bela girl

Cath and lately

2012-01-22T19:41:00.000-08:00

It's been busy around here. Bela's cath went really well. As well as it could've gone probably. I stayed home with Ruthie in the morning and Tanner took her and actually sent her off before I got there. Normally, that would've never been ok with me, but I have to admit that it was actually so nice to not be there for that part. They gave her versed before they took her back which made her totally loopy.. I got some great video of her as happy as she could be. Tanner said she just waved bye to him and that was it! She came out of anesthesia so much more calm than last time too, and woke up much quicker. She was so thirsty she chugged her sippy cup of water, then threw it all up but immediately wanted more. She was not happy when she had to wait. We got to come home that night and we were all so glad to sleep in our beds.

Labs drawn at the cath came back with crazy thyroid results, possibly what was causing her lack of appetite and tiredness. We've been changing up her dosing and trying to get her back in the normal range. I took her to get her blood drawn last week and her TSH was still way too low. I have to take her in again tomorrow and hopefully we'll see some improvements. I think we will...the last two days I feel like I've had my Bela back. She had a fabulous day today, was her usual funny, happy self that I havn't seen in a couple months. I felt so happy today!

We met with Dr. Nigro her amazing heart surgeon on Friday to go over the details for her surgery. While some of it went over my head, I did understand perfectly when he said her oxygen sats should be in the 90's when this is over and possibly close to 100 in the months following! I'm so anxious for her to feel the increased oxygen and feel more energy as a result. Beth also said that regardless of weight issues and thyroid issues, heart wise she is in great shape going into this surgery. Her pressures are low and her function continues to be nice and strong. Music to my ears... hearing that has kinda given me a high all weekend long! I needed to hear some good news! Dr. Nigro is confident he can repair her leaky Tricuspid valve too and that she'll do just fine during the surgery. It's the recovery that can be so hard... BUT, we'll deal with that one day at a time when that time comes.

We also decided to put her G-tube back in to give her some help with her nutrition. She hasn't been eating great, and it'll help her be stronger going into surgery and help her through the recovery as well. She has good days and not so good days with eating, and this way, we can help her out a little on those not so good days. She's trying her best, but some days she just dosn't feel good enough to want to eat much. I was very against this at first, but in the last week I have had so much clarity and reassurance about it and I know that it's the right thing for her.

So the plan is to get her thyroid back in balance, get the G-tube in this week, and get her strong and ready for a March 5th Fontan procedure and tricuspid repair. Piece of cake, right?! I'll be happy when April comes around..:)

2012-01-09T11:06:00.000-08:00

2012....

I feel a little bit like I did before Bela was born...waiting and anticipating something that scares the heck out of me. I've know that 2012 means Bela's 3rd surgery. It has been nice to have this break, but now it's time (sigh). Bela goes in tomorrow for her pre-fontan cath. It's her 4th cath, but it never gets easier for me. Hopefully it'll be quick and easy and they'll get a really good idea of what they'll need to do during surgery.

I'm not sure what is going on but Bela hasn't been herself the last few weeks and anyone that knows her can see it. We took her in a couple weeks ago and she had an echo that looked normal and drew labs that also all came back normal, but... She is much more tired and lacks the desire to do much of anything besides read or watch movies. If we go on an errand or go outside she lasts a few minutes and then asks to go back home. So we havn't been doing too much lately. I'm not sure if she just keeps getting sick back to back (she is constantly snotty) or maybe she just needs the surgery. I'm hopeful that the Fontan will at least make her feel a little better? I always wish I could take her load for her sometimes, or just for a few moments feel how she feels, so I knew what it was like. I wish I could let her have my whole, perfect heart from time to time so she could go outside and run around and keep up with her friends.

Lately I feel kinda stuck in my own life.. I feel paralyzed sometimes by my worries. I don't really know how to describe it, but when she's struggling, or when I think too much about her surgery I just sorta function at half speed. I need the strength I get from getting on my knees frequently.

So 2012.... here we go. Please be good to my baby girl...

Bela's Story for PCH

2011-08-25T20:43:00.000-07:00

A couple months ago St. Joe's and Phoenix Children's merged their Pediatric Heart Units. I know I'm way biased towards St. Joe's, but PCH just gained an amazing cardiology team. They are very lucky. I'm really excited about the merge, I think it will offer the patients the best of both worlds. They called us a couple weeks ago to do an article to help with their '100% for Children' campaign. I told them that I didn't know anything about PCH, but I will promote Dr. Nigro (bel's surgeon) until I die. So anyway.. I'm glad I was able to share her story again and sing my praises to her incredible doctors.

Here's the link: Bela's Story

My little man

2011-08-23T12:46:00.000-07:00

My Bens started kindergarten... where has the time gone? I'm pretty sure I just had this little man.. Time is flying by. I have had 1000 different emotions the last couple weeks. I was really anticipating school starting because.. Summer here stinks. It's horrible. So I was excited for him to have something to do. But sending him those first few days were hard! So hard! I'd feel so anxious all day long. Knowing that he's with people and kids I don't know and learning and seeing who knows what and I wasn't right there to put little plugs into his ear all day long. I'm still having a hard time with that. But he's actually really having fun and loves to tell me all about his day. I love hearing all about his day. Like the stories about the girl in his class who is always naughty and gets in trouble all the time. And the PE teacher who is magic because he can throw a hula hoop out and then tells it to come back to him, and it does! And all the silly rhyming songs he's learning in music, the same songs I remember learning when I was in school. It's so fun to hear the stories and see his eyes light up.

I realized though that I'm really glad someone else is teaching him. Homework is already annoying because he dosn't like when I correct him and we usually both end up annoyed by the time it's done (all 5 minutes of it.) Does that happen with anyone else?

We sure do love you Bens. You are sweet, kind, and for the most part a very considerate little boy, and I hope you always stay that way.

The classic annoyed with all the pictures being taken picture. Seriously mom?!

Donate Life!

2011-08-18T10:01:00.000-07:00

Because of her

I decided to finally Donate Life, something I should've done a LONG time ago. In honor of Ruby Jane and my Bela.

Go to aniandmatttaylor.blogspot.com to register to become an organ donor and read about the amazing Ruby Jane.

HLHS

2011-08-18T08:45:00.000-07:00

I've realized that I have strayed from my main goal of this blog. It is first and foremost to document Bela's extraordinary fight with her Congenital Heart Defect HLHS. It is to hopefully provide hope and help to others who are going through similar situations with their babies. I just got a comment from a mommy of a newborn baby girl with HLHS and Turners. I was so thrilled that she found my blog and that I will be able to connect with her! She said that seeing Bela is giving her hope. Hope is the best medicine there is!

Bela at Disneyland

I recently found a blog called The New Left Heart Kid (Thenewleftheartkid.blogspot.com) started by Carter's mom to give hope to others with HLHS. In her first post she wrote:

"No longer afraid of the journey itself, I've learned to accept things as they are, and embrace the beautiful gift we've been given. Along the way, I've learned a few things, but the most important lesson stands out above all - today kids with Hypoplastic Left Heart Syndrome can survive - and do amazing things!"

I couldn't agree more..

She's a wild one with an angel's face

2011-08-11T22:44:00.000-07:00

For the record... This is the screw that Bela decided to swallow one day a couple months ago. Actually, I'm pretty sure she just decided to suck on it for awhile, but fell down and it lodged in her throat, gagged and choked and scared me half to death before finally swallowing it. Many x-rays, days (5), and poopy diapers later, it finally came out.

A few days later, she decided to give herself a haircut. Good thing it resulted in an adorable short haired Bela, but she's wild all the same.

Oh Bela.. so glad you're mine!

The last little while in pictures

2011-08-11T22:22:00.000-07:00

Got to be with my entire family while my parents were home!

My precious babies

Ruth Jane

2011-04-08T15:16:00.000-07:00

On April 10th, Ruthie Jane was given a name and a blessing by her Daddy..

Our little sweetheart is privileged to be named after one of the most wonderful people that has ever lived. Ruth Jane (the first) is my Grandma. I absolutely love and admire her. When I was little I used to sleep over all the time. She would make me a bed on the pink velvet couch that was at the foot of her bed and turn on a music box that had lit up flowers that changed colors. She and I made doll houses and clothespin dolls together listening to hawaiian music. She was everything a grandma should be. She was beautiful and wise to me. As a mom, I respect her even more now for the mother, grandmother, and great-grandmother she is. What I love most about her is how selfless she is. She would do ANYTHING for any of us.
She hasn't been doing very well the last few months, she can barely get out a whisper anymore. The last time she was able to talk to me on the phone was in November, and the only thing she was able to say was a whispered "I love you". I could tell how much effort it took her to say those three words and it meant the world to me.

me and Grandma Ruth when I was 7 months pregnant with Ruthie

Ruthie

2011-03-18T16:09:00.000-07:00

6 weeks already!

I have to resist the urge to eat her frequently.. She is so Yummy!!! She is filling out everyday and getting some good, kissable cheeks on her.. I LOVE this girl!

Birthday dinner at Grandma and Grandpa's

2011-03-18T16:07:00.000-07:00

Horrible iphone pics, but they're still cute... All she kept saying she wanted for her birthday was a crown and pink cupcakes. :)

Heart Walk 2011

2011-03-18T16:03:00.000-07:00

All 5 of us at the Heart walk.. the only picture I got...:(

We are so proud of our little 'heart hero' even though she refused to wear her heart hero shirt with a cape. Of course Benson loved his!

3

2011-03-14T16:19:00.000-07:00

My sweet little girl,
enjoy these wonderful days being 3.

Wear your pink tutu all day long... why not? Twirl around and pretend you're a ballerina or a princess (or both).

You're 3 years old and perfect, and the years just keep going faster and faster, so please just stay this way as long as you can.

Dress up like a princess and ask your brother to dance with you, put on all your jewlery at once, do your make-up with mommy and ask me to paint your toes.

You are so precious to me. I can't believe you are 3 now... Birthdays are always happy and special, but yours are truly magical!

2nd Annual Ethan's Run: Hope for Heart Defects

2011-02-10T11:38:00.001-08:00

Ethan's Run is this Saturday!!

Details

Kids Zone (bigger and better) 2 jump houses, an inflatable game, rock wall, face painting, and cotton candy. Children 4 and older will be $5 this year and that includes both the Fun Run and unlimited Kids Zone. All CHD kids are free (just show us your zipper).

Pancake Breakfast $5 or $20 per family. It will be provided by a scouting organization and proceeds go to Ethan's Run

Fun Run is 1.3 miles. We encourage friends and family of heart warriors to band together to represent thier loved one.

10K is the same route as last year and chip timed!

1/2 Marathon goes through Las Sendas then out to McDowell road, around north east Mesa, and finishes back in Las Sendas. This 1/2M is also chip timed and in process of certification.

Please go to www.ethansrunaz.com or active.com to register and get more information.

A note from Ethan's mommy:

Please help spread the word and raise CHD awareness!

Sometimes I question myself for putting on this event b/c of the time it takes, not only my families part, but all the volunteers as well. Then I get word of another little precious CHD baby (Ella) who loses her life to a complex defect and I am reminded of the purpose, the cause, and my little Ethan. . . We are grateful we can put on this event. And THANK YOU to all those who make it possible!

Ruthie's first week

2011-02-10T08:29:00.001-08:00

We got to the hospital early Thursday morning and it was FREEZING! Luckily we were at Gateway and had to walk all of 30 steps from the parking lot. I started pitocin at about 7 and Dr. Huish came and broke my waters at about 9 and things finally started rolling.

On our way

I was doing fine getting through contractions and the nurse came in to ask about an epidural at about 10:30. I told her I was fine for now, then the very next contraction about took my breath away. From one to the next they were all the sudden WAY more painful and coming every 2 minutes. So I said, nevermind, give it to me! It took about 30 minutes to get the anesthesiologist in there and ready.. They were coming every minute and he had to keep waiting for me to get though a contraction to give it to me.

For some reason the relief was not very immediate this time around.. It took a good 45 minutes to kick it, but I had a 'window' as they were calling it in my lower right side that I could still feel everything. They said it's rare, but can happen if the baby is laying in a certain way that blocks the medicine. So I was feeling everything in about a fourth of my uterus. It was much better than feeling it everywhere, but still so painful. They kept giving me boluses of the med and changing my position, but nothing was working. Finally about 2 hours later they gave me a shot of Fentanyl and it worked. I was so exhausted by this point and so drugged I was compleltey out of it. I got about a half and hour to rest when she said I was a 10 and ready to go. I seriously didn't want to do it, I didn't know if I could even push or even move my finger for that matter. They got me in position (with no help from me) and I started having horrible shaking. Dr. Huish came in and I was somehow able to push. I pushed though three contractions and she was out! It was the easiest delivery.

Those first moments seeing your new baby are amazing! It's so emotional and overwhelming. The whole time I'm laboring I'm wondering why in the world I keep doing this to myself. At one point I said I was never doing it again. Then she was in my arms and I would have done anything to have gotten her here, and every second of pregnancy and labor was all worth it.

We stayed that night and were so ready to come home the next day. Our nurse said she'd never discharged someone so fast.. she couldn't believe we wanted to go home so quick...the shorter the better with hospitals for us. The pediatrician checked Ruthie out and said she was perfectly healthy... and home we were.

She is very well loved and cuddled

Look who Ruthie makes look huge!!

Benson likes when she's awake and when she holds his hand. He holds her lots and always calls her Ruthie Jane. Bela just keeps asking where 'that baby' is all day. "Where's that baby mom?" She'll hold her for brief moments, but she mostly just wants to know where she is... I'm wondering when she won't be 'that baby' anymore. :)

She's been a breeze so far. Perfectly good, calm, and content. And INCREDIBLY sweet. I can't seem to ever want to put her down. I could nuzzle into her face and neck and stay there all day if I could. I love her faces, her tiny noises, her stretches, her smell, her eyes... I really LOVE the newborn stage. I think she's mostly her daddy.. she even has one dimple on her left cheek just like he does. :)

2011-02-04T17:13:00.000-08:00

Ruth Jane Milne

6 lbs 13 ounces

19 inches long

Ruthie is perfect. I will post more pictures and words later. For now....we are home taking turns loving on her. It has all been so perfect. I am SO IN LOVE, for the third time.. :)

Tomorrow?!

2011-02-02T15:49:00.000-08:00

Benson told me this morning that he feels like I've been pregnant for 10,000 years. It totally made me laugh.. I completely agree with him! From the sick beginning to the uncomfortable end, it does seem close to 10,000 years sometimes. She is quite content in there! I got my membranes stripped again the beginning of this week and nothing still!

My dr. and I talked about inducing and although I really was hoping to go into labor on my own this time, we decided to set up an induction for tomorrow morning at 5 a.m. Benson was born at 37 weeks and 6 days and he weighed 7 lbs 12 ounces. So if the average baby gains a half a pound a week and I'm 2 weeks past that, I could have a seriously big baby. I was 8 lbs 15 ounces. I'm just a tiny bit nervous about having a 9 pounder..

Now hopefully I just don't get pushed back (which I know could happen) and we get to meet our angel tomorrow! Besides having her in my arms, I think I might be most excited to not feel my stomach touch my legs when I'm sitting. :)

Still no baby...

2011-01-28T12:55:00.000-08:00

Getting anxious for her to come! On Tuesday I was dilated to a 3 and 100% effaced and had my membranes stripped. So where is she?! :) If anything I've had less contractions.. I am sooo ready to be done and meet her! Any tips on how to get this going?!

thoughts...nearing the end

2011-01-17T20:50:00.001-08:00

Today I was having trouble staying positive and patient as I near the end of my pregnancy. It's like this switch goes off when your getting close and you're no longer able to just enjoy it anymore.. Well.. that and you do get tired of the back pain, peeing every 20 minutes, heaving a giant belly from side to side trying desperately to just fall asleep, being out of breath from walking up the stairs, not being able to bend over... I could keep going but... I'll stop. I'm just ready to have a functional body and energy level back again.

....BUT.. how amazing is it that I grew a baby inside me? There's a sweet, full term baby girl getting all ready to come out and meet us. It's amazing.. it never gets old. Benson changed everything for us, then Bela came along and changed everything again.... all for the better. I can't wait to bring another into our family, to be loved and adored by her brother and sister. At this point in my pregnancy with Bela I was going to the dr. every other day to make sure she was still alive. It was painful. There was not much to be excited about and my heart felt so heavy. Every night when I'm (trying to) go to sleep, I put my hands on my tummy to feel her and get that little rush of excitement that something so BIG is about to happen to us, and that it will all be okay this time around..

I can't wait.

2011-01-12T16:28:00.001-08:00

I hate when I go this long in between posts...then I don't know where to begin!

We had a wonderful Christmas with lots of family time. My parents even got to be home from Brazil and spend a few days after christmas with us!

