever in the eternities. I know that all these babies come into our lives to touch us in some way, to teach us to be better, to help us strive to get prepared to spend eternity with them in heaven. Everything that Bela has done for me has been positive, there has been nothing that I have not been grateful to go through. It does get difficult when it is her that has to be the one going through so much. I always wish I could take it away and go through it myself. What an example of the atonement that has been for me! I am so grateful for my tiny little baby for teaching me so much!
She's had a good, long week of resting and eating. I wish I could say that she is growing great, (you have NO idea how bad I wish I could say that) but she's still taking her time in that area. She is almost back to her weight when we were admitted..she's about 8 4 now. But she is gaining and not losing. Yeah! And she hasn't thrown up ONCE since we've been here, a big accomplishment. She's happy and smiley when she is awake and sleeps very peacefully. That all means that her heart is working better and she's feeling better. SOOO good to see! SHe had no more lines in her so I am loving being able to snuggle her now and hold her right up against me just like she likes it. She's still nursing a couple times a day, more for comfort than nutrition (she gets it all through her NG tube), but she absolutley still loves it so I'm still hopeful we can continue that after her surgery. For now she just needs to more messing around. Pumping isn't so great, but it's worth it for her to get my milk, and I'm glad I can do that for her. All in all, a very good week for us. She is still on the schedule for a cath lab on Thursday and i'm trying not to be nervous for that. She'll be okay. (I have to tell myself that). It's hard to get her to a certain point, then have to go back three steps again and get that darn breathing tube back and all that fun stuff. But she should come off of it fairly quickly and get back to where she is. We are soooo grateful she's here with us, smiling along the way. I will post when we get cath results back and have a clearer picture of what is going on in that little heart of hers. Thank you for your prayers and support.

Saturday, June 14, 2008

Sorry for the delay

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. To all of you that check the blog regularly for updates this is not very informative for a whole week, but I promise Avery will give a thorough update tomorrow.

Sunday, June 8, 2008

Thank you

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 considering the thought of her not being with us. That is a constant reality we hope to not have to face, but every day is a struggle. Today her stats look good but for the majority of the day, she has been uncomfortable. It is frustrating to think that we will not know for sure what is causing the discomfort until a week from Monday or Tuesday. The plan is to keep her comfortable this week and complete the cycle of antibitoic before she goes to the cath lab on Monday or Tuesday of next week. The update for today is that Bela is the Best, Greatest, Strongest, Sweetest, Cutest, little 3 and 1/2 month old I have ever met and I am grateful for every day I have to spend with her.

Friday, June 6, 2008


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 finally this afternoon she is starting to sound much clearer. Hopefully now after a few days of antibiotics her lungs will start to stay clear and not keep filling up. Nothing has still grown on the culture that was sent, but that dosn't necessarily mean that she doesn't have a virus, just that she doesn't have one of the viruses they can test for. So they are keeping her on antibiotics just to make sure they treat anything she may have. Her BNP number (that measures how well her heart is functioning and should be below 200) spiked again today. It was back up to 1300 this morning. Anything above 500 makes them worry, so to be above 1000 indicates a problem. Looks like she will still be going in for a cardiac catheterization to get a clearer picture of what is going on with her heart function. That will probably be the beginning of next week. Her body is slowly recovering from serious heart failure, so she is just going to need a good amount of time to get back to where she was. We've got two months or so to get her ready for her surgery and I just pray everyday that passes makes her stronger. So it was scary to hear that her number was up so high again today. I'm so glad she's here and being monitered so closely.
She's been awake a ton since her breathing tube came out. I love to see those beautiful baby blues!! It's such a good sight when I don't see them for awhile. Today she has been called 'a survivor' a few times, and 'Determined little Bela'. Makes me smile from ear to ear..:)

Bela checking out her mobile.

Wednesday, June 4, 2008

Deeper breaths for all!

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 miss her when she isn't awake and with us. She usually never wakes up while she's on her sedation med. I sang a song to her that I sang to her everday at home and she started to squirm around and respond to it. I loved it. She's coming back to me little by little and I have so much to be grateful to my Father in Heaven for.

