Monday, March 31, 2008

Heart babies

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.

Through this experience, we have been able to come to know the most amazing, strong people, and we have been so blessed through those relationships. The Lord knows what He is doing, and knows what His children need, and although it's hard to see it in the here and now, it will all be for our benefit in the end. We are so grateful for how strong our little Bela has been through the first month of her life. It was very difficult to hear of Annabelle's passing, who was home and seemed to be recovering so well, and we've realized that every day we have with our sweet girl is a day to cherish. We will love our Bela as long as the Lord sees fit that we have her, and we hope that is a long, long time.
We had a doctors apt. today and her heart is still looking great. She is struggling to gain the amount of weight she needs to be strong enough for her next surgery. She needs to be gaining more each day so we are supplementing her feedings and hope that it helps her gain. She's still so tiny, 6 lbs 10 ounces. I can't wait until she does not seem so fragile in my arms. She's eating like a champ, but her little body is burning her calories up so quickly. Other than that, she is looking very good to her doctors. They are watching her every move (through me who has to watch her like a hawk) because they just don't know what to expect since they havn't seen many of these hybrid procedure babies through to successful recovery. She lights up our home with the sweetest spirit, you can't help but feel happy when you're with her. We were grateful for another good checkup today and hope for many many more. We are humbled by the blessings she is receiving.
Something that we think is pretty amazing is that we have now met 4 different babies with HLHS born within a few days of eachother that were given the name Grace. Two as a first name and two as a middle name. We can't help but wonder if there is some special meaning to that and if these baby girls are all somehow connected.

Tuesday, March 25, 2008

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 spirits and chose this selfless life to bless the lives of others. I have been absolutley amazed and humbled by all the people who have been affected by Bela already. We got a sweet note the other day left on our porch by someone in our ward that we havn't even known that long but has been so supportive to us through all this. She wrote, "Your family's experience has truly been an inspiration to us, as I know it has been to so many others. It has helped strengthen our own testimonies of the Gospel principles and the love Heavenly Father has for us. THanks for helping us put life in proper perspective." I know that is why Bela is here. She is giving people a reason to believe in miracles and in the healing powers of heaven. She is giving people a chance to excersise faith and to pray more meaningfully and purposfully, and realize whats really important in life. I know that this is true for myself, she has helped me grow in so many ways since she has come into my life. I am grateful for what this little girl has taught me and will continue to teach me. And I am so grateful that so many of you have been able to be touched in some way by her as well. I am ever more convinced that this is why all these sweet babies I have met recently are given to us in this way. They are our teachers.
Bela has had 3 dr. apts since we've been home and each one has gone well. She is still doing great. She gained a tiny bit over the weekend. we were hoping for a little more, but she's doing so well. She LOVES to be held.. my mom says she's spoiled, I'm sure she is. :) I can't help but think that she is just so happy to be loved and cuddled and in mommy's arms so I happily give in. The only time she is extremely unhappy is when she is undressed. We've given her a couple baths and she is not a fan. Its a shame cuz there's nothing better than her clean fluffy mohawk. :)

We continue to appreciate soo much your love and support and prayers. Bela is getting stronger everyday and we have SO much to be grateful for.

Not to forget about Benson...he's been able to find ways to entertain himself lately..