Benson and Bela are growing up too fast.. I wish we could freeze them both in their current ages. Benson is creative, imaginative, funny, and all boy. He is a different super hero every hour of every day and is usually creating something with his art stuff. He would rather stay home and play all day than leave the house to go anywhere, including school.

Bela is hilarious, sweet, smart, and full of personality. She comes up with the funniest things to say in her tiny little voice. She is mischievous and always getting into something she shouldn't be and then when she's found holds her little finger up to her lips and says, "shhh". She likes to dress up and 'get married' all the time like all her princess friends and like Rachel just did.

Bens and Bel are best friends. They play all the time together. It's so nice when that finally happened. Right now they are dancing together as Rapunzel and Dash. They are getting to be so easy. So what am I doing throwing in another one? :)

Actually, I am SO excited to have this little girl. I am most excited about the normal things I'll get to do with her like hold her right after she's born for hours and just stare at every inch of her, give her baths, nurse her in the quiet night hours, smell her newborn head and kiss it whenever I want, carry her around in a baby carrier, and go on walk... just to name a few. There were so many things I missed doing with Bela and it feels like forever ago that I was able to do them with Benson.

I still have some worries...don't know why.. I know she's healthy. I still have this small thought in my mind that something will go wrong. I think there'll be a moment after she's born when we're home and it'll probably be dark and quiet and I'm holding her in my arms and it'll just hit me that everything is really OKAY. It is almost here and it's SO exciting.

In the meantime, I'm just trying to stay busy so time goes by. Whenever I hit 36 weeks I get impatient and anxious. I was sleeping fine until last week, and I'm starting to ache in lots of places.. The last month is rotten. I'm grateful for these sweet two to keep me busy..

gone for good!

2010-11-17T13:35:00.000-08:00

You know when life is being so good to you you wonder if it's your turn for something to happen? Is that a horrible way to think? I don't think I used to think that way, before Bela's medical issues came crashing down on us one day. I guess I just don't want to take one single day of my life right now for granted. Time is going so fast and there's so much good..

To name a few...

1. Bela is an eater.

Such a simple thing to say, but what a HUGE accomplishment for her! Most of the time I knew that one day I'd be able to say that, but there were also days I was unsure if she'd ever get her tube out. It hasn't been easy since that day she pulled out her own tube. The first week was BAD. She was not eating very much and I was worrying myself sick everyday. We prayed like crazy during those days. There's only so much you can do to get your daughter to eat when she is refusing. She hit a really low point and now looking back, I realize that she needed to get there in order to decide she needed to eat.

There are NO words to describe how good it is to not tube feed or do anything associated with it. I can't believe how easy life is without it and how much more time I have to enjoy life and my babies. Throwing all her supplies away was liberating!

2. Yesterday we had a GREAT cardiology appointment.. our best yet!

Not only was she up from 9.6 kilos to 10.1 kilos :):):):), assuring us that her tube is definately staying gone for good, her echo looked fabulous! Her heart function continues to be better than anyone originally thought possible.

3. Benson turned 5!

That boy is the definition of sweet, I could not be luckier to be his mommy. He loves that he can now say he's 5. I'm not sure how I feel about having a 5 year old yet.. but he's sure fun.

4. Baby number 3 is healthy and the pregnancy is going great.

I can't believe I'm already 29 weeks. Bela's cardiologists did a fetal echo on the baby and reassured me that everything formed perfectly. I could not believe the difference between her heart and Bela's. I'm really enjoying this pregnancy, apart from horrible sciatic nerve pain. I'm so grateful for her health.

5. It's the holidays! What isn't happy about that?! I'm baking too much though. I usually control myself, but something has happened to me latley.. I just made these and they were amazing.. yumm.

Bela's tube feeding journey

2010-10-05T10:47:00.000-07:00

Bela today at the park.. tube free. I tucked her shirt in to keep sand out of it. You can tell there's no bump, just a perfect, smooth little belly. :)

I wanted to documented our journey with good 'ol tube feeding... sorry, this may be long! I have been tube feeding Bela for 2 years and 8 months.

The horrors of the NG tube are STILL with me. I cannot think about it without having horrible thoughts, but as Tanner always has to remind me, we did what we thought was best for Bela at the time. IF I could go back in time, (which is a very silly thing to say, because I can't) I would have NEVER subjected Bela and our family to that devilish little tube for as long as we did. Getting through a year with that thing was probably the single hardest thing on me we'd been though up to that point . It really was that bad. We tried and tried to get her eating before we put in the G-tube, but she was just not ready yet. I know that she needed the G-tube in order to learn to eat. It was a very crucial step for Bela. She needed lots of time to heal from the pain and trauma that the NG tube caused her. A week after her first bday I stormed (quite literally) into Dr. Graziano's office and with tears in my eyes begged her to schedule us asap because I was not going to put it in again. I was DONE. I know I was not the first mom she had seen in that condition . She scheduled us the next morning and told me Bela would never see one again. Although terrified of another surgery, there was real relief on that day. Her g-tube has been good to us. It has allowed us over the last year and 8 months to very slowly break down the trauma that the NG tube, breathing tube, suctioning, reflux, aspirating, gagging, and vomiting had caused. She really had SO much to overcome. It took several weekly therapists, trips to Tucson to work with more therapists, and lots and lots of work at home. And now.....

1 year and 8 months later...

We said goodbye to the G-tube today!!!!!

I'm still trying to wrap my brain around it. This morning about 9 a.m. I was in the laundry room doing laundry and Bela was in my room watching a cartoon. It's right down the hall so I can hear everything that goes on in my room. I came in with a pile of laundry and noticed she was holding something in her hands.. I thought it was nail polish or something. I put the laundry in my closet and went over to see what it was and to my astonishment, it was her tube. What's wierd about it is that the balloon the holds the tube in her tummy was completley inflated. You have to deflate the balloon in order to get it out of the tiny hole in her tummy. I have NO idea how she got it out, and how she did it without any pain, crying, or any peep at all. It was all the sudden just in her hands. She never usually messed with it, she knew if she tugged it hurt. It's a mystery.

So anyway, I sorta freaked out for a minute, trying to decide what to do first. It's ironic because I hadn't used her tube in 10 days. I decided it was time to stop giving her food here and there through her tube and to see what she was able to do without using it at all. Her eating has been so great lately so we were giving her a 'trial run'. I really felt like I was just holding her back by giving her a little of her food through the tube.. She wasn't having to be truly hungry. Her eating skills were finally there, so I went for it. She's been doing so great, there was talk of possibly removing it in a month or so IF she maintained her weight. But I wasn't sure if I should just seize the opportunity to just go ahead and be done with it for good or stick it back in. Only thing was, her hole looked completely shut tight already. I had no idea how long it had been out, but the hole is so small it closes up really quickly, so you don't have a big amount of time to get it back in if it comes out. It looked like it'd be really hard to get it back in, not to mention painful for her. I called Tanner twice, but he was in a meeting and didn't answer. So I called her cardiologist NP for her opinion. She told me to just go ahead and leave it out, that it would probably be a good thing for Bela and thought maybe Bela was just trying to tell us something. She's really good at that usually. So what was done was done! It was OUT! I'm still trying to wrap my brain around the fact the she no longer has a tube. It's really wierd after so long to not be able to feed her even if I wanted to. I'm just so used to it.

After I talked to the NP, I went back in to talk to Bela. She was still playing with her tube, and I asked her what she had. She held it way up and happily said, 'My tube!' Then I asked her if she was all done with her tube, and she clapped her hands and said 'All done, mommy! Yeah Bela!'

I feel really hopeful about this. I had been confused about what to do and Bela decided to make the decision easy for me. I think it was an answer to prayer really, because I had been praying a lot lately through this little 'trial run' about her eating and about knowing when and if she would be ready to remove the tube. It feels like a blessing. Then she proceeded to eat a great, big lunch right after! She still has her days and meals that she doesn't want to eat much, but she's 2 and that's just normal. Then there are meals where she eats great. I just HOPE so much that it's enough. I want to just be able to trust her to eat when she wants and how much she wants. I can't begin to say what it would be like to not have to count calories, and to count every bite of food she takes. And I am seriously considering burning her tube feeding supplies that take up two drawers in my kitchen! Just throwing them away just doesn't seem like enough..:)

Hopefully today marks the very end of Bela's tube feeding journey. It's cause for celebration around here!

Eating her M&M's during conference. She was 'playing bingo'. She loves chocolate.

Pink!

2010-09-08T16:28:00.000-07:00

I can't seem to wipe the smile off my face or find the ground.. I am elated! We are having another precious baby GIRL. More pink it is!!

A baby girl with a beautiful, healthy heart with 4 chambers that I did count out loud. And then I cried.

I realized as soon as I laid down on the table that I was extremely nervous. All the sudden I realized I was about to find out if there was something wrong and I didn't want to go thru with it. What if? I wasn't ready to handle it. But we had the same tech that did Bela's ultrasound and found her heart defect and she knew how I was feeling. So she went straight for the heart and right away up popped the most BEAUTIFUL thing I have ever seen. 4 chambers and a nice, big left ventricle. I don't think until right then I realized how much I'd worried I wouldn't see that, and it felt amazing to see it so clearly.

I want to remember this.. The tech said on a little 8 ounce baby it is extremeley difficult to get as great of pictures of her heart as we were able to get. She said our little girlie was in the perfect position right from the start to get perfectly clear images of her heart. She must've known I needed to be comforted today. It was a tender mercy.

Then I met with Dr. Huish who further told me it was perfect and that all other measurments were too. He told me to stop worrying and enjoy the rest of my pregnancy. Feels soooo good!

Pink or Blue?!?

2010-09-07T13:58:00.000-07:00

Tomorrow is our 'big' ultrasound. For me, the 19 week ultrasound used to just mean finding out the sex of the baby. Now I feel like it's more of an afterthought, although still ultra-exctiting. I cannot wait to know if another baby boy or girl will join our family, but oh how I want to see a healthy baby on that screen!! I want to hear that everything is measuring perfectly and that the heart has 4 beautiful functioning chambers. I want to see them and count them. And then I might finally let go of that tugging worry that I've been trying to dismiss for 19 weeks. I'm so nervous, but I'm ready.

I've started to feel some good movement this last week.. I just LOVE that part of pregnancy! I've been waiting {not so patiently} for those first movements.. It has been reassuring to me, and I'll take it..

Wish us luck! :)

Patriotic Bela

2010-08-16T16:01:00.000-07:00

I love this girl

{picture taken back in July by Ang}

HOME

2010-08-12T18:36:00.001-07:00

There is one happy, snuggled up little girl in her crib right now. We've been home a couple hours now and the minute we laid her in her crib she fell asleep. I keep checking on her and she seems very comfortable. She's so glad to be home. She'll need a few days to recover and some good rest.

I'm ready for my turn to crash now. I think I slept maybe an hour all together last night. Bela had a rough night and wanted mommy to 'hold you' all night. I wish yesterday morning I could've just had a tiny glimpse of her home sleeping in her crib tonight so that I could've spared myself some of the worrying of yesterday, (was that really just yesterday?) but unfortunatley that's not part of the deal. You have to go thru all the worrying because it's all such an unknown until it's over.

I said this during her 2 day g-tube surgery stay, and I'm saying it again, I honestly have NO CLUE how I did that for weeks and weeks that turned into months. I walked Bela around the unit today and saw many post op newborns fighting for their lives, and it is... I don't even know what the words are to describe it. It's humbling that Bela is where she is today, it's inspiring that these tiny heros are up there every day in the fight for their lives, it's heartbreaking to watch mothers standing over there fragile new babies, wondering if they'll have a tomorrow. It's frightening that it's a world our family knows so well, it's inpsiring when you see a 3 year old with 4 giant drainage tubes smiling at you from her hospital bed where she's been for over a month, it's a lot of things. It's very emotional, to say the least. It's a whole different world in there, and it's easy to forget that world when you've been home awhile. How very precious good health is, and how very often it is taken for granted..

THANK YOU to all of you who were praying for her. I received so many texts yesterday letting me know she was being prayed for and thought of and each time I read one it brought a smile and a beautiful reassurance. In those moments, they mean SO very much. When you're sitting there, staring at the wall, feeling so empty, and an 'just wanted you to know we love you and are praying for Bela' message pops up it's just what you need. We felt so much love, and that's what it's all about..

Being comforted by daddy while she was coming in and out of sedation

And now...Good night! :)

Oh, and one more thing... She did get that IV out. I held it on her while she was getting meds through it for the first 6 hours or so, and then as soon as she got her chance, it was out. And she was so proud of herself. They were very nice and allowed her to keep it out the rest of her stay.

Room 9

2010-08-11T13:14:00.001-07:00

The relief I feel when she is back in my view is indescribable. Even though she's a little beat up, wearing an oxygen mask, and bandaged in a few places, she's done with the hard part and on her way to recovering.

She came back about an hour ago, a couple hours less that planned. :) After taking measurments they decided it best to balloon her aorta and were able to stretch it from 7 mm to 10 mm. Ideally it should be 14 mm so they may have to repeat this whole process in a few months from now to stretch it a little more. And then at her next surgery, when she is opened up, they'll most likely have to take the whole narrowed 'chunk' out and rebuild it using a piece of a vein from her neck. Sound complicated? Yeah.., we'll deal with that when we get there. And that's just the aorta! That's on top of the already complicated surgery.

The doc seemed pleased to get it from 7mm to 10 mm today so we'll take it. Should help alleviate some of the pressure build up in her heart for now.

I'm SO grateful to say she's back, everything went well and there were no major complications. At one point her blood pressure dropped substantially so they had to pull everything out, give her a heart med and some time, then try again. The second go around she responded much better and her pressures stayed higher.

She is sleeping right now, but was one MAD little girl when she came back up. She woke up and immediatley started pulling out her IV yelling, "get it out!" She was thrashing and her leg incision started to bleed and nothing was calming her down so they gave her some good ol' ativan and since it's her drug of choice, it calmed her right down. She will probably wake up again soon and be just as mad and get more drugs until the effects of the anesthesia wear off. But I'm pretty sure she's not going to give up on getting that IV pulled out until she's succeeded. I'm telling them she's one determined little girl.. they saw a glimpse of what I meant when she woke up. I'm SO glad she is.

I guess someone else is tuckered out too...

Not so good to be back

2010-08-11T10:27:00.000-07:00

Bela is finally in the cath lab. She woke up this morning with yellow snot dried all over her face. I seriously couldn't believe it. The morning of her cath... of course. So I texted our NP and still came, knowing there was the possibility we'd be sent home. It took three hours to decide, but finally her cardiologist and anethesiologist decided she was okay to go ahead with it. It has made the nervous pit in my stomach that much worse. I don't know why that had to happen today. She hasn't been sick in so long.

When we were given the go ahead they asked us if we wanted to walk her into the cath lab. I didn't know if I wanted to or not, but figured if I could be with her that much longer I'd go ahead and do it. I had no idea what I was agreeing to. When we got in there they had the gas mask ready and had me hold it on her while I was holding her. I think it might've been one of the worst experiences I've had so far in this place. Seriuosly, I was a mess after that. As she arched and fought and wondered what I was doing and why she was feeling so wierd, I had to force the mask on her face and hold down her hands. She cried out to me, mommy, mommy. It seemed to take forever, and then finally her eyes started rolling into the back of her eyelids and she stopped fighting, limp. I don't know what was worse. Fighting or how she looked when it finally took over. I NEVER again want to see her like that, or do that again. It was just horrible. I usually hand her off to a nurse crying, but now I know that that is WAY easier.

I'm trying to get ahold of myself and stop seeing what just happened in my mind. It's just crummy being back here, in this waiting room, writing about her in a procedure. It never becomes easier, somehow I know that I will never just accept that this is her life, never just be okay with it, as much as it is completely her life.

I'm reminded by her nurse that this is just a cath. I know that. But nothing is 'just a' anything when it's YOUR daughter. It's just not easy, none of it.

Her cardiologist that is doing her cath said he'd have the surgeon come in to "just to be there in case." That's not what I want to hear, but he was clear and forward with us about possible complications, and I appreciate that about him.

Tanner just said to me, aren't they supposed to page us with an update? To which I responded, well it's only been 45 minutes. And he said, longest 45 minutes of my whole life. SO glad he's here with me. He loves his little girl.

We are in the waiting room with a family waiting for their son in a 6 hour surgery and I feel for them. There is nothing like waiting during open heart surgery. I am grateful we have another year before hers.

Waiting on an update.. Will write when I get one.

Thoughts..