Nothing has still grown on the culture they sent, so that means she most likely doesn't have a virus or infection (no pneumonia!). Her lungs just clogged up from ineffective heart funtion and poor breathing, then collapsed from all the gunk clogging the airways and have now opened back up nicely with all the treatments she has gotten. We will continue to give her her heart meds to help with the leaky tricuspid valve, which is probably the culprit for all the problems she's having, and hope it helps her heart function until next surgery which still looks like it will be in another couple of months. Whew! There is sooo much going on and I try to give just the nutshell of information, but sometimes it's probably still confusing to understand. It's amazing all that I've learned. I ask a million questions a day and feel very confident in all the terminology used and equipment that Bela requires. I wouldn't like it if I didn't, so I ask ask ask. It helps to feel like I take part in her care.

Yeah for progress!! Thank you for all the comments over the last couple of days, I can't really say how much they mean to me. It brings me to tears to know how many good people are praying for us, and to hear over and over that we are loved-- not sure we are deserving of all the incredibly kind comments from everyone (well, Bela is :)), but they are soooooooo appreciated. We're keeping our heads up high and know that this too shall pass. I look forward to the day that she's in my arms again and every day that passes is one more day closer to that! I am grateful that she is mine because she is one special little (tiny) person.

Here's some shots of Bela on Wednesday taken by Camille... Hard to believe this was just a few days before all of this happened..

Tuesday, June 3, 2008

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 her heart is working (and should be lower than 200 or so) was at 13,000 when we got here Sunday night. Her dr. used the term astronomical to discribe how high that is and said it was beyond heart failure. It assures me even more that she was blessed from on high to be kept alive long enough to get here and get care. Her number yesterday was 8,000 and today it is at 200. MUCH BETTER. Her heart is now able to get a rest with all the support she's getting now. Her numbers look good, better than they really though they would look with her lungs looking like they do. I'll just count that as another blessing. We are being so incredibly blessed. She would most likely not be here if it wasn't for a loving Heavenly Father that is looking after her. During all the chaos Sunday night when they were working on her my mom kept telling me that the angels were with her to comfort her. I always like to think that my grandpa's are with her. They were both extremely close to me and I know that they are with her in her darkest times. While she is heavily sedated like she is right now, it's comforting for me to think that she's in a happy place, somewhere between heaven and earth with loved ones she recently left in heaven. A mother has to think that way or this is all too hard. I just dont want her to feel any pain or suffer in any way. This is such a scary time, she just needs to be strong enough to make it to her next surgery. Please pray that she will. Thank you for your love and support to us..we couldn't do it without you.
I'm not sure how many of the staff here check this blog, I know some do, so I just wanted to say a huge thank you for the care she has gotten during this stay. This team is incredible and everyone is so concerned about Bela. all day long I'm giving her update to other nurses that have had Bela before and want to know what is going on. I am sooo grateful to be here with this team of nurses, doctors, and surgeons. Thank you for taking care of my daughter!

Monday, June 2, 2008

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 her lungs were pulling in. But a little into the drive she started to look much better. Her breathing calmed down a bit and she didn't look quite as blue. When we got to the ER and got her admitted, they hooked her up to the machines and she was back in the 80's, although her coloring was still pretty grayish blue. Everyone was very surprised to see 80's. (80 is good for Bela, normal sats are in the high 90's-100, just to clarify). We got her up to the Cardiac ICU and the dr. kept saying that she knew her sats looked okay but she was extremely worried about the way Bela looked. She started telling us that she didn't want to wait any longer for her sats to go down, she felt more comfortable just intubating her right then to help her breathe a little better and take some work off of her heart. Just as she was telling us this Bela's sats and heart rate started dropping fast. She yelled that she was coding and everyone who was standing by waiting to intubate her jumped into action. There were 8 drs and nurses in here working on her. It took 2 hours to get her stabalized. Then she started dropping again. They had to give her more manual breaths and she stabalized again after another hour or so. We still don't really know what caused it to come on so sudden, but they think it may be due to a leaking tricuspid valve. She has too much fluid in her lungs and heart and they are having a very difficult time getting it to stay off. They get her stabalized for awhile, then her sats start to drop some again. Nothing like they did last night, she's much more stable now, but still not in the clear. We will not know much more until all her tests and cultures come back and she goes into the cath lab over the next couple days.
Everything happened so quickly and we got her in without a second to spare. I have no doubt that the Lord sustained her heart until she got here and could receive the care she needed. We will update when we know more.