Friday, March 21, 2008

Home Sweet Home

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 hospital yesterday was probably one of the best moments of my life so far, but was also very scary for me. I was soo excited to be coming home with my baby and getting her to a more comfortable place where we can work on getting her healthier and stronger. Getting the last of her IV's out and monitors off, and getting her into her little outfit was the greatest feeling. It was all I could do to not start taking everything off her the minute they said we'd start the discharge process. She has bruises all over her little body from different IV's and needles and I was sooo ready to get them all off her. It was sooo good to finally cuddle her with nothing attached. She seemed so warm and content to be wearing clothes and not just be naked. There are so many things I have wanted to do for her since she was born that I wasn't able to do for her until now, and it has been a wondeful night and day for me. One of the sweetest of my life. It's hard to put her down. And she is loving life too...she's so much more content and loves to be held. She has been nursing better than ever cuz we get to curl up in a warm bed together, instead of a loud, cold hospital room. She has been through soo much, and it has been so nice to give her a little break from it all.
All we had to come home with was a pulseox monitor. We have it on all night long and periodically throughout the day to make sure her oxygen saturations and her pulse are staying where they should be. As soon as we begin to notice her numbers trending down, that will be the sign that she is ready for her next surgery. We were also given lots of training on the signs to look for in her if there is a problem. We were told countless times yesterday (as if we didn't already know) how fragile our little girls condition is. Her heart is no where near being fixed, it is simply being kept functional until her next surgery. THere are a lot of little problems that could arise with it over the next few months and monitoring her is crucial for her survival. Also keeping her healthy is crucial for her survival. For that reason we are going to be very protective of her and cautious of who we let see and hold her. We would love for people to come see her, but just ask that you delay coming if you have any symptoms at all. Thanks for understanding..
We are sooo grateful to everyone who is praying for Bela because it is still working miracles for her. She has been lingering aroun 6 lbs 6 ox for awhile and needs to start gaining now. Her heart works so hard that she is burning calories so much faster than a normal newborn, so it's going to be more difficult to get her growing, but that is our goal. Drs. were amazed that she is solely breastfeeding. SHe didn't even have to come home with a NG tube which is pretty amazing for her condition. That's what prayer, divine help, and A LOT of determination can do I guess. I'm so grateful for her strength, she is so strong for such a little thing, and we are being incredibly blessed.
We are sooo excited to be home. Last night sleeping in my own bed was soo great(despite waking up every hour or so). Benson was soo excited to wake up and see her home today. He was all giggles today. It's a great day..

Thursday, March 20, 2008


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

Wednesday, March 19, 2008

Arizona Republic

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..

East Valley Tribune

This was a great article.

Tuesday, March 18, 2008

Channel 3 link

Here is the Channel 3 segment and article.

in the news...:)

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!

Channel 3 News at 4:30!

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.

Monday, March 17, 2008

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..

Sunday, March 16, 2008


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 each feeding and I could not be happier or more proud of her. She's doing so well.
We've been given a tentative discharge day of next Monday or Tuesday!!! It's soo exciting but scary at the same time. I just got a little training on how to insert and feed her through her nose tube should we have to go home with it. I'll continue to get more trainings for how to take care of her and signs to watch for over the next week. It's so comforting having her here with nurses at her bedside all the time when things happen. It's very scary to think of having her all by myself. But having her home will be so wonderful. Today Benson said "should we take baby bela home today?". He's been really interested in her lately. He wants to know about everything that's on her and we try and come up with ways to explain what everything is to a 2 year old. To him she just has lots of stickers and bandaids and he thinks it's pretty cool. They also told us that they're going to try and hold off on having the second operation until she's closer to 6 months if all goes well with her heart until then. I'm glad that she can wait that long and be that much stronger. The cardiologist that saw her today said that with her size and anatomy she just would not have made it through the Norwood. I just know that it was a blessing from heaven that she was able to receive the Hybrid. It's the first one they've ever performed here for HLHS, and the first one ever performed for a baby with Turners and HLHS, so she is making history. We've been contacted by public relations and they are trying to get news releases out about her story and the success of the hybrid procedure. We're all about getting the news out if it helps anyone else learn about it that would benefit from it. It has been lifesaving for Bela and we are so grateful for it.
I'm gonna try to get some shut eye now...hopefully we'll get some more good feeding in tonight. It's worth it to stay here and get about 2-3 hours of sleep if we do. :)