2010-08-08T11:51:00.001-07:00

The week of the 11th has come.. darn it. Bela's cath is on Wednesday. When everyone else will be sending their kids off to their first day of school, we'll be sending her off to the cath lab.
Today I was so grateful for church. I'm grateful to start the week off with it every week, but especially this week. Although I tried to make a comment in Relief Society about Wednesday, I'm not sure anything really came across. I wasn't even emotional thinking about what I'd say, but as soon as I started to talk, I couldn't get anything out. I think it was the first time I'd actually put it into words to anyone but Tanner. All the sudden I felt so scared. And then there were so many great friends that wanted to know more about it, what was going on, how they could help, what they could do for us. That is why I love my church. There is such a strong sisterhood of women ready to serve and help wherever needed. It was nice to get it out there. To know that maybe some of them will remember her on Wednesday and say a prayer for her. It is uplifting and helpful. I'm so worried about complications and my mind is very occupied right now. During sacrament meeting my favorite scripture was read:

For God hath not given us the spirit of fear, but of power, and of love, and of a sound mind.

A wonderful reminder to me. There were weeks I read it everyday.
Today we talked about the possibility of Benson going on an airplane trip with Grandma and Grandpa Milne to a cabin on a lake in Washington from Tuesday to Wednesday. Of course my mommy mind starts to think of all the possible things that could go wrong. Benson gets lost at the aiport, he falls in the lake when no one is watching, he's sad and lonely at night. I have total confidence in my in-laws, it's just what my mind does. It's so annoying. Is that normal? I wonder if I am up to having a third piece of my heart walking around and able to get hurt and feel pain. You become a mother and your heart is forever changed. You feel the most incredible amount of love and joy you never thought was possible. And because of that you are also capable of feeling pain you never thought you could feel. It's a very vulnerable feeling. That's being a parent. For me, it's doing everything you know how to do and having hope it is enough. It's realizing how much you need a loving Heavenly Father and his constant guidance.

It's 10:00 at night and through the monitor I'm listening to Bela singing 'I love you, you love me, we're a happy family" over and over. Oh she makes me smile.
There are two sides to Bela's heart. One is fragile, broken, and overworked. But then there's the part that matters, and she has got more heart than anyone I know. This month I was supposed to be watching for signs of heart failure, but all she's shown us is her happy, energetic, non-stop heart. The one that is more powerful than the broken one. You would never know that her heart is struggling.. it's just another miracle in her life.

Baby #3

2010-08-04T10:59:00.000-07:00

Yep that's right! We are very excited to announce that #3 is on it's way!

Feeding clinic!

2010-07-29T13:45:00.000-07:00

Every summer I forget how hot it really gets here. Then the heat comes and I clearly remember and I wonder how we'll make it though. I love being outside.. I would spend all day outside if I could so it makes me so stir crazy! It's hard to entertain my munchkins all day inside. Bela asks to go to the beach pretty much every day. I wish we could too Bela!

I had my IFSP meeting today, and for the majority of the world who doesn't know what that is, it's a semi annual meeting with a state worker assigned to Bela's case. Today we discussed Bela going to preschool on her 3rd birthday and it blew me away! She would still have to qualify for it, and both her therapist and her case manager didn't think she'd qualify because she isn't actually delayed in any areas. I'm getting her evaluated next month, and if she does qualify she'll start school in February! My baby! I do think it would be very good for her. Especially snack time. :)

In regards to eating, she has come so far. However, her quantities are still so tiny. How do you get a 2 1/2 year old to eat more when they are DONE! She is so dramatic. She'll take 6 bites of something and then say, in an extremely dramatic voice, Mommy, I'm SO full! She just says it to get out of her chair. She'd rather be playing. There are a few things she will usually eat a good amount of: noodles, pizza, mac and cheese, quesadillas, and sweet potato fries. Everything else just gets nibbled on.

BUT...I'm so excited because we have finally gotten our dates and are going to Tucson on August 24th, 25th, and 26th for a 3 day intensive feeding clinic with Marsha Dunn Klein. She's a fabulous feeding therapist who is very hard to get into, because she's so well known and because she spends most of her time traveling to teach others about her program. I am so excited! I hope it gives Bela a big nudge in the right direction. Her home therapist thinks she now has all the skills needed to eat, it's just a matter of increasing how much she is eating and drinking. Which is hard to do! So I think this is a great time to do this more intense program. It's like she's SO close.. she just needs to eat a little more calories at each meal and she could get her tube out!

My little painters... trying to stay busy.
Thanks for checking in with us!

3 weeks

2010-07-19T13:10:00.001-07:00

Bela's cath has been scheduled for August 11th at 9 a.m, check in at 7 a.m. I'm so glad we're the first case. It's no fun having her hungry and not be able to explain why I can't feed her.
It's just going to be another couple days that I put myself in the "I have to do this, there is no other choice" mode and get through it. I count my blessings everyday to have had 2 hospital free years. Amazing! She is doing so very great right now, I know she'll just bounce right back, and hopefully have even better heart function after.

my sweethearts

2010-06-26T12:49:00.000-07:00

This is for no special reason in particular, it's just time. This is one of those just for me posts..:)
All about Benson at 41/2:
You still LOVE superheroes.
You newest obsession is Teenage Mutant Ninja Turtles.
You love to play outside, especially riding your bike.
You loved preschool and know all your letters and letter sounds and can write a few words, but you would not participate in your graduation. You stayed behind the door hiding when everyone else walked in the room. We were wondering where you were and you were nervous to come in. It made me smile because you're just like me. Then when it was time to say the poem I know you had memorized, you didn't say a word. Oh and you refused to wear your hat. But it was cute to me because it is just who you are.
You're so creative and imaginative when you play.
You love to make up stories and I could listen to them all day long.
You still sometimes confuse yesterday and tomorrow and I think it's funny.
Your best friend are Ethan, Jaden, and Eden.
I still have to buy pants with a built-in belt and usually tighten them all the way.
You love doing things with just Daddy.
You like to pick out your own clothes everday.
You like to make up words and then laugh at yourself.
It took you until you were 4 to finally be fully potty trained. You just simply did not want to stop playing to go. I'm glad that's over..
You like to eat with chopsticks.
You still love to dress up in super hero costumes, but not everyday like you used to. Sometimes you just need a cape and then you can imagine you're anyone you want to be.
You hate getting your hair done and having 'stuff' in your hair. It really bothers you and it's such a shame cuz you're so handsome when it's done.
You LOVE your sister and still always make sure she is okay if she's sad. Seriuosly, you amaze me with how kind you are to her.
If I put you to bed you always want me to sing "sweet little Benson".. you say "it's kinda a baby song but it's okay because it makes me happy".
You eat just about everything, but your favorites are probably peanut butter and jelly, potstickers, toast with honey, and ceasar salad. You are a great little eater and I am SO grateful that you are.
You could draw, color, and cut for hours. You even like to make your own books.
You love book of mormon stories.
You are sweet and compassionate.. you like to tell me that nobody is better than anybody else. You also tell me often when you see Bela's scar that you don't want anyone to cut Bela again.
I wonder when you will stop wanting me to kiss your owies when you hurt yourself. I'm so glad it still makes you feel better.
You teach me that learning is exciting and that there is something amazing in even the simplest things.
You're getting SO big, helpful, grown-up, and smart. It's exciting and sad for me at the same time.
You bring so much to our family and make us smile with your fun, sweet personality. You've always been so calm and easy and I am so grateful for your good natured little self. You are so loved little man, I can't begin to tell you how much.

Bela at 2:
You are truly amazing in every way. You're special, there's no doubt about it.
You have such a funny personality and you make us laugh everyday. You have so many expressions and we could sit and watch you all day.
You love to take baths and start taking your clothes off mulitple times a day yelling, 'Bath!'
Your favorite thing to say at the moment is "Look at that!" about everything! Your world is so exciting. It is becoming less of a scary place to you and you are much more comfortable with 'life'. You were very unsure about it for awhile and I don't blame you. It is just so nice to see you enjoying it more and more.
You still don't go to church with us because we want to keep you as healthy as possible. I miss you every week though and long for you to be in my arms at church.
You LOVE music. Some of your favorite songs are sweet little Bela, Old MacDonald, Wheels on the Bus, and Itsy Bitsy Spider. Hearing any of those songs always cheers you up.
You still do not eat everything you need by mouth but you have come SOOO far, and I am SO proud of you. Food is now enjoyable to you and it isn't a scary thing anymore. You just eat like a little mouse.
Your favorite foods are probably noodles, cheez-its, and yogurt.
You love your naps, but you go like crazy until it's time.
You love playing in the sand.
You like to go in the car, but not for very long. You're so excited to get in, then 3 minutes later you want to go home.
You love princesses and your pink ballerina skirt from Aunt Lauren.
You love the TV (too much). Your favorites are Dora, Caillou, and Diego.
You love books and to read, but like the car, you are usually only interested in a book until about half way through and then you want a 'new one'.
You don't like to be told no. You bury your little face in your hands and cry until I can't say no anymore.
You have angel eyes. Pure, sweet, and innocent. I feel closest to heaven when I'm with you.
You can say anything now and even use a few sentences, which is funny because you're so tiny.. 21 lbs tiny.
It's a struggle to get you to grow, but you are, slowly.
You will finally let the echo tech do an echo on you without screaming. It is a very nice change. And you are even getting much better about getting your blood pressure too.
You had your first doctors appointment a couple weeks ago where you didn't throw up from being so nervous. YEAH!
You are my greatest teacher. You remind me to be strong when I feel weak. You make me remember what is important, and when I look at you, it is easy to see who we truly are.
Sometimes when I hold you late at night when you are having a hard time going to sleep, I can't help but remember how hopeless we felt when you were first diagnosed. I can remember so vividly certain experiences we had with you, amazing and painful. You are here for a reason. I know that because you statistically shouldn't be here, and I have watched you pull through time and time again when you shouldn't have. You have been blessed and protected your whole life and it has been a priviledge to be a part of it all.
I can't express how lucky I am to be your mommy, and how much we love you.

Upcoming Cath

2010-06-26T12:14:00.000-07:00

I'm going to try to end my blogging slump.. Not sure why my posts have been so few and far in between.
Lots has been going on. We saw Bela's cardiology team just one month after the last appointment I wrote about because it looks like she's going to need a cath in July. This cath was very unexpected for me so it has taken me awhile to wrap my brain around it and get used to the idea. I DON'T want Bela to be back in the hospital and under anethesia and be cut again and of course whenever there's possibility of something going wrong, it worries me to death. But Cath's are something that I'm told she'll probably need about every year of her life, so I better get used to it. So anyway, I'm not sure the exact date yet, but it will probably be mid-end of July, and it'll be here way too fast. They need to get some real accurate measurements to get a better idea of what's going on in her heart, and they will most likely balloon open a portion of her aorta that is too narrow and causing pressure build-up for her only good valve. The only issue is, Turner Syndrome causes the tissue in the aorta to be very weak, so they are cautious to say the least about doing this, but they feel it is best.
So that's that. Some good news...IF they are able to successfully stretch open the aorta with the balloon enough, we may be able to push back her big surgery a WHOLE YEAR! So not next summer but the summer after that. That would be fantastic due to the snail pace of her growth. If she had a whole year to grow bigger, I would feel SO much better! We'll see.

As far as other news, me and my babies are in California at my parent's house for 5 days, and guess what?! My parents are actually in their house! (they live in Brasil and only come home a couple times a year) I feel like the luckiest girl in the world to basically have both my mom and dad to myself for a whole 5 days! I miss them so much being so far away. It's always SO nice to be home, and to have them here is just wonderful. Not to mention this PERFECT weather.. I just want to sit outside all day long! Love it!

Here's a couple pictures from Tanner's little bro's wedding day. It was such a great day and I couldn't be happier about my new sister!

Yesterday's appointment

2010-05-12T13:43:00.000-07:00

Yesterday Bela and I spent the day at St. Joe's. When I pulled into the parking garage she cried, 'no, no, no'. She was NOT happy to get her vitals done. She took off down the hall, threw a tantrum, then threw up everywhere. After awhile she calmed down enough to take her pressures. She loved her echo and happily watched Elmo during it, and smiled up at Gary who could sing along to every song.
The verdict: Tricuspid valve regurgitation looked slightly improved! Yeah!
Aortic valve still looked bad, and her upper (arms) and lower (legs) pressures were 18-20 points different, and they worry at 20-40 points different. Her aortic narrowing is causing the difference. I was told signs to look for if the pressure increases. I'm prepared, and I'm not worried. They may have to do a cath to balloon open the aorta if problems do arise before next surgery, but hopefully we won't have to do anything until then and combine everything with the surgery. Balloon the aorta, work on the valve, and do the Fontan surgery.
Surgery is tentatively scheduled for next summer, about a year from now. It was weird to hear that they sat down and discussed her case and came up with a date, but great to hear that it isn't for another year!
Her weight was up over a kilo! About 3 pounds! We exchange progress eating orally for pounds gained, but it'll all work out in time..

Overall it was a good appointment. I am so grateful for the care she receives and the investment they have taken in her and her little heart. She is loved there and we so love them..

I talked for a minute to a 29 year old woman sitting in the waiting room. She had just had pacemaker wires put in over the weekend. She had had 4 open heart surgeries during her life and said she's going strong. She said 'your daughter has a much better chance than I did when I was born, and I'm doing great." I struggled not to cry and told her thank you. Sometimes in between appointments I want to forget that there are things going on inside Bela's heart that are terribly wrong, but appointments force me to face it all and bring all my fears right up to the surface. It's always overwhelming to me, and I was grateful for her encouragement.

Photo session...

2010-05-04T15:04:00.001-07:00

...capturing my sweet, creative 4 year old and my adorable, miraculous 2 year old.

silly babies

2010-05-04T15:01:00.000-07:00

Bela's birthday

2010-05-04T14:45:00.001-07:00

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New pictures

2010-04-13T21:09:00.000-07:00

My friend Rachael Earl (mycameralovesyou.com) took my kids pictures tonight... and already got some up on her site! I'm in love with these first two..
Love their faces.. it's so them.

This one I love because we can sometimes find Benson in Bela's crib with her giggling and laughing after we've put them to bed. If Bela cries at all, he'll take it upon himself to go in there and make her happy. I want to discipline him, but when he says, 'I just didn't want to hear her crying', I can't. It's so sweet and I'm glad we captured them in there being so cute with eachother..

SO Benson:

I'll post more when I get them..

Happy Easter!

2010-04-04T21:29:00.000-07:00

Today was such a great day. Conference weekend is my favorite. I am always uplifted and inspired to be a better person, and more specifically this conference, a better mother. A repeating theme, at least to me, was loud and clear: My work as a mother is the most important thing I can and will do in this life. I am grateful for a prophet of God who gives me the same counsel that He would give me if He were here. I have really thought a lot the last two days about being a mother. I think I take it for granted, and maybe even sometimes wonder what the heck I'm doing! Benson and Bela bless my life in a way nothing else could. They stretch me, try me, test me, help me, teach me, and in the end make me a better person and allow me to feel pure love. I am grateful to be a mother. And I realize the great task that it is. It is my responsibility to teach them to be good, Christlike people, and to understand who they are. I have been thinking about the idea that actions speak louder than words, and that my example will teach them more than anything I could ever try to tell them. Am I spending my time doing things that will result in them knowing what is really important in life? Do they know how I feel about my Savior through my actions?

It is so easy to forget sometimes how blessed I am. I thought today about the prophet Joseph's wife Emma losing 6 of her children during childbirth or in infancy, and then, of course, her husband. Not to mention everything else she endured so well. She is one of my heroes. I have so much to be thankful for in my life. I am trying to push out the fear I sometimes feel about Bela's situation. Fear and worry do me no good, and faith cannot grow where fear is present. I need to move forward in faith and put my trust in the Lord. I am going to try harder to stop thinking about the 'what if's' and the 'when's' and 'why's', which for me is a hard thing to do, but the only thing to do.

As for little Bela, she has stayed well since my last post and has been doing outstanding. After she lost some weight eating on her own, I have decided that it is MUCH more important for her to get some meat on her skinny little bones than push eating right now. In the last month she has gained the weight back, plus 2.5 pounds!! We are feeding her overnight again and although it has it's challenges and annoyances (is that a word?) it is really helping her right now. It seems like she's been constipated the entire last year, but since we started nighttime feeds again it hasn't been an issue. She just simply wasn't getting enough food or liquid. I have seen an increase in energy and better health this last month. Her little body works so hard just to be here, so I can definitely help her out by giving it optimal nutrition. She's certainly the healthiest eater around here. Developmentally she is doing fabulous, testing in her own age group. She says everything, I can't even count her words anymore, and loves to make her point clear. However lately, the only point she wants to make is that she wants to watch Dora, by repeating it a thousand times. And if I don't respond right away, she'll put her little hands on my cheeks and put her face so close to mine our noses touch and say, DORA, OKAY? She's got the best personality. She is doing better going new places and meeting new people lately as well. I have nothing to complain about, and everything to be thankful for.

P.S. For my birthday my wonderful husband got me a MacBook and I feel like a new person. This was the fastest post I've ever done without the computer freezing up on me 5 times. You just might be hearing from me a lot more now... :) I'm out of the dark ages!

...ups and downs...

