Bela Girl

I wanted to write a few words about sweet baby Annabelle who passed away on Thursday. I posted her story on my blog about a month ago. She was born a month before Bela and I followed her journey through her surgery and going home. She was a beautiful little angel and fought so hard for the two months she was here. I didn't know the family well, but have felt close to them as they shared their story, through good times and difficult times. She is back in Jesus' arms, happy and whole. I also wanted to share Gracie's story. Baby Gracie was born on March 20th with HLHS. She has been fighting for 11 days to stay here, but her little heart may not be able to fight much longer. She has been on an ECMO machine that is keeping her heart beating. On Wednesday or Thursday they are going to stop the machine and see if her little heart might be able to start pumping on it's own. We are praying for her and her family, and ask that whoever reads this post will do the same. Thro...

We've been home 5 wonderful days now and time is going by so fast. It's amazing how much time and attention my tiny 6 pound little girl requires. She's a full time job! I always knew she would change my life (in many more ways than one), but I'm starting to realize just how long the road ahead with her really is! On our last day at the hospital I met a mom of a 5 1/2 month old little boy who had just gotten his Glenn operation (the second one). It was very sad to see his little arms strapped down and to see a scared look on his little face. At his age he knew more of what was going on. And then these sweet babies go through all of it again at 2-3 years. The more families that I meet with babies going through this the more I have come to realize that they are here for very specific, important reasons. I believe that in the premortal life, they not only accepted this challenging life, but volunteered for it. I believe that they were of the strongest, most valient s...

Here's the last couple of days in pictures: Bela's last full day in the hospital This was the last big test she had done..testing her brain wave activity which all looked compleltey normal. Yeah! It's amazing what modern medicine can do.. Bela's visitors, her aunts and cousins. Benson giving kisses. He's loves Bela. His favorite thing to do for her is give her her binkey..not too surprising. This is Bela's all about me board. Everyday she'd get new goals she was working on, these are her current goals..:) This was taken yesterday right before we got discarged. Getting ready to go! She loved the carseat and was wide awake when we left, saying goodbye to all her nurse and dr friends and checking out the world.. She is so tiny in the carseat.. Benson was helping us push our stuff out.. he was so excited to be leaving and taking mommy and Bela home. Outside the hospital. Home, sweet home. Dosn't she look so happy to be home? Driving away from the hospita...

We just wanted to let everyone know that we brought Bela home tonight. We will post details and pictures tomorrow.

One more link...this is the article that will be in the arizona republic tomorrow and I think it's my favorite so far... I will post really soon an update on Bela and how she's doing.. http://www.azcentral.com/community/gilbert/articles/0319gr-surgery0319-on.html

This was a great article. http://www.eastvalleytribune.com/story/111682

Here is the Channel 3 segment and article.

Channel 3 at 4:30 Channel 12 around 6:00 tonight East Valley Tribune--online tonight and in papers tomorrow Arizona Republic article in paper Thursday Wow!! What an afternoon of interviews! We had one come in after the other. They've kept us and the surgeons very busy today.. Anyone that gets the paper...could you save it for us? Thanks!

Our story has been picked up by some media here in the valley! I just got done doing an interview with Channel 3 news that will air tonight at 4:30!! They interviewed our surgeon first and then came in and took about 30 minutes of footage. It was pretty crazy... so tune in tonight to channel 3! I'm doing an interview with channel 12 in about an hour and am not sure when that one will air but will let you know. Also, the tribune is coming in later tonight to do another interview for the paper. It's pretty funny really. I look super on about 4 hours of sleep a night and in my hospital attire, but oh well! We're excited to let other people know about the hybrid procedure and tell Bela's story.

little beauty... It's soo fun to be with her now...she spends lots of time awake checking things out. She's got such a calm content personality. Even when the nurses and doctors are messing with her she just grunts a little here and there, she very rarely cries. She went down a little in weight again today :( and there was debate about whether or not I could continue to nurse her or start giving her bottles supplemented with high caloric formula, but I had to fight for them to give us one more day at the nursing since every time we nurse she does a little better. Since everyone's prayers have been working miracles so far, please pray for her to gain so we can keep doing this! Other than that she's having a good day... Room 7T20 is getting a little claustrophobic for mommy, but I cannot complain. My baby is doing so well and I get to do more and more for her. Soon enough we'll be getting some fresh air..

I guess I was just frustrated when I was writing my last post...she was actually doing very well considering everything she has been through, and to latch on at all was great news for her. I guess I was expecting her to take right to it because that's how it was with Benson. He never had a single problem which I'm realizing now is definatley not the norm. We actually did much better today. She had one 13 minute feeding!! The last 3 feedings they havn't been giving her any supplemental tube feedings. She was actually throwing up during her tube feedings so they determined she was probably getting too much in her tummy, so she was getting more from me than they thought. She seems content after each nursing and goes about 3-3 1/2 hours in between so she is obviously getting enough. We'll see tomorrow morning when she is weighed in again if she is getting enough though. I'm really hoping for a good number so I can continue to nurse her. She has been improving ea...