Feeding frustrations

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 has been making us a little nervous, but this morning she was up a little bit again which was good news. If she dosn't gain they'll not let me nurse anymore and go back to all tube feedings. It's so hard for her to get the suck swallow thing down, and it's so hard for her to get in a full feeding without tiring herself out. This will definatley be a huge battle for Bela. We're working hard on it and she's doing a little better each time. I'll be staying with her around the clock now so that we can work at it together, and I know she'll get it eventually. She's such a strong little girl. I'm just extremely grateful that I am able to try nursing her at all.
Everything else is still looking really good. Her heart is doing just what it's supposed to for now. Her stats all look great, and she's still off all meds. She gets an antibiotic twice a day for a sore that might be infected from one of her IV sites but that is it. She has long periods where she's totally awake and checking out the world and we're loving it. Her voice is also starting to come back little by's much stronger now and she's starting to actually keep me up at night with it! It's actually really nice to be 'up all night with the baby'. Life is so great and we are soo blessed.

Friday, March 14, 2008

Our Miracle

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?? We planned on spending at a minimum of three months here after the 1st surgery and now we are talking about discharge. They don't know when, but they are talking about sometime next week. We are all dumbfounded and many of the doctors and nurses have a difficult time understanding how she is doing so well. If I didn't know as I mentioned earlier the faith that has been excersiced in her behalf, I would be equally confused. Without any hestitation, I know that Heavenly Father has responded to the pleading of so many. It has been humbling to see our little Bela endure so much in her short two weeks and now at exactly two weeks, we are talking about going home next week. Miracles!
We know that we still have a 2nd and more intense surgery to endure, but for now, we couldn't feel more blessed.
I don't know how we will ever express the appreciation we have for all of you who have prayed, fasted, concerned, cried, etc. in our behalf. THANK YOU, THANK YOU.
We are so blessed!

Thursday, March 13, 2008

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 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 they thought it might've gotten infected so they are watching it closely for that. She's completley off all her medications and is now just receiving her feeds. She's getting more and more of my milk each day and tolerating it great. She is one special little girl who definatley has a purpose to fulfill here.
Her voice is still pretty hoarse, but it's coming back a little each day. She makes the funniest little noises and I love them. She has definatley taken to her binkey just like her big brother. Maybe with her we'll get her weaned a little sooner though...:)
Both grandma's got to hold Bela today..she's getting so much easier to hold now with less things coming out of her. It was a nice little reward for them for ALL that they've been doing lately to help us. We couldn't do this without them.
We wanted to quickly say thanks again to SO many people who are reaching out to serve, help, and support us through this. Every little thing that is done or prayer that is offered means so much to us.
Hope you enjoy the pictures, and I'll post again soon..

Wednesday, March 12, 2008

Waking up..

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 was so cute. I'm sorta mad a Tanner because the last two days he took the camera with him to work so I have no new pictures. She already looks so much better than the last pictures that were posted. She got the big thing off her head that measured her oxygen and so her entire face is clear of things and it's so nice to just look at her. She also got both the IV's out of her arms, so now all she has is a central line in her neck and that is it! She is moving along beautifully. She is down to one medicine for her heart and her feeds that she is receiving by drip. We are slowly weaning her off of all oxygen because she is doing so well breathing on her own. She should be off in a couple more days.
Today I got to try bottle feeding her. Another shock...we didn't think we'd be able to do that for awhile. But she is totally wanting something to suck on. She finds her little hands to suck on and loves her binky so they decided to let her try and see how she did. She didn't really like it..she took about 3 cc's and threw it all up about 45 minutes later. It was so sad. We'll keep trying. That will probably be Bela's hardest task to master before we get to go home, but I'm so excited that we're already working at it. Her surgeon came in to look at her this afternoon and once again said how great she was doing. He said that it's very rare for a baby with her anatomy to have such great numbers (meaning her vitals). It's so nice to hear that. I know we've said this many times, but she really is exceeding all expectations of her, and we hope and pray that she continues to do so. I think it has a lot to do with the fact that she was able to get the hybrid procedure instead of the Norwood. I'm not sure what might follow her next surgery, but we'll deal with all that when we get there. It is hard to see Bela go through so much, but overall she is doing so much better than we ever thought she would, so we are so grateful. Today was a wonderful day for me. I felt like I was able to do some mothering for her for the first time, and I look forward to lots more of it.
I promise to take pictures tomorrow and get them posted. Hopefully we'll have another good night and another good day to report tomorrow.