2010-03-08T22:52:00.000-08:00

Mostly ups, no serious downs. I guess the downs have been mostly mine and not really Bela's. Anyway.. more on that in a minute. At her cardiology apt last week she once again had a fever of 103, puked everywhere several times, got her blood drawn, and we sat and waited to hear if we would be driving home that day or walking over to the hospital to be admitted. After an hr the blood work came back 'okay'. For some reason it has really taken a toll on me. As I've talked to my mom and close friends about it, I think what has me the most 'down' is that I just never anticipated things to get more difficult as she got older. In many many ways, things are better. But in many other ways, it is just getting more and more difficult. I don't think I ever really thought about what all this would do emotionally to Bela. She is terrified of new people and new places, often making herself throw up from fear. A few weeks ago I took her and Bens to the library, a place Benson knows well because I took him there all the time before Bela was born for story time. When the doors opened she freaked out, turned and tried to run away only to trip and fall flat on her face. I had Benson go in with the rest of his class and took Bela outside to rock her. It was just so sad to me how scared she was of this new, big building. Just the fact that she had to be scared in the first place. She never did relax either the whole time we were there. At her cardi apt she was so worn out by the time they drew her blood, she saw what they were preparing, burried her face in my chest, stuck her arm out and said, 'okay' through her tears. Can I just say it BROKE my heart into pieces!! Dr. visits and tests and procedures were always hard, but I never knew how hard they'd be as she started to understand what was going to happen to her. THe fear in her eyes, and feeling her body shake when I get her out of the car at doctors offices is so hard. She says over and over, 'home'. Many of them don't even do anything that hurts her, she just dosn't know that, so she is terrified of what might happen to her. It's just getting so much more difficult for me to 'accept' the life she has to live as I start to see it affect her little personality. I know it is her life, and she is here because of everything she's had to go through, but as her mommy, sometimes I long for it all to go away. My mommy protection is off the charts for her, and when so many times I feel I have 'failed' to protect her, although I know I can't do anything different than what I'm doing, it is still tough for me..

She was also down almost a pound and a half in weight. ugh! She was eating mostly on her own...now we know it wasn't enough. It's very frusterating considering that most days it is still my entire life--feeding her. I can't seem to get enough calories in her by tube feeding without making her vomit them back up, and who wants to live like that? It's not fair.

But none of these things outweigh how amazing SHE is. Just her--no eating issues, no bad heart. Although she has trust issues, fears and anxieties that no 2 year old should have, she is overall a happy and precious little girl, and I am SOO grateful for those beautiful days when she can just be 2. She loves to be home, 5 minutes into any trip she is already asking to go 'home'. She knows she is safe here. SHe is happy here and loves to be with her family. I love to be able to provide security for her. She currently loves Diego, princesses, sand, Tinkerbel, chocolate, dancing, and cuddling.

It was very sweet to quietly celebrate her 2nd year of life. What an UP it was!! I knew this year that a big party would not be her thing, so a simple family party was perfect. Mostly we just held her a tiny bit tighter, kissed her a few more times, rocked her a few more minutes, as we marvelled at how much she has changed, blessed, and beautified life. I love her more than I can say. I have been there, by her side at every single doctor appointment, blood draw, IV stick, recovery, illness, ER trip, echo, vomit, withdrawal, therapy, xray, study.. and I can honestly say, as I know I've said before, but even more now at 2 years old, she is my hero. For all she has to endure just to live. It inspires me.

Well...there you have it. My current, raw emotions. My hopes, my fears, my ups, my downs. When all is said and done, that's life! And there would be no ups without the downs, right?!...

Ethan's Run!!

2010-02-12T15:10:00.000-08:00

PLEASE, PLEASE, PLEASE, if you don't yet have plans for Saturday consider running or walking in Ethan's run with us. Ethan's mommy put together a 10K run and 1 mile walk event to celebrate when he would have turned 1 year old, and to benefit the hospital where he spent most of his life. The proceeds will benefit families that have long term hospital stays with their little ones. It will be so fun and it is for such a GREAT cause! And it's right here in the east valley. Ethan's family have become close friends and we are excited to support them in this..

In Ethan's mommy's words (who can explain it best):
The FINAL COUNTDOWN is on for ETHAN'S RUN: HOPE FOR HEART DEFECTS! Please help spread the word. It has come together very well. The event is in the community of Las Sendas in NE Mesa. Please enter from Power & Thomas Rd. and plan on arriving by 8 (so not to cut it too close).

If you didn't notice, the fun/run is now ONLY A 1 MILE. Sorry if you were planning on a two miler, but I just couldn't make it work without messing up the 10K. There will be complimentary snacks, drinks, and messages for the 10K runners. The fun zone (8am to 11am) is at the park w/ free bounce houses, and tons of play equipment. Tropical Smoothie will be there, and the newest edition is a PANCAKE BREAKFAST for purchase! And of course, CUTE SHIRTS to all registrants. There is day of registration w/ cash, but shirts are not guaranteed. To pre-register go to my button on the side and it will connect you to online reg! Thanks to all the sponsors and those who are helping to make this a great event! If you can't make it, just try to always spread Congenital Heart Defect Awareness! It is the number one birth defect and the number one cause of infant death from birth defects.

click HERE to register

Baby Mine

2010-01-19T19:03:00.000-08:00

Track number 1 on the cd that is almost always in Bela's CD player is Baby Mine, by Alison Krauss. Jenna, Lily's mom, made us the CD during Bela's second surgery. Every song on that CD does something to me when I hear them. They stir many memories for me. I sing Baby Mine to her every night as I rock her before she goes to bed. She snuggles right up to me, it is my most favorite moment of the day. Tonight was particularly tender for me as I thought about little Lily, born the same day as Bela, in a hopsital bed recovering from her 4th open heart surgery. It is amazing really, that someone so little can endure so much. My thoughts and prayers are with her and her mommy tonight.

I am extremeley grateful tonight for how blessed we've been. Bela's health has been amazing lately considering all that is against her. Sometimes it's so easy to want to believe that it's all not real, that she is a whole and healthy little girl.

When you've imagined life without your baby girl, EVERYTHING, every moment, every tear, every word, every laugh, every second is precious.

All better!

2010-01-10T19:12:00.001-08:00

This little girl.. she sure does know how to throw us for a loop. After 10 days of not being herself, she has totally rebounded 100%. She is back to her beautiful enegetic little self and I love it!! I missed her! I hate all the worrying. She has been so happy the last two days. Just tonight we played peekaboo and chased her all around the house as she giggled her little head off. So whatever it was, it never got too bad and went away! Horray! I just hate when the words heart failure are mentioned...they are sickening words to hear!

It's been way too long since I posted pictures of her and of Bens.. So I'm gonna go way back..

Halloween (WAY back, I know)

Bens's bday party. My little man is 4!

Some random shots of the last couple months:

And just as I was uploading some christmas pictures, my computer has decided to stop working right. I'll try again tomorrow..

waiting for good news

2010-01-07T12:17:00.000-08:00

Update:
Great news! No sign of heart failure.. BNP looks "beautiful" in Beth's words.. YEAH!! I honestly wasn't even worried about heart failure until it was suggested.. I'm glad that's over and it's ruled out! We're assuming its just something viral she's fighting.. life can resume..:)

It's been a rough couple of weeks with Bela. We've all been worried.. something isn't right but I can't put a finger on it. She just hasn't had that usual sparkle in her eyes or her normal bubbly personality. She's been really tired, quiet, and calm. But she never had any other symptoms. I ALMOST called her doctors several time, ALMOST wrote or texted Beth, but everytime I'd be reassured by a little spark of energy that would last for an hour or so. I just havn't been sure what was wrong. Bens was sick after christmas and I just was sure her body was just fighting something. And it could be..
I've had her into see most of her doctors this week to thouroughly check things out. Ped told me to go see cardiology (figures). GI surgeon thought her feeding tube looked very chronically inflamed and red. Her darn tube is always giving her problems. So she gave me some medicated pads and changed out her button. Told me it shouldn't be the cause of her current behavior though. Today we went to see her cardiologists. Echo looked okay, not horrible not great. Bela started out the apt. literally freaking out like I've never seen her freak out before. She was so upset at anyone that came near her that no one could get any vitals on her. She fought and screamed and kicked, puked everywhere, and then all the sudden she was comptlelty wiped out and pretty much laid like a rag doll over my shoulder for the last half of the appointment. She was half asleep on me and just limp, which is not normal for her. Shes usually halfway down the hall playing peekaboo with the nurses and techs. SO.. after I'd explained the last 2 wks to Beth she thought we should draw blood to get a BNP number, the number that tells if her heart is in failure or not. So here I sit, cell phone and house phone close by, waiting for it to ring.
As I held her down for what felt like the hundreth time as the needle was moved around in her arm trying to find her tiny little veins, I felt that same desperate feeling I always get when I'm so helpless to help her. I wish I could take it all away for her. All the pain that she dosn't understand. It is just so heartbreaking for me, there aren't words to decribe the feelings. As I've said before, she is my hero. This may sound wierd, but sometimes when she is just acting like her adorable baby self, it just dosn't even seem right. To me, she is so wise, so mature, so seasoned for her little tender age. Like she should all the sudden open her mouth and just start saying something profound and amazing. I know that probably dosn't make sense, but it's like this mature spirit is inside her little baby body. I have just learned so much from her already, been so changed by her life. It is frightening to think there could be a problem right now because I am nowhere near ready for one. But are you ever?

Latley..

2009-12-02T12:48:00.000-08:00

It's been awhile...
It's hard to believe that Thanksgiving has come and gone and we're only a couple weeks away from Christmas.. I love this time of year so much. Thanksgiving this year was so full of gratitude. I'm so grateful for my two angels.. One protective big brother and one sweet, spunky little girl. It's been so fun to see them play more together and get excited to see eachother. Bela can hardly wait for Benson to wake up in the morning. She always tries to sneak away and go knock on his door. She'll start up the stairs and I'll ask her where she's going and she'll say 'no,no' because she knows what i'm going to tell her. When he wakes up she squeals and giggles.

She's saying so many words and tries to repeat everything we say. She calls herself 'Wewa' and is usually carrying around her 'bag' or her baby. She's such a girl, her favorite word is 'pretty'. She is still obsessed with Yo Gabba Gabba. She wants to be bigger than she is, she wants to be a big 2 year old, but her tiny little body stops her from doing some 2 year old things. She tries riding her bike, but her legs don't even come close to reaching. I'm pretty sure they don't make bikes for 10 month olds? We very lovingly call her 'little'. She finally reached 19 lbs. As you can imagine, it's very difficult to try to get her eating by mouth and growing at the same time. There's a lot to balance. She needs enough food to grow, but also needs to be hungry enough to want to eat. If I feed her by tube at all during the day she dosn't want to eat. If she could she would survive on snacks every now and then when she feels hungry. A couple pretzels, some goldfish, cheezits. She will usually eat a pretty good breakfast, usually some kind of yogurt and toast, although she's starting to eat eggs, cereal bars, waffles, and pancakes. She likes pudding, mac n cheese, chicken, and snap peas. Very random, I know. She continues to keep me always guessing and wondering, as well as busy. Feeding her continues to be very time consuming. But she has stayed healthy and is somehow full of energy.

Speaking of healthy.. she is healthy until I take her in to get her montly RSV shots. Is any other heart mom as frusterated as I am with RSV shots? We try so hard to keep her healthy (and she has been, thanks to never leaving and serious sanitizing), but then I take her to get that shot and she's sick for a week. Really sick. Horrible, thick congestion, cough, fever, dosn't sleep, no energy. It's like they give her full blown RSV every month. Ugh. I'm seriously tempted to stop (she's supposed to get 4 more). Her reaction combined with my feelings towards vaccines make it very hard for me to take her in there each month. I literally force myself in those doors.
BUT, whats a heart mom to do? Sometimes I wish I wasn't the one who had to make all the decisions for her. But I don't make them alone and I'm grateful for that. Although I still worry about her so much, life has seemed to slow down so much lately and there is so much less stress. It has been wonderful to say the least. With her NG tube gone and her throwing up very minimal, it is like a whole new life. We only have to see the cardiologist every 2 months and she continues to get wonderful feedback from doctors. We couldn't be happier. It's amazing to witness a miracle every day of my life.

Hope you're all having a very merry Christmas time!

Cardiology

2009-10-02T22:36:00.000-07:00

We went to the cardiologist yesterday and had another terrific appointment. Bela showed off her new walking skills to everyone and cried whenever anyone got close to her. That's my Bela.. She was up in weight! :) Her current weight is 18 lbs 11 ounces. Maybe by her 2nd bday she'll be legally turned around in her carseat..
She got to skip the echo because when I got there for her echo I was told she didn't have one. She really did there was just some confusion and by the time it was all figured out, it was late and they let us just skip it... I wasn't complanining, although it always nice to know her heart was seen by her doctors. We go back soon enough tho..

Today was day 2 for Tan's trip.. Feels like much more than that. He's in Brasil.. probably on some beautiful beach soaking up the sun. I'm so happy for him to be there.. he deserves it so much.. nothing makes him as happy as Brasil (besides us :)). I only have (ugh) 9 more days to go. I hope I make it through sane. I knew I'd miss him, but I didn't think I'd be so worried about him!
Next year hopefully we'll all join him..

I did wish that he were here about two hours ago when I noticed Bela's button was practically hanging out of her tummy. I tried to pull water out of the balloon that secures it in place and sure enough there was none. So I quickly grabbed a new button and a syringe with water, pulled out the old one and put in the new one. I didn't even have time to think or stress because it had to be done right then and I was the only one around. Since she got it put in I have worried about the day that I'd have to change it myself. IT's been changed once but by the dr. and she did NOT like it. But tonight it was a breeze! She didn't even cry and it was so fast and easy! It's healing nicely and I'm so glad she's got a clean, new button. The balloon on the old one had popped! Kinda scary! I'm glad I was home with my supplies right there or that could've been bad... Makes me want to carry around supplies for it all the time... Or maybe she could just start eating.. Progress is being made. She sits at the table with us and asks for bites. She'll chew them all for about 15 seconds then more often then not spits them out. But some are actually swallowed. She is much more open to putting new things in her mouth tho and trying anything, which is a very good step.

That's about it! Anyone feel free to stop by or call this next week... :)

This shirt

2009-09-23T11:39:00.000-07:00

At my baby shower for Bela I got gas cards, gift cards, books to read at the hospital, things that you'd get someone in my situation. I mean.. what do you get someone that isn't sure if the baby will live or not?

I also got this shirt..

It is a size 12 month. I don't think I've ever said anything to the person that gave it to me, but getting this shirt meant so much . 12 months! At the time I could only dream and hope that she would someday wear a size 12 month shirt. I hung that shirt in her closet.. it was my hope shirt.

The day it fit her was a day of pure joy for me! We went down to the park that day and saw some friends.. I wanted to share the significance of that little shirt she was wearing, share what that REALLY meant. She has worn this shirt many many times over the last few months. She spilled on it and got it dirty, just like she should. And yesterday I just put this shirt away in a box with all the other clothes that Bela has grown out of..

Amazing...

Train park!

2009-09-16T08:38:00.000-07:00

They loved the train ride.. Just got a little nervous going through the tunnel..

Swinging!

2009-09-11T13:18:00.000-07:00

Paul Cardall got his HEART today!! It's a day to celebrate in the heart world!!

what we've been doing..

2009-09-03T20:26:00.000-07:00

Waking up to this sweet bundle of pink..

The many looks of Benson.

Working on Bensons new batman room:

He loves it!

Playing in shaving cream

At the beach! Bela LOVED it all!

hangin out.

Eating lots and lots by mouth!

Big Ouchy!

Diamondbacks benefit game for the Heart Center.. There was a great turnout!

Cardiology visit

2009-08-25T09:03:00.001-07:00

Cardiology update

2009-08-24T10:00:00.000-07:00

Thursday's cardiology visit was great! For the past year or so we've been watching a leaky valve and the pressure in her aortic arch. For a little while there they were both considered moderate/severe, and there was talk of cath and talk of early surgery (20-24 months). The last few visits is went from moderate/severe to moderate to moderate/mild, and then on Thursday, completley MILD!! Beth asked us what our secret was, and Dr. Pophal said her echo looked fabulous, better than it's ever looked. If you've ever taken your baby in with that nervous pit in your stomach then you know what hearing that feels like! I wanted to take a couple victory laps around the office! I thought there was a good chance an upcoming surgery might be tentatively scheduled for the next couple months, and the thought of having that planned was just making me sick. But Beth told us that there was no way they were going to do anything with Bela looking as good as she does. Her heart just keeps looking better and better, and so there is absolutley no reason to do anything right now!! HORRAY!! They said MAYBE when she's 3 or 4, but not to even think about it for a long time!
Weight wise she was only up a few ounces, but she was up. I am going to consider that good. Beth isn't worried about her weight anymore and so neither am I. With regards to eating, I am going to start a feeding journal for her that I will be posting. I am going to be aggresively working with her oral eating. I think she is ready. There are a variety of foods she will eat now, and she is eating enough on her own to push her. I am not going to put anything (besides meds) into her tube during the day. I am just going to let Bela eat when she wants and how much she wants and write it all down. Of course there will be lots of assistance and some pushing (no forcing), if Bela really only ate what she wanted to eat it would be an ounce at each meal. It is going to be a lot of work for both of us, but we're going to see what happens. At night I'll give her an extra feed or two when she is asleep to get a little more calorie in her, but during the day she'll be eating all on her own. I did a couple trial runs last week and she did awesome, til she got sick. Her cold is pretty much gone now so yesterday was our first official day. Here we go.. Wish us luck!