The last couple days and nights have been wonderful, but I have to admit a little frustrating as well. Yes, I have been able to start trying to nurse Bela, but that is what it has been...trying. Since she went so long without nursing, she's having to re-learn how to do it. Once in awhile she'll get a good latch, but then she tires out too quickly, so it's been hard to get her to take in much milk that way. I get to try nursing every 6 hours and in between she gets a bottle feeding. Whatever she dosn't get at each feeding she gets through her nose and it usually ends up being most of her full feeding. :( She has also been spitting up quite a bit of her feedings. This morning she had actually thrown up her nose tube out of her mouth so they had to put a new one in and she didn't enjoy that.. She needs to start keeping her food down to gain weight, and also for us to be able to take her home. The last few days she has been losing a little weight each day, which ...

Do miracles ever make sense? Scientically, none of what we are seeing makes sense. Bela is progressing every day at a weeks rate. Today has been quite touching for me as I have discussed and meditated Bela's progression. I was told that somehow, Bela's name was put on the 1st Presidency's prayer roll, in addition to prayer rolls in a variety of Temples. Not to mention the hundreds if thousands that have fasted and prayed for Bela. We are witnessing a miracle. The progress she has made is just not scientically possible. So where do I start. The great day might have started when Avery was told she could try and NURSE. We were always told that Bela might not ever be able to nurse considering her anatomy and now at week two, she nursed TWICE today. I can only attempt to convey what a special moment that was for Avery. The great day only got better when we were told on three different occasions that they are starting to prepare for Bela's discharge. Seriously?? ...

Here's some new pics of Bela. She is now 13 days old and weighing in at 6 lbs. 10 ox!! It's amazing to look back at pictures right after her surgery just 6 short days ago and see the progress that she has made... We got to try another bottle feed today and had a much better experience!! She took 10 whole cc's and spit up just a tiny bit..no major throwing up today. We couldn't have asked for anything better than that. Her docs and nurses were very pleased with that. It was sooo fun to feed her and see her little mouth suck and swallow... She has been awake so much more latley, but everytime I take a picture she shuts her eyes with the flash. Soon I'll catch her little eyes. SHe is sooo cute! How bout that hair? Other than the bottle feeding news, there's really not too much to report. She's staying strong and still pulling great numbers. She got her IV out of her neck because it was starting to leak and when they took it off it looked really bad, and...

Sorry about the lack of posts...things have been so busy latley. Little miss Bela is requiring lots more attention lately and we're loving it! Today around 2 she was completley taken off all her sedation and pain meds so she has been so alert and awake. I finally feel like I'm getting to know my little girl. She loves to look around and check things out. Today I was there for about 7 hours and she was probably awake for about 4 of those hours. It was amazing. It was the first time she would stay awake longer than a few seconds and actually focus on me. I sat right by her side all day and held her little hand and talked to her. I also got to hold her for a couple hours today. It's amazing to hold her. She's got a lot less tubes now and so it's feels more comfortable to hold her. Yesterday when I got to the hospital she was wearing a little onsie...it was so cute. I'm sorta mad a Tanner because the last two days he took the camera with him to work so ...

Since I arrived at 4:00 pm I have received a visit from 2 cardiologists, 2 ICU docs, who knows how many nurses, and the lead surgeon, all of which said that "Bela is doing great." They just came in and took out her breathing tube! What an exciting moment. She is so BELA and it is so nice to see her face. Her voice is very horse, but it is nice to hear the little noises she is making. I know for a majority of you these pictures are scary but she is doing so well. When the doctors have come in, I ask each of them separately "how is she doing?" They all respond the same way with the same hesitation, "she is doing great." I believe the hesitation because we are all a part of a miracle and for many it is hard to witness and understand a miracle. Bela is beating all odds every day, but these doctors have no idea how many people are excercising faith in her behalf. Another great day and we thank all of you for the faith, strength, and support.

Bela's had a busier day...lots of nurses doing lots of things for her. She is still doing wonderfully. THey've taken out both her IV's on her feet and put in one on her arm. Two for one! She's currently getting a CT Scan..they just came to take her away for it. If all looks good on her scan they can possibly get the tube out still today, or more likely tomorrow. I don't like to get my hopes up when they say one thing and it turns out to be another, but we sure hope her scan looks good and that it will be out sooner than later. A lot depends on that tube coming out. She can start being taken off a few of the meds, and she can start trying to feed orally. And I can finally hear her sweet voice! Plus she will be a lot more comfortable. Her sedation med is slowly being reduced and so she has been a little more squirmy today. It's nice to see movement and know that she is an alive and well baby under all the medications. Bela is truly amazing.. she is a m...

Avery is pretty exhausted today so she asked me to give an update. To be honest this will be my second official post, but on the last one I only got one comment, so I am shooting for at least two. Bela had another good night last night and overall a pretty good day. We were optomistic that she would get her breathing tube out today but now we are being told it may be another couple of days. The plan is to slowly wean her off of the heart medicines and then she should be ready to come off the breathing tube. We just have to take it a day at a time because the thought of three to six months straight of this routine is overwelming. Bela's little friend Eden is having her surgery tomorrow morning at 8:00 am so I would like to ask those of you following our story to also pray in her behalf. We know the anxiety they are going through and I know tomorrow especially, they can use the extra prayers. Let me tell you that I can feel it in my heart every time a prayer is offered in our ...