Monday, March 10, 2008

Breathing Tube is out!

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.

CT scan

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 miracle. Every single day and moment I have to spend with my family is so sweet and meaningful. Life is so precious. The power of prayer is real and it has touched our lives and certainly Bela's.

Sunday, March 9, 2008

Bela's daddy

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 behalf.

Bela has stole my heart and changed me for eternity. What a special little girl she is, and it is not easy to see her go through so much. Thanks again for all the support.

Saturday, March 8, 2008

8 days old and doing great!!

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 surgery yesterday. She really looks great. Her swelling has been very minimal which is very good. The ICU doc just came in and said they are trying to work towards getting her breathing tube out tomorrow! that would be so wonderful since we have never heard her cry yet. That will be a beautiful sound! I'm so proud of her for being so strong. I can't believe all that she has gone through in 8 days.

Here's Bela on her blessing day..

Bela opening her eyes a little for Daddy.

Bela post op. This was right after she came back from surgery to her room.

This is Bela getting an EKG (if you can see her under it all), testing the rythm of her heartbeats. It looks worse than it really is. She gets on of these every day.

They're running a million tests and watching her very closely...I know I have said this many times but Bela really is getting the best care possible. We've been so happy with the nurses and doctors and they are always right on top of things. It really was a huge blessing for Bela to be able to get the Hybrid procedure...she probably would not be doing as good if she'd had the Norwood procedure. We know they were inspired to know what was best for her. There are only 8 institutions nationwide that even do that procedure and St. Joe's just happened to be one. We also were blessed to have the surgeon from Chicago who specialized in that particular procedure to be here for her surgery. Everything has fallen into place and we just have no doubts whatsoever that it was all supposed to be this way. The Lord is in charge and is guiding and directing everything and we've all been unbelievable blessed.
I'm so glad to be passed that huge hurdle. I'm so glad that now we start working towards getting her well enough to come home. Before her surgery it was all just a waiting game. She has made it through beautifully and as long as everything stays the same we are hopefully on the road to recovery. Her first year of life will be mostly spent in the hospital but we know that and are prepared to do that for her. Pretty soon she'll come out of her heavy sedation and we'll be able to talk to her and love on her. I can't wait!

Friday, March 7, 2008

Great News!!

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...

Still waiting

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.

Thursday, March 6, 2008

Awaiting Surgery

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 as much as he can be and she is totally responsive to his voice. He says she has stolen his heart. We had our family here with us for the blessing, as well as Bishop Bean and his wife, and it was a very sweet experience for us. I will post pictures of it as soon as my mom gets here with my camera..
We are here here with Bela awaiting her surgery right now. There is another surgery going on right now and as soon as they're done with that one they will come get her. Im feeling a little nervous, but at the same time, I know she needs this to live so I'm anxious to take on this next step. I can't believe that its here upon us, we've been waiting for this day for a long time. Thank you for all your prayers and fasting..we definatly feel uplifted by them. I feel positive and hopeful. I will post as soon as we know anything. The surgery should take 3-4 hours, then another hour of getting her stabalized again in her room until we can come back and be with her.
I can't get enough of her. I don't think the pictures do her justice...she is so adorable and sweet. I got to hold her again last night for awhile. She was very peaceful all bundled up in her blankies in my arms. Those moments give me the boost I need right now. I'm so in love with my little girl..
We just heard of the birth of the daughter of some friends of ours that also was born with chromosome abnormalities and HLHS. THey did not know it was HLHS until after she was born. I hope they don't mind me saying this on our blog, but please add them to your prayers. They named her Eden Grace and she was born on the same day as our Bela Grace (leap day). THey must've been best friends before they came to earth and decided to take on their challenges of life together. Her surgery is scheduled for Monday. We are praying for you...

Wednesday, March 5, 2008

Lots of News..