Another Angel

2009-08-21T09:52:00.000-07:00

Ethan returned home this morning.. Please, say a prayer for his family today.
What a courageous and strong boy, and an incredible 6 months on earth. We will miss you buddy..

I hate germs!

2009-08-20T08:59:00.000-07:00

Bela came down with something again.. SIGH...
Despite her hospital time, I think the thing that delays her the most is how often she is sick. I worry about it a lot.. how much can one little body, one sick little body, take? It seems like we just get a couple weeks of health in between being sick. Today will be day 3 which is usually always her worst day. She was up last night from 2 a.m until 6 a.m. I stayed up til midnight to feed her one more time because she didn't get enough calories or ounces in the day, and then at 2 am she was crying. She just wanted to be held and was okay if she wasn't put back in bed. SHe was however wheezeing a little when she breathed and she had a nasty little cough that sounds too much like croup. I could handle it until about 4 and then Tan took over. He took her downstairs and watched TV with her and at 6 he woke up to her head right up next to his, sound asleep. So sweet..:)
I already had a cardiology apt. scheduled for today so we'll go in at 2 and see what they think. I'll be glad to get a look at her heart and make sure everything is okay. And I hope the scale is nice today!! We've been working so hard for some weight gain!
Hoping it's nothing serious and that she'll be back to feeling good soon! I just don't understand how she catches EVERYTHING?!?! Maybe we're getting too relaxed. The last three weeks we have taken her to church with us all three hours. Maybe she's touching too much stuff while she's there and we should go back to going home with her... I dunno. It dosn't seem like all the other heart babies get sick as much as Bela.. am I wrong?

Rocking Chairs

2009-08-14T14:49:00.000-07:00

I want to share this.. This is part of a posting off Paul Cardall's site.
A quick background on Paul: Paul was born in 1973 with a single ventricle, just like Bela. He has lived and survived longer than most. But his heart is now in failure and he is waiting for a transplant. He is married and has a daughter, Eden. If you want to be inspired and uplifted, read his blog!
This post just made me appreciate the little moments I have with my family more, and I thought it might do the same for you...

Our rocking chairs:

In lieu of our situation I said to my wife, “Go out and by our rocking chairs. I don’t want to wait to grow old with you. I would love to sit with you on the porch today!”

Lynnette brought home two beautiful chairs. The only problem is that we need a third chair for Eden. My sweet little girl is jealous and wants her own chair. She cracks me up. And so, tomorrow we’ll start looking for a third chair. The store evidently sold us the last two black rocking chairs. I'm sure we can find a pink one for our little diva.

Today

2009-08-14T13:56:00.000-07:00

Thank you everyone for being so nice to me!! I have the best friends in the world... I got so many kind comments after my downer post and it has really helped. I had a rough go for a few days. Well...I'll say more like a few weeks. I was just struggling with my own attitude and things were just getting to me a little more than normal. The vomiting nonstop there at the end was just what took me over the edge. After I spent and hour making it and feeding her, 10 minutes later as she's crawling on the floor, happily playing, up it all comes and all our work is wasted!! (and there's a big, stinky mess to clean up!) She didn't get any of the food I made, or calories I counted. And I am left just plain frusterated. That was how that month was going, and Benson was just being hard because he wasn't really getting too much positive attention. But...

this week I just decided I didn't want to feel like that any more. I honestly was not enjoying being a mom. And so I have tried so hard to rethink a lot of things that happen around here. I approach asking Benson to do things differently, and I try to make him laugh instead of cry. Help him pick up and make it a game instead of asking him 10 times, end up yelling and giving him a time out. I can't tell you what a difference this week has been! Just by trying to not get on him for all the little things that didn't really matter anyways.

And Bela is doing much better. I need to clarify that in my last post when I said 'formula' I was referring to Pediasure. I took the pediasure out of her diet completley and she has been throwing up much less. So we'll hope that continues. I think it was a combination of that and possibly a little stomach flu. It still comes up once a day or every other day. There was a time that I just wanted to be able to hold her, and I couldn't, and now she is lighting up our home. So a little throw up is okay.

And thanks to all your comments, I have totally realized that it was so DUMB to get so worked up over a GI appointment. (THis same GI doctor prescribed a med to Bela that turned out to be extremeley dangerous for a heart baby! Luckily I called to check with the Cardiologist first.. It made Tanner and I furious. So beware heart mommies, and always check with the heart docs first.) I really know by now that every dr. has his/her own opinion and they'll all give them to you, and sometimes they are just not right when it comes to Bela. We will continue what we're doing and learn from eachother along the way. We're a good team, her and I.

I am remembering how much I treasure my role as a mother. How important what I'm doing is. I have to give credit to prayer and scripture study because they have truly helped, once again.

Here's some pictures of Bela with her friend Addie who has come SUCH a long way! These two are heroes, they are both living miracles and have made medical history! Bela was the first to have the hybrid procedure here and survive and Addie was second, one month later. I love seeing them together!

I am really struggling with remembering to take pictures right now, and I promise (mom) that I'll get some more up soon!

The heck with formula

2009-08-06T06:52:00.000-07:00

I just heard Bela on the monitor and walked in to her room to find her gagging and retching and trying to rid her body of thick, nasty formula. For some reason, her body does not like the stuff. It was so thick she was choking on it as it came up and her poor little eyes were all red and bulging from gagging so hard. I picked her up and cleaned her off and held her little trembling body for awhile til she fell back asleep in my arms. I havn't mentioned her throwing up lately on the blog, but she still is, a lot, and I am SICK to death of watching her do it! It's so sad that it's not what she's choosing to put into her body that she's throwing up, mommy pumps it in her and how should I know when it's too much? It's sooo aweful, I feel so bad.

So we went to the GI doc yesterday (a brand new doctor who had just met Bela for the first time) who told me that she wasn't growing quickly enough. She had only gained about 4 grams a day and she's supposed to be gaining about 25 grams a day. Oh really? I didn't know that, no ones ever told me that before..

So of course she tells me I need to up her intake and calorie count. UGH! I just want to yell! I can't even get her to keep down the calorie intake she's already on! It's just too much for her! She's not just your 'average' baby! I know she's not growing great, but what am I supposed to do when what I am already feeding her is not enough, but she can't keep it down? So they suggested I try higher calorie formula at the same rate all night long. This is my 4th attempt with trying the higher calorie stuff and the 4th time she has forcefully vomited it, so I am done trying..

I have been feeding her a mixture of formula and homemade blenderized stuff. She keeps the stuff I make with real food down so much better than the formula, but let me tell you, it is not the easiest thing to do. I have to figure out calorie, protein, carbs, and fat grams for each meal I make and make sure they all total enough, but not too much. I also have to keep track of the vitamins and minerals she's getting(zinc, calcium, vitamin D and all the rest). Very time consuming. The end product is usually pretty thick, so I have to manually syringe it in her tube which takes about 45 minutes, and usually more than once it pops out of the tubing bc it's so thick and squirts me, her, the furniture, the carpet, the ceilign, and whatever else is in a 1 mile radius becasue I'm having to push it so hard. So sometimes I just want to substitute some formula in cuz all the work is done and it can be pumped in with no mess! But she hates it... So I'm a little stuck...

I saw My Sister's Keeper with some friends the other night and I could'nt help but see myself a little in it. In the beginning where it says that everything looks okay from the outside, but on the inside, there are cracks. At any time, your whole world can change. In the hospital scenes. WHen she said that having a sick child is a full time job. In the neglecting of the other kids.. you never mean to do it, but it just happens when one child has so many more needs. How she fought til the end and could never let go. I dunno, it made me think a lot.. For better or for worse, this is our life right now and I don't want stress and worry to consume it. There's times I've been better at dealing with it and times when I'm not so good at it. I think I need to reevaluate how I'm handling things right now and try to let the not so important stuff slide off me a little better. Whether I like it or not, I have to sit in doctors offices weekly that do things to her she dosn't understand right now and dosn't like. I will watch her time and time again cling to me and look at me with tear filled eyes. I will watch her vomit probably daily, until we can figure out how to get her eating and growing more regular. I will watch her struggle to do things that just come naturally and easy for other kids. She will miss out on a lot of things in life. BUT, there is SO much she will do. So much is IS doing. Once again, as I sit and think about her, she inspires me. She always waves to everyone and flashes them a smile when we go into any apt. She takes it like a champ, until she's just too scared to smile and wave anymore. But everytime we're done we walk out and I say, All done Bela!! You did so good and I'm so proud of you!! And she smiles and does her all done sign as big as her little arms can do it.

All done for now.. until next time.

Baby Ethan

2009-08-05T07:28:00.000-07:00

I havn't had to request prayers for one of our heart buddies in awhile, but sweet baby Ethan is having a rough time right now. He and his family need prayers. He is under our heart friends if you'd like to read about his story.

2009-08-05T07:19:00.001-07:00

Saturday August 22 @ 3:30pm. Come have a dinner picnic on the field, run the bases, tour the dugouts, get tickets for a 2009-2010 game, professional pictures. . . ALL INCLUDED while watching the Diamondbacks and Houston Astros game live on the jumbo-tron! We are selling tickets to this event to help raise money for the Heart Center at St. Joes. The Diamondbacks foundation will donate $20,000 to the Eller Heart Program at St. Joe's. Tickets are Adult $45, Children over 3 are $35. If you are interested in attending this, please let me know by Friday August 7th and I will get you tickets. Email me at averymilne@yahoo.com for more info.

Much happier!

2009-07-20T20:46:00.000-07:00

Since Friday afternoon Bela has been doing so much better! Two days of shots and she was feeling much better and has been sleeping and eating since. Yeah! (by eating I mean being tube fed and not throwint it up.) Everytime we make some progress with eating orally, she gets sick and by the time she starts feeling better it's like we've started over. I think eating is just such a bother to her, since she's never really had to do it herself. She just dosn't want to stop for 2 minutes to eat.
Anyway, it is nice to have her back, we missed our happy girl. She is back to blowing kisses, waving at everyone, saying baby 500 times a day (her favorite word), crawling over to the bath pointing at it and saying "ba!", dropping everything so she can say UH-OH, and climbing up the stairs..

Since we've been home...

2009-07-16T18:42:00.001-07:00

Bela has been SICK. It's been so long and I forgot how much I hate seeing her suffer.. She's been sick for almost two weeks now, and yesterday it just got so much worse. Vomiting 24/7, exhausted but can't stay asleep, congestion, fever, u name it. She has another bad ear infection on top of something else viral. So took her in today for a shot of antibiotic to try to speedily get her feeling better. It was a long dr.'s visit, and for some reason I decided to have a breakdown during the shot portion (and awhile after it too). I hate when the nurse tells me to hold her down good because it's a really big needle and it'll probably hurt her a lot. And then to watch her for wierd breathing, which I thought was scary enough, but then she adds apnea (periods of no breathing). I'll take wierd breathing, thanks. Or rash all over her body or her leg swelling up. So that coupled with her incessant crying, 3 hours of sleep the last three nights, I just had a cry. The worst part is I have to go back the next two days and do the same thing! Poor girlie.
So she's tucked in her bed, compltletly zonked out, with continous feeds going that I HOPE will stay down because she hasn't really hasn't kept one ounce down or had a wet diaper.
The frusterating part is that we try SO hard to keep her from germs. She rarely leaves the house, we wash hands and sanitize, I try to bathe her soon after we come home from anywhere germ friendly...
She'll get better again..
Her cardiology apt last week went well. No change in heart function, everything looks okay, but the tricuspid valve is still real leaky. In 7 wks however she did not gain ONE ounce! What else is new tho.. :)
I'm grateful we're doing as good as were doing...

California

2009-06-27T13:21:00.000-07:00

So sorry for the lack of updates.. We are in California for a little getaway and it has been WONDERFUL! Bel is doing so fabulous right now. This week I am at my parents house visiting while my mom is in town from Brasil, but tomorrow we're heading down to San Diego for a week at the beach. I remember when we were in for her G-tube surgery, her nurse Rhonda told us that this summer Bela would be sitting on the sand in a bathing suit having a blast at the beach... well, here we are! She's ready with her toes painted pink. :)

Nothing new health wise to report.. thank goodness! She has managed to stay 'well' for an entire almost 2 months now! I am so grateful everyday for the many many prayers offered on her behalf when times weren't going as smoothly. It is wonderful to be where we are, but there is not a day that goes by that i do not remember those days.. They make days like today so sweet.

An update and a thank you

2009-05-29T08:32:00.000-07:00

Last week Bela got an 'everything looks great, see you in six weeks' from her dr. The echo showed her aortic pressure down to 10! That's a great number for Bela. Her valves are still leaking, so the consensus is that we may have to do an earlier Fontan than originally planned to fix that problem. They'll have to do the Fontan work plus some work on the valve at her next surgery. But everything is looking great leading up to that, and her heart will tell us when it is ready for more work. Driving home I physically took deep sighs of relief. I wonder if the worry and nerves that I feel leading up to an appointment will ever lessen! As I drove home I couldn't stop thinking about how strong and fragile my little girl is all at the same time.

She continues to amaze us. She is full of energy and loves life. The mickey button has been the best thing for her, I can't believe I even stressed about what to do! There has not been one second that I have second guessed our desicion to get the g-tube. She is so much happier. She's still eating about the same..somedays she thinks eating is great, somedays she would rather not have one bite of anything. But it's okay now because she can just take as much time as she needs and she is learning that eating can be enjoyable and that is all that matters. She still hasn't hit the 18 llb mark, but we'll get there soon..

I havn't done this and I wanted to publicly 'spotlight' and thank a few people that have each given us a beautiful gift, a piece of themselves. As lot of you already know, there have been several people that have donated breastmilk to Bela. Because of her delicate and unique system, she tolerated breastmilk so much better than formula. When the word got out that I was running out of my own supply and didn't know what to do, there were some amazing people that stepped up and donated their own.

First, an amazing person I DIDN'T EVEN KNOW, Carrie, produced a good amount of milk and offered to donate some. She would get up in the middle of the night to pump milk and then donated that milk to us. Can you imagine? Waking up in the middle of the night a couple times to pump milk for someone else's baby you don't even really know? I had a hard time getting up at night to do that for Bela! I don't even know how to thank her.. she fed Bela for a solid 5 months of her life. It's selfless and incredible, and it got Bela through a very difficult time.

Keisa, sweetheart Eden's mommy donated all of the milk she so lovingly pumped for her baby. I can only imagine the sacrifice that was, to pump through all that she went through, and then have to give it up. Every drop was used with so much gratitude. I never got to meet Eden, but I know she is such a beautiful, perfect little girl who has touched so many people.

I received milk from several women in my ward who would pump some extra milk here and there and periodically drop it by. I always found it difficult to keep my emotions steady when someone would knock on my door with a bag of milk.. SO COOL!

Jersey's mommy Heidi shared some of her milk with Bela as well. Jersey endured so much, taught everyone while she was here, and has definatley left her mark on the world, just like Eden. THere was always a sweet spirit in her hospital room, she is such a princess!

Then there's Jessica's milk that I just recently recieved. Jessica passed away last week. She was born prematurely in February and weighed only 1 llb 10 oz. What an amzazing little girl to endure and fight so much in her lifetime!

I am so grateful to these people for what they have given us. I feel like Bela will always have a little piece of these sweet babies with her, and that she is a stronger person because of them. It has been sad for me, to accept the milk often on the same day they just sent their baby back home. Sometimes I even feel some guilt. But I hope they know how much it meant to us, and I'm grateful they chose to be so selfless at such a difficult time. Thank you!

2009-05-19T17:36:00.000-07:00

Tribute

2009-05-05T12:16:00.000-07:00

There's a tribute to Bela on themeanestmom.blogspot.com today.. Thank you to whatever wonderful person thought I deserved to be nomitated! The meanest mom is a popular mom blog, and she is tributing moms for the month of May. I was honored to be included! And excited about the give-a-ways! I thought I'd post about it bc I love what she wrote about my little one..

I am back and LOVED every minute of my trip.. I have to get us ready to leave for a dr. apt. soon but I will post about it later.. I have an apt. today and one tomorrow, then we leave for California on Thursday for my best friends wedding! So hopefully I will have that time later.. :)

Much Better!