Sorry for the delay in getting a post up. There are not enought hours in the days to get everything done that I'd like to.. She was kept very comfortable last night but today she has been a little more agitated and seems to be a little uncomforable. It breaks my heart. Her little face scrunches up to cry but she can't get any sound out because of the breathing tube down her throat so she trys to cry but can't. They just gave her another dose of morphine, so she should be feeling more comfortable soon. Her vitals have been staying right where they should be. There's been a couple times when they've dropped or raised, but they go right back pretty quickly. No big scares yet. She is still beating all the odds and exceeding doctors expectations of her. She got her chest tube out this morning. One less tube coming out of her! Her scar already looks like it's beginning to heal nicely. It's hard to believe looking at her that she just had open heart surg...

the surgeon just came in and gave us the update...EVERYTHING WENT BETTER THAN EXPECTED!!!! HUGE sigh of relief!!!! The doctors said that everything went just as planned and she did beautifully. My strong little girl!!! What a day! They just brought her out of the OR and she is back in her room. We are in the waiting room until we can go back and be with her..probably about another hour or so. She needs to be hooked back up and stabalized. Tonight will be a long, crazy night watching all her vital signs and making sure she is doing okay at all times. We wont be leaving her side. They next 12 hours are crucial--watching vital signs and watching for swelling. She had a chest tube put in for drainage. Her chest was able to be closed back up because they were so confident in the surgery. Yeah! So far so good.. Thank you everyone for all the fasting and praying that went on today. please keep her in your prayers...

Bela's surgery time was delayed and we walked her to the operating room about two hours ago. We are told to expect another two hours. There is no way to discribe the intensity of the "waiting" we have gone through today. We were planning on seeing her leave for surgery at 11:00 am or so and she didn't actually go into the OR until closer to 4:00. Now we are waiting for her to come back. I know many of you have called, emailed, texted, etc wanted an update and we thought we owed an update to so many. We will post again after she is back and know more.

Bela is doing wonderfully. She had a great, uneventful night. Uneventful is exactly what we want from her right now.. She rested up good for today. My milked was upped again yesterday!! Yeah! She has gotten two more treatments of a dieretic (not sure of the spelling--keeps her fluid retention and swelling down) to make sure she is nice and dry for her surgery. She is exceeding expectations and we could not be more grateful for that. She is definatley receiving the divine help that we have been praying so hard for. Grace has proven so far to be the perfect name for her. THe bible dictionary defines grace as, 'divine means of help or strength, given through the bounteous mercy and love of Jesus Christ.' We know that she will continue to be in His loving hands. Bela got a name and a blessing last night from her Daddy. It was beautiful and perfect in every way. I'm so proud of Tanner and how he has been leading our family through this. He is here with his little girl ...

Bela was busy today...we all were. We met today with Bela's team of cardiologists and surgeons and got lots of news. When they left we all looked at eachother and just sighed...it's so exhausting and draining to listen to doctors tell us the harsh reality of our situation and try and wrap our brains around what they are going to try to do to save our little girl. We felt that way a lot during the pregnancy, but everything hits a lot harder now that she is here. My mom and Tanner's parents were here with us and it was nice to have someone else hear everything and help us sort it all out. They are hopeful for Bela, and believe they will get her through this, but they do admit they are not exactly sure of what they will find with her. Bela is a rare little case...and no one really knows what to expect from her. Because of how high risk she is, they are actually going to perform a different surgery than they previously thought they would do. Instead of the Norwood procedur...

Today was a good day for Bela girl. Her doctors and surgeons are meeting tomorrow morning to discuss her situation and the exact plan for her surgery. They will most likely do the surgery on Friday. It will be the next huge hurdle for her to get past. She has been doing so well latley, but she is just being kept stable. Her real work will start once they operate on her little heart and her body must go through the hard work of recovering from bypass surgery at 1 week old. We are meeting with the genetisist tomorrow to discuss the success rate for these babies using the little data that is out there. We're a little nervous to hear what she will say to us, but have to keep positive even if the data isn't. One great news of today is that they are going to start giving her my breast milk!! THey are putting an NG tube down her nose to her tummy right now. I'm so excited to feel like I am doing something for her. It's been difficult for me to feel like I'm not doi...

Bela had a good night and is doing good this morning. She needs to receive more blood this morning, but she should be able to rest most of today, no major procedures are planned. Everything changes from minute to minute though, so we'll see. She is so sweet and I've been able to get her cozy in her blankies. Being a mommy is the best thing in the world to be and I love my little girl.. I know she is being strengthened and blessed every minute. We chose Grace as her middle name because it means 'divine help' and we are sure she is the recipient of lots and lots of that. We are being blessed. More soon..