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'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 procedure that most babies with HLHS have they are going to do a hybrid procedure, combining surgery with catheterization to make it a more milder procedure for her. It wont have to be a bypass surgery, which is A LOT easier on Bela. This will allow the Norwood procedure to be postponed until she is 3-6 months old and her body is much stronger to recover from such an invasive surgery. We may or may not be able to bring her home in between the two surgeries..we certainly hope we will be able to. It all depends on how she is doing. She may have problems with retaining fluid in her lungs in which case they'll have to put tubes in her chest to drain it. She may also deal with feeding and thriving issues. There are lots of things that could happen. 'One day at a time' has become my motto to live by through this, each day we get though is one more day with her and one more day to be grateful that she is in our lives. She is a blessing. We have a lot of hope for her and are trying to stay positive. It is helping. As I was leaving the hospital late last night, I told the nurse what I always tell the nurse when I leave, to please take good care of her for me until I got back. He told me that he would take care of her like she was his own because she is an angel from God. :) I really feel like she is getting the best care she could be getting, and that is such a blessing.
So we await Friday a bit nervously. We asked them what the best thing for us to be doing during the surgery, and they told us to try and go out and get lunch and not think about it. That sounds easy huh? Not so much, but we will get through this. They will give us updates every half hour or so. We know we are in the Lord's hands and He is in charge of things. He is not leaving us alone..we feel His peace, and I know she is precious to Him and she will be taken care of, no matter what.
I have been made aware of a fast that will take place tomorrow on behalf of Bela. I cannot tell all of you who are participating in that how much that means to us. It is extremely uplifting and encouraging to know that so many people are fasting and praying, and are behind us. We've been overloaded with love and support and cannot express enough our appreciation for it all. All the notes, emails, phone calls, visits, and things sent to the hospital, everything that everyone has been doing means so much. Thank you from the bottom of our hearts. We feel your prayers and support. It is extremely touching and we've been brought to tears many times over the love we have felt from people. THANK YOU.
Until Friday, Bela is just keeping stable, resting, and getting stronger. She is so sweet and precious and we love to talk and sing to her and hold her hand. She is doing as good as she could be doing right now. She's getting a little bit of my milk..I love it! She's tolerating it far so good. Hopefully after the surgery she'll continue to tolerate it and take it from a bottle once we can get the oxygen tube out of her throat. She's beating the odds and looking better pre op than anyone expected! We are being so blessed!!
That's it for today I guess..I'll post again soon.

Tuesday, March 4, 2008

Monday, March 3, 2008

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 doing anything for her that I would normally be able to do for my baby, so I am really happy about that.. They aren't sure if she will accept the milk though so we'll have to wait and see how it goes. We are praying that she will..
Benson stayed with us all day today at the hospital and did really well. It was so good to be with both my babies today at the same time. Tanner is with Bela tonight, and I got to come home tonight to put Bens to bed and it was soo nice to do his normal bedtime routine with him. He has been an angel through all of this. We left Bela's room to take a little walk outside today and before we left he stopped at the door and said, "We'll be right back Bela."
I feel very hopeful at times and then something will happen that brings me back down to the reality of the situation. It's constantly up and down. It's so hard to see her going through so much. I just pray my heart out that she gets strong enough over the next couple of days to be ready to take on surgery...that is all I can do.
I almost forgot...the best moment of our time with her so far was last night. Tanner and I both got to hold our sweet girl for the first time. It took three nurses to move her and all her tubes and cords, but we got to hold her each for a little while. We sang to her and she tried so hard to open her eyes and look at us. We knew she was trying to tell us she knew we were there. She is pretty sedated right now, so it's hard for her to get her eyes open, but she kept on trying and trying. It was the most response we have gotten from her yet. It was a very sweet experience for us, and one we hope to have again before Friday.
Thanks for all your means so much to us to know that there are so many people thinking and praying for her, and it really helps to get through this. I'll update again soon..

Sunday, March 2, 2008

More Pictures

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..