2009-04-29T21:20:00.000-07:00

Sorry for the lack of posts.. It's been an eventful week! So after her confirmed ear infection on Thursday last week, her fever still didn't subside until the next morning. Then Friday we noticed a little bit of what looked like a rash show up on her forehead. Bela sometimes gets blotchy on her forehead so I didn't think too much of it. Saturday tho, it started going down onto her cheeks and neck. By Sunday it was all over her chest, tummy, and back. I called Beth and we figured out she had Roseola, on top of her ear infection! My poor baby! The rash is an indicator that the worst is over though, and by Monday most of the rash was gone and she was feeling SO much better. Tuesday she was almsot back to her sweet little self. Ahhh, so glad to have that over with! Today I took her in to have her repeat Echo done... and guess what?! She decided to surprise us all again and have a good echo! Her pressure measurement was around 40 last week (crossing the safe mark) and today it was back down to 26! Back in the safe zone! So no cath in the very near future. Hopefully it was just bc her body was so sick that her heart was in overload. Her dr. sorta just shrugged his shoulders when he gave me the news.. I think they were surprised. I was totally prepared for bad news and a cath date.. so it was great news! The Bela roller coaster ride continues.. I hope we can keep her healthy and hospital free for a long time!
I had a trip with girlfriends planned this weekend, but I wasn't sure if I was going to be able to go because of possible heart issues, but looks like I'm going! I leave tomorrow a.m., and I'm so excited! I know I'll worry (of course) and I'll miss my little munchkins, but I know it will be so nice to have a break.. Hopfully Tanner will survive.. :)
bye for now!

2009-04-23T17:47:00.000-07:00

I took Bela in this morning after a long and kinda scary night. She was burning up all night, even with Motrin she was at 103 for awhile. She was breathing kinda funny too. Found out a couple things today.. First, not surprising, she's got another nasty ear infection, pus and everything. Poor thing. Not sure if the one she had a month ago ever really cleared up, or if this is a new one. We think something else viral might be going on also for her to be soo sick. She slept the whole way there, most of the apt, the whole way back, and didn't wake up until about 4. When she got up her fever was 104.8. She's back down and it's 5:00. It just freaks me out. But we got her started on another antibiotic (ugh), and hopefully it'll do the trick and get her feeling better. Second, and kinda surprising, they saw some heart issues. Her aortic arch was more narrowed today creating more pressure on her right ventricle (her only one) to pump the blood through it and out to the body. The narrowing also is causing both her valves to have worse leakage. It's now crossed the 'safe' mark, so a cath seems to be in the near future to balloon open the narrowing. First though, we'll redo the echo again on Wednesday to make sure the numbers weren't affected by her high fever, but sounds like either way a cath is going to be necessary soon. Not the worst news, but I was just hoping things with her heart would be the same and not worse. It always stinks to get any 'worse' news. It's kinda like getting a kick back into reality, and it just bring all the feelings of being so scared for her back to the surface. Her recent symptoms could be caused by the extra workload on her heart right now .. Because blood flow is restricted to the body right now, her lungs are getting an excess of fluid and so she's pretty congested. She also hasn't wanted to eat at all since the last time I posted. She sort of just stopped one day... a red flag somethings up.

But she'll get better, her drs will know what she needs, we'll do it, and move on. She's so darn sweet when she's sick. I could hold her all day long and let her sleep on me.. I have so much empathy for her, and also so much respect. She's been 'healthy' such a short amount of her life, yet she's such a trooper through it all. When she is feeling her best, she just shines. What a priviledge it is to be her mom.
I miss this girl..

Hopefully she'll be back soon.

Sick again..

2009-04-22T11:39:00.000-07:00

Yesterday Bela got sick..When she gets sick it hits her so fast and she gets REALLY sick. She just can't even stay awake, she has a fever, and she wont eat.. NOT good. Now I'm playing the should I take her in or let her rest game.. will she get better on her own if she just gets lots of sleep? Or does she need to be seen? I never know.. Today she woke up pretty much the same, she has no energy, just wants to be held and keeps falling in and out of sleep. Ugh.. I get so nervous when she's like this.. I hope it goes away SOON!

sweetie gwirl

2009-04-15T10:17:00.000-07:00

As Benson so lovingly calls his sister..

April has been a wonderful month. My birthday was at the end of March and although it began with a trip to the Urgent Care at 2 a.m., it was so much better than last year. Last year I was worried sick about my sweet little girl and her life. I didn't know if my days were numbered with her, what her future held.. I was stressed beyond belief having just brought her home, but realizing really quick that something was still very not right with her, and she was admitted again a few days later. It was such a crazy time, and I thought about that a lot on my birthday. It was the best gift for me to see how far she's come, and to have the overall feeling of the day be so different. The urgent care visit after she screamed for 3 hours turned out to just be an ear infection. Thank goodness. It's amazing to just get that news, something so normal as an ear infection. We'll take it!

This month she learned how to pull up on everything.. everytime I go into her room to get her in the morning when she wakes up or after her nap she's standing up, waiting for me. It's so cute!! She is scooching across the room, cruising along the furniture, and wants to walk (with my help) constantly. She's so miniature it's almost funny to see..

We havn't had a cardiology apt. in about a month, but last check up went well. Her endocrinology apt. was monday and he was very pleased with her 16 lb 10 ounce little frame. At least she's still following her own curve, however off the charts that may be.

She is eating so much better lately.. It's still not by any means her favorite thing to do, but she is taking in orally more and more every week. She eats anywhere from 1-4 baby foods a day, depending on the day, and loves to munch on little finger foods. Her problem is quantity..she will take a few bites of everything and anything, but just dosn't want to eat a whole lot of anything. So I let her eat what she wants, then we just put the rest right into her tummy. SOmetimes it's almost the whole feed, and sometimes it's just a tiny bit of food. She drinks about 5-8 ounces a day, so we're still having to give her most of her liquid through the tube. It's great progress tho, it's been amazing to see her improve so quickly. I always knew that darn tube was the problem. I can clearly see now that it hurt her to swallow. I am SO glad we went ahead with the mickey button. It has changed EVERYTHING around here. Not only is Bela so much happier, but there is a different feeling in our home.. no more stress or crying over eating or reinserting it. I knew things would be different, but I didn't know how much better it would really be.

Some pics from Easter Sunday.. She only lasted the first hour as usual, but at least we got to put her in her dress!

Bela and her buddy Mark at the St. Joe's 'heart picnic' in pheonix..

Happy Spring!

2009-03-18T20:00:00.000-07:00

The night after surgery.. all smiles with the help of a little morphine.. :)

She pulled her pulse ox off about 50 times.. setting off the monitors everytime.. it was her favorite thing to do.

Tube free and loving it!

This pic was actually taken before the button...see how well her cheek has cleared up!

Button

2009-03-07T09:12:00.000-08:00

Thank you for all the sweet comments on our last post!! The last couple days have been rough for Bela, but what kept me positive was knowing how much better this will make her life! She left for the OR room in the nurses arms looking over her shoulder at me saying 'mama, mama' and crying. Wow, I thought it was hard before, but hearing mama almost ripped out my heart! The waiting was hard, always is..not near as hard as her open heart surgeries, but still hard. After 2 hours we went up to her room to see her and she was screaming! Boy was she not happy. So they gave her a shot of morphine and she relaxed a little. The rest of that day was rough for her though... Eleven pokes to get in ONE darn IV! Getting in an IV is so darn hard for Bela! And she hadn't eaten since 9 o'clock the night before and couldn't eat until 8! Poor little thing.. After a miserable day she finally went to sleep around 9:30 and slept pretty good at night. She woke up a couple times in pain and because of monitors, but she tolerated her food all night long which was great! She was already feeling better in the morning and we got the go ahead to go home! I love quick, uncomplicated stays! She slept most of the day yesterday and went back to sleep today after being up for an hour. I'm so glad she's sleeping and keeping her food down. Hopefully by next week she'll be back to herself. Having the tube out is going to be so good for her little nose. Her congestion has already cleared up! It's amazing what the tube was doing to her nose and cheeks...no more constant congestion, bloody noses, and open sores on her cheeks. I'm so excited to have her face back!!
How grateful we are that we were just there for a gtube placement. Being there is so hard to see so many very sick babies, it brought back a lot of emotions. We are SO incredibly blessed!

Happy 1st

2009-03-04T18:06:00.000-08:00

Bela is ONE!! Everytime I think about it, I can't help but get emotional..
Over the last couple of months, there have been some really difficult things happening among our little heart friends. My heart goes out to the families of the many precious babies that have gone back to heaven recently, and the countless others who have been going through very hard situations. We pray for them constantly. I have to admit that I am sometimes terrified knowing that any given day something can happen that sends you spiriling down a very scary path. The last six months have been very good to us, and we count our blessings everyday. I cannot believe that I have an active, spunky, happy, and squirmy little one year old. I'm in awe...

getting help to blow out the candle..

just a little taste of the cake

It's been a crazy year, but I can honestly say it's been the best year of my life. Friday we got to celebrate with a party, and Saturday we were able to walk in the heart walk with so many others who are standing in our shoes. It was a great way to celebrate her birthday. As we walked the loop around the lake, it was very symbolic to me of the journey she has made and how far she has come.

She was really serious about her present opening..

do I eat it?

wow, there's something in it?

what is it, what is it?

I love it!

getting read her new balerina book by her cousins

Bela with Jersey's big sister Tatum

who me? Drama queen?

hanging out with her buddy Addison

Today is a great day because it is the LAST day Bel will have a tube on her pretty little face. We are going in tomorrow at 9:30 to give her tummy a button. I have come to really look forward to her button. I know that seems wierd, but I like that I don't have to stress and worry about her body getting what it needs. We'll still work on eating like crazy, but on those days when it just dosn't happen, I will always make sure she's healthy. She needs help with eating right now, some days she needs a lot of help. I cannot express how elated it makes me feel to know that I NEVER AGAIN HAVE TO SHOVE A TUBE DOWN HER THROAT!! Just the thought of it makes me want to shout for joy! I really can't even say how hard it has become for me latley. We had our consult yesterday and the surgeon could tell immediatley we were DONE! So she worked some magic and got us in for tomorrow. I love her already. :) She said they usually don't see babies that old with NG's still and that Bela needs it out. I fullheartedly agree!! So out with the old, in with the new. I'm a little bit nervous about anesthesia and the ventilator, but this will be so good for Bela (and for us and our sanity), that I am more relieved than nervous. We should just be there overnight and home the next day.. that's the plan anyway!

Gracie Gledhill

2009-03-02T07:33:00.000-08:00

This is one of the hardest posts I have ever had to write. Today Gracie Gledhill will go back to heaven. Her family is going to turn off her life support and say goodbye to her. She is 11 months old and is a light in this world.. We've been so touched to be a part of her story. She went in for her second surgery but they found out it would be too risky for her. So she was put on the transplant list. Three days later, a heart for Gracie came but after transplatation, it turned out that she had gotten a bad heart, and they have no other options for her. I cannot begin to imagine what saying goodbye to their baby after 11 months will be like. Join us in saying (many) prayers today that her mommy and daddy, brothers, and sister might feel strength, peace, and courage as they send her back home...

To view her blog click here: Gracie

Update

2009-02-19T13:07:00.000-08:00

Thank you to all of you who have been worrying about Bela lately... I havn't even posted about her last apt yet just because things have been so busy. My mom was visiting last week from Brazil and it was so good to spend time with her. Anyway, the echo last week showed no change, not any worse, but not any better. So we're not really sure why the sudden increase in leakage, and the medication didn't seem to make much difference. They decided not to do a cath right now however, but if the leaking gets even a tiny bit worse they'll have to do one. So we're just watching it now..

Getting an echo and watching elmo

My big girl getting her blood pressure taken...It is her least favorite thing at her appointments.

We've scheduled a consultation with the surgeon that will place Bela's G-tube for March 3rd, so hopefully that actual procedure will follow shortly. Bela now claws at her face to get the NG tube out at night...she wakes up with big nail marks on her cheeks. I feel like I am extremely close to my breaking point with it right now because I know how much it is bothering/hurting her. It seems like all the sudden she doesn't want anything to do with it anymore. This is going to be a long month for us all until it is out for good. She has really regressed the last two weeks with eating. We had her tube out for a few days to give her nose a break and those days were spent force feeding her all day, only to get about half of what she needs down her. Needless to say she had lost a little weight at her appointment. I think since those days of forcing her to eat more than she wanted to she is really not wanting to eat anything now. The only thing she likes are little finger foods that melt quickly in her mouth..

All in all though, she is doing terrific. Every heart baby is so unique and comes with their own set of challenges. I get so caught up in the frusteration of a baby that refuses to eat (and believe me it's frusterating!), but I need to remember and acknowledge the miracles that we've seen in getting her to where we are at... There is a sweet baby girl named Gracie that is a month younger than Bela that is having a very hard time right now. She's in the hosptial waiting for a new heart. If any baby has had challenges and miracles during her little life, it is Gracie. Her story is faith promoting and inspiring.. She needs another miracle!

Just to let you know.. We will be participating in a heart walk for the American Heart Association on Sat. Feb. 28th (Bela's birthday since she dosn't actually have a birthday this year), and we'd love for anyone who'd like to walk with us to join us! We'll be walking with all the other babies from St. Joe's and honoring them for their fight against congenital heart defects.

Baby Jake

2009-02-10T09:32:00.000-08:00

Baby Jake passed away last night.. Please say a prayer for his family today... Thank you!

what does a mom do all day?

2009-02-03T20:40:00.001-08:00

So this was posted on my sister-in-laws blog the other day and I just got around to reading it. It is hilarious and so true! To all my friends out there that hear from me way too little...I still love you DEARLY!!

Thursday's appointment

2009-02-03T09:19:00.000-08:00

I'm a little behind in posting about Thursdays apt.. It was okay. Her echo didn't look as great as it has been since her surgery... darn. I got so used to hearing that her heart function was looking great that it stunk to hear they saw something that concerned them. Her valve is leaking more, it has always been mildly leaky, but it was moderately leaky during the echo. Her pulses were still great, but the echo's don't lie.. So they've increased her blood pressure medication in hopes that it will take care of the leaking. We have to go back in 9 days for another echo to check it. If it is still leaky, we have to do a cath. We weren't planning on a cath until she was like 2, so that was kinda dissapointing to hear. But it's not for sure yet.. we're hoping the meds take care of it for now and we can hold off on the cath. The last couple of days she has been a little sleepier than usual and not eating as good. Maybe it's just me being worried, but I have noticed a little of both those things. She did put on some good weight though.. finally 16 pounds!!

First pigtail..

2009-01-29T11:19:00.000-08:00

Even better today!

2009-01-21T08:30:00.000-08:00

We were able to come home after the apt. They were a little unsure of what to do with her, there was talk of admitting her for IV nutrition so we could keep the NG out for a few days and let her nose heal, but we decided against it. Beth inserted her NG and then her nose bled for the next 45 minutes. She could see how bad it was. So she was put on flonase and zyrtec to try and stop the congetion and open up her airways so she can breathe and hopefully heal faster. I gave her one dose last night and the difference was huge. I put her down last night at 5:45 and she is STILL asleep at 9:30! She was so exhausted from not sleeping and she can fnially breathe! When I checked on her this morning she had no snot in her nose! You can still hear it when she breathes but if feels so nice to see her get some relief after 2 months. So we'll continue this for a few days and hopefully she'll fight through this virus she has and get over it quickly. I just got her RSV swab results and they were negative!! :) Her fever is gone this morning finally.. Thank you for your prayers and thoughts!! You never know what these things might turn into, and I sure hope we're past the worst.. It is so stressful when she is sick..the fear of knowing that her life is so fragile and not knowing whats wrong and what we should do when it's 2 a.m. and she is so sick. It's nice to breathe a little eaiser now.

We did get some G-tube news that was a little disappointing for me. She has to be a month out of any illness. So we have to get her over this, which could take who knows how long, then wait a full 4 weeks!! I was hopeful we could just get it down and over with and be done with the NG so she could heal, but it looks like it'll be a little while. We'll get through it though.. And who knows..maybe in this next month and a half or so we'll see another miracle with her eating.. But if not, we at least have a plan set up. It feels good to at least have that. Either way in a few weeks she'll have it out for good!

Better Today

2009-01-19T18:58:00.000-08:00

Thank you so much for your sweet, encouaraging comments, and for the suggestions about the G-tube. I think we are going to go ahead and do it, I feel that it is what is best for Bela at this point and the right thing to do. It is going to be very hard for me to hand her over again though, even for a small procedure compared to what she has been through. I am dreading sending her off with the surgoen, but I am really looking forward to life without an NG! Without the daily frusterations and pain that it involves. I can't wait to see all of her face and let her cheeks, nose, and throat heal. I can't wait for the enormous pressure I feel to get her to eat (and get the tube out) to be gone. Once the G-tube is healed it won't bother Bela at all, she won't even know it's there, so we'll be able to just take it at her pace. We'll still work hard at getting her to eat, but go as slowly as she needs it to be able to make eating a positive, enjoyable thing again, something she dosn't have to be afraid of. Now that I have made the decision I'm ready to go ahead with it, and I feel so much relief.
We've managed to stay out of the hospital...so far. Last night she was still burning up all night. In between motrin doses it got up to 102.5. With motrin it would linger around 100.8. She slept horribly and coudln't get comfortable.. When she woke up from her first nap around 10 she seemed a little better. She was at least perked up a little and could hold her head up. Her color looked much better today too. She still had a temp all day but it stayed around 99.8. I'm hoping for a better night tonight so she can rest. We started her on azythromycin yesterday and I hope that it helps. Her last antiobiotic did nothing, so if this is still viral it won't do anything for her. Her drs want to see her first thing tomorrow so we're going in for some tests and to see what her sats are. I finally turned my pulse oximeter monitor in a couple weeks ago and I don't like not knowing what her saturations are. I'm used to being able to check and it makes me so nervous. They're worried it's RSV... Oh I pray it's not!! It's just plain hard to have a sick baby, and when I know she's so fragile and weak already it's so scary. I wonder if it will always be like this, but I so hope not. I'll post after her apt tomorrow.. hopefully we'll come home.. :)

Concerned..

2009-01-18T12:45:00.000-08:00

...That is how I'm feeling today. This weekend the cold that Bela has had since our last hopsital stay the day after Thanksgiving has all the sudden gotten a lot worse. She is just plain miserable. She is so junky, her nose is constantly full of yellow snot--so she can't breathe very well and her little lips and hands turn blue. She has a yucky cough, and worst of all, last night she spiked a fever.. Since she's had this cold we've watched for other symptoms like de-sating, fever, difficulty breathing, or vomiting and until today thankfully she's had none of them so we've been able to stay at home and try to get her well. But no matter what we've done she just coudln't kick it. And last night when she felt hot when I went in to get her I felt my heart sink.. So now we just wait and see what direction she goes. It has stayed right between 100-101, and if it goes above 101 we have to go to the hospital. It shouldn't be that big of a deal to go to the hospital, she's spent so much time there, but for some reason today it's literally making me feel sick. I CANNOT describe how horrible it is to watch my already fragile, sick, and miserable baby be put through every test imaginable when all I want to do is let her rest and cuddle her at home. Because she's at higher risk for infections in her blood we have to be cautious and have her examined everytime but it just plain STINKS!! Please say a little prayer for her today...
We think a major reason for all the sinus problems she's had is her tube. In my last post I mentioned taking breaks from it, but we havn't been able to latley because she hasn't been wanting to eat anything. She just feels yucky and so the tube has had to be in contantly. She pulls in out an average of 3 times a day and it is so aweful putting it back in all the time. I think something is really wrong with her nasal cavity or her throat or something because lately when we put it in she screams in pain more than usual. She always cries, but latley is seems to hurt her really bad. Yesterday on the 4th insertion Tanner pulled out a bunch of blood. It is so horrible to know that I am hurting her, and I have no idea to what extent, but I have NO other option to feed her. And when she is sick is when she needs her fluids the most. So it's been a very stressful weekend for all of us. I called Beth our NP and she is going to set up a meeting with the surgeon that would place a G-tube for us. I think it is our only option at this point. SHe is just not close enough to getting the tube out, and I think it is hurting her more than we even know. I really believe that she will not make much progress with her eating until it is out. She has nothing but bad emotions associated with eating because something has forcefully been shoved down her throat her whole life-- why would she want to choose to put something down it? Especially if it is sore? Anyone out there with G-tubes have any advice?

Catch up

2009-01-14T19:31:00.000-08:00

Here's a TON of pictures of the last month or so.. My mom has been asking me to put up pictures of Christmas since Christmas morning..sorry mom. Here they are..

Some random shots.. in some of these you'll notice the absence of the very annoying NG tube!! She has been able to have "NG vacations" as her cardiologist put it because she is now eating baby food pretty darn good. The vacations only last about 3/4s the day for now, but it is SO nice to not be 100% dependant on that thing. Whenever we take it out her congestion and cough go away and they come right back when it is put back in... :( Someday soon I hope to be rid of it, but she still has a ways to go because she WILL NOT take her liquids!!

This is my bugger on his first day of PRIMARY!! I have a child in primary.. super wierd for me..

We came home on New Years Eve to this:

She didn't want to miss out on ringing in the new year... It is the only night in the last 4 months she has woken up like that. I think she must be the most excited of anyone that this year (shouldn't) hold any surgeries for her!! It's going to be a great year!! It's been so crazy for so long and it is really starting to calm down a lot. She is such a happy and social (if mommy's close) baby girl. She waves hi and blows kisses.. She is an absolute joy and just melts my heart everytime I look at her.
We had a cardiology apt. and a endocrinology apt this last week. Both appointments went great. She is on the charts for her length!! (3rd percentile, but she is ON) SHe is not however on for weight, in facts she's sorta been dropping off a little lately, but she is still following her own curve pretty well and everyone is happy with it. She is 15 lbs 5 ounces. Her heart function looked great, great pulses, great sats, great x-ray. It couln't have been a better cardiogolgy appointment(besides the fact the it took 4 hours). I'm always so nervous before those apts that we might get bad news, getting good news is a HUGE relief.
We are counting our blessings, always realizing the God is in charge of this sometimes difficult and crazy, but beautiful life... It helps to remember that..

Thank you to those of you who have prayed for Jersey girl's family.. They have been incredibly positive and strong thoughout the last week. Although I can't even imagine the difficult emotions they have experienced, I know from speaking to them that there have been many blessings from this. They still need love and prayers...thank you so much!

Til next time.. (hopefully sooner)..

Angel Jersey

2009-01-06T19:42:00.000-08:00

This is Tanner after several months of not posting. It has been a hard two days for a heart parent. One of my dearest friends from high school lost his 6 week old daughter Jersey yesterday. She was born with a heart defect but had severe lung and kidney issues. We love Chris and Heidi and ask all our friends and blog followers to pray for them this week.

Happy Girl

2008-12-14T20:47:00.000-08:00

It's been awhile since I've updated on how Bela is doing. It's so nice for me as a heart mommy to read up on the progress of other little ones to realize 1)I'm not alone and 2)she's doing some 'normal' things (for a heart baby).
I can say (with a huge smile on my face) that Bela is doing BETTER THAN EVER, and life is getting so much easier.

Things that have changed since last update:
--Her entire life, I had to feed her every hour..it was the only way she'd keep down more of her food. It's all I did, finish one feed, start another. Over the last couple of months I have slowly increased her amount and have gotten her up to 5 ounces at one time!! It's changed my life! So now I just feed her 5 or 6 times a day over a half an hour and it's amazing.. I have so much time back!
--She still dosn't want anything to do with drinking her liquids, no bottle or sippy cup can get near her lips. I'm coming to grips that she will have the NG for awhile and most likely a G-tube. I'm not sure what to do about it and her lack of eating has been pretty frusterating. I'm hoping and praying that soon she'll decide eating is not so bad.
--She is however, starting to take more bites of baby food. Three days ago was the first time she actually opened up her mouth, choosing to eat. Three times a day I'd put her in her chair for what usually was a VERY frusterating 15 minutes and try everything I could to get a few bites down her. She just did not want to eat. But halleluja, every now and then she will open up for bites, usually just a few and then she's done, but that is a GREAT start! I've learned too that pears and sweet potatoes are all she likes. Bananas are NOT okay with her. She is also starting to eat little finger foods, yogurt melts being her favorite. That was actually the first thing she ever ate. I am SO happy (happy dosn't do it justice) about this progress. I'm hopeful she'll keep eating more and more..
--She's rolling all around and ALMOST sitting. She'll sit for seconds, sometimes up to a minute but still toples over most of the time. She still dosn't love tummy time by any means and usually just rolls right onto her back. So the crawling thing is not really coming along at all. The problem is I get about 3 minutes of floor time out of her before she's crying to be picked up again. I'm the weakest of the weak when it comes to hearing my babies cry and so I give in and pick her up every time. She is the happiest in my arms and MY arms only. This month she decided that no one else is good enough to hold her, not even her daddy who used to be her most favorite. So if she is not sleeping, she's in my arms. Not the best for learning to crawl, (or for my back) but I have to admit I enjoy the favoritism, and I LOVE to hold her..
--Because of her favoritism, it is impossible for therapists to work with her. we are starting feeding therapy this week and I'm gearing up for a disaster. She dosn't like other people very much, especially people who try to make her work. Her home therapy was not working so I actually asked for a new therapists hoping that might help. We'll see..
--Perhaps the most welcomed change...I'm not sure if everyone knows the severity of her reflux.. She threw up every single day of her life about 4-8 times a day, it was a rare thing if she did not throw up a feeding. About 4 weeks ago she just stopped. It was that quick. I don't know what did it, but I am sure glad for whatever it was. That more than anything else has changed life around here. I was so tired of watching her throw up, forcefully, and then scream in pain after.
--We were asked to participate in the St. Joe's Miracle Tour last month and were asked to share Bela's story. After her cardiologist introduced us and explained from the medical side of things how bad the odds against Bela making it looked, we got to show her off and share our little miracle with everyone.. I think it was one of those things that touched us way more than anyone else that was there. Revisiting some of what we went through humbled me. The Lord has truely blessed our family this year.

We were able to make it to California to spend time with me family and it was wonderful...the highlight for me was just the fact that she was 'healthy' enough to be on a trip.. I kept thinking about that the whole time and marveling that she was. I don't know why, but I still have so many memories and flash backs (maybe because this time of year last year was sooo awful) of doctor after doctor telling us that her prognosis was not good. Don't expect to have her long, if at all. I guess I'll remember that her whole life, and its a good thing because it reminds me constantly what a miracle we've been blessed with. I was very emotional at my parents ward when we were home because so many people came up to me so excited to finally meet Bela, the baby they prayed for. Everytime someone tells me they pray for Bela I seriously get a lump in my throat. Someone I admire so much told me that it was an honor for her to have been able to be near such a noble spirit. I was very touched by that. It was a great trip.. We even made it to the beach and Disneyland. Bela was an angel the whole trip, I would have to say she did better than her big brother..:)

I hope everyone is having a very merry Christmas time..

Maybe next year she'll like Santa a little better..

2008-12-07T20:10:00.000-08:00

Pray for Baby Jersey!!

Baby Jersey

2008-12-03T07:44:00.000-08:00

Under my 'heart' list I've added Baby Jersey. She is only a few days old and today will have her first open heart surgery.. sooner than anyone anticipated. A lot of you may know her parents Chris and Heidi Anderson. Chris is one of Tanner's friends from highschool, and this weekend when we were at St. Joe's we were right next door to them. A lot was going on with Jersey while we were there and it was finally determined that she just needs to have her surgery. If you know them, (or don't know them), please pray for them today and visit their site.. It is so helpful to have the support on the scariest day of your life..

She's out!

2008-11-30T19:22:00.000-08:00

All is well again around here... our sweetheart is sleeping peacefully in her own crib tonight. She woke up feeling so much better today and nothing had still grown from the cultures they took, so they sent us packing. Tanner had her home before 12...he must have been very persuasive, I never seem to get out of there that early. But it was the quickest stay and easiest discharge we've had yet. We still have no idea what made her so sick that day or so darn sleepy, but whatever it was, we are sure glad it is gone. We were planning our first little trip to CA on Friday (my parents are coming for a visit from Brazil!) but after Friday I was sure we weren't goign to be able to go, but by the way she is acting now, it still might be an option.. I sure hope so!

A little scare..

2008-11-29T15:45:00.001-08:00

We've found ourselves here once again..yes, here meaning at St. Joe's. All seems to be well as of now...
Bela went to sleep Thanksgiving night around 8 acting as normal as could be. During the night she woke up moaning a little and i got a temp of 99.9. By morning I took it at 100.6 and she just did not want to wake up. She slept until 10, woke up for a total of 5 minutes then fell back asleep until almost 2. She couldn't even stay awake, and her little hands and feet were cold and fairly blue. So needless to say we were worried. She was acting eerily similar to the ways she acted when she was in heart failure so of course we didn't wait around too long. We called our NP, and were on our way to Banner Gateway because we were thinking she was dehydrated. I had changed a very dark urine diaper that morning, so we were going in for some IV nutrition just to get her fluid levels up. when we got there though she seemed worse and her temp was up to 102.6, so our doctors were contacted and they told them to ambulance us out here. So we had an eventful ambulence ride and got directly admitted. They took urine cultures and drew up blook work to see if anything would grow and so far nothing has. She was poked a lot last night, they finally got an IV in her foot that they havn't touched since. Turned out her urine had no signs of dehydration at all so no IV nutrition was needed. So it made eeveryone think she must have a viral infection. So after her many pokes, she fell right to sleep and slept great through the night. I watched her wake up this morning wondering how she'd feel today and got the hugest smile.. she is feeling SO much better. It's like overnight she got better.. She is completley back to herself today. I have no idea what made her that way yesterday, but whatever it was it didn't stay long or turn into anything, THANKFULLY! They want us to be here at least 48 hours to allow more time for the blood sitting downstairs in the petri dish to grow anything, but I've got a good feeling it won't. Hopefully we'll be back home by Monday.. On our way to the hospital I said to Tanner, gosh, I thought we were done with this to which tanner replied, we're never done with this, this is our life. Oh yeah, how quickly you forget...
Not really the way we had planned on spending Thanksgiving weekend, but always better to be safe than sorry... We're so grateful, SO grateful that everything so far has turned out okay..
No camera so no pics this time..we left in a hurry! Sorry!

CHIEF Graduation

2008-11-09T19:19:00.000-08:00

Bela Milne graduates! This was a celebration at St. Joe's honoring the babies who graduated from the CHIEF program this year (babies in the CHIEF program are those with the most severe CHD's who needed an intense home follow up program). We used to be seen once a week, sometimes more, and I would talk to Beth, our amazing nurse practitioner practically everyday before her surgery and for about a month after it. But Bela has now 'graduated', meaning she is much more stable and doesn't require being watched sooo closely! It is such a WONDERFUL feeling!! We even just moved to a MONTHLY schedule and we have clearance to travel! (not far and not by plane, but we'll take it.) So, Bela and all her miracle heart friends got their diplomas and graduated..

This is the famous Beth.. She has been as much a part of our life this last year as our mothers have been. She has put in countless hours (at all hours of the day and night) into Bela.. We couldn't have done it without her. THe next picture is her cardiologist, Dr. Pophal. I was hoping to get a picture of her surgeon as well, Dr. Nigro. These three people are our heroes..

Notice Bel looking at her doc.. she's a big fan too.

This is the President of St. Joe's holding Bela. They were taking picture for publicity and Bela was chosen to be in her arms.. She did great and gave lots of smiles, although I didn't catch any on my camera..

This is Bela's boyfriend Mark.. She always gets so excited to see him. Mark and Bela had their 2nd surgeries a day apart so they're good buddies. Little Mark is still in the hospital with some post op complications, but he is getting better every day.. He's been such a trooper..

It was a simple thing, but meant more to us that I can say. It was a celebration of life and it was a beautiful experience to be a part of.

Halloween and hanging out

2008-11-09T19:04:00.000-08:00

Halloween with my little tink

eating her wings

Bens and Drew trick or treating

Playing at the park with Drew

Random shots of the Smella (her affectionate nickname...not because she smells, just because it rhymes with Bella.. she smells really good.) You can see how she is growing (14 pounds 7 ounces!!!) and how well her incision is healing up.. and what a little beauty she is.

Eating is such hard work!

2008-11-09T16:51:00.000-08:00

Here's some shots of Bela working on her eating.. She's still not too sure about it, and she gets SO tired after we work on it for jsut a few minutes. About half of the time she still vomits when food goes in her mouth, but it's getting a little better. It can get very frusterating..the most frusterating part is that she dosn't like to swallow the food, she just lets it sit in her mouth until her saliva mixes with it and it just drips out of her mouth.. Ugh.. She is really determined to not eat. We have to just keep at it... And as far as the bottles are going, that seemed to be a one time only thing..she must have been really out that night to not fight it because every time since then that I've tried, she won't take it. sigh..oh well.. She also failed her swallow study again, she still needs her milk to be about honey consistency. We were hoping for better results because aspiration is not something we want to mess with again, but I'm still hopeful her swallow will get stronger over time...

She's such a little mini in her highchair.

She took a bottle!!!!

2008-11-02T20:05:00.000-08:00

Bela just took 20 mls from a bottle!! I know that's less than an ounce, but that is HUGE for us!! I can't believe how happy it made me to give her a bottle and have her take it. This is only the second time she has even sucked on a bottle, the first time tho it was only a couple seconds. The only way I can get her to take any is if I go in while she is sleeping during the night, pick her up and offer it to her while she is pretty much out of it. If I offer it to her during the day she won't take it. I used to think she just forgot how to drink from a bottle, but now I know that she knows, she's just being stubborn and dosn't want to take it.. :) Actually, I think she is scared of drinking from a bottle because of all the vomiting she does. I was told at my last apt that I should probably just give up the bottle feeding and work on the spoon feeding, but I just couldn't do that. If I can just get her to take the bottle with thickened milk, we can get her tube out sooner. So I kept at it, and I am so hopeful that she'll get it. She is doing better at the spoon feeding too. She will have a really good eating day, then the next day she'll vomit the second the tiniest taste of food hits her lip like she complelety forgot how to do it. It's been a couple months that we've been working on it, and she has made good progress. She used to vomit every time and scream. Now she will actually take a couple bites if I work her in slowly enough and if she gets enough praise while she's doing it. She's high maintenance even while eating... But she is getting over her fears little by little. She still gags when I stick a bite in her mouth, but most of the time lately it dosn't end in vomiting.
I have SOO much to update, and new pictures to post, but I just had to document this night.. I havn't been this excited in a long time!

Update on Bela

2008-10-17T08:54:00.000-07:00

Bela is doing great!! I feel so much weight lifted each day that she continues to get better. You can just feel the difference in the atmosphere around our house...it is so much different lately than it has been for the last 7 and a half months. While there are things that are still very hard, things are much better. I of course will always worry about Bela as her future is still very unsure, but I don't feel that constant, sick to my stomach worry that has been my companion for the past year or so since we found out about her delicate condition. It was actually almost exactly a year ago from right now that we found out. It has been a long road, seems like FOREVER ago, but it is SO wonderful to be where we are at. She is just really coming alive latley and is so interested in checking everything around her out.. She is laughing now but Benson is usually the only one that can get her to laugh. It is a beautiful sound to hear... I love to see her happy, I longed for it...

Bela's hair right out of the bath is SO curly!! She definaltey got the Woffinden curl. For those of you who don't know my family, every one of them except me has tight ringlet curls. I always wondered if one of my kids would get it, and I think Bela might have it..

She is still coming along really slowly with eating... SHe has no interest in anything whatsoever in her mouth. SHe forgot what her mouth is for... I keep trying to tell her she'd be so much happier without that tube down her throat, but we've still got a long road ahead of us until she is eating enough orally to get rid of it. We are going to discuss the possiblity of a G-tube tomorrow at our appointment... I have mixed feelings about it. While I am extremely tired of reinserting her NG tube down her throat and the constant rashy cheeks, I would love to be able to avoid a G-tube which would require another surgery. She will have another swallow study done in a couple of weeks and then we'll be able to really start working on eating with a speech therapist at home. I really hope she can remember how to eat and make some good progress there so she dosn't have to get one...

These two pictures are kinda funny but I couldn't really get a great shot of her new thing: standing!! She loves to be standing but it is so funny because her legs are the smallest little bird legs... She'll be fussy laying down and all I have to do is lift her up to a standing position and she's so happy.

We have an appointment tomorrow and it will be a long one, complete with an echo and lab work. Hopefully we'll get all good news. I'll post her weight when I get it..I'm hoping for some good growth. Last apt. she had lost weight, but she has done much better keeping her food down the last three weeks.
Other than that, we are just enjoying being together. Bela is such a joy to have at home, we love her more than we can say. Thank you so much to everyone who conitinues to pray for her and follow her story. We are so grateful for your love and support.

These sweet eyes of hers really tell a story.. :) We love you Bela girl!

A vida feliz

2008-10-08T22:15:00.000-07:00

Tonight I feel so happy. It is a result of having a moment to myself tonight to reflect on the 25 years of life that I've lived, and in particlular, the last almost 3 years that I have been a mother. As a child, I always dreamed of being a wife and a mother, so much so that when I got a little older I remember including my future husband in my prayers... that he was trying to live a good life in hopes of meeting me, like I was for him. I dreamed of my children that would one day be mine... I didn't know what they'd look like or be like, but I knew that it didn't really matter, I would love them. I didn't plan on having a critically ill baby, spending months in the hospital, or the pain of watching her suffer, but life never ends up just like we planned it to. And that is okay. Those four little words have taken me awhile to say and then to really believe them. It's okay because, although it's not what I'd planned, it's not bad, just different. There is so much good in my life, and I will choose to focus on that. I just had to put Bela's tube back in because she pulled it out, check it for correct placement, restart her feeding pump, mix milk for her night feeds, and give her 4 meds. And then I just got to stare at her for awhile, kiss her sweet head, and marvel at how blessed I am that she is mine. Everynight before I go to bed I like to go into my kids rooms and just watch them sleep for awhile. Most nights it is an incredibly powerful moment for me. It is usually then that I realize that I am living my dream... how lucky am I? My husband is more than I ever dreamed he would be. I think sometimes I take for granted what we have.. we are two people who complete eachother perfectly. He has been my strength.. I am thankful tonight for him. I am thankful that I have a beautiful son and a beautiful daughter. I am thankful that Bela is here with me. It's hard to put into words what it feels like when I look into her crib and see her smiling up at me when there was a time I didn't know if I'd ever get that moment. For that reason, every moment becomes so special, and it makes life incredibly sweet. Without all that has happened, I'm not sure I would understand that as well as I do, or stop to think about it as much as I do. I don't think I'd take the time as much to treasure the simplest things in life that are the most important and precious. Watching Benson and Bela play together the last few days has been one of those precious moments for me. Benson is starting to let himself get attached to his sister, and she is quickly becoming his best friend. Bela is doing wonderful, she is eating better, sleeping better, and most importantly, she is feeling better. I am enjoying her so much and feel like we are finally just starting to get to know eachother. I have longed for this day to come, and I really believe the worst is all behind us and the best is yet to come!

Playing together.. Benson is sharing his most favorite things with her, but... I'm not sure she thinks they're as cool as he does..

Slow progress..

2008-09-29T14:53:00.000-07:00

So slow...if you blink you might miss it. But it's definaltey getting better, and we'll take every little bit of progress that comes Bela's way...
Anyway, I keep thinking I'm going to get some time here or there to write a good post on the happenings around here, but the time just never seems to come. So I'll use whatever little time I have left before Bela wakes up to write a little something. It's been a hard, sometimes very frusterating week. Bela is supposed to be getting better, but somedays it feels like she's getting worse! She still continues to throw up, about the same amount if not more than before. We took her off formula because it got to a point where she just wasn't keeping anything down and she seems to do much better with just breast milk. I add a little rice cereal to the milk since she should be eating that now. She throws up still, but seems to keep much more of it down. I feed her every hour for 15-20 minutes so it seems like its all I do! Especially when she throws it up...I get her cleaned up and do it all over again. We have seen improvements in the last few days since we made the change so I hope she can keep that up. We got her off all her medications that she was addicted to just a few days ago and I've noticed lots of improvements since then too. She still isn't sleeping very good and I'm sure it has a lot to do with the throwing up since she is never full and content. She takes maybe two 15 minute naps all day. I try soo hard to get her to sleep, then 15 minutes later something wakes her up, whether it's to throw up or because she's in some kind of pain. I hope that gets better, for all our sakes. She just likes to be held and walking around, so it gets very tiring, and by the afternoon she is just so exhausted. She is still sleeping okay at night, she does wake up and throw up sometimes, but she sleeps pretty good. We're heading in the right direction, it's just a long road...
It's still just so wonderful to have her here, although she is my drama queen and is extremely high maintenance, she is an angel and we love her to death. She has the ability to just comptletley melt your heart with her smiles..
We have our second apt. with the cardiologist tomorrow since the surgery and I hope we get all good news. I think we will...she seems to be recovering little by little. Her coloring looks much better and her breathing sounds better too. She paralyzed a vocal chord while intubated so she still sounds hoarse, but it'll come back on it's own in a few more weeks. She probably won't have gained much weight from all the throwing up, but as long as her heart function is good, all is well. We'll work on the feeding issues.
SHe's started some therapies, but they don't do much work with her yet since she is still in recovery and has some serious stranger anxiety...wonder why. HOpefully we can start speech therapy soon and get her eating even a teaspoon orally. That would be a start!
So we're doing good...in survival mode most days, but we are getting through and are being blessed along the way with some very sweet blessings. Thank you for being concerned with us, lots of people have called and asked how things are since I haven't posted. It's really hard to get around to updating when she dosn't sleep, so I'm either feeding her or holding her pacing the house... sitting does not work for her. It'll be a great day when I can sit down again..:)
Thanks for all your continued help to us...I know it's been 7 months, but we are still grateful for any help we can get!

Hey...that turned out to be a pretty lengthy post! Til next time, here's some pictures of the last couple weeks...

this is probably my favorite picture...she loves her brother..

and her brother loves her. It is so nice to not be so scared to let Benson get close to her for fear of her getting sick.

I realize there are a lot of bumbo pictures, but she is just too darn cute in that thing.. She only lasts for about 3 minutes before she decided she'd like to be held again, but it's a start..

My brother Jordan and his wife Lauren welcomed their first baby into the world last Friday. I got to be there for the birth and it was a very emotional experience for me. He is just beautiful and perfect. I was amazed the whole time at how calm everything seemed to be and I decided that I'd like to do it that way next time I deliver..:)

Benson likes to be 'just like Daddy!'

Her tiny little hands and feet... But look! Her arms are filling out a little! :) I love how she looks posed for these pics.

One week home

2008-09-16T20:38:00.000-07:00

I've had lots of worries on my mind this week. I think I had this plan in my head that after we came home from the hospital after the Glenn that things would be 100% different. But I forgot about that fun period that lasts about 2 months called recovery. Normally we're in the hopsital for all of the recovery period and then some, but this time we are definatley doing the recovering at home. Which is good, and bad. It's hard to watch her go through withdrawals. She shakes and vomits and just looks downright scared. We came down on the dose a bit and it made things worse, she has been throwing up every feed since, so we have to go back up.. It's a little discouraging since we don't get our Bela back until those meds are gone. IT's okay though, we just have to move a little bit slower. Her breathing has been very loud and it seems sometimes like she is trying so hard to breathe. Her oxygen sats have dipped into the 60's when she gets really agitated and she turns an awful color. So we took her in today and we actually had some good news. Her heart function looks great and there was no fluid around her heart or her lungs. So they are all just normal recovery things that will just have to get better over time. I was glad to hear that they are normal and expected. She will just need her time, probably about 2 months or so to be all better.

And then there are the meds!! 10 of them at 6 am, 7am, 8 am, 9am, 12pm, 4pm, 8pm, 9pm, 10pm, 12am, and 4am. Around the clock. The nurse told me today I looked tired and I said, 'have you seen her med and feeding schedule?' But her meds will slowly be weaned down and eventually she should only be on about 3 or 4.

I am so looking forward to finding some sort of normal groove to my life. We don't have to go back to see the doctor for another 3 weeks...that seems like forever!! Hopefully Bela will allow that... :)
Some things I'm looking forward to:
Finally getting around to potty training my almost 3 year old.
Being a full time resident in my home now instead of a visitor from time to time.
SHOPPING for Bela!
Holding a calling in church.
Sounder sleep, and more of it.
Weaning meds.
Getting rid of the darn, beeping pulse oximeter.
Doing another swallow study and hoping for good results to be able to start bottle feeding again.
A stronger baby with every passing day.
A lot less stress.
Seeing my friends, hopefully I still have some of those :).
Spending more time with my boys.
Less vomiting, more growing.
Going back to church with my family of four.
Doing my own grocery shopping.
Being able to go outside and not die.

Here's Bela Boo this week...I must say she is looking fabulous for 3 weeks out:

This is Benson sleeping in his "Bat suit" as he calls it. Daddy brought it home with him from work a few days ago as a surprise for Haloween and Benson hasn't taken it off since, except to wash it once. He even wants to sleep in it.

This is what happens lately when I try to take a picture of Benson:

At least I got one! I can't get over how dark Bensons eyes are and how light Bela's are. Some kids come out and look like clones of their parents, not mine!

We're so blessed and are very grateful for those blessings. I'm so humbled and touched at the comments that are left on our blog. I am so amazed at how many lives have been touched in some way by our sweet Bela. We know that the Lord is using her and this experience to teach us and to teach others about patience, love, understanding, compassion, strength, endurance, and the beauty of life, now and in the life to come. I hope that each one of you that reads this has been able to see the hand of God in all this and the love that He has for each of his children. Prayers really do get answered...
Of all the things that I know to be true, I have been most grateful to know that I have a Savior that suffered and died for me, not only for my sins, but also for the pains and sorrows of this life. Through him, I have come to learn that we can recieve strength when we seem too weak, comfort when it gets too hard, and help when our burdens just seem too heavy. I have prayed many many times for Him to take away Bela's pain and suffering because He has already felt all that for her. And each time I do, I feel so much peace that He is doing just that. How blessed I am to know that!

2008-09-11T21:22:00.000-07:00

Some of you might already be aware of this, but we are home! We got discharged last night and have been busy adjusting to life at home again with new meds, schedules, and drs orders, but we've been LOVING being together. I woke up this morning and immediatley smiled, knowing that both my babies were asleep in their own beds in their own rooms. Tanner and I are actually still having a hard time believing that this is all real, that we are really home after two short weeks. What was supposed to be her most difficult surgery and recovery actually turned out to be the shortest stay we've had so far. I feel like someone is going to call and say 'just kidding' any time now and we'll be back in room 10 in the ICU.. I just can't believe how well she did and how fast she recovered from such a major surgery. We weren't quite sure what to expect, but this was definatley not it. The only way to explain what happened I'm sure were the countless prayers offered on her behalf and the many tender mercies of the Lord in blessing her with healing. I have seen His power throughout her short life many many times. There have now been 8 separate occasions that her life has been preserved. That is extremely humbling. I am just so grateful for the blessings we've been given and for the miracles that have taken place.
Bela is still going through some withdrawals so we have her on a month weaning schedule at home. She's not back to herself yet, she's very sleepy and when she is awake she is very spacey, but we hope to have the real Bela back very soon. I can already tell that she is stronger though.. She has thrown up one time in the past 4 days and that was because she got two feeds too close together. Its been amazing.. all I have ever known of Bela is at least 3 huge throw ups a day, each one consisting of about 3 or 4 seperate throw ups, and so I'm not quite used to none yet. I think she will grow so much better now.. YEAH BELA!!
I'll post some pictures of her home soon...thank you all for your prayers and concern on our behalf.. we love you.

A Picture Post

2008-09-09T09:48:00.000-07:00

Since pictures say a thousand words, I think these will convey to you HOW MUCH BETTER our little Bela has gotten over the weekend! Sunday and Monday have been very tough withdrawal days for her, but today they seem to be getting a little better. Probably because yesterday they decided to give her more meds for a couple days and then try to slowly wean again. She couldn't handle coming off them the first time. She couldn't stop her little body from shaking and kicking, her eyes were plastered open, and she is doing this weird hacking, gaging thing and keeps throwing up her feeds. It's been really hard to watch her go through them, but they are definatley a part of heart surgery. After you get your heart fixed, you go through drug rehab. So now we just work on getting little miss Bela off her drugs (we'll probably still come home on some and continue weaning from here), and then get feeds figured out and we'll be able to come home!

She had a lung profusion study done yesterday and it looked great!! Better than they expected it to look I think... They were worried about her left lung profusion, and it actually looked even better than the right lung! Go figure...

I think she's been held nonstop since Sunday...it's too hard to put her down. We all take turns and she is loving it. It's been a great weekend, full of lots of progress. She got her oxygen cannula off and her central line out of her neck (you can see it in the first picture of her...it's a nasty little thing). All her meds are off now execpt her home meds and two that she is still trying to come off of.

We got this adorable onsie from some friends of ours on the floor. They have a little girl one month younger than Bela that was the second hybrid case after Bela. SHe will be having her Norwood/Glenn procedure done on Thursday. Please add her to your prayers this week because little Addison already had a different surgery a couple weeks ago that didn't give the results they'd hoped for. So now they've decided she needs this surgery instead, so she has gone through more than she needed to. She has just almost fully recovered from surgery, only to go back in to the OR for an even bigger one. They are an incredible family.. Addisons story is at www.caringbridge.org/view/addisontams. Thank you!

Sleeping Beauty

2008-09-06T20:38:00.000-07:00

Dad here... Bela has had another great day. She has slept most of the day and for the most part has remained pretty calm.

We found out today about 2 other HLHS and Turner's babies that were born and passed away within the last month or so. We count our many blessings and were again reminded that Bela is an absolute miracle. I am constantly asked by friends, neighbors, and even business associates, how she is doing. I usually struggle to explain what she has been through or is going through that day, but now I know my response, MIRACULOUS! Today they took out Bela's art line and hopefully tomorrow the central line will get taken out. Another good day.

Avery was able to hold Bela for the first time in 11 days. Tomorrow will be my